A week ago, I was starting to feel a bit more stable after I’d weaned off a medication that was worsening symptoms from my other conditions. I decided to take advantage of it, even if only in a small way.

On what felt like a good day, I made rice in my Instant Pot, planning to use it for fried rice for my family in the days ahead.

That rice is still sitting in containers in my fridge.

Because the very next day, pain hit me so suddenly and severely that it quite literally knocked the air out of me and knocked me to the floor, writhing.

My right hip and upper thigh seized in an extremely tight muscle spasm for about thirty seconds, then released.

Over the following days, these attacks became more frequent and spread to my right calf and ankle, coming at all hours, day and night, awake or asleep.

It’s like what I’d imagine being tortured to be like, with the constant threat of pain but never knowing when that pain will come.

I’ll be sleeping peacefully, then suddenly I’m in the grip of pain so severe I’d almost take labor contractions over it. Imagine living your life knowing you’ll be randomly tased about one hundred times a day, every day, with absolutely no way to predict when it will happen.

I’ve even been terrified to make quick calls to my kids’ schools, because what if a spasm hits me in the middle of a conversation and I involuntarily scream and hang up the phone?

So Why Not “Just Go to the ER?”

Because I already know what would happen.

They’d prescribe muscle relaxants and anti-inflammatory medication that I can’t take because both would drastically worsen my other conditions. Then they’d tell me to follow up with my primary care doctor or physical therapist (which I’m already doing). An MRI might be ordered, but I can’t lie on my back without my legs going numb and the spasms intensifying, and my insurance probably wouldn’t agree to pay for it, anyway.

In other words, my options are limited, and I don’t feel like leaving my house and going through all that just to be told to do something I already plan to do. I already have a physical therapy appointment next week.

If physical therapy doesn’t work, there are steroid injections (which I can’t have) or surgery (which carries serious risks for me). So, in the meantime, I’m managing with ice packs and hope, waiting for the appointment I already have scheduled.

About Those “Good Days”

Seven days ago, if you’d seen me making rice, you might’ve thought, “That person could definitely work, at least from home. They seem fine.”

Fast-forward six days. The only position that minimizes my spasms is lying on my left side in a fetal position with strategically placed pillows and ice. I cannot even sit because sitting triggers my worst and most frequent spasms. Going to the bathroom has become an ordeal that ends with me on the floor screaming, dependent on my partner for basic tasks my pain prevents me from doing.

Do you think the person I’ve been these last six days can work? Can function at all? No.

And it’s always something. When it’s not this, it’s cervical instability causing five-day migraines with vertigo so intense I can’t be upright. Or POTS flares. Or something else entirely.

The point is that you have no idea, when you see someone on a good day, how catastrophically bad their bad days might be, or how little control they have over when those bad days strike.

The Illusion of Control

I didn’t do anything to cause these pinched nerves.

I didn’t lift anything too heavy.

I wasn’t careless.

I, simply, have degenerative disc disease, herniated discs, and hEDS. With these conditions, all it takes to cause nerve compression is sleeping in one position a few minutes too long.

Or sneezing.

Or something small and seemingly inconsequential I’ll never even realize contributed to this.

But the point is that I had no control over it.

And that’s the part our culture can’t seem to process. We’re taught that willpower, determination, and self-control are all that stand between us and our goals. That we can meal prep and exercise and supplement our way into complete health. We believe that disability is something you can overcome if you just try hard enough.

But dynamic disability doesn’t work that way.

And the irony isn’t lost on me that this neurological storm took me down as I was trying to meal prep. (The irony is also not lost on me that immediately after writing that sentence I just had another massive spasm in my hip again.)

If you have a dynamic or fluctuating condition, you already know exactly how exhausting it is to explain this to people who don’t (or won’t even try to) understand. It’s exhausting being doubted, having your good days brought up as if they’re “evidence” that you’re exaggerating your bad days, being told you “don’t look sick,” etc.

So instead, let me do the explaining for you.

Share this article with someone in your life who just doesn’t get it. Send it to a coworker who questions why you can work some days and not others, or to a disbelieving family member who sees your Instagram photo from a decent day and wonders why you’re “suddenly sick” again. Send it to anyone who needs to understand that good days and bad days aren’t a reflection of your morals nor are they contradictions. They’re literally just the reality of living in a body that misfires and flares unpredictably.

And if you’re reading this and you don’t have a dynamic disability, please share it anyway. Help your friends and family understand what’s really happening behind the scenes to people in your life battling in the trenches of dynamic disability.

Because here’s what I think really scares people. It’s the acknowledgment of how little control any of us actually has.

Our cultural obsession with willpower, with hustle, and with self-improvement is really just a shield against that fear. And that shield gets projected onto us (onto disabled people) in the form of ableism, and of disbelief and of denial of something able-bodied people aren’t yet ready to contend with.

It’s like able-bodied people need to see us improve or recover. They need to believe it’s possible, to know that if it happened to them, there’d be a way out paved by self-determination and self-control. That if they just try hard enough, it won’t happen to them.

And sure, some illnesses and some disabilities can go into remission or can be healed. But not all can.

Pursuing a healthy diet, an exercise routine, or positive lifestyle changes can be worthwhile. If you’re able to do those things, even imperfectly, they can provide relief, some alleviation, some stabilizing. They’re definitely worth doing.

But sometimes, even those fortifications aren’t enough to prevent dynamic disabilities from occurring. And sometimes, dynamic disabilities prevent us from even being able to pursue those things at all, at least not without help.

Sometimes you just get dealt a shitty hand, and it’s not wisdom to try to “positive-mindset” your way out of it. That’s just mental and emotional bypassing. That’s not healthy.

Look, I’d love to turn off this pain and all my symptoms. If there was a button I could press to make it all go away, I would have pressed it ages ago. But there’s not. And at forty, I’ve come to accept that diet, exercise, and lifestyle changes, none of these are that button.

They’re not the way out.

There is no “out” for some of us.

The way “out” is just sitting with the pain. Not resisting. Hoping it’ll get better, learning to cope if it doesn’t.

And it’d be a lot easier to cope if society wasn’t so quick to disbelieve and demonize us just because they’re afraid to acknowledge that our lot could just as easily become theirs.

Just like any form of prejudice, ableism is driven by fear.

But what’s beyond fear is (or can be) acceptance. Not “accepting defeat”, but acceptance.

And that’s definitely worth striving for.

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I wish I could say that that was solely down to my recent health challenges, but that claim wouldn’t be entirely accurate (or honest).

The truth is that the content of this article, like pressurized magma, has been threatening to erupt for some time now. And, as is the case with such violent tectonic events, I know that many may not initially welcome what I have to say.

Nevertheless, it has to come out.

All I ask of you, dear reader, is that you hear me out completely before you react. I assure you, I’m not going where you may think I’m going with this.

Here goes nothing.

I think we have a nuance problem in many disability and chronic illness advocacy spaces, in that we have come to lack or even, in some cases, vehemently oppose nuance.

It makes complete sense why we do this when you look at it through the lens of our lived experiences. We do live in a society that deals in black-and-white absolutes, and those absolutes inform attitudes and policy positions which are genuinely harmful to us.

The general public, for instance, seems to believe that unless someone is 100% physically paralyzed, they do not medically need to use a wheelchair or mobility aid, even though ambulatory wheelchair users (wheelchair users who are not paralyzed and can walk short distances) genuinely need wheelchairs to get around.

I, myself, am an ambulatory wheelchair user. A trained medical professional evaluated my labs and my symptoms and decided a custom wheelchair was medically necessary. A traditionally very reluctant insurance company could find no reason to deny the claim. I now have and use a custom wheelchair and it indeed makes it possible for me to get out and do things that I couldn’t do before.

These two facts mean that I, a non-paralyzed person, do indeed meet the criteria of medical necessity and need to use a wheelchair. That also means that the general public’s belief that only 100% physically paralyzed people medically need wheelchairs is wrong and is based on a belief that is too narrow and not nuanced enough.

The general public also seems to believe that unless someone is non-speaking, intellectually disabled, and requiring 24/7 supervision (in other words, ASD 3), they’re not autistic, even though two other diagnostic levels of autism are clinically recognized.

I, myself, have been diagnosed by a neuropsychologist as ASD 1. A neuropsychologist with decades of specialized training in neurodevelopmental conditions and experience evaluating children and adults for autism assessed me using sophisticated tests with controls built in that make it virtually impossible to try to influence the test one way or another. She took testimony from my parents and my spouse. She reviewed 6 hours of video footage of me that was taken as part of the assessment. And she spent three weeks compiling and reviewing all of these tests before coming to the conclusion that I met the diagnostic criteria for ASD Level 1.

This means that the general public’s belief that only non-speaking, intellectually disabled people requiring 24/7 supervision can be autistic is wrong and is based on a belief that is too narrow and not nuanced enough.

But even more to the point of this article is the fact that the general population seems to believe that disability and health conditions are simple and binary, both in the sense that they believe someone has to be the most of something (whether that’s completely paralyzed/unable to move, completely blind/unable to see, completely bed-bound 100% of the time, completely unable to care for themselves 100% of the time, etc.) to be considered “truly” disabled, and also in the sense that they seem to believe that treatment either cures you, or it doesn’t.

In the first sense, in the general population’s estimation, dynamic disability and chronic illnesses that fluctuate are delegitimized. If they see a disabled content creator posting a picture or a video of themselves on a good day, when they’re able to walk, or wear make-up, or work out in the garden, or go out in public, they conclude that person is “faking” their disability. In a strange sort of moral inversion, the general public will tend to attack people with dynamic or invisible disabilities in the name of defending “truly” disabled people.

In the second sense, they seem to believe (as in the case of someone who is paralyzed or blind) that nothing will ever help or cure that person (and that, I think, forms the basis of their definition of “true” disability). But they also seem to believe, in the case of someone with a dynamic disability, that their “good days” are the actual truth, the “bad days” are the aberration, and it’s just a matter of willpower, or of finding the right supplement, medication, or exercise routine to heal them completely. Either someone is completely beyond help and is therefore “truly” disabled, or they’re not trying hard enough to be helped.

Dynamic and invisible disabilities break this binary and that creates cognitive dissonance for people who think in these binaries. Usually, people resolve this cognitive dissonance by placing blame on people with dynamic and invisible disabilities.

This can come out in statements like:

“You just need to get outside more,”

or,

“You just need to do yoga,”

or,

“You just need to take this supplement,”

or,

“You just need to have a more positive mindset,”

etc., etc., etc., ad infinitum.

And in my opinion, this is exactly where our defensiveness comes from as dynamically and invisibly disabled people.

We become reluctant to heed such advice because we know these things won’t cure our genetic conditions, or our connective tissue conditions, or our nervous system conditions, et al.

And, most importantly, we fear that if we do experience even a little relief or improvement from these things, people will go, “aha! I told you! You’re cured!”

And if that happens, we fear that people will revoke supports that we still need and expect us to go about life as though we are now able-bodied, healthy people, when we are not.

We fear losing support. We fear losing belief. We fear losing compassion.

And those are valid fears, because those things do happen. I’ve experienced them, myself. It makes sense that hearing advice like the above would make us dig our heels in.

I’d lump all the above advice into the category of “toxic positivity,” but I’d even go one step further and give that category a different name, as I think “toxic positivity” is a bit of a misnomer.

I’d call it “toxic optimism.”

But toxic optimism is just one extreme the pendulum can swing to. The other extreme is what I would call “toxic pessimism.”

And that’s where I think we get stuck, as dynamically disabled and chronically ill people.

I don’t think we can really be blamed for it, because the black-and-white binary thinking of the society we live in essentially demands it. It reminds me of a black-and-white border collie aggressively herding sheep into a confined area (not that disabled or chronically ill people are in any other way like sheep. If anything, the general population, which settles for inaccurate assumptions about disability and chronic illness rather than thinking critically about these things, has more in common with the modern connotations of what a “sheep” is).

But I do think it makes our lives harder than they need to be, and harder than they already are. I think it encourages us to avoid things that might not “cure” us but might meaningfully improve our symptoms or quality of life.

I mentioned that I’ve been having recent health challenges, and I have. Summer is brutal for my conditions. I also am, in general, in a flare of several of my conditions.

My conditions are lifelong and incurable. I know this.

But I decided to do something radical in the past few months.

I decided to try my absolute hardest to cover the basics more regularly than I had been: sleep, sunlight, meditation, diet/nutrition, exercise, and just see what happened.

I did this privately and quietly because I didn’t need or want any bad-faith onlookers waiting to see if they had been vindicated and if their advice really was all I had to do to feel better. I also didn’t want to mention it and be immediately burnt at the stake by the disabled and chronically ill communities in case they thought I had swung to the extreme of toxic optimism, myself.

And I’ve been scared to share my results for those same reasons. But I think it’s important that I do, because I think I ended up proving both of them and neither of them right.

For example, it is incredibly challenging for me to sleep, for a multitude of reasons. I am extremely hypervigilant due to trauma and CPTSD and will wake at the slightest pin drop, and that’s if I can fall asleep at all thanks to insomnia. I have to drink a lot more fluids than the average person because of having POTS, and even when I try to cut off fluids before bed, I still wake up in the middle of the night having to pee. Sometimes, I’m in so much joint or muscle pain that I can’t sleep. Other times, my heart rate is in the 130’s for no observable reason and my nervous system just won’t settle. I also have terrible nightmares and hypnagogic hallucinations (a sleep disorder). I sleep with an eye mask to lower the incidence of hypnagogic hallucinations, but the mask can slip off and I can have them anyway. I can’t take medical or natural sleep aids because they either conflict with my existing medications or cause worsening of my various conditions.

And because of all of that, I gave up on even trying to improve my sleep years ago. I just full-on became apathetic about it.

In the past few months, though, I decided that even if I couldn’t get the recommended amount of sleep each night, I might be able to try to get more than I was getting. It hasn’t been perfect, and it hasn’t been easy, but on the whole, I’ve been getting more sleep than I was. And you know what? The number and severity of my migraines has diminished. I’ve gone from having migraines for five consecutive days with only one day of relief in between to having ten to fifteen migraines per month. Not a huge improvement, but an improvement.

I gave myself a literal bedtime, a wake time, and did everything in my power to try to sleep in the hours in between. And like I said, it hasn’t been perfect and I’m certainly not getting the recommended eight hours every night, but I’m getting more than I was, and that’s all that matters.

After doing my at-home physical therapy exercises religiously (or as religiously as I can, given all of my other symptoms), I’m no longer having searing coat-hanger pain after only 10 minutes of sitting upright. Instead, I’m going 30 minutes before having to lay down because of the pain.

After doing mantra and breathing exercises every morning, I’m no longer constantly on the edge of having a panic attack every waking moment. When I do have panic attacks, which is still often, I’m able to get through them and recover from them faster and with less distress. But they still happen.

After doing gentle exercises to help with the deconditioning I’ve experienced as a result of being bed-bound from migraines and pain, my resting heart rate is coming down to a lower baseline. But my resting heart rate baseline is still above the normal resting heart rate range.

My point is that there have been improvements, and they are indeed providing me relief. But my conditions remain.

None of these things took me from being a disabled person to being an able-bodied person. If anything, taking the advice of all of these people claiming that all I needed to do was yoga or eat more kale or think positively or get more sunlight and I’d be cured vindicated my experience of my conditions and the reality of living in a disabled and chronically ill body.

And no, I’m not anywhere near cured. But I’m not suffering as much as I was, and that’s huge for me.

I think when we let ourselves be corralled into toxic pessimism, as understandable as it is, we give up what little agency we still have left that disability hasn’t already taken from us. And that sucks.

But what if we took that agency back? What if we dared to live in the space between these two extremes? What if we could hold nuance? What if two things could be true? What if taking care of these basic things (to the best of our ability, whatever that looks like) helps us feel better and we’re still disabled? What if we take back our agency and still deserve belief and support?

I think allowing ourselves to be pushed to the extreme of saying, “no, none of that helps, and no I’m not even going to try it because it’s not going to cure me” is understandable, given everything. But I think it’s a fundamental failure in truly advocating for ourselves as dynamically disabled and chronically ill people.

Standing in the center and embodying the nuance is truly advocating for ourselves. Refusing to be shoved into either of the extremes just to placate the comfort of people who won’t do the work of educating themselves is truly advocating for ourselves. Letting ourselves be seen out and about and thriving on our good days is advocating for ourselves every bit as much as showing our struggles.

Allowing yourself to enjoy a break in the rain doesn’t mean that you’re not still wet from the last time it rained and that you won’t get soaked in the next downpour. We know that as dynamically disabled people and/or people living with chronic/invisible disabilities.

It’s time we help the rest of society know and understand that.

And we don’t get there by cutting ourselves off from relief, however modest it may be, because we need to prove to anyone that we match their definition of what disabled bodies look like and operate like. We deserve to feel as good as we can and still be taken seriously when our best is still disabled.

It starts with us.

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In a world full of espresso machines, I am a French press, slowly percolating, steeping.

I forgot that for a while there.

I tried to turn this publication into a Starbucks, into a conveyor belt churning out an entire menu at a reliable pace I was delusional enough to think I could sustain indefinitely.

To say it is tempting to monetize any output you’re able to generate as a disabled person in this late-stage capitalist society is an understatement. It’s not temptation as much as it is imperative. It’s the imperative to survive.

But you can’t make shots of espresso in a French press. And when you try, you lose the unique character of the end product.

I’d been losing my character, trying to produce concentrated shots in uniform amounts at regular intervals. I’d been losing the slowness that has always been the most important element in my process.

I’d been losing sight of one of the most beautiful and integral parts of being disabled and chronically ill. Maybe it’s the greatest gift.

And that is, in my opinion, the fact that it forces you to slow down and notice things other people register only as uninteresting background, if they register at all.

I was forced to slow down in exactly this way in the last several weeks. Storms crawled across the sky, disturbing atmospheric pressure and my skull and brain’s fragile truce with their own delicate balance. Arcs of pain mimicking the streaks of lightning reaching like bat wings across the whole expanse of Appalachian sky above me immobilized me in the same position in my bed for days. Migraines spanning nearly a week at peak intensity were interrupted by sometimes only a day of bewildered relief.

During the worst of the neurological storms, I couldn’t move, couldn’t speak, couldn’t even hold my phone. I could only focus on stitching moments together with the thin, steely thread of willpower.

But when those storms broke? The world had never looked so beautiful. No bite of food had ever tasted so good as the one I was finally able to keep down. The mote dancing in a beam of sunlight threatened to break my heart from the magnitude of gratitude swelling within it.

Because you know how precious these things are, when you’ve been in a place of unrelenting darkness and unyielding pain. You know your residence in this land of relief is fleeting. You know the wheel keeps turning, and that soon, you’ll be feeling bad again. But, conversely, you know when you’re feeling bad that you’ll be feeling good again, given time.

Time, that does not bend to your will like it does to people whose bodies can withstand the G forces of society’s artificial and frenetic pace. Time that progresses less like one moment to another and more like what it is, one constant, eternal, stretched-out moment, never starting, never ending.

You slow down enough to really be in the present moment, whether that present moment is filled with more pain than you can bear, or more beauty than you can stand.

I normally write about the challenges facing disabled and chronically ill people and about the points where we crash against existing systems like two oceans colliding, and that’s important work. I’ll probably never stop doing it, because it’s the one thing I can never stop myself from doing.

But what I can stop myself from doing is doing that as though I were a person who does not live at the crossroads of causative action and surrender, a person who is not subject to the rhythms and seasons of nature or of their own body but only subject to the artificial march of a Timex.

And there is beauty in the slowness, and everything it holds. There is an appreciation unique to those of us who have been forcefully shunted out of the fast lane, where we can see that the blur of yellows and pinks and purples was always wildflowers swaying in the breeze the whole time by the side of the road.

I’ll still be doing my regular systems-review pieces, still be writing the No One Believed Me series. It just may be at a slower publishing pace to accommodate not only what I can handle physically and mentally, but what allows me to stay in the slow lane.

It’s the only pace I can sustain living in a body like mine.

But I promise to pick you lots of wildflowers.

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In most cases, it has nothing to do with an employee’s ability or inability to carry out the essential duties of their job while seated. If you’ve ever been to an Aldi and had your order rung up by a seated cashier, you’ve seen firsthand how it can be done.

What’s really happening, I believe, is that somewhere in the American cultural zeitgeist is the tacit maxim that a seated employee is a lazy employee, and these policies exist both to assuage public expectations on that point as well as to reinforce them.

This goes so much deeper than cashiers getting stools, though. When you pull on this thread, you begin to unravel a massive, dusty old tapestry of power dynamics as old as time.

Who got to sit, and who had to stand

Bear with me for a bit of relevant historical lore. I promise to make it brief.

For most of recorded human history, the chair was less a piece of furniture and more a status symbol. The earliest chairs were reserved for pharaohs, kings, and high priests. In medieval Europe, thrones were architectural objects, literal symbols of dominion. Ordinary people stood, or at best got a bench, or a stool.

The French court under Louis XIV made this so explicit that it became almost a parody. At Versailles, whether you could sit in the presence of the king, and on what type of seat, was a matter of rank. Duchesses got a backless stool while Princesses got a chair with a back, etc. Madame de Montespan, mother of several of the king’s children and widely recognized as the unofficial Queen of Versailles, was made to stand because her estranged husband refused to accept the honor of a stool on her behalf. That is how precise and deliberate the humiliation was.

The same logic ran through Victorian and Gilded Age households. Servants stood at attention until dismissed, moved silently, and remained invisible unless spoken to. Even amongst the servants, there was a hierarchy of who could sit (and when.) Straight-backed hall chairs, specifically designed to be uncomfortable, kept lower servants awake and on-call.

The chair signified varying levels of power while standing was always reserved for servants and “lessers.”

The more things change, the more they stay the same

When Safeway was challenged over its policy requiring cashiers to stand, company spokesperson Craig Muckle told the Washington Post that standing cashiers were simply a cultural thing, acknowledging that Americans do not consider sitting while working “normal”.

That is a rather stunning thing to say out loud. The job can be done seated. The company knows it can be done seated. And yet, the reason it is not done seated is that Americans simply expect the person serving them at the register to be standing.

People will claim that sitting on the job is ‘unprofessional,’ but notice that this claim is applied selectively. Bank tellers sit. Librarians sit. Artisans sit. White-collar workers of every kind sit, many of them in public-facing roles, and no one questions their professionalism. The objection surfaces specifically for certain workers, like the cashier, the retail clerk, the food service worker, et al.

The through-line is class. “Professionalism,” in this context, is a '“respectable” word for something older and far less respectable, and that is the expectation that service workers should perform deference, that they need to remain visibly subordinate, and that they “know their station.”

The stool or the chair doesn’t prevent the job from being done. We know this. What it prevents, or, rather, what it threatens, is a social order that requires certain people to be seen standing while others sit.

And the rule does not relax when the store is empty. If you’ve ever worked in retail or customer service, you know this well. What you might not have known, at least not consciously, is that this is because the rule was never about customer service.

In 2019, Safeway was ordered to pay $12 million after a California cashier was denied the right to sit. The Equal Employment Opportunity Commission has described a cashier’s stool as “a common-sense solution to remove a workplace barrier,” noting that the job can be effectively performed sitting down.

I mean, think about this for a moment. Really think about this. Courts have had to compel companies to allow disabled cashiers to use stools that would cost them nothing to provide and in no way, shape, or form restrict the performance of that role’s essential duties.

The people defending these policies are not confused about the function of a stool.

They’re not confused at all.

And we shouldn’t be, either. Which is why I want to lay this all out so we can all be on the same page and read exactly what they’re hoping we never would between the lines.

Planned obsolescence as applied to people

I want to share something my partner pointed out in a conversation the other night that I have not been able to stop thinking about, and that is that the conditions in these jobs are not accidental, and they’re not even fully explained by mere negligence.

They’re intentional in the most comic-book-villain of ways.

Consider what long-term employment costs a company. It costs them raises, accumulated benefits, and institutional knowledge/experience that has to be compensated.

Now, consider what high turnover provides a company. It provides them with a rotating supply of workers who can always be paid entry-level wages, who have not yet accumulated the protections that come with tenure, and who can be replaced the moment the cost of keeping them rises above the cost of replacing them.

Strict sick-day policies, mandatory standing, relentless physical demands, schedules that change week to week that make things like outside obligations (appointments, social life, etc.) impossible to manage, these are, as far as the company plan goes, a feature and not a bug.

The goal is not to retain workers.

The goal is to extract maximum labor at minimum cost for as long as a worker is useful, and then to have conditions in place that make it easy to justify pushing them out.

It is literally planned obsolescence, applied to human beings instead of iPhones.

And these conditions do not spare able-bodied workers, either. This isn’t just about disabled workers, though it impacts us first (as ever, we are the canaries in the coal mine for the rest of y’all).

The burnout rate in retail, food service, and warehousing is infamous and universal.

And what these conditions do, in addition to generating turnover on demand, is make these jobs effectively impossible for anyone who needs even minor accommodation, like a cashier who cannot stand for eight hours, or a warehouse picker with a chronic pain condition, or a customer service worker who needs noise-canceling headphones to concentrate.

These conditions are, essentially, the anti-homelessness spikes under underpasses and armrests on public benches designed to make it impossible for anyone to lay down on them. They’re meant to be hostile to everyone, but especially to anyone who isn’t able-bodied.

And we currently live in a political moment that is attacking, simultaneously, the protections that make workplace accommodation possible and the safety nets that would catch the people those jobs exclude.

Two doors, both closing

Right now, many of the people making policy in Washington are pursuing an agenda that, if you follow it to its conclusion, leaves disabled people with nowhere to go.

Again, think feature, not bug.

On one side we see them gleefully gutting workplace protections. The Americans with Disabilities Act, the accommodations framework, and the enforcement mechanisms that compel employers to provide reasonable adjustments are all under pressure.

The argument is that they are “burdensome” to business. What they actually are is the only reason a disabled worker can, at least for the time being, legally demand a stool, a flexible schedule, a quieter workspace, a shift that accounts for medical appointments. If the legal compulsion gets successfully removed, you just watch how quickly “we’d love to accommodate you” turns into “this position requires someone who can meet all the physical demands of the role.”

We’re already closer to that scenario than you may realize.

On the other side, we see the wanton dismantling of the various “safety net” programs. We see more and more push for Medicaid work requirements, cuts to SNAP, and structural changes to Medicare and Social Security Disability that would narrow eligibility. Then you add administrative burdens that functionally exclude the people who need them most, and over time reduce both access and funding.

The people pushing these changes frame them as “fiscal responsibility”, as incentivizing work, and as cutting waste (remember the man brandishing a chainsaw on stage?) But I think it is important to acknowledge that what they are actually doing is making survival impossible for the people who cannot work, and making the path back from disability-related unemployment into a maze with most of the exits blocked.

This is not a new idea or policy. The rhetoric of “useless eaters,” of the “burden” the disabled place on “productive society”, of the “wisdom” of institutional “care” over community support is language that has well-documented history, and that history does not end anywhere that most of us ever want to return. We do not have to say the quiet part out loud to know what it is.

These two things are coordinated rather than being separate policies that just so happen to be on the floor at the same time. On the one hand, you force disabled people out of the workforce by removing the legal requirements that make the workforce accessible. Then, you remove the programs that would allow those people to survive outside the workforce. The ones whose families can absorb the cost of their care become “burdens” on those families. The ones whose “care” can be monetized disappear into private institutional settings, which are, not incidentally, among the most profitable industries in this country (and, also not incidentally, currently being pushed by some in Washington). The rest are left to their fate.

This is not an accident.

And it has a name, a name that its proponents would rather hide behind pretty political language and dog-whistles.

What eugenics actually looks like

Eugenics does not require a government program with that word in the title. It requires only a consistent, systemic set of conditions that make it harder for certain people to survive, reproduce, or participate in public life, combined with a political class unwilling to prevent those conditions and in some cases actively creating them.

When you remove the accommodations that allow disabled people to work, and then remove the supports that allow disabled people to survive without work, and then float proposals to return to institutional “care” for those who cannot be absorbed into the workforce or managed at home, you have described a system that is filtering disabled people out of public life with efficiency, if not with a name.

There is open discussion, from real figures with real political influence, about cutting what they call “unproductive” spending on people who are, by the logic of their economic framework, “unproductive people.”

This is the modern face of a very old idea, that a person’s right to resources, dignity, and survival is contingent on their economic output, and that people who cannot produce at the level the market demands are a problem to be managed, not people to be supported.

The moralization of overwork is, also, part of this machinery.

The “pull yourself up by your bootstraps” ethic, the sacralization of grinding, the cultural frothing contempt for rest, and for accommodation, and for needing anything, at all, ever, was first circulated and reinforced by the people who benefit from a workforce that works itself to exhaustion without complaint, that does not organize, that blames itself for its own conditions. It is propaganda in the most straightforward sense of the word, and it has been remarkably effective.

It has been effective enough that people with disabilities have internalized it, too. I know I have. It’s the internalized shame that makes us question whether we really need the stool at the cash register and it’s the hesitation before disclosing an accommodation request (true story: I once nearly hyperventilated in the car before going into my job to disclose my health conditions and request accommodations). It’s the constant auditing of whether your need is enough to justify asking and constantly convincing yourself that it’s not.

That internalization is the point of the propaganda.

It results in a worker who is ashamed of their needs and a worker who will not demand that those needs be met.

Naming it plainly

The thing these systems have in common is that they work better when they are invisible.

The person who insists standing is “just professional” does not think of themselves as enforcing an aristocratic body-language hierarchy that dates to the courts of Versailles.

The hiring manager who passes on the autistic candidate does not think of themselves as discriminating. Instead, they think of themselves as going with the person who was a “better fit” without ever consciously realizing that much of that came down to “vibes.”

The politician who votes to add work requirements to Medicaid does not say they are engineering conditions under which disabled people will lose access to medical care and die sooner. They say they are cutting waste. They say they are creating “incentives.” They say they are being “fiscally responsible.”

None of these people even need to know what they are doing consciously for what they are doing to have its intended effect.

But we need to know, because these systems survive on the assumption that “this is just the way things are.” That’s what is called a “thought-terminating cliche”. It is used in propaganda and cult indoctrination to prevent someone from thinking critically about a certain point. It is a statement that creates the illusion of adequate knowledge, and that is really effective in preventing further thought on the matter because who is going to continue to question something they think they already know everything they need to know about?

When “just the way things are” includes that the standing requirement is natural, and that the interview format is neutral, and that there is simply not enough money for Medicaid, and that institutions are sometimes just necessary, and that some people are, regrettably, unable to be productive, and that is a tragedy but not a policy failure and certainly not a choice someone made, people stop questioning it.

Not all people, mind you. There are those of us who have to question it, because we’re the ones whose lives are on the line. What might be a hypothetical thought experiment for someone else is our actual existence.

It is a choice someone made. Actually, it was a series of choices. The choices were made by people who benefited from them and were made at the expense of people who had less power to object.

Disabled people have always known this on some level, because we’ve had to, which is part of why this community has always, in its best moments, been oriented toward collective action rather than individual aspiration. You cannot “bootstrap” your way out of a system that was designed to disenfranchise you. You can only change the system, and you can only change the system if enough people can see it clearly enough to want it changed.

Seeing it means realizing that the stool is not about laziness and never was. The interview is not about “fit.” The cuts are not about the budget. The institutions are not about care.

See it for what it is. Name it. And then decide what to do with what you know.

Chronically Misread is a reader-supported publication. If this essay is useful to you, consider sharing it with someone who might need it, or becoming a paid subscriber to support this work.

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A note before you begin: There’s a companion PDF waiting at the end of this article (The Family Disbelief Field Guide). It includes scripts, a boundary-setting framework, a guide to navigating family gatherings, and language for the specific conversations most of us dread. It’ll be there when you’re ready for it.

A further note: This is the second instalment in the No One Believed Me series. If you're new here, the full series lives in the No One Believed Me section of Chronically Misread, where you'll also find the introduction post and the first instalment, The Doctor Won't Believe Me. You don't need to have read the earlier instalments to follow this one, but they're there if you want the full picture.

Growing up in the late 80s and early 90s, in my family, the understanding of illness was very cut and dry. Unless we had fevers or were actively throwing up or bleeding, we were fine. If we were sick enough to stay home from school in the morning but started playing energetically by mid-day, we might be told to get dressed and driven to school, since we clearly weren’t “really” sick. And if our complaints weren’t reflected in routine blood tests or physical examinations, we must be making our ailments up.

But I want to be fair about this, because the logic wasn’t wholly unreasonable on its face.

Illness in my family (and, probably, most families at the time) was understood as something a doctor could always clearly see. It showed up as a fever, or on a blood panel, or as a point of concern during a routine physical. Serious conditions like cancer or heart problems were real, but they were filed away as far-off things that happened to old or unlucky people, not to us. And the everyday yardstick of “no fever, no vomiting, no visible symptoms means you’re fine” is honestly a reasonable one for most parents when trying to decide whether their child is well enough to attend school that day or needs to stay home, even by today’s standards. After all, when you’re getting kids out the door on a school morning, you can’t keep a child home every single time they have a complaint.

This was also a particular time. I grew up in the time before the Internet, before Google, before Urgent Care, and before a lot of the conditions we now talk about openly had names most people recognized. My family wasn’t being negligent on purpose. They were working with the information they had, and the information they had said that what couldn’t be measured wasn’t there.

But intentions are a separate thing from outcomes. Harm still happens when more complicated conditions get overlooked. Harm still happens when a kid who keeps reporting symptoms that don’t show up on standard labs gets labeled a hypochondriac or an attention seeker, or gets punished for speaking up at all.

I am very familiar with that particular kind of harm, because I was that kid. And the absence of a finding on routine examinations and tests became “evidence” for my dishonesty, when really, it was just the limit of what those particular tests could detect.

Information on the conditions I was born with wasn’t readily available back then, no. But no one was curious enough to keep looking, and in the absence of curiosity, the only available explanation was that I was the problem (a verdict which, unfortunately, persisted even after the exoneration of diagnoses later on in life).

Maybe this sounds familiar to you. Maybe it doesn’t. Maybe your version of this didn’t start in childhood. Maybe it started the first time a doctor told you your labs were normal after you had come to them for help with disruptive symptoms that wouldn’t go away, or the first time someone who loved you said you seemed “fine” to them when you had just told them you felt anything but fine.

But the experience is essentially the same, no matter when it happens. Your body kept telling you something was true, and the people around you decided that the absence of a simple explanation meant there was nothing to explain.

The part I didn’t expect

When I finally started getting diagnoses in my thirties and forties, I genuinely believed that they would change things with my family.

I thought, “Now they’ll understand. Now there will be a name for it, something clinical and documented and undeniable, and the whole story will reorganize itself around this new information. Maybe they’ll even say, ‘oh wow, we’re sorry! We didn’t realize you were really struggling with all of that. We thought you were just trying to get attention.’”

But I didn’t even need an apology. I just wanted the understanding. I wanted to be seen in the correct context, finally, after a lifetime of being seen in the wrong one.

What happened instead was that many in my family extended the same logic they had always used. The absence of a diagnosis had once meant I was lying. The presence of a diagnosis now meant I had somehow “conned” my way into one. The story didn’t reorganize like I hoped it would for them, like it had for me. It just morphed around new information like a scab around a sliver in the skin.

I do have family members who genuinely try to understand, and I want to acknowledge that, because it really does matter, and because the difference between those relationships and the others is not small. It is the difference between feeling like a person and feeling like a problem. But for others in my family, I am still just the oversensitive, dramatic, hypochondriac, spoiled youngest child, now apparently also very good at “convincing” doctors of things that aren’t real.

I used to think those family members just had a lack of information problem and that showing them my MRI results, showing them my tilt table results, showing them other lab results which could not be faked and which conclusively proved that I did, indeed, have these conditions, would change their minds.

But this is one of the things nobody tells you about finally getting diagnosed: the diagnosis does not automatically update the understanding of the people who knew you before it. Especially the ones who built an entire understanding of you around the story that you were the problem.

Because if the diagnosis is real, then they have to reckon with what it means that they didn’t believe you. And that reckoning has a cost they may not be willing to pay.

Why families, specifically?

The doctor who dismissed you in a ten-minute appointment did not know you. The paramedic who decided you were anxious before he’d finished asking his first question had no history with you. Their disbelief, though it caused real harm, was impersonal. It was structural, as I wrote about in the first instalment of this series.

Family disbelief is different, and in many ways harder, because it is intimate. It comes from the people who are supposed to know you better than anyone. It comes wrapped in a history, in a shared language, in the weight of years of being someone’s child or sibling or partner. And it carries a particular message that medical disbelief doesn’t quite deliver in the same way:

If the people who know me best don’t believe me, maybe there really is something wrong with me. Not with my body. With me.

That is the message that does the more serious damage, and understanding where it comes from is the first step toward not letting it be the last word.

Family disbelief tends to come from a few overlapping sources, and they’re worth taking a look at separately (even though they usually operate together).

The self-protection problem

Believing you would require your family to update their understanding of your entire history, including their own role in it.

It would mean acknowledging that the child who was punished for “making things up” was actually a child who was sick and scared and asking for help in the only language available to her (and not receiving it).

It would mean sitting with the possibility that the “attention-seeking” was actually a child trying, repeatedly, to get care for something that was legitimately, medically wrong.

For many families, that reckoning is simply too costly. The alternative (maintaining the story that you are dramatic, that you exaggerate, that you just “want” to be sick) is painful for you, but it is easier for them. But this is not a conscious calculation in most cases. It is just the way that people protect themselves from things they can’t afford to consciously acknowledge or let themselves feel.

This does not make it acceptable. It does, however, make it explicable.

The shared biology problem

This one is specific to families where the same conditions, or milder versions of them, run through the family tree. And it is more common than most people realize.

Many of the conditions that cluster in autistic and neurodivergent people, including hypermobile connective tissue disorders like hEDS, dysautonomia, MCAS, chronic migraine, OCD, and anxiety, are heritable. This means that they tend to run in families, which also means that the family members who are dismissing your experience may have some version of the same experience themselves.

For some of them, the dismissal sounds like, “I deal with that too, and I manage fine.” What they don’t understand (what they may not be willing to understand) is that “managing fine” is not the same as not having it. It just means their version is different enough (i.e., less severe), or their coping mechanisms are robust enough, or their circumstances are accommodating enough, that they’ve never had to fully reckon with it.

This is the same threshold principle I wrote about recently in a different context. The straw that breaks the camel’s back doesn’t break every camel’s back at the same load. Someone else carrying a version of the same conditions at a lower intensity, or in a context that happened to accommodate them better, may genuinely not understand why you can’t do what they can do. They’re looking at your straw and seeing only the straw. They can’t see the load underneath it which is already at or exceeding your particular stress threshold.

In my own family, several members share conditions with me, including the connective tissue issues and the migraine history (and, I strongly suspect, the autism history). The severe migraines were actually the one thing that was believed when I was a child, precisely because other family members had them too and understood what severe migraines felt like. Everything else was dismissed in part because the people dismissing it had never personally experienced it at the intensity I was experiencing it, and so had no frame of reference for what I was describing. They truly did think I was just exaggerating.

The narrative investment problem

Families build stories about their members. These stories serve a function. They organize the family’s sense of itself, assign roles, explain dynamics, and create a shared history. The problem for those of us who were misread from the beginning is that the story that was built around us was built on a false foundation (and by the time we have the diagnoses and the language to offer a more accurate one, the original story has already been deeply entrenched for a long time).

Updating it doesn’t just mean learning a new fact about you. It means dismantling a structure that the family has been living within. It means revisiting old decisions, old punishments, old conversations, and old conclusions. It means asking hard questions about who was the “difficult” one and who was the “stable” one and what those labels were actually describing.

Some families can do that work. Many can’t, or won’t. And so the story stays, and the new information gets absorbed into it rather than replacing it (i.e., “Now she’s also somehow convinced a bunch of doctors to agree with her”).

Where this disbelief actually comes from

In the first instalment of this series, I wrote about the structural forces that shape medical disbelief before you ever walk into a doctor’s office. Specifically, I wrote about insurance companies, whose entire financial model depends on finding as many claims as they can “medically unnecessary” to protect their profit margins.

The disbelief you encounter in a medical setting often stems from the financial architecture the doctor is operating inside, the architecture built by medical insurance companies, an architecture with a direct profit motive for skepticism, one that shapes what doctors can do even when their own instincts are telling them something different.

My own doctor believed me. She still had to spend months building a paper trail of “conservative treatment” before my insurance would authorize the imaging she had already concluded I needed. The skepticism was built into the system she was working within, whether she personally subscribed to it or not.

I want to pick that thread back up here, because I think it leads somewhere most conversations about family disbelief don’t go.

Insurance company skepticism reflects and reinforces a set of values already ambient in the culture it operates within, and those values exist at every layer of society, including inside families.

We live in a country in the later stages of a particular economic and cultural experiment, one built on the premise that the individual is the fundamental unit of society, that self-sufficiency is a virtue above almost all others, and that the inability to work, “provide”, and push through is a character flaw rather than a circumstance.

The language is probably familiar, given you’ve heard it your entire life:

“Pull yourself up by your bootstraps.”

“Push through it.”

“Everyone has hard days.”

“You just have to want it badly enough.”

“Mind over matter.”

“Walk it off.”

“Positive vibes only.”

This is a specific ideology, and it serves specific interests. An economy that depends on maximum productivity from its workforce has a vested interest in pathologizing anything that interrupts that productivity, including illness, disability, and the need for rest and care. And within the logic of such a system, a person who cannot work is a moral failure. They’re a burden who is not pulling their weight. They are a drain on those around them and on society. And, maybe most insidious, they are “choosing” this.

That framing crept down from the ivory towers of boardrooms and into the culture via marketing campaigns and slogans, through internal policies regarding sick leave and memos encouraging workers to “burn the midnight oil” and to “be a team player”. It got into media, into politics, into policy, and into the ambient messaging that every family in this country has been absorbing for generations. It shaped how productivity and worth are understood inside families, how illness gets interpreted, and what it means when someone in the family can’t keep up.

The insurance company’s institutional skepticism and your father’s dismissiveness in the car on the way home from the doctor are different expressions of the same cultural inheritance. They are both downstream of a society that decided that the inability to function is suspect until proven otherwise, and that proof requires something visible, dramatic, and undeniable. Anything short of that, and the burden of proof stays with the person who is suffering. So do the stigmatizing labels.

Your family absorbed the message the system broadcasts: that illness is weakness, that weakness is a choice, that people who claim to be sick without dramatic visible proof are probably just looking for an excuse, that empathy extended too readily is a resource squandered, and that the correct response to someone who says they can’t do something is to push back until they find a way to do it anyway, because that is what this culture calls strength.

They were swimming in that water. So were you. So was I, before the diagnoses and the framework arrived to help me understand what I was actually experiencing.

The difference is that you, as the chronically ill person, eventually got information that let you see the water we’ve all been swimming in for the first time. Most of your family members got no such information, or actively resisted it when it arrived.

How it moves through family structures

Structural ideology arrives in families as assumptions so thoroughly absorbed that they feel like common sense, like just “the way things are”, and like what any “reasonable” person would conclude.

Families also have their own internal structures that shape how those assumptions get applied, amplified, or occasionally resisted.

Most families assign their members roles that serve the family system’s need for stability and coherence. There’s “the capable one” and there’s “the responsible one.” There’s “the difficult one” and there’s “the sensitive one.” You might know these roles by other names, things like “the golden child” and “the scapegoat.”

Once a role is assigned (especially in childhood) it tends to stick, because the family system has organized itself around it. Changing the role requires reorganizing the system, which is disruptive in ways that go far beyond updating a belief about one person’s health.

The diagnoses you received that challenged your role as “the difficult one” or “the unreliable one” or “the hypochondriac” asked your family to dismantle a role that had been structurally entrenched for years, possibly decades. They asked “the capable one” to reckon with the fact that their sense of capability was partly built on being believed, when you were doubted. They asked “the responsible one” to consider whether responsibility was genuinely shared, or just unevenly distributed and retroactively justified.

That is a significant amount of internal reorganization to ask of people who have no particular incentive to do it and every incentive not to.

There is also the question of image. Many families (particularly those shaped by certain class backgrounds, cultural backgrounds, or religious traditions) carry a strong investment in how the family appears to the outside world. Illness, disability, mental health struggles, and neurodivergence all complicate the image of a family that wants to present itself as fully functional, capable, and self-sufficient.

In a culture that treats the need for help as weakness, a family member whose needs are visible and ongoing can feel to some family members like a threat to the family’s collective standing. The response to that threat tends to be minimization. The insistence that things are fine, that you are fine, that this is being made bigger than it is. Stand up straight! They will see!

This is also part of why the disbelief often intensifies in public or group settings. In private, some family members might be more willing to believe you. At the holiday table, in front of the extended family, in any context where the family’s image is being collectively maintained, however, the pressure to uphold the story tends to override whatever individual openness might otherwise be available. The family closes ranks around its narrative, with you cast as the villain, as the one who won’t, not can’t.

Understanding where something comes from is a very different thing from forgiving it (and a different thing from accepting it). The disbelief you experienced was your family failing you while they, themselves, were submerged in a culture that gave them every incentive to fail you in exactly that way, and no incentive to do otherwise.

That doesn’t make them right. It just means the thing you were up against was always bigger than any one person in your family, bigger than any one doctor, bigger than any one insurance denial. It was the water we have all been swimming in without even being aware of it, for generations.

And you were trying to explain drowning to people who had never even noticed they were wet.

What this does to a person

I want to spend a moment here, before we get to the practical tools, naming what it actually does to a person to grow up (and then to continue living) inside this pattern of disbelief.

It teaches you to distrust your own signals. If every time you report a symptom you are punished, mocked, or dismissed, you eventually learn to question whether the symptom is real before you’ve even finished experiencing it. This is a necessary adaptation for survival. You stop trusting the perceptions and signals of your own body and mind because the people around you have taught you, consistently and repeatedly, that it is an unreliable narrator. And not just the people around you, but the people who are around you during your most formative years, whose reflections often form the bedrock of our understanding of who we are at the most fundamental level.

This has consequences that follow you far outside your family of origin. It follows you into doctor’s offices, where you downplay your symptoms because you’ve been trained to expect disbelief. It follows you into friendships and intimate relationships, where you apologize for your needs before you’ve even stated them. It follows you into your own private relationship with yourself, where you catch yourself suspecting your own experience before anyone else has had the chance to dismiss it.

It also, for many of us, keeps us in situations we should have left sooner, because we were never taught that our own read of a situation could be trusted.

And then the diagnoses come, and you learn that your perceptions were accurate the whole time. You also learn that the symptoms were real, that the struggles were real, and that the signals your body and mind were sending were not distorted or dramatic or manufactured. You learn that were not broken, just unrecognized.

That vindication is real, but it coexists with grief. It’s the grief of all the years you’ve spent doubting yourself, the grief of being suspected when you needed to be supported. It’s the grief of the passenger-seat car ride, and the four squares of toilet paper, and the sharp objects locked behind a door, and every belittling name you were called.

You are allowed to feel all of that. And it’s important that you do.

How to navigate family disbelief: practical tools for real situations

What follows is not about convincing your family to believe you. I want to be honest with you about that from the start, because I think one of the most painful things we do to ourselves is spend enormous amounts of energy trying to get a particular verdict from a particular jury that has already decided.

Some family members will come around, some won’t. The tools below are not primarily about changing them. They are about protecting yourself, communicating clearly, setting boundaries that actually hold, and knowing what to do when the conversation goes the way it always goes.

Understanding what you’re actually dealing with

Before you can navigate family disbelief effectively, it helps to be able to identify which version of it you’re working with in any given interaction, because they require different responses.

Active invalidation is the direct dismissal of your experience. “You don’t look sick.” “Everyone has bad days.” “I think you’re making this bigger than it is.” “The doctors are just telling you what you want to hear.” This is the version most of us are most familiar with and most prepared for (even if being prepared for it doesn’t make it sting less).

Passive dismissal is subtler and in some ways harder to name in the moment. It’s the subject change when you bring up your health, or it’s the slightly glazed expression, or even the way plans get made without accounting for your limitations (not necessarily out of hostility but out of a kind of willful forgetting). It’s also the way your diagnoses are never quite remembered correctly. This version is harder to address directly because there’s nothing concrete to point to, and attempting to name it often results in being accused of being oversensitive.

Weaponized concern is the version that wears the mask of caring. “I just worry that you’re using your diagnoses as a crutch.” “I only say this because I love you and I want you to get better.” “Have you considered that focusing so much on being sick might be making it worse?” This is the most insidious version because it is the hardest to push back against without seeming defensive or ungrateful. It frames your illness as a choice or a habit, and your reasonable objection to that framing as evidence of the problem.

Collective narrative pressure is when the family’s shared story about you is so established that individual interactions are shaped by it before they even begin. This is the version where even family members who might individually be more open revert to the family line in group settings, because the social cost of breaking from it is too high.

Knowing which one you’re dealing with helps you decide how much energy to spend and on what.

The fundamental choice: engagement or preservation

For every difficult family interaction around your health, you are making a choice, even if it doesn’t feel like one. You are choosing between engaging (attempting to change the dynamic, correct the record, be understood, etc.) and preserving (protecting your own energy and wellbeing without necessarily changing anything about the other person).

Neither choice is wrong. But conflating them is how we end up exhausted and still not heard.

Engagement is worth attempting only when the person has shown some genuine openness, the conversation is happening one-on-one rather than in a group setting, you have the physical and emotional energy to sustain it, and you are able to let go of the outcome rather than needing a specific result.

Preservation is the right choice when you are already depleted, you are in a group setting where social dynamics are working against you, the person has shown no openness over a long period of time (so important to clock), or you simply don’t have it in you today.

And it’s important, as well, to remember you have free will in all of this. You are not obligated to educate every family member every time. You are not obligated to defend your diagnoses. You are not obligated to keep trying to reach people who have made it clear they don’t want to be reached. Protecting your own energy is not giving up. It is recognizing that you are a limited resource and allocating yourself accordingly.

Scripts for specific situations

When someone says “you don’t look sick” or “you looked fine last week”:

“Chronic illness doesn’t always have a visible presentation. My symptoms fluctuate, which is actually one of the characteristics of the conditions I have. Looking okay on a particular day doesn’t mean I’m not dealing with real limitations on other days.”

If you want to go shorter: “I know. Unfortunately, how I look and how I feel are often pretty disconnected.”

If you want to disengage entirely: “I understand it can be confusing. I’ve learned a lot about it over the years.” And then let the conversation move on.

When someone implies you’re using your diagnoses as an excuse or a crutch:

“My diagnoses aren’t a way of avoiding things. I find that people often confuse the definitions of ‘excuse’ and ‘reason’. An ‘excuse’ is something a person offers when they are trying to get out of something, whereas someone explaining a real physical limitation is a ‘reason’ why they cannot do it. That distinction matters to me.”

If the conversation continues in the same direction: “I’m not going to be able to convince you of something you’ve already decided about me. I’d rather just leave this here.”

When someone says “have you tried [thing that will obviously not fix a complex chronic condition]”:

You are never obligated to justify why yoga/positive thinking/going gluten-free/just pushing through it did not cure you. “I’ve worked with my doctors on a management plan that’s right for my specific conditions. I appreciate you thinking of me.” And nothing more.

When your limitations are being ignored in family planning:

Before the event: “I want to come and I want to be honest with you about what I need to make that possible. I’ll need [specific accommodation]. Is that something we can plan for?”

If the accommodation isn’t made and you need to cancel: “I’m not able to make it today. My body isn’t cooperating. I’m sorry for the short notice.” You do not need to over-explain. You do not need to provide evidence. A brief, factual statement is enough.

When someone brings up your history of “always being sick” as though it undermines your current credibility:

“I know that’s how it looked growing up. I spent a long time trying to understand it, myself. What I know now is that a lot of what was happening then had names and explanations that we just didn’t have access to at the time. It makes a lot more sense in retrospect.”

This is not an invitation to a debate. If they continue to press: “I’ve made peace with the fact that we see this differently. I’m not going to be able to change your mind, and I’m okay with that.”

When you are in a group setting and someone says something invalidating:

You have full permission to not respond in the moment. A brief, neutral “hmm” or a subject change is a complete response. You do not have to defend yourself in front of an audience. If you want to address it, do it later, one on one, when the social dynamics aren’t working against you.

When the conversation is escalating and you need to exit:

“I can hear that we’re not going to agree on this today. I’d rather not let it turn into an argument. Can we talk about something else?”

And if they won’t let it go: “I need to step away from this conversation for now.” And then do it, physically if necessary.

Setting boundaries that actually hold

It’s important to remember that a boundary is not a request for someone to change their behavior. It is a statement about what you will and will not do in response to their behavior.

This distinction is so important because you cannot enforce a boundary that depends on someone else doing something differently. You can only enforce a boundary that depends on your own actions.

The difference looks like this:

Not a boundary: “I need you to stop saying I’m exaggerating.”

A boundary: “If this conversation continues to go in this direction, I’m going to need to end it.”

Not a boundary: “You need to believe me about my diagnosis.”

A boundary: “I’m not going to keep discussing my health with you if it keeps going this way. We can talk about other things.”

Boundaries with family are hard for several reasons. We are often dealing with people we love and want relationships with. We are often dealing with people we depend on in some way, practically or emotionally. And we are often dealing with people who have known us since before we had language for what we were experiencing, which means they carry a version of our history that predates and contradicts the one we now understand to be true.

None of that means boundaries are impossible. It means they require clarity about what you’re actually enforcing, consistency in following through, and the willingness to tolerate the discomfort of holding the line when someone pushes back on it.

Some family members will test the boundary repeatedly before they believe it’s real. That’s their work to do, not yours. Your work is to keep following through.

On the family members who are trying

If you have family members who are genuinely trying to understand, even imperfectly, that is worth tending to. They may not always get it right. They may use the wrong language, underestimate the impact of something, or default to old patterns under stress. But the trying is what matters. It is qualitatively different from the not trying, and your nervous system knows the difference even when the outcome of a particular interaction is still painful.

With these people, it is worth being explicit about what helps, and not because it’s your job to train them, but because most people who genuinely want to understand don’t always know what understanding looks like in practice.

“It helps when you just believe me without needing me to justify it.”

“It helps when you ask how I’m doing and then actually wait for the real answer.”

“It helps when you remember what I’ve told you about my conditions so I don’t have to re-explain from scratch every time.”

“It helps when plans accommodate my limitations without me having to ask.”

These are specific and actionable, and people who are trying will generally try to do them.

On grieving the family you needed and didn’t have

This is the part that doesn’t have a script, and I want to name it anyway.

At some point in this work, most of us arrive at a grief that is specific to family disbelief in a way that disbelief from other sources doesn’t quite produce. It is the grief of having needed something from the people who were supposed to give it to you, and not receiving it. It is the grief of what could have been different if someone had just been curious.

That grief is real, and it deserves space. It is the accurate emotional response to an actual loss.

You are also allowed to hold that grief alongside a relationship with your family, if you choose to have one. The two things can coexist. You can love someone and grieve what they couldn’t give you. You can stay in a relationship and still know, clearly, what it is and what it isn’t.

And you are allowed to decide that some relationships cost more than they give, and to act accordingly. That is an important act of care toward yourself.

If you take nothing else from this instalment

Your family’s inability to believe you is not evidence that you are an unreliable witness to your own experiences.

It is evidence of their own limitations: their stigma, their self-protection, their unexamined histories, their investment in a story that predates the truth.

You were not making it up.

All of it was real.

The fact that it took decades to be named does not mean it wasn’t happening. It means the people who were supposed to be curious about you had decided, somewhere along the way, that they already had the answer.

They were wrong.

The diagnoses are not something you conned your way into. They are the names for things that were always there, finally arriving in a language the world could recognize.

You were always telling the truth.

A note about the paywall, and why the scripts and everything above is free

I want to be straightforward with you about something before we get to the companion PDF.

Everything in this instalment, including all of the scripts, the framework for understanding the different types of family disbelief, the boundary-setting language, and the section on grief, is free to read. I made that choice on purpose, and I want to explain why.

I write primarily for people who are chronically ill, disabled, and neurodivergent. Statistically, that means I write for people who are more likely to have experienced financial hardship, employment barriers, and the particular exhaustion of navigating a world that wasn’t designed with them in mind. I know this demographic not because I’ve studied it from the outside, but because I am it. I’m multiply disabled, chronically ill, and late-diagnosed autistic. I can’t hold down a traditional job. I have lived my entire adult life in poverty. I know what it’s like to need a resource and to look at the price tag and not be able to afford it. And I know how demoralizing that is.

I decided a long time ago that I wasn’t going to put vital information behind a paywall for people who are already carrying so much. If the concepts in this series can help someone understand why they weren’t believed, and know that it wasn’t their fault, that belongs to everyone, with absolutely no exceptions.

So if you’re a free subscriber, I want you to know clearly that you are not getting a lesser version of this. You have everything you need right here on this page.

What the companion PDF offers is something different. It’s not more information. Instead, it’s less cognitive work. It’s me putting it all together in a way that makes taking action a lot easier. You can still take action without it. You can even copy the scripts above and print them off to use in moments when you need them.

The Family Disbelief Field Guide just offers a few additional tools that make that process a lot smoother and easier.

It takes everything in this instalment and translates it into something you can actually use in the moments when your analytical brain isn’t fully online, which, if you’re anything like me, is most of the moments when you need it most.

It includes:

• a pre-conversation prep worksheet so you can think through a specific difficult person and situation before you’re in the middle of it.

• a quick-reference card for identifying which type of disbelief you’re dealing with in real time, because being able to name it in the moment helps enormously when trying to select an appropriate response.

• an energy check-in and a simple decision tree for figuring out whether to engage or protect yourself on any given day, which takes the guilt out of deciding you don’t have it in you.

• a fill-in sheet for the family members in your life who are genuinely trying, so you can have something concrete to share with them rather than having to find the words from scratch.

• a boundary tracking log, somewhere to record what you committed to, whether you followed through, and what happened, because seeing that pattern over time is its own kind of validation.

All of it is printable, fillable, and designed to be used in real situations, not just read once and set down.

If you can afford to upgrade, I’m genuinely grateful, an not in a performative way, but in the way of someone who needs this work to be sustainable so that she can keep doing it. Every paid subscription is what makes it possible for me to keep the free tier as full as it is. That’s just the actual math of how this works.

And if you can’t afford it right now, please just take what you need from this page and know that it was written for you just as much as for anyone else.

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Instalment Three (My Partner Doesn’t Believe Me) coming soon.

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Content note: this post discusses chronic illness, dynamic disability, ableism, and employment barriers. It includes brief mentions of pain, fatigue, fainting, and the real-world limitations of living with multiple conditions.

There’s a comment that shows up in disabled and chronically ill content creator spaces with disturbing regularity.

You’ve probably seen it. Maybe you’ve even had it said directly to you.

It goes something like this:

“If you have enough energy to make videos, you can work.”

Or,

“If you can manage a Substack, you can work remotely.”

Most of the time, statements like these aren’t worth engaging with. They’re not questions, for one thing. They don’t emerge from or signal any curiosity. Instead, they’re verdicts delivered by people who have already made up their minds, based on a single curated moment in someone else’s life.

But I’m going to engage with this one anyway, for two reasons.

First: if you’re chronically ill or disabled and you’ve had this said to you, I want you to know that I see you, and I believe you, even when it feels like no one else does.

Second: there are able-bodied people who will read this (or have it shared with them) who genuinely don’t know better yet, people who have never had to think carefully about what dynamic disability actually means, or what the labor market actually looks like for people navigating one. And some of those people have the curiosity and honesty to take it in.

This post is for both of you.

So let’s get into it.

Who Is Saying This

The people who say things like this share in common that they have never had to seriously imagine that someone else’s body could work in fundamentally different ways than their own.

And the reason they’ve never had to imagine it is that someone already did it for them. Their frame of reference for disability is almost entirely what they absorbed from movies and TV: the tragic, static, visually obvious kind, written by scriptwriters who got their understanding of disability from other scriptwriters, who got it from other scriptwriters, none of whom appear to have spent any meaningful time with an actually disabled person.

So when they encounter someone who seems to fall between their two available categories, their confusion defaults to suspicion. You’re not fully able-bodied in the way they understand themselves to be, but you’re also not disabled in the way that their inherited Hollywood template tells them disabled people look. You exist in a space that their framework never even knew to account for.

And because you don’t fit neatly into either category, their reasoning goes something like, “well, you sometimes feel bad and sometimes feel okay-ish, and that sounds a lot more like me when I have a really bad flu than it does like the person in the wheelchair on television. So you should just push through it, like I do.”

The problem with that reasoning, beyond the obvious, is that it treats their own occasional bad days as equivalent to a body that is in crisis with unpredictable regularity. That gap in imagination isn’t necessarily malicious, but it is, unfortunately, still what’s driving a lot of casual cruelty. And rendering a public verdict about someone else’s capacity to work, based on a social media post, tells us considerably more about that gap in imagination than it does about the person they’re judging.

So let's talk about what's actually going on, for anyone who genuinely wants to understand it.

But be warned.

You don’t get to say you are uninformed after this.

What a “Dynamic” Disability Actually Means

Here’s the concept that breaks the “if you can post, you can work” logic at its foundation: dynamic disability.

A dynamic disability is one where symptoms fluctuate (often dramatically and unpredictably) rather than remaining stable. This is the disability you don’t often see in movies, as Hollywood prefers the cleaner, more opaque version of disability: tragic, lifelong, unchanging (except, of course, if there’s a miraculous cure by the movie’s end, which there so often is).

In the real world, episodic disabilities can be extremely hard to predict, even when conditions are well-managed.

Please sit with that for a moment.

Unpredictable even when well-managed.

That means that even if you’re eating all the right foods, exercising as much as you can, taking all the right medications and supplements, maintaining a “positive mindset”, and avoiding triggers, these types of conditions can still lay you out any time (and do).

I’ll give you an example from just one of my own dynamic disabilities: chronic migraines. I can do everything absolutely perfectly and the minute the barometric pressure drops, it won’t matter. I will be laid out in a dark room wondering if my skull is actually going to split open, sometimes for hours, sometimes for days.

Barometric pressure is notoriously difficult to predict. Ask any weatherman. I cannot control it. I am, quite literally, at its random mercy.

Research supports this link between changes in weather and barometric pressure and the occurrence and severity of headaches. For people with migraine (which, by the way, ranks first for the age group of 15 to 49 years as measured by Years Lived with Disability), the weather is not a minor inconvenience. It is a direct physiological trigger that cannot be anticipated far enough in advance to plan a sick day or even get your shift covered.

Some estimates suggest that one out of every six working-aged adults with disabilities report fluctuating and unpredictable limitations. Far from being a fringe experience, that is a substantial portion of disabled people whose capacity to function on any given day is not something they can fully predict the night before (or, sometimes, even an hour before).

That one social media post you saw? That happened on one of their good days. Or during one good hour of a bad day.

Or it took everything they had, and you weren’t there for the three days of recovery that followed.

A social media post is a snapshot of a single moment in time. A job is a commitment to show up (whether in person or remotely), reliably, on a fixed schedule, day after day, week after week, year after year, regardless of what your body is doing that day. These are not the same thing.

Why We Can’t Schedule Our Way Out of Unpredictability

People who have never had their body turn against them without warning tend to imagine that chronic illness is like a very bad cold: predictable in its arc, finite in duration, something you can plan around.

Oh, honey. If only.

I have worked many jobs over many years. I know what it looks like to try your hardest to make it work, to power through, to be reliable, and to have it all crumble around you anyway.

I also know what it looks like to start a shift feeling fine and have the world go sideways the moment a weather system moves in. When I see migraine aura, I have perhaps half an hour before I’m incapacitated by pain so severe that light, sound, movement, all of it becomes unbearable for hours and sometimes for several consecutive days on end.

A good example of what happens when good intentions are bowled over by a condition that doesn’t give a single care about your work schedule is this statistic: headache frequency was associated both with increased MIDAS score and with employment disability; 12.3% of participants with chronic migraine reported employment disability.

And migraine is only one example. Many chronically ill people are managing multiple overlapping conditions simultaneously (myself included), from autoimmune diseases, connective tissue disorders, dysautonomia, to hormonal conditions and everything in between. Each of these conditions can modulate the others in ways that create symptoms layered on symptoms. Hormonal shifts can worsen autoimmune flares. A flare can trigger panic. A panic attack can spike heart rate and cause fainting. A fall from fainting causes injury, which causes pain, which causes more fatigue.

And unfortunately, this is not a mere thought experiment. This is an average Tuesday for most of us living with these conditions.

The unpredictability is the central feature of these conditions rather than an unfortunate side effect.

“But Why Not Just Work Remotely?”

This is the follow-up argument that appears as soon as the first one is challenged. Fine, people say, but surely you could find a remote job.

The remote jobs that actually exist (in fields like tech, writing, medical billing, and administration) are not easy to get, even for non-disabled candidates with strong work histories and the ability to apply consistently and follow up relentlessly.

The current job market is flooded with ghost listings and companies that never respond. Getting to an interview stage is its own full-time endeavor. And on top of this, people with dynamic disabilities tend not to have clean or consistent work histories. They’ve had to leave jobs. They’ve had gaps. This already puts them at a disadvantage in the candidate pool, competing against able-bodied people who do have these things.

And when even well-credentialed, able-bodied candidates are struggling to get callbacks, the idea that a disabled person with an inconsistent work history can simply pivot to remote work is not a real solution.

It’s a fantasy.

Beyond access, there’s the assumption that remote work means flexible work. It largely doesn’t. Most remote jobs are still synchronous, meaning you’re expected to be logged in, responsive, and functional on a fixed schedule. Many employers track active hours and keystrokes. If your autonomic system decides today is a fainting day, there’s no more leniency for that than there would be for an in-person role.

Call center work, often cited as an accessible entry point for people who need to work from home, requires you to be seated, upright, and on the phone for your entire shift while simultaneously typing. For someone whose spinal issues make sitting for more than ten minutes cause searing pain, “just do it from your couch” is not a workaround. (Fun fact: Because of my own spinal conditions, I write every single one of my posts in ten-minute bursts if I’m sitting, or from my Notes app on my phone if I am in too much pain to be upright. If I push past that limit, the result is several days of severe pain, migraines and vertigo so bad I can’t sit up at all. These limits are real and non-negotiable.)

And even in a hypothetical perfect remote job, the fundamental problem hasn’t changed: a body that cannot reliably show up on demand. Because even if all of that were solved, the unpredictability remains.

Even the most accommodating company is usually not able to absorb the uncertainty that dynamic disability brings. Because what company can accommodate someone who may need to take two weeks off unexpectedly, every month, because their body cannot function well enough to work? What supervisor waits patiently while their employee is too fatigued to look at a screen? What attendance policy has room for that?

What Able-Bodied People Take For Granted

There’s a concept in chronic illness communities called post-exertional malaise, or PEM.

It’s the measurable worsening of symptoms that follows physical or cognitive exertion. Showering, cooking, having conversations, or reading are all things that could potentially trigger PEM in previously healthy individuals. Moreover, activity that is tolerated on one day may not be tolerated on a lower-energy day by the same individual.

For chronically ill people, the acts that precede work (waking up, showering, getting dressed, preparing food, commuting) are not neutral events that simply happen before the workday begins. They cost energy (sometimes, all the energy the person had available for the entire day).

Exerted energy can exceed perceived energy, especially when disabled people push themselves over their limits. Disabled people who exceeded their energy envelope limits experienced higher levels of activity, social activity and physical sensitivities.

Able-bodied people arrive at work with energy (mostly) intact. Many chronically ill people arrive (if they can arrive at all) already depleted. And some never make it through the front door.

Chronically ill people with dynamic disabilities start the day with an energy deficit and are told by people who have adequate energy stores that the problem is that we’re not trying hard enough.

The Visible Moment vs. the Invisible Cost

Here is what the person commenting on a disabled creator’s social media post is seeing: a finished product.

They’re seeing a three-minute video where the person is upright, dressed, maybe even has makeup on. They’re seeing a coherent comment. They’re seeing a polished, completed essay.

They’re not seeing the cancellations that preceded that content. They’re not seeing the days in bed that made it possible (or the days in bed following it that were required to recover from it).

That video could have been shot on a good day and scheduled to post on a later date.

That article may have been written over the course of three weeks, in ten-minute increments, between rests.

Chronically ill and disabled content creators often utilize scheduling tools that allow content to publish automatically so the creator doesn’t have to be functional at the exact moment something goes live.

Content creation (especially asynchronous, self-paced content) is one of the few things that can accommodate a dynamic disability, because it has no fixed schedule, no attendance policy, and no requirement to be functional on demand. That is precisely why many disabled people gravitate toward it. It doesn’t mean they can do everything. It means they found the narrow thing that their body can sometimes do.

But, crucially, even asynchronous activities like content creation or even self-employment require consistency over time.

And if you’re not able to show up in the ways that “best practices” dictate, you’re not going to be as successful as able-bodied content creators or business owners who can.

Not to mention all of the start-up costs involved in things like self-employment that are often not things that chronically ill and disabled people can afford. Without being able to invest as much (or anything) we experience much slower than average growth.

That means that even when we can do asynchronous things, that does not guarantee we can earn enough money to live off of it.

Observing that narrow thing and concluding “therefore employment” is like watching someone use a ramp once and concluding they can climb any staircase.

What This Argument Actually Is

I want to close by naming what is really happening when someone says “if you can post on social media, you can work.”

It is an argument made in bad faith, dressed up as “logic”.

It assumes that disability is something static and that the barrier to employment is primarily motivation. It assumes that remote work is a silver bullet, and that a moment of visible capability represents a person’s full range of capacity. Every single one of these assumptions is wrong, and a few minutes of genuine curiosity would reveal as much.

The fact that these statements are made without questions, and the fact that they are stated as conclusions rather than as the beginning of a conversation, tells you that the goal was never understanding.

The people dismissing disabled people’s lived experience are not typically interested in understanding the actual barriers that those disabled people face. They are interested in a “gotcha”.

They’re simply after the relief of having an explanation that lets them stop thinking about it.

But you, reading this right now, can decide not to be that person. You can ask instead of accusing. You can follow your discomfort into curiosity rather than judgment.

And if someone in your life (or someone you follow online) tells you they cannot work, I'd invite you to believe them. Because the nature of these conditions is that they are largely invisible, and the moments you do see are not the whole story. The social media post is not the whole story. The good hour is not the whole story. The whole story is the barometric pressure drop at 9 a.m. on a Tuesday, the three days in a dark room that follow, and the person who was there for all of it, even though you weren't.

This world is cruel enough. Why choose to be judgmental when you could choose to be curious?

If any of this resonates with your experience, I’d love to hear from you in the comments. And if you found this useful enough to put in front of someone who needs to read it, please share it. That’s exactly why I write this way.

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Before I say anything else, I want to say this: the neurodiversity movement has done something genuinely extraordinary.

It identified, named, and began to dismantle a set of systems that had been quietly crushing people for generations. It gave millions of people a framework for understanding themselves that was accurate, maybe for the first time in their lives. It gave parents a way to understand their children, and children a way to understand their parents. It funded and inspired new research. It shifted, however slowly, the cultural conversation around autism and neurodivergence away from tragedy and toward something more honest. And I believe, without any way to prove it necessarily, that it has kept people alive who might otherwise not have chosen to stay. People who finally found the right context for their own experience and realized, “I’m not broken. I was never broken.”

That work is not finished. The differences between neurotypes are real, they are significant, and they need to be understood, researched, discussed, and accommodated. Full stop. Everything I’m about to say comes directly out of that understanding, not instead of it.

But I’ve been sitting with something for a few years now, and I think it’s time to say it out loud.

I think we’ve come to a fork in the road in the neurodiversity movement.

One path continues in the direction we’ve been going, which is documenting, articulating, and defending the ways in which autistic and neurodivergent people are different from neurotypical people. That work is necessary and I am not suggesting we stop doing it. But if it becomes the only path we take, I think we’re going to hit a wall. We may already be hitting it.

The other path is one I haven’t seen a lot of people take yet, and I understand why. On the surface, it looks like the path that leads straight to “we’re all a little bit autistic” (blech). It looks like (without being, as you will see if you dare to keep reading) the path of dismissal, of erasure, of the comments that have been used to deny us diagnosis, accommodations, and basic human understanding.

I want to ask you to take that path with me anyway, because I promise you: the destination is not what it looks like from here. The destination is actually greater understanding, greater empathy, and something that might start to dissolve the “us versus them” dynamic that has made this conversation so painful and so stuck.

But I need you to hang in there with me long enough to get there. I promise, as someone who has lived through decades of gaslighting and erasure and dismissal, I am not going to lead you anywhere that is going to subject you to any of that.

First, we need to acknowledge what we’re up against

If you’ve spent any time in autism or neurodivergence advocacy spaces, online or off, you know the comment I’m talking about.

“We’re all a little bit autistic.”

“Everyone’s a little OCD.”

“Yeah, but everyone does that.”

I’ve written about this before, in an earlier essay about why neurotypical people often struggle to accept autism diagnoses like mine. The short version is that when neurotypical people see autism diagnoses rising, something in their social survival wiring registers it as a trend that they’re being excluded from, and one of the ways they resolve that discomfort is to either collapse the category entirely (”only severe autism is real autism”) or dissolve it (”everyone’s on the spectrum somewhere”). Both moves protect them from the discomfort of feeling left out of a growing group. Neither move is made in good faith, even when it isn’t made in conscious bad faith.

I know this pattern intimately, because I have been on the receiving end of it my entire life. Before my diagnosis, my struggles were routinely framed as things everyone dealt with. After my diagnosis, people used the fact that they recognized in my experiences their own similar experiences as evidence that I couldn’t really be autistic. If they experienced something similar, and they weren’t autistic, they reasoned, then clearly the experience itself wasn’t autistic. The logic is circular and it is infuriating, and it has caused real harm, to me and to many people I know.

So I want to be very clear about where I’m standing when I say what I’m about to say.

I am not one of those people.

I am not trying to collapse the diagnosis. I am not trying to tell you that your struggles aren’t real, or that they’re the same as everyone else’s, or that you don’t need or deserve understanding and accommodation. I have lived too much of my own life on the wrong side of that argument to ever make it from the other direction.

What I am trying to do is give you a more complete picture. Because (and oh my god please bear with me because I swear this is not going where you think it’s going to go when you hear me say this) I think the neurotypical person who says “everyone does that” is not entirely wrong.

They’re just missing something crucial.

And until we hand them the missing piece, they’re going to keep using their incomplete understanding to dismiss us, and we’re going to keep dismissing their experience in return, and we’re all going to stay exactly where we are.

The neurotypical person who isn’t wrong

Imagine stubbing your toe.

You’re walking through your house, thinking about something else entirely, and you clip the corner of the coffee table with your little toe. The pain is instant and shocking and completely overwhelming. And what do you do?

You hop. You rock. You grab your foot and shake it. You might flap your hands or wave your arms. You might yell the same word over and over again, usually a cuss word, very fast, as a kind of verbal rhythm that helps you ride out the pain. You do all of this involuntarily, without thinking about it, because your nervous system just took on an acute burst of sensory input so intense that it needed an outlet.

What I just described is stimming.

Now picture a different scenario. Someone has had one of those days where everything went wrong at once. They got devastating news in the morning. Then another piece of bad news at lunch. By the time they get home that evening, they are already at the edge of themselves. And then their partner, who doesn’t know any of this yet, is sitting at the kitchen table tapping a pen.

Tap… tap… tap… tap… tap…

And the person loses it. They snap, or they burst into tears, or they have to leave the room. Something they would never normally even notice has just sent them over the edge.

This is sensory overload. Specifically, this is what happens when a sensory threshold gets breached by one small thing after the threshold has already been pushed to its limit by everything that came before it.

We even have a phrase for it in everyday language. We call it “the straw that broke the camel’s back.”

That phrase is literally a description of sensory threshold dynamics.

Because, of course, a straw cannot break a camel’s back on its own. It can only do that when it lands on a load that was already at its maximum. The “breaking” is what comes after the sensory threshold has been exceeded.

So when a neurotypical person looks at an autistic or neurodivergent person and says, “I experience sensory overload too, I experience stimming too, I experience meltdowns too,” they are not lying or exaggerating. They are not making it up to dismiss you (except for the ones who are trying to say it dismissively, which is another conversation entirely). Most of the time, they are accurately reporting their own experience.

They’re just missing the part that explains why yours is different.

On Thresholds

Every nervous system has a sensory threshold.

It’s the point at which incoming sensory information exceeds the nervous system’s ability to process it in real time.

Past that point, the system does what overwhelmed systems do. It sounds the alarm, it looks for release valves, and it prioritizes survival over everything else.

What most people don’t realize is that this threshold isn’t a fixed line that’s the same for everyone. It’s not even really a line. It’s more like a load limit, and that load limit is shaped by how much sensory information you’re taking in to begin with.

Research shows that autistic and neurodivergent nervous systems quite literally process more sensory information at rest than neurotypical nervous systems do. We’re talking more actual sensory data, coming in from more channels, at higher resolution, processed more deeply, even when nothing particularly stimulating is happening.

Neurotypical nervous systems have something that functions as a filter. It’s not a conscious process, exactly. It’s just the way those nervous systems are built. A lot of sensory information that’s technically present in the environment gets de-prioritized before it even fully registers to the brain or nervous system. Things like the flickering of fluorescent lights, the hum of an HVAC system, the slight scratch of a clothing tag and the overlapping conversations happening across a room get filtered out. For a lot of neurotypical people, this information simply doesn’t register in any significant way.

For autistic and neurodivergent nervous systems, it all makes it through. Every bit of it, and at full volume.

This means that by the time an autistic person has woken up, gotten dressed, and arrived somewhere, their nervous system has already processed an enormous amount of sensory data from the tag in their shirt to the sound of traffic to the particular quality of the light in the room to the smell of someone’s coffee to the aches and pains of their body to the dread they have about socializing that day to the ambient noise of other people just existing nearby. All of it has been taken in and is waiting to be processed.

But before it can be processed, even more sensory information comes in unbidden.

The load is already heavy before the day has even really, properly begun.

So when something happens that would normally be manageable, it sometimes isn’t, because “manageable” assumes a starting point that doesn’t apply. When the neurotypical person’s pen tapping sends an autistic person over the edge, for instance, it’s not because the pen tapping is objectively intolerable. It’s because the pen tapping landed on a load that was already at its maximum.

And this is why the neurotypical person saying “I experience that too” is both right and incomplete. They do also experience it. They experience it at the coffee table corner and the pen-tapping moment and the bad-news-on-bad-news day and having to hold their pee when they really, really gotta go. Those are the moments when their nervous system’s load approaches its threshold. They know exactly what it feels like to be there.

What they don’t have is the experience of starting every single day already close to that threshold, because they can’t quite imagine what it would be like to take in the world at that volume and at that resolution without the filter running.

What this means for advocacy

I want to say something that might be the most important part of this whole essay, and also the part that requires the most trust from you.

When the neurotypical person says “everyone does that,” and we respond by insisting that no, actually, our experience is completely different from theirs, we are, technically speaking, doing to them exactly what has been done to us.

I know, I know. Please, just stick with me a little bit longer. I’m not taking you anywhere painful.

In dismissing their experiences entirely, we are dismissing their actual real experience in order to defend the category. And however justified that defense is, it does have a cost. And that cost is that they stop listening.

They stop listening because being told your experience isn’t real, or doesn’t count, or is categorically different from someone else’s in ways you can’t perceive, doesn’t make you more curious. It makes you defensive. It makes you dig in. It makes you, paradoxically, even more certain that you were right to begin with.

We already know what it feels like to be on the other side of that dynamic, because we live there. And knowing that, I think we have an opportunity to do something different.

What if we said: “You’re right. When you stubbed your toe, you stimmed. When your threshold got pushed past its limit, you went into sensory overload. That is real, and it is exactly what you think it is. Now let me tell you why my threshold is closer than yours on an average Tuesday, and why that means I still do need accommodations that you may not need.”

That’s an invitation. It acknowledges their experience as real and then uses that real experience as the bridge to understanding something they couldn’t otherwise access.

The neurotypical person who can look at their own toe-stubbing meltdown and suddenly understand why fluorescent lights might register the same way for an autistic person is not a person who has been told to stop trusting their experience. They’re a person who has been handed a new lens for looking at it.

And a person who understands you from the inside, from their own felt experience of something parallel, is a much more reliable ally than a person who has accepted your reality only as an act of charity.

Because that’s a person who is now capable of empathy where before they were only capable of dismissal.

What I’m not saying

Again, I want to be precise about this, because precision really matters here.

I am not saying autistic and neurodivergent people are the same as neurotypical people.

We are not.

I am not saying our struggles are equivalent to theirs.

They aren’t.

I am not saying that neurotypical people experience sensory overload at the same frequency, intensity, or baseline proximity as autistic and neurodivergent people do.

They don’t.

I am not saying that recognizing shared experiences means the differences don’t need to be accommodated.

They absolutely do.

What I am saying is this:

Many of the mannerisms and behaviors we associate with autism and neurodivergence are not alien. They are overwhelmed human responses. They are what human nervous systems do when they hit their load limit. The difference is where that limit sits, and how quickly and how easily it gets approached on any given day.

Autistic and neurodivergent people live much closer to that limit, much more of the time, because we are processing more without adequate time to fully process it all before more sensory information comes flooding in again.

That is a real difference.

It has real consequences. It requires real understanding and real accommodation.

But the way there is not by insisting that neurotypical people have no idea what any of this feels like. They do. They just don’t live there the way we do.

And until we acknowledge that one true thing, the wall between us is going to stay exactly where it is.

Where I’m hoping this goes

The neurodiversity movement has done the necessary and vital work of establishing that we are different, that those differences matter, and that the systems around us need to change to accommodate them. That work has to continue. I’m not arguing that it shouldn’t.

But I think the next step, the step that actually moves us out of the place we’re stuck in, is building the bridge, and not at the expense of the differences, but alongside them.

We need to adopt the principle that two things can be true simultaneously. We are different and we are more alike than either of us has been willing to admit yet. Both of those things are true at the same time. And I think holding both of those things at once, without collapsing either one, is the thing that will actually and meaningfully change the conversation for the better.

The straw breaks everyone’s back eventually. We just get there faster, and more often, because we’re carrying more than most people ever see.

That’s not a deficit. That’s just a higher resolution perception of the world.

And maybe, if we can find a way to say that in a way people can actually hear, we can stop fighting about who’s allowed to feel overwhelmed and start building something that works better for all of us.

If this resonated, I’d love to hear about it in the comments, especially if you’ve found language that bridges this gap in your own life. And if you’re new here, this essay is part of a larger conversation I’ve been building at Chronically Misread. The archive has more context for everything I’ve touched on here.

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A note before we start: Autistic people are not a monolith. Not everything here will resonate with everyone, and that’s okay. But I do think there are themes across our neurotype (and across all of humanity) that are important to talk about. Take what fits and leave what doesn’t.

I’m the youngest of five kids.

My four older siblings all had after-school jobs in high school. It was a non-negotiable rule in our house. My father wanted us to learn the value of hard work and to become self-sufficient as soon as possible.

My siblings seemed to manage it okay. I couldn’t.

My father was exasperated with me. After many lectures and “why can’t you be like your siblings” type discussions, it was concluded that I was simply irresponsible and allergic to work. I was also selfish, reckless, and delusional in what I expected from life.

Even though I felt in my heart of hearts that these things weren’t true, I didn’t have a rebuttal, because even I didn’t understand what was happening. His “tough love” conclusions, however unflattering, seemed plausible in the absence of any other obvious explanation.

It wasn’t until much later in life that I started getting answers. I learned that I had grown up in a body with several undiagnosed genetic conditions and undiagnosed autism. These diagnoses explained a lot about the often invisible barriers I was running into that made employment so untenable for me, and for a while, I thought they explained everything.

But there was something none of my diagnoses fully accounted for, something I kept circling back to without ever quite being able to name it.

It took me until recently to finally put my finger on it. But once I did, I realized it wasn’t just relevant to my own story.

In fact, I think it’s one of the most overlooked and under-discussed reasons why so many autistic people struggle to find and keep employment, and why so many of us burn out long before anyone understands why.

What I couldn’t do, in any of those jobs, was sustain effort and energy toward anything that felt fundamentally misaligned with who I was.

I know, I know. That does sound a lot like a princess-y preference, doesn’t it?

I thought so too, for a long time.

But the more I've understood about what was actually happening in my body and nervous system, the harder it became to dismiss that explanation.

Turns out, there is an actual physiological reality and a cascade of measurable consequences beneath that misalignment for an autistic nervous system.

And I want to share what I’ve discovered with you.

Rants That Are Actually Answers Hiding in Plain Sight

The answer came from somewhere I wasn't expecting, and at a time when I wasn't even looking for it.

I was reflecting on my own winding journey through work and purpose when I noticed something that seemed, at first, almost too simple to be significant. What I couldn't have known then was that this small observation would eventually lead me all the way to understanding what misalignment does to an autistic nervous system at a physiological level (and what that has to do with the high incidence of autistic burnout). But it started somewhere much more personal than research papers and cortisol studies.

It started, of all things, with rants.

I have a brother who used to go on long, passionate, animated rants about how poorly designed things were. He would vehemently critique everything from everyday objects to interfaces to systems. “Why would they build it like this? This makes NO sense! Someone didn’t think this through.”

He went on to become an engineer.

I have a sister who used to get genuinely, deeply upset about how children with special needs were treated in school settings.

She went on to have a successful career in special education administration.

I had a friend who, every time we passed an office building with sad, neglected potted plants, would launch into a full monologue about how awful most businesses were at caring for living things.

He now has a career caring for plants in office buildings.

And me? I was the one who couldn’t stop talking about social justice, about the underdogs of society, and about why certain people kept getting left behind. I couldn’t stop interrogating systems that were supposed to help us, but didn’t. I couldn’t stop measuring the gap between what we say we value and how we actually treat the most vulnerable among us.

I’m now a disability advocate and writer.

Every person I just described is autistic.

And in every single one of these cases, the pattern is the same: a strong, persistent, seemingly inexhaustible emotional reaction to a specific problem in the world. We often describe this as the “autistic sense of justice,” and yes, that’s part of it.

But I think we’ve been looking at it wrong (or rather, looking at only half of it).

And that other half of the equation, once you see it, reframes everything: why so many of us burn out, why we burn out so fast, and why no amount of sensory accommodations or executive function strategies fully explains it.

What We Keep Getting Wrong About Autistic Justice

When researchers and clinicians talk about the autistic sense of justice, they tend to focus solely on the injustice part. They reduce this down to the idea that autistic people are sensitive to unfairness, in general. That we have strong moral frameworks. That we become dysregulated when we perceive something as morally or ideologically “wrong”.

As an autistic person, I’d say that’s all, for the most part, true.

But we don’t pay nearly enough attention to what in us is reacting to that injustice.

It’s not that all autistic people have a blanket sensitivity to all injustice equally. Talk to almost any autistic person long enough, and you’ll start to hear what gets them, individually, riled up. And it’s not random, and it’s not interchangeable from one autistic person to the next. It’s always, always pointing somewhere specific.

My brother didn’t equally rant about bad schools and bad product design. He ranted about bad design. My sister didn’t equally rant about environmental destruction and educational neglect. She ranted about kids being failed. My plant-loving friend wasn’t equally passionate about all of it. It was, primarily, the plants.

That’s not to say that they didn’t also dislike or speak out against other forms of injustice. They did. It’s just to say that they especially and repeatedly and continually would give impromptu TED Talks about very specific types of injustice that riled them up in particular.

What’s lighting up when we encounter “our” personal injustice isn’t just a sensitivity to general unfairness.

The part that most people haven’t even considered looking at yet is passion. It is our deepest, most automatic caring. And in almost every autistic person I know, that passion is consistent, persistent, and specific in a way that (if you know to look for it) functions exactly like a compass.

We’ve been so focused on the injustice that we’ve missed the passion it’s pointing toward almost entirely.

I’d argue that unique passion is inextricably tied to who we are, in some fundamental way. And I’d argue that for a significant number of autistic people, trying to function in ways that are completely disconnected from that passion doesn’t just feel bad. It costs something tangible and real, real downstream physiological impacts.

And that cost, the real, measurable, physiological one that I've been building toward this whole time, is exactly what I want to talk about next.

The Hidden Energy Drain

I encountered this drain early in life, first in school and later, when I first entered the work force as a teenager.

And here’s what my high school jobs had in common. The company didn’t exist in a way that I respected. I didn’t agree with how they treated their employees. I didn’t believe in what they were selling, or I thought it was actively harmful, or I thought the whole operation was structured in a way that made no sense.

I couldn’t get behind the why.

And we know, as a documented autistic trait, that we tend to need to understand and agree with the “why” of things before we can do them. This is usually discussed in the context of instructions, but I don’t think we’ve applied that insight far enough. We haven’t followed it to its logical conclusion: what happens to an autistic person who has to sustain effort, for months or years, toward a “why” they fundamentally don’t believe in?

What I experienced in those jobs, and what I’ve heard echoed back to me by so many autistic adults, was this:

I couldn’t get away from the job even when I wasn’t there.

On shift, I was running constant mental gymnastics just to stay, talking myself out of walking out every hour. I was managing the sensory stuff, the pain, the social stuff, the exhaustion, all of that, yes. At some jobs, I’d have to excuse myself to go to the bathroom just to have a moment to recover, or to cry. I’ve melted down in bathrooms at work more times than I can count. But layered on top of all of that was something else: the constant pull of a compass needle trying to point me toward my true north, and the equally constant effort of having to steer it back toward whatever direction the company was headed.

Imagine a car with a bad alignment that’s constantly pulling to the right. You’re constantly having to correct for it just to stay in the lines. Imagine the extra effort that takes, how much more tired your arms become on a long drive, how much more mentally exhausted you become from having to stay alert for the pulling and manually correct the wheel. You may drive the exact same distance as someone else, but it’s a far more grueling experience, and you feel beat to hell afterwards.

For me, the “afterwards” started on the drive home. The whole way, I’d be processing what had just happened, the all-out assault on my senses, the constant course-corrections. When I got home, even when I tried to relax or decompress, I’d ruminate. I’d mentally argue with myself about whether to come up with an excuse to call out the next day, because it was genuinely anguishing to confront the idea of going back. I’d scan for other jobs. I’d be unable to enjoy my evenings because the morning loomed. I’d lie awake running calculations: if I quit now, can I pay for this? What would I even do instead?

None of that mental activity is free. All of it costs energy. Real, physiological energy.

Think of it like background programs running on a computer. You can’t see them on your screen, but they’re consuming processing power and battery. The machine runs hotter, it slows down, and the battery drains faster than it should.

For autistic people, this is more than a metaphor. Research shows that autistic nervous systems already exhibit atypical stress responses, with documented dysregulation of the HPA axis (the body’s primary stress response system) and elevated cortisol in response to everyday social and environmental stressors that a non-autistic person’s system might not register as threatening at all.

In other words, the autistic nervous system is often already working harder just to get through an ordinary day. Our thresholds for sensory and social overload are lower, and we surpass them sooner. Chronic misalignment adds sustained, low-grade stress on top of that baseline, keeping the body in a prolonged state of hyperarousal.

And here’s the part that makes this particularly invisible: many autistic people also have differences in interoception (the internal sense that tells you how your body is actually feeling) as well as alexithymia (difficulty identifying, processing, and describing personal emotions). The stress signals are often missed or misread until the system is well past its limit. The warning lights don’t go off the way they’re supposed to. So the drain continues, undetected, until it can’t anymore.

That background drain, the constant dread, the scanning, the endless internal negotiation, is happening on top of everything else. On top of sensory overload. On top of social exhaustion. On top of masking fatigue. On top of the ordinary stress of having a job. For autistic people who also live with chronic illness or chronic pain, add that to the pile, too.

The result is that autistic people are running far more background programs than our neurotypical counterparts might be in the exact same situation, because we feel this misalignment more keenly, just as we tend to feel everything more keenly. We don’t do vague dissatisfaction easily. We don’t compartmentalize well. The misalignment leaks into everything.

When I was working jobs that felt wrong, I had nightmares most nights. The nightmare was just me, at the job. My brain was trying to process the overwhelm before having to launch right back into it the next morning, but the end result was that I never felt like I had left work. In a real sense, I hadn’t. We go home, but our nervous system keeps operating as though it’s still there. The stress hormones keep flowing. The body stays in a low-grade fight-or-flight state, the slow-burn kind, the kind that exhausts you as thoroughly as if you’d been running, even when you’ve barely moved.

And then we wonder why we burn out.

A Note on Thresholds (Or: Why “That Happens to Everyone” Is Both True and Beside the Point)

If you’ve ever shared something about autistic burnout or sensory overload with someone who doesn’t get it, you’ve probably heard some version of this: “Well, that happens to everyone.”

And here’s the thing. They’re not wrong.

Almost everything I describe when I talk about autistic burnout, the sensory overload, the social exhaustion, the way misalignment drains you, neurotypical people experience all of these things too. The experience itself is not exclusive to autistic people.

What’s different is the threshold.

Think about what it takes to push a neurotypical nervous system to its limit. Holding your bladder for an uncomfortably long time. Being in acute pain after an accident. Active labor. Extreme sleep deprivation. When neurotypical people hit those outer limits, something interesting happens: they start exhibiting behaviors that we tend to think of as distinctly autistic. They rock. They stim. They lose the ability to speak in full sentences, or at all. They become unable to filter sensory input that they’d normally ignore without effort.

The behaviors aren’t different. The threshold for reaching them is.

For autistic people, that threshold is simply much lower, and in many cases, it was always lower, from birth, without our ever knowing it was supposed to be otherwise. The fluorescent light that a neurotypical coworker genuinely doesn’t notice might be landing on our nervous system the way discomfort from holding their bladder for ours lands on theirs. The ambient noise of a busy office might be hitting us the way acute pain hits them.

So when someone says “that happens to everyone,” the generous and accurate response is: yes, and that’s exactly the point. The experience is shared. The distance to get there is not. And when you’re starting that much closer to the edge, you don’t need extreme circumstances to go over it. Ordinary life is often enough.

Keeping that in mind makes what I want to say next about burnout a lot easier to understand.

What We're Still Getting Wrong About Burnout

Autistic burnout is real. It’s documented, and it’s serious. But I want to suggest a change in how we talk about it.

We tend to describe it as: too much energy out + not enough energy in = net deficit = burnout. And that’s true. It’s just incomplete.

We’ve gotten better at recognizing that kinds of energy in that equation matter, and that, for instance, stimming can be restorative while masking is depleting. And that is an important nuance to keep in mind when we’re discussing autistic burnout and recovery.

But we’re still leaving something out. We’re still not accounting for the energy that bleeds out through misalignment.

And that is a bigger oversight than you may realize at this point.

And before I go any further, a clarification is in order. When I use the word “purpose,” I’m not talking about some cosmic assignment handed down from above. I’m talking about the internal compass that I believe everyone has. It’s that feeling of being inexorably drawn to some area of life, again and again. It’s the thing that was always there that was already pointing somewhere before you even had words to describe it. It’s the thing that made my brother rant about bad design and my sister rant about failed kids and my friend rant about dying plants. That thing. That’s what I mean when I say “purpose”.

When I got clear on my own purpose, I didn’t suddenly have more energy. I didn’t wake up cured of anything, ready to take on the world.

But I stopped hemorrhaging energy toward things that were draining it for nothing.

All that mental activity. from the scanning to the endless dread and rumination, all of that stopped being where my energy went.

And it became available for this. For writing. For advocating. For the thing that was always trying to get my attention, the thing I kept dismissing because it didn’t feel “practical” enough.

The water didn’t increase. But I plugged a hole that had been leaking it for years. And what’s more, when the water goes toward something that actually lights you up, it becomes restorative. You get some of it back.

What Alignment Actually Looks Like

I’m not saying everyone needs to turn their passion into a monetized career. I’m not saying purpose is a destination you arrive at. I’m not saying there’s one right answer that’s yours to discover if you just journal enough.

What I’m saying is that there is something in you that has always cared deeply about a specific thing. It might be a problem in the world. It might be a craft. It might be a community. It might be something that seems small from the outside, something like local history, animal welfare, the structural integrity of buildings, or the way plants respond to care. It doesn’t have to be grand.

But it’s consistent. It’s not chosen, exactly. It doesn’t require you to talk yourself into it. It’s just there, like a radio station you’re naturally always tuned to.

For some autistic people, that thing can become a career. For others, it becomes volunteer work, or a creative practice, or simply the organizing principle around which everything else is built.

What matters is it is aligned with your own internal true north.

Because when you’re aligned, and when the thing you’re putting your energy toward resonates with that internal compass, you stop running those background programs. You plug up holes you didn’t even realize you were leaking energy from. Your nervous system gets to down-regulate. You’re not mentally arguing yourself into staying. You’re not dreading tomorrow in the same way.

You can actually rest. And, suddenly, rest is actually restful again.

The Rant Is a Compass

So here is the practical thing I want to leave you with, if you’re autistic and struggling to understand why work has always been so hard, why you seem to hit burnout faster than everyone else, why you keep burning out even when you’re trying to follow advice like “stim more” or “reduce high-demand tasks”, or why nothing seems to stick:

Ask yourself: What do I rant about?

I’m not asking you to inventory your special interests, though there may be overlap. I’m also not asking you what you wish you were better at or what might make the most money if you were able to monetize it.

Instead, I’m asking you: what is the one problem in the world (or in your life, or in your community) that you keep returning to? The thing you bring up when people probably wish you wouldn’t? The thing you’ve always brought up? The thing that you literally cannot shut up about?

That rant is your compass, and it’s been working this whole time. You’re so exhausted because you’ve been taught to resist its tugging your whole life and spend most of your energy trying to force it to point elsewhere.

We’ve been told that autistic people struggle to find and keep work because of our difficulties with social dynamics, sensory environments, executive function, and flexible thinking. All of that is real and does absolutely contribute to struggles with employment.

But we’ve left out the fact that autistic people experience misalignment (the friction between who we are and what we’re being asked to do) at a level of intensity that is in itself a barrier. We’ve failed to account for the background programs that are constantly running and how much energy that wastes.

We’ve left out the possibility that many of us aren’t burning out just from work, and that we’re often burning out from the wrong work.

The compass hasn't been broken this whole time. You've just been taught to distrust it.

It’s about getting quiet enough and curious enough to shut out all the noise and check in with yourself on what fires you up.

That’s the direction to head towards.

You’ll find it takes a lot less energy to travel there than it does when you’re traveling in the wrong direction.

If this resonated with you, I’d love to hear what your rant is. What’s the thing you can’t stop coming back to? You can leave a comment below or reach me directly. And if you know someone who’s been written off as “can’t hold a job,” share this with them. Sometimes the right words at the right time make the difference.

I genuinely want to know: what's your rant? What's the thing you can't stop coming back to? Leave your answer in the comments.

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A note before you begin: There's a companion PDF waiting at the end of this article (The Medical Appointment Survival Guide). It includes scripts, a preparation checklist, a documentation template, and a guide to contesting inaccurate medical records. It'll be there when you're ready for it.

I had been having a right-sided migraine for a week straight.

The vertigo had started weeks before that, severe enough that I needed help getting to and from the bathroom and onto the toilet. I couldn’t move my head from side to side without the world lolling drunkenly. I couldn’t sit up without my heart racing like I was being chased or my neck and shoulders locking under the unrelenting grip of searing pain. The muscles on the right side of my throat felt weak and it made it hard to swallow.

My doctor (I thank my lucky stars every day that I somehow found her) sent me to the emergency room. She wanted to rule out a stroke. She also wanted, if possible, to get an MRI to check for something she suspected: a Chiari malformation, a structural abnormality at the base of the brain that can cause exactly the constellation of symptoms I was experiencing.

My insurance agreed to pay for the CT scan, but only the CT scan.

No stroke. Thank God. I at least had peace of mind about that even if I didn’t have any other answers.

What followed was a months-long process of my doctor carefully, quietly, navigating the obstacle course my insurance company had constructed between me and the imaging she believed I needed. Six weeks of physical therapy (twice a week, being driven there and back by my partner and mostly lying on a table because sitting upright was still nearly impossible) because the insurance company required documented evidence of “conservative treatment” before they would consider authorizing an MRI. I had an X-ray that revealed four slipped discs from Degenerative Disc Disease. All of it assembled, piece by careful piece, as evidence. As proof of “medical necessity”. As a performance of due diligence for an audience that was committed to being almost impossible to satisfy.

Eventually, the MRI was authorized, months after my doctor first tried to order it. Months of pain, of waiting, and of being bedbound.

I had the MRI. I waited weeks for results. And when they came, I realized (with some dismay) that it was a cervical MRI starting at the C2 vertebra. It didn’t image the area of the brain that would need to be seen to check for a Chiari malformation at all.

What. The. Hell.

When I looked into it, I realized (with some relief) that it was not because my doctor made an error. As I should have predicted, it was my insurance company requiring a pound of flesh again. They required the cervical MRI before they would authorize a brain MRI (why is absolutely beyond me. Doesn’t it cost the same amount to run the MRI machine no matter which area of the body you’re imaging?). It was another step in the obstacle course and another piece of documented evidence. Another proof of “necessity” for the people who have a financial interest in finding everything unnecessary.

This all began in December 2025. It is now late April 2026. I am still waiting for the brain MRI and for answers. I do have a referral to a neurosurgeon, though, because the cervical MRI showed how badly nerves are being compressed, at least accounting for the shoulder and upper back pain, if nothing else.

I am telling you this story not to make you angry (though you may be, and that anger is entirely warranted) but because I want you to understand something before we go any further: the problem is not always a “bad doctor”. Sometimes it is (and you better believe I’ve gone through plenty of those in my chronic illness journey). But much of the time the problem is the structure the doctor is operating inside. And understanding the difference is one of the most important tools you have.

What doctors are actually supposed to do, and why you are not wrong for needing them to do it

Let’s start here, because too many of us have been so thoroughly trained to feel like a burden that we need to hear this spoken really plainly:

You are allowed to go to the doctor.

You are allowed to report symptoms. You are allowed to ask questions. You are allowed to request tests, seek second opinions, push back on diagnoses that don’t fit, and keep going back when something is wrong. This is not demanding or dramatic. It is not, in the favored language of people who would prefer you to be quieter, “attention-seeking”.

Actually, let’s talk about that phrase for a moment.

“Attention-seeking” is deployed as an insult, a diagnosis, and a way of dismissing someone’s distress without having to engage with it. But strip away the contempt and look at what the words actually mean.

Seeking attention. Seeking the notice, the care, the clinical engagement, of a medical professional for symptoms that are distressing and disruptive to your life.

That is precisely what a patient is supposed to do. That is the entire basis on which medicine as a profession exists. The implicit contract of every doctor’s appointment ever scheduled is: I have a problem, and I am seeking your professional attention for it.

Calling a patient attention-seeking as if it were a character flaw is the medical equivalent of calling a customer demanding for expecting a restaurant to bring them the food they ordered. It is a deflection. It is a way of making your entirely reasonable expectations the problem, rather than the system’s failure to meet them.

It’s basically DARVO (Deny, Attack, Reverse Victim and Offender), a technique employed by narcissistic individuals to deny accountability, attack the person trying to hold them accountable, and reverse the roles of who is “really” the victim and the offender in the situation, leading the person asking someone to be held accountable to become the “real” offender.

But just stop for a minute and peel it back to its most basic format. You are not wrong for having symptoms. You are not wrong for reporting them. You are not wrong for persisting when you are dismissed. You are not wrong for knowing your own body.

That is exactly what a patient is supposed to do, and doctors are supposed to meet you there and help you.

Read it again if you need to.

You are not wrong.

Why this is happening: the system, not just the individual

Here is a thing that I believe to be true, and that I think matters enormously for how we navigate medical settings:

Most doctors are not, individually, narcissists or sadists or people who delight in dismissing sick patients. Some are, and we will talk about how to identify and exit those relationships. But most are not.

What they are is human beings operating inside a system that is, by design, is narcissistic and incentivized toward disbelief.

The insurance problem

Private health insurance, in the way it currently functions, is not a healthcare delivery system. It is a financial product. And like all financial products, its primary obligation is to its shareholders, not its customers. The most profitable insurance company is the one that collects the most premiums and pays out the fewest claims. This is not cynicism. These are just the facts as they exist. This is the structural logic of the industry.

What this means in practice is that insurance companies have a direct financial interest in finding medical procedures unnecessary until they absolutely cannot avoid the contrary conclusion. Every “prior authorization” requirement, every demand for documented “conservative treatment”, every step in the obstacle course between a patient and the care their doctor has recommended, exists in service of that interest. They are, functionally, practicing medicine without a license (overriding clinical judgement with financial calculation) and they have constructed a system in which even good doctors must play by their rules.

My own good doctor could see what I needed. She has been practicing medicine for years. She examined me, took my history, applied her clinical knowledge, and reached a conclusion. And then she had to spend months constructing a paper trail to satisfy people whose medical qualifications begin and end with a profit motive.

The disbelief you encounter in medical settings is not always coming from the doctor in the room. Often, it is coming from the insurance company the doctor is trying to navigate on your behalf, and the doctor cannot always tell you that directly.

The pipeline problem

There is something else worth understanding about the medical profession, and it is not often said clearly enough:

The educational and training pathway to becoming a doctor is long, expensive, brutally grueling, and structured in ways that are (intentionally or unintentionally) hostile to disabled people. This includes years of demanding academic work, decades of student debt (for those not financially well off enough to not need student loans), and residency programs built around 14, 16, 18 hour shifts that treat the capacity to push past your physical limits as a virtue and a prerequisite.

The people most likely to make it all the way through that pipeline (and to have the financial resources to sustain it, the physical stamina to survive it, the family background that makes it a viable path) are disproportionately wealthy and able-bodied. This is not an accusation against individual doctors. It is an observation about structural selection bias.

What it means is that a significant proportion of people practicing medicine have never personally navigated chronic illness or disability. They’ve never had to, and as such may have genuinely no framework for understanding what it is like to live in a body that does not cooperate, to have your experience dismissed, or to need help with basic functions. And then they enter a profession where they are expected to understand exactly that, without having been required, at any point, to develop that understanding.

Add to this the financial reality of private practice: to remain solvent, practices must see a certain number of patients per day. Complex, chronically ill patients take more time. They have longer histories, more symptoms, more questions, and more to document. In a system where time is the resource that cannot be extended, complexity becomes, functionally, an inconvenience, and not necessarily because your doctor is a bad person, but because the economics of how medicine is delivered make it structurally difficult to give you what you actually need.

You are not imagining the sense of being rushed. You are not imagining the feeling that your complexity is unwelcome. The system is not built for you. Understanding that does not make it acceptable (it is far from acceptable) but it is the starting point for knowing how to work within it.

None of this is your fault. And none of it means you are powerless.

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Content note: This post contains a first-person account of a medical emergency, descriptions of medical gaslighting and illness invalidation, and discussion of the broader pattern of disbelief that chronically ill and disabled people commonly experience. For those who have lived through similar experiences, some sections may be activating. There is no pressure to read all at once. This will be here whenever you are ready for it.

My heart rate was over 180 beats per minute when I hit the floor.

I remember the room tilting and the shock of the cold linoleum. I remember the vague blur of people moving around me, my perception of the environment shrinking to an area about six inches in any direction. I remember the ambulance. And I remember the paramedic’s smug smile as he leaned over me and asked, “So, when did your anxiety start?”

As calmly as you can say anything when your heart rate is going that fast, I hissed through clenched teeth: “I do have anxiety, but anxiety is not causing this.”

He didn’t look at me when I said it. He looked across the stretcher to his fellow paramedic, sharing a knowing glance, that smug smile never leaving his face.

At the hospital, I was given fluids and a beta blocker. My heart rate gradually came down. A few hours later, that same paramedic appeared in the doorway of my room. He looked at the monitor and nodded slowly, with the particular satisfaction of a man who has been proven right. Then he tapped the doorframe with his hand, almost like a private salute to himself, and walked away without a word.

My blood boiled.

He never asked what had actually caused my heart rate to spike. He never asked how I was feeling. He had formed his conclusion before he had finished asking his first question, and my monitor had “confirmed” it to his satisfaction.

A few weeks later, I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), a condition in which the autonomic nervous system fails to regulate heart rate properly upon standing, causing it to spike dramatically. It was the first of many diagnoses to come. It was also a condition that explained, with clinical precision, everything that happened that day.

The Pattern

Here is what I have come to understand after decades of being chronically ill, multiply disabled, and late-diagnosed autistic: what happened in that ambulance was not a one-off. It was a pattern. And if you are chronically ill, disabled, or neurodivergent (especially if you are a woman), that pattern has almost certainly shown up across every significant relationship of your life.

Medical appointments. Family dynamics. Close friendships. Intimate relationships. For those who are able to work, the workplace too. The same dismissal shows up in different contexts, but always with the same message:

Your experience of your own body, your own mind, and your own life cannot be trusted. Neither can you.

This pattern can be difficult to recognize because it takes different forms across different areas of life, and because patterns are often easier to identify in hindsight than as they gradually unfold. But once you see it, and once you understand not just what is happening but why, everything starts to make a different kind of sense.

For many of us, by the time we arrive at a doctor’s office, we have already been conditioned to expect disbelief. We have learned to downplay our struggles to avoid being labelled dramatic. Somewhere beneath it all, we may have begun to question whether our bodies are misleading us, or whether we are misleading ourselves.

These beliefs often take root long before any medical encounter, emerging from earlier and more intimate experiences. This series is about tracing them all the way back to where they started, and understanding the whole pattern well enough to interrupt it.

What this series covers

Over the coming months, this series moves through every relationship in which disbelief tends to find us, examining each one in depth, with the psychology behind what’s happening, the systemic forces at work, and real strategies and scripts drawn from four decades of lived experience.

It begins in the doctor’s office and the broader medical system, where most of us first consciously experience this type of disbelief, and asks why a dismissive appointment feels like so much more than just a bad appointment. From there, the series excavates early home life, where the roots of this pattern of disbelief are often buried deepest. It then examines disbelief in our intimate relationships unflinchingly, turns a careful eye to our friendships and the particular grief of watching people quietly fade when they don’t know how to stay, and finally confronts the unique power dynamics of professional disbelief, including the specific difficulty of advocating for yourself when the person you’re speaking to has direct power over your livelihood.

Each installment comes with a companion PDF guide (practical, printable, and designed for real-world use). Something you can bring to a doctor’s appointment, share with someone in your life who wants to understand, or turn to in a waiting room when you need the words and can’t find them.

The first installment publishes April 27. Free subscribers will have access to the opening personal essay, a full examination of the systemic and structural forces driving medical disbelief, and an explanation of why these appointments so often feel like more than just a bad appointment. Paid subscribers receive everything beyond that, including the complete scripts and language strategies, the documentation toolkit, guidance on contesting inaccurate medical records, how to identify when a doctor is not working for you and how to find one who will, and the companion PDF guide, printable and designed to be taken into real medical situations.

This structure carries through every installment in the series. Free subscribers will always receive the opening personal essay and the contextual analysis (the why behind what is happening in each relationship type). Paid subscribers receive the full practical toolkit for each one, including the scripts, the strategies, the boundary-setting language, and a companion PDF guide designed for real-world use.

If you have been looking for something concrete to help you navigate a world that too often fails to believe you, upgrading is a good place to begin.

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I’ve been thinking about pain and its performance.

Pain is something I know intimately. I’ve had debilitating migraines since I was eight years old. I was born with a connective tissue disorder (Ehlers-Danlos Syndrome) that has caused joint dislocations, tendon tears, spinal stenosis, four herniated discs in my neck, and a cascade of complications that have shaped every decade of my life. I’ve given birth twice with no pain medication, both times while unknowingly navigating advanced scoliosis that prevented me from ever feeling the urge to push (which resulted in my labors being much longer and much more painful than they needed to be). I’ve had a frozen shoulder so severe that any arm movement could knock me to the ground in pain. I now spend most of my time horizontal because sitting upright for more than ten minutes produces scorching, nauseating pain in my neck and shoulders.

I’m not listing these things to compete for suffering. I’m listing them because I want to establish something. I have spent my entire life inside chronic pain, and that prolonged residency has taught me things about pain that medical textbooks (and, unfortunately, too many doctors) seem to have missed entirely.

Here is what I have learned.

When you don’t know where pain is coming from, when it’s new, or when it arrives without context, it is significantly worse to navigate than pain you recognize and expect. And that’s not necessarily because the physical sensation is more intense, but because of everything the brain adds on top of it.

It’s similar to how traveling to a new destination often feels longer than the return journey. On the way back, the route is more familiar and you know what to expect, which makes the trip seem shorter. Even though the travel time is the same in both directions, the experience feels different because the initial journey is unfamiliar.

My first migraine, at eight years old, was terrifying in a way that migraines rarely are for me now, even when the later ones are objectively more severe. That first one came with the full psychological weight of the unknown: What is this? Am I dying? Will it ever stop? Is this going to happen again? Those questions have consequences, and that is because fear and psychological distress trigger measurable physical stress responses that amplify pain through the release of inflammatory chemicals. Panic, quite literally, makes pain worse.

Over time, I learned what to expect. I learned the shape and scope of my pain, what triggers it, what helps (and what to do when nothing helps). And so I stopped adding the gasoline of panic to an already burning house. I developed what researchers might call “pain self-efficacy.”

And along the way, I stumbled onto something I later learned has a name in different contexts entirely: the practice of observing a sensation without attaching a narrative to it. Noticing the pain without the story the brain tells about the pain.

I’ve since read that this is a technique CIA operatives are trained to use to endure torture. Just observe it. Don’t make it mean anything.

What I didn’t know at the time was that by learning to do this (by having to learn to do this in order to survive daily life), I was quietly becoming less credible to the medical system that was supposed to help me.

That’s because “the pain scale” is not built for people like me.

The 0–10 numeric pain rating scale used in virtually every American emergency room and doctor’s office was developed based on acute pain in otherwise healthy patients (in other words, people who do not live with chronic pain and are unaccustomed to it).

The scale implicitly measures not just sensation, but the full psychological performance of pain: the wincing, the crying, the inability to speak, the visible distress that comes with new, unexpected, frightening agony.

An able-bodied person who steps on a nail for the first time in their life might legitimately rate that experience a 9 or 10. They have no coping framework for it. They haven’t decoupled the sensation from the mental uncertainty or the emotional terror. Their pain comes packaged with all the emotional wrapping that makes it look like what medicine expects pain to look like.

A person with severe chronic neuropathy in their feet, however (someone who has felt similar pain to stepping on a nail, all day, every day for years), does not have the luxury of that response. Their nervous system has adapted, because it had to. Their psychology has, of necessity, adapted. They have instinctively learned the CIA technique not because they read about it, but because the body is self-protective.

And so when they sit in a doctor’s office and rate their daily neuropathy a 7, and they are not crying, not rocking, and able to hold a conversation, the doctor sees someone who doesn’t look like they’re in that much pain and interprets their 7 as an over-exaggeration.

What the doctor is actually seeing is someone who has mastered the hardest psychological skill in pain management. And he is penalizing them for it, not even necessarily out of conscious malice but out of institutional bias.

A 2022 study published in The Journal of Pain found that the belief that people exaggerate or over-report their pain is pervasive (and that this belief directly influences how clinicians treat patients) even though the same study found no evidence that people actually over-report their pain. The cultural assumption is not evidence-based. It is a bias. And it is a bias that has measurable consequences for patient care.

Medical files follow you.

Here is what happens when you are a chronically ill person who shows up to enough doctors, enough ERs, asking enough times for help with unrelenting pain: you get flagged.

Notes accumulate in your medical record. Words like “drug-seeking.” “Frequent flier.” “Somatic complaints.” Diagnoses of anxiety or depression are offered instead of physical investigation. And once those words are in your file, they stay with you. Future providers read them before they’ve ever laid eyes on you. The chart precedes you like a reputation, and it poisons the room before you’ve even said a word.

Research published in qualitative studies has documented this cycle extensively. Patients describe losing doctors over a single misunderstood ER visit. They describe being told to leave emergency rooms. Once the word “drug-seeking” appears in a chart, it almost never comes back off. In one documented case, a patient who had been on opioid therapy for twelve years (monitored, compliant, drug-tested) lost their doctor because of a complaint filed by an ER physician who couldn’t find a visible cause for their pain on a weekend shift.

The cruelest part of this is the trap it creates. Chronic pain patients learn very quickly that if we show our pain (i.e., if we cry, if we groan, if we look as bad as we feel), we are accused of performing for sympathy or drugs. And if we’ve learned to manage our pain with psychological tools and don’t look visibly distressed, we are accused of not “really” being in pain.

There is no presentation of ourselves that doesn’t incriminate us.

Read that again.

There is no presentation of ourselves that doesn’t incriminate us.

The system has made our suffering a crime regardless of how we report it.

And so we learn to underplay. We minimize. We choose careful words. We sit up straight and speak clearly and do not let the nausea show, because we have learned that looking too sick makes us suspects, and looking functional makes us liars, and there is no version of ourselves the exam room will simply believe.

What this means in practical terms.

People with chronic pain are at least twice as likely to die by suicide as those without it.

Let that sit for a moment.

Twice as likely to reach the point where death seems more manageable than continuing.

A 2018 analysis of more than 123,000 suicide deaths found that nearly 9% involved people who cited chronic pain directly in their suicide notes (and researchers noted this is almost certainly an undercount, since most suicides don’t leave notes at all).

More than two-thirds of those suicide notes mentioned prolonged suffering specifically. Not just pain, but the experience of suffering without relief, without being believed, without recourse.

This is what the math looks like when a medical system decides, systematically, that it doesn’t believe its most vulnerable patients.

Physicians take an oath to do no harm. But harm does not require intent. Harm can be structural, institutional, cumulative, and invisible to the person causing it while remaining devastatingly damaging to the person receiving it.

When a doctor lets bias cloud their assessment, they are not merely failing to help. They are actively participating in a system that leaves people with nowhere left to turn. When a “drug-seeking” note forecloses a future doctor’s genuine inquiry into a patient’s pain, that note is doing harm. When a pain scale designed for acute injuries in healthy bodies is applied without question to someone who has had to make peace with their body’s daily assault just to remain functional, the scale itself is doing harm.

I’ve sometimes wished (not with malice, but with a desperate desire to be understood) that I could transplant one week of my pain into the body of someone who has never felt anything like it. I think they would leave that week changed. I think they would never again say you don’t look like you’re in that much pain to another human being.

But I can’t do that. So instead, I’m saying that the fact that I have learned to exist inside my pain without coming apart at the seams is not evidence that my pain is manageable. It is evidence of how much I have had to manage, alone, with the tools I taught myself, because the system that was supposed to help me spent too much time deciding whether I was worth believing.

I am. We are.

And the medicine that keeps failing us needs to be held to account for that.

If you are living with chronic pain and are having thoughts of suicide, please reach out to the 988 Suicide & Crisis Lifeline by calling or texting 988.

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This is a more or less verbatim quote from a troll who stumbled out of whatever echo chamber he’d been stewing in his whole life and into the comments section of a multiply disabled, chronically ill content creator. (Me.)

He also said several other inflammatory things (ableist slurs, right-wing talking points recycled so many times they’d lost whatever shape they once had), but the quote above was his most coherent offering, if we’re being generous with the word. It was also, by far, the most dangerous thing he said. The slurs were ugly, but this assertion was insidious.

It represents a belief so widespread that it breeds a complacency that actively harms and kills disabled and chronically ill people. And unlike a slur, it often goes unexamined, mistaken for “common sense.” So despite having limited spoons and no particular desire to reward a troll with my energy, I decided this one couldn’t go unanswered.

Because he’s not an anomaly. Variations of this sentiment show up everywhere (earnest, uninformed, and confidently wrong) in dinner table conversations, comment sections, and the policy positions of people with actual power over disabled people’s lives.

The stakes are too serious to leave it alone.

Able-bodied people tend to assume that once someone is diagnosed with a chronic illness or disability, they automatically qualify for disability benefits. They seem to picture us wheeling or wobbling into the local Social Security office with a doctor’s note, getting immediately approved, and riding a gravy train for the rest of our lives.

The irony is that this belief is almost the exact opposite of the truth.

I’m American, but I had the pleasure of living in New Zealand for about two years in my twenties. I suffered a nasty foot injury while there and had to be taken to an A&E (Accident & Emergency, which is somewhere between an American urgent care and an ER). After staff removed a considerable amount of debris from my ankle and foot and bandaged me up, I hobbled to the front desk with my credit card out, braced for a hefty bill.

The nurses pretended not to see me for a moment. Then one looked up, confused. “Can I help you?”

“I’m here to pay my bill.”

They looked at each other, then smiled. “There’s no bill, sweetie. Have a good day.”

I limped out, bewildered, expecting to be tackled any moment by a staff member before I reached the doors.

New Zealand has universal healthcare. Yes, there were wait times for specialists. But having dealt with the American healthcare system my entire adult life, both before and after those two years abroad, I can tell you the wait times in New Zealand weren’t meaningfully longer than what I’ve experienced here in America.

Research comparing the two countries’ healthcare systems confirms that New Zealand has a substantially stronger safety net than the United States, with publicly funded coverage for preventive care, inpatient and outpatient services, prescription drugs, mental healthcare, home support services, and disability support, with roughly 80% of health expenditure coming from public funds. PubMed Central

I also personally knew disabled and chronically ill people there who accessed government support (AKA, “the dole”) with significantly less bureaucratic warfare than what Americans face. And yet, the comparative ease of benefits approval did not discourage the rest of the country from working.

The country was not in shambles. It was cleaner, better organized, and not populated by people standing in bread lines, despite what the American right tends to claim about any country with a functioning public healthcare system.

By contrast, as a disabled and chronically ill American, I have lived below the poverty line my entire adult life because I cannot sustain employment due to my chronic illnesses and disabilities. And because of expensive, dismissive, and woefully inadequate care, it took me over three decades to receive proper diagnoses or care for conditions I’ve had since birth.

Here is what “taking care” of disabled people actually looks like in America:

Because I didn’t accumulate enough work credits to qualify for SSDI (Social Security Disability Insurance), I had to apply for SSI (Supplemental Security Income). Both programs have qualification criteria so narrow that the majority of applicants are denied.

At the initial application stage, 62% of all disability applications were denied in 2024, meaning roughly six out of every ten people who apply are turned away on the first attempt, regardless of the legitimacy of their disability. BowmanDisability Many genuinely disabled people have to appeal, often requiring attorneys, in a process that can drag on for years.

People die while waiting.

And if you’re among the minority who eventually gets approved for SSI? You cannot have more than $2,000 in assets, a limit that has not been updated since 1989. House You can have one vehicle, provided it’s used for transportation. And the marriage rules are punitive in ways that would shock most people: if two SSI recipients marry, their combined asset limit drops to $3,000, which is actually 25% less than the $4,000 the two of them would be allowed to hold as unmarried individuals. Center on Budget and Policy Priorities In other words, the federal government financially penalizes disabled people for getting married. Your spouse’s income is also counted against your benefit, whether or not they actually earn enough to support you.

The maximum federal SSI benefit in 2025 is $967 per month for an individual. Social Security Administration There are individual people who can’t cover all their bills with $3,000 a month, and we’re supposed to call $967 (less than the cost of a one-bedroom apartment in most American cities) “taking care” of disabled people?

To be clear about what that money is expected to cover : food, rent, utilities, transportation, clothing, hygiene, and all out-of-pocket medical costs not covered by Medicaid. Applicants don’t get more if they have children, and they often have their food benefits reduced if they’re receiving SSI. The math does not work. And it has never worked.

The consequences are predictable and very well-documented.

People with disabilities are more than twice as likely to live in poverty as those without disabilities. Housingsolutionstulsa

People with disabilities experience homelessness at a rate two and a half times higher than the general American population, and roughly half of all homeless individuals live with an intellectual or physical disability. Carleton College

And as cities and states increasingly criminalize homelessness, arresting people for sleeping in public, and demolishing encampments, disabled and chronically ill people are funneled directly into the carceral system. America’s “taking care” of its disabled citizens has, for many of them, meant incarceration or death.

But sure. We “take care” of our disabled and chronically ill people in this country.

We take such good care of them, in fact, that even bipartisan legislation acknowledges that the current SSI rules “trap millions in poverty” Congressman Brian Fitzpatrick and that the asset limits “have prevented older Americans and those with disabilities from being able to save even a small amount for an emergency.” That’s not a fringe progressive take, even. That’s the finding of a bill with Republican co-sponsors.

The claim that America is uniquely humane in its treatment of disabled people isn’t just wrong. It’s an inversion of reality that serves one purpose, which is to make people feel comfortable doing nothing.

What's particularly telling about the right-wing position on disability is how thoroughly it contradicts itself (and how unbothered its proponents are by that contradiction).

We are living in “luxury” on our $967-a-month gravy train and yet it's our own fault we're poor or homeless.

The homeless (a population made up overwhelmingly of disabled, elderly, and chronically ill people, many of these people the very same vets the right trots out in every campaign speech) are portrayed as a blight to be criminalized and cleared away, and yet, the same people doing that characterizing will turn around and insist that America takes excellent care of its most vulnerable.

The logic collapses the moment you apply any pressure to it at all, but it was never meant to survive scrutiny.

It was meant to justify inaction.

It was meant to make cruelty feel like “common sense”.

Call any proposed improvement to the lives of disabled and chronically ill Americans "communism," conjure enough boogeyman stories about bread lines in countries where people get universal healthcare, and you never have to sit with the reality of what the current system does to actual people.

You never have to ask yourself what it costs a chronically ill and disabled human being to spend years fighting bureaucratic appeals just to be told their suffering doesn't qualify over some carefully constructed technicality or other. Or a chronically ill and disabled human being who spends years fighting bureaucratic appeals just to be awarded a monthly stipend that traps them in extreme poverty forever.

You never have to reckon with the fact that people are dying, not in gulags, not in some dystopian foreign regime, but right here, in the richest country in the world, because the gap between the mythology of American benevolence and the lived reality of American policy is one that a lot of people cannot survive.

The echo chamber is comfortable because it is sealed against that reality. And the people most harmed by the policies it defends are the least likely to have the time, energy, or platform to puncture it, which is exactly why it persists.

But I had just enough energy today to sit down and type this out, because this ignorance isn't just annoying. It isn't just offensive. It is deadly (measurably, undeniably, policy-consequentially deadly), and I will not have it espoused on my page unchallenged.

If you've found your way here and you hold views like the ones espoused in the troll’s comment at the top of this post, consider this your education.

If you've found your way here and you live these realities, consider this your ammunition.

And if you're somewhere in between (someone who never really thought about it, who maybe repeated one of these talking points at a dinner table somewhere without realizing what it costs the people it lands on) consider this an invitation to think harder.

The people this system is failing don't have the luxury of not thinking about it.

The least the rest of you can do is try.

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Each month, I set aside space to answer questions from paid subscribers. This space exists because so much of what we deal with as chronically ill, disabled, and autistic people is genuinely difficult to find good answers to, and I’d rather we figure it out together than everyone struggle throug…

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Introduction

This is a living thesis written in support of all articles published on this Substack. I will update it regularly as my thinking develops and new information emerges. Last updated April 15, 2025.

If you have ever been told that your symptoms are not as bad as you think, that you just need to push through, that everyone gets tired, or that you seem “fine” to them, then you have experienced illness invalidation. Illness invalidation is the experience of having the people around you minimize, dismiss, deny, or actively argue against the reality of your condition. It is one of the most disorienting and damaging things a chronically ill, disabled, or autistic person can experience, and it happens with striking consistency across families, medical settings, workplaces, and institutions.

This essay is for the people who have lived that experience. I hope it gives you a name and a framework for something you may have struggled to articulate for much of your life. But it is also for the people who love someone who is disabled or chronically ill and have found themselves (perhaps without fully realizing it) doing this. Understanding why illness invalidation happens, at every level, from the most personal to the most structural, is the first step toward doing better, for all of us.

I write this from my perspective as a multiply disabled, chronically ill, and autistic woman. I have been disbelieved by family members, doctors, employers, and the systems ostensibly designed to help people like me. I disclose this not to center myself, but to show that what follows is not theoretical. I experience it every day, and for years have been trying to discern its origins.

What I have discovered is that illness invalidation is not random. It is not simply the product of individual ignorance or cruelty, and it is also not something that can be fixed by raising awareness or presenting more facts. Instead, it is a structural phenomenon, generated (and sustained) by the same hierarchical systems that organize most of modern human society. To understand it fully, we have to be willing to look honestly at those systems, and at how they reach all the way down into our most intimate relationships.

Part One: The Most Charitable Explanation (and Why It Is Still Harmful)

I want to begin with the most compassionate interpretation of illness invalidation, because I think it is real and it deserves acknowledgment.

Sometimes, the people who love us do not want to believe we are suffering because accepting that reality is too painful for them to bear. This is particularly true of family members who carry their own hopes and fears about what our lives might be, and who have not been given the emotional tools to sit with suffering that cannot be fixed.

I have experienced this. Some members of my own family of origin genuinely cannot accept the permanence of my conditions. Their lives have been defined by physical capability, by ambition and achievement, by the idea that the right attitude and sufficient effort will carry a person through anything. They do not invalidate my illness because they are malicious. They do it, I believe, because accepting it means accepting a version where someone they love will suffer indefinitely, without a cure they can offer or a solution they can provide.

Who would want to believe something like that?

This form of invalidation is grief in disguise. It is the denial stage, sometimes lasting years or even a lifetime, because the person has never been given permission or tools to move through it.

But two things can be true. A person can have good intent and still do harm. This compassionate motivation does not neutralize that harm. A person who denies your reality to protect themselves from their own emotional discomfort is still denying your reality. The chronically ill person who needs their family’s acknowledgment of their experience in order to receive appropriate support, understanding, and care still does not receive that support when their family member is stuck in denial.

And underneath even this most compassionate form of invalidation, if we look very carefully, we find the assumption that disability is inherently and categorically bad. That assumption did not come out of thin air.

Part Two: Where the Assumption Comes From: Hierarchy, Capitalism, and the Narrow Definition of Worth

Human beings did not always respond to disability with grief and denial. Anthropological and historical evidence suggests that many pre-agricultural societies (like hunter-gatherer communities, as well as many indigenous cultures globally) incorporated disabled and neurodivergent people not as burdens but as valued members of the community. They were often venerated as healers, seers, or holders of unusual wisdom. The bones of people with serious disabilities, both congenital and acquired, who could not have survived without community care, have been found at ancient burial sites, demonstrating evidence that they were supported and mourned like anyone else.

But something changed with the advent of settled agriculture and, later, the hierarchical social order that made it possible. When survival became tied to consistent, reliable labor output (e.g., tilling fields, manufacturing goods, producing surplus, etc.), the bodies and minds that could not reliably perform that labor became defined by their deficits rather than their contributions. This is not a natural or inevitable way to assess human worth. It is a historically specific one, tied to a historically specific mode of organizing society.

That social order (hierarchical, extractive, and ultimately capitalist, at least in its modern form) has a kind of filtering effect on human communities. Over time and across many generations, it selects for (and rewards) a specific cluster of traits, such as the willingness to prioritize productivity over care, to dominate rather than collaborate, and to accumulate rather than distribute. The people who rise to the top of these hierarchies (and who therefore gain outsized influence over culture, law, medicine, and education) tend to be people in whom these traits are pronounced. The result is a society in which the dominant values (the values encoded in our institutions, our media, our educational systems, and our medical frameworks) reflect the priorities of the people who built those institutions and encoded those values.

One of those values, often unspoken but deeply pervasive, is that a person’s worth is determined by their productive output. To be unable to produce consistently, reliably, and in the ways the system requires is, in a system like this, to be immoral. To need accommodation is to be a burden. To be disabled is, within this value system, to have failed at the most fundamental requirement of personhood.

This is where ableism comes from. It does not come from individual cruelty (though that cruelty most definitely also exists). It also doesn’t come from ignorance alone (though education certainly still matters). Instead, ableism is built right into the foundation of hierarchical, capitalist societies because those societies are organized around the extraction of labor, and disability threatens that extraction.

This has direct implications for something like autism. Organizations that frame autism as a tragedy to be cured, or therapeutic approaches that begin from the assumption that autistic children must be reshaped into neurotypical approximations, are not operating in a vacuum. Instead, they are operating within (and reproducing) a system that defines human worth in terms of neurotypical-coded productivity. The question “what does this person contribute?” gets answered very narrowly in terms of their capacity for conventional employment, conventional social performance, and conventional communication, and the vast range of genuine contributions that autistic people make, from pattern recognition to unconventional problem-solving to forms of deep empathy and perceptiveness that neurotypical frameworks often miss entirely, are rendered invisible.

Disability, in the fullest sense, is often biodiversity. It is a natural variation in the ways human minds and bodies exist and function. Some of that variation involves real suffering, don’t get me wrong, and that suffering indeed deserves acknowledgment and support. But much of what gets labeled “disorder” or “dysfunction” is more accurately described as a mismatch between a person and a system that was designed for people who fit into a narrow definition that they, themselves, exist outside of. The tree that grows sideways is not always a failed tree, in other words. It is just one example of a way that trees can grow in nature.

Part Three: The Patriarchal Layer and Why Emotional Avoidance Is Gendered and Socialized

Hierarchical societies are not merely economic structures. They are also patriarchal ones that are organized around the concentration of power in a specific kind of masculine archetype that prizes stoicism, dominance, self-sufficiency, and the suppression of vulnerability.

The implications of this for illness invalidation cannot be overstated. An entire gender has been systematically socialized to regard emotional acknowledgment of pain or struggle as weakness, to “soldier through” suffering as a matter of moral virtue, and to interpret requests for help as failures of character. But these are not natural orientations. They are taught through family upbringing, through culture, through media, and through institutional reward structures that advance the people who embody these traits and sideline those who do not.

The result is a society-wide deficit in what we might call the “emotional infrastructure” required to sit with another person’s suffering. If you were raised to believe that acknowledging your own pain is shameful, you will not have the resources to acknowledge someone else’s pain without it threatening your own carefully constructed defenses. Illness invalidation is, in many cases, a defense mechanism that is not necessarily intended to be deployed against the disabled person but instead against the invalidator’s own terror of vulnerability, dependency, and loss of control.

This is why presenting facts and data to an invalidating family member so rarely works. You are not dealing with a knowledge deficit. What you’re actually dealing with is a defended position. A lack of information is not the true obstacle here. The emotional threat is.

And because patriarchal values have been internalized across genders (women are as capable as men of upholding these norms, having been shaped by the same cultural environment) this is not simply a story about men invalidating women (though, again, that dynamic absolutely exists and is an important conversation in and of itself). It is a story about an emotionally impoverished culture that has taught most of its members to be deeply, perhaps desperately, uncomfortable with the reality of human fragility.

Part Four: Jealousy, Scarcity, and the Myth of the “Disability Gravy Train”

There is another source of illness invalidation that I rarely see being discussed with the directness it deserves, and that is something close to jealousy. More precisely, the particular resentment that arises when exploited people are pointed toward other marginalized people as the source of their exploitation.

Able-bodied, neurotypical people, statistically speaking, represent the majority of human societies, and so it follows that they also represent the largest group of people whose labor is routinely extracted, undercompensated, and exhausted by the same hierarchical systems that discard disabled people. They are told, implicitly and explicitly, that “life is hard”, that you have to earn your way, that no one gives you anything. And then they encounter the narrative (entirely false, but persistent) that disabled people receive generous benefits, live without having to work, and are coddled by a system that demands so much from everyone else.

This narrative is, of course, a lie, as anyone who has navigated the disability benefits system can attest. The process of applying for disability support in the United States, for instance, is deliberately and exhaustingly difficult. It is designed, whether intentionally or through structural inertia, to deny as many applicants as possible through sheer attrition. The ones who are approved are granted a monthly stipend that, in most of the country, keeps them well below the federal poverty line. The benefits “gravy train” does not exist. But the myth of it does, and it serves the same function that divisive myths have always served within hierarchical systems. It redirects the justified anger of exploited people away from the structures that exploit them and toward those who are, in fact, even more vulnerable.

People who believe this myth do not see a disabled person as someone navigating a genuinely hostile system. Instead, they see someone who appears to be getting something they are not getting, in a world where they already feel they are not getting what they deserve. That perception, however inaccurate, produces a motivation to disbelieve and to insist that the disabled person must be exaggerating, must be lazy, or must be capable of more than they claim. The invalidation is, in part, an expression of their own unaddressed exploitation.

Part Five: The In-Group Threat and the FOMO of the Diagnosis “Trend”

As medical understanding has advanced and diagnostic criteria have become more refined, more people are being correctly identified as autistic, or as living with conditions like POTS, EDS, ME/CFS, MCAS, fibromyalgia, and others that were historically dismissed or misunderstood. This is, on balance, a good thing. People are finally getting explanations for experiences that shaped their entire lives without ever being named.

But for many neurotypical and able-bodied people, this increase in visible diagnosis reads not as medical progress but as something deeply unsettling. The response often takes one of two contradictory forms: either “everyone has a diagnosis these days, it doesn’t mean anything” or “you can’t be sick/disabled, you don’t seem sick/disabled to me.” These positions are logically incompatible (either diagnoses of chronic illness and disability are everywhere and therefore meaningless, or they are truly rare and therefore the claimant must be wrong) but they share a common function. They each deny the validity of the diagnosis.

I believe this contradiction is evidence of something operating below the level of conscious reasoning. On a deep, perhaps even primal level, many people experience the proliferation of disability acknowledgment and neurodivergent identity as a threat to their own perceived “in-group” membership. If the category of “normal” (i.e., the “in-group”) expands or blurs, the security that comes from belonging to it is endangered. If the person you assumed was “like you” turns out to be operating under entirely different neurological or physiological conditions, the shared reality you thought you had becomes less certain, and so does your own position in the world.

There is also, alongside this, the possibility of genetic proximity, particularly in family systems where a diagnosis raises the implicit question: could this happen to me? Could this happen to my child? That question, surfacing in a society that has taught people to fear and stigmatize exactly this kind of difference, can produce intense anxiety. Denial of the diagnosis is one way to close that question before it can become too threatening.

Part Six: Illness Invalidation as a Form of Grief (and Why That Matters)

Threading through all of these mechanisms is a common underlying experience of grief.

Whether the invalidator is a family member who doesn’t want to accept a loved one’s suffering, an able-bodied person threatened by the specter of disability, or a coworker whose defenses against their own vulnerability are activated by someone else’s limitations, what is happening beneath the surface is a kind of grieving, whether that’s of an imagined future, of a comfortable reality, of their own sense of safety and certainty.

The problem is that this grief is being acted out on the disabled person rather than processed internally. And when it is enacted in family systems, particularly toward children in their formative years, the consequences are profound and lasting.

A child who is told, repeatedly and from sources of primary attachment, that their symptoms are not real, that they are exaggerating or lying, that they need to try harder or push through, that child learns something catastrophic, and that’s that their internal experience is not trustworthy, that their body’s signals cannot be believed, that asking for help is an act that will be met with skepticism or punishment. Their nervous system stays in permanent activation and confusion. The neurological and psychological damage this causes is not metaphorical. The research on childhood invalidation, particularly in the context of chronic illness and developmental difference, shows clear connections to anxiety, depression, post-traumatic responses, and (in a very cruel irony) an increased difficulty in accurately identifying and communicating one’s own symptoms, which in turn makes getting appropriate medical care even harder.

Medical gaslighting, which many survivors of familial illness invalidation go on to experience, lands on ground that has already been prepared like an arrow piercing an open wound. If you have spent decades being told your pain is not real by the people who were supposed to love and protect and believe you, you are not surprised when a doctor implies the same. You may even believe them.

Part Seven: Why Facts Alone Won’t Fix This

One thing I have learned, both from my own experience and from observing the disability advocacy space more broadly, is that presenting evidence to an invalidating person rarely produces the change we hope for. Sometimes people double down. Sometimes they even become hostile. Sometimes they find new ways to dismiss, whether that’s a new study to cite, a new angle of skepticism, or a new reason why your specific case doesn’t count.

This is not a coincidence, and it is not simply stubbornness. It is evidence that illness invalidation is not, at its core, a knowledge problem. It is a threat-response problem.

People invalidate disability not because they lack information but because they need to invalidate it, because accepting the reality of disability activates one or several of the fears and defenses described above, and the discomfort of those activations feels more urgent than the discomfort of being factually wrong.

This does not mean education is useless or not worth engaging in. It simply means that education must be paired with an understanding of what makes disability threatening to people who have been shaped by the systems described in this essay, as well as a willingness to address those underlying fears rather than simply overloading them with data.

Disability advocacy that ignores the structural sources of ableism, or that treats illness invalidation purely as an individual failure of empathy rather than a socially produced response, will keep running into the same wall it always has. It is important to realize that we are not simply up against ignorance. We are up against a set of interlocking systems that produce the need to disbelieve, and those systems will not be dismantled by information campaigns alone.

Conclusion: Aiming Towards a Different World

None of what I have described is inevitable (though it can certainly feel that way). The belief that it is (that hierarchy is simply human nature, that ableism is an unavoidable feature of social organization), is itself a product of the systems in question, which, like all hierarchical systems, work hard to present themselves as the only possible reality.

There is substantial evidence that human beings are capable of organizing their communities very differently. The same species that produces the stigma and cruelty I have described also produces extraordinary networks of mutual aid, radical inclusion, deep care, and the kind of lateral, egalitarian communities where people contribute what they can and receive what they need. These communities do exist. Many of us, especially those of us who have been excluded from the mainstream, build them for ourselves out of necessity, creativity, and the particular clarity that comes from living on the sidelines of society.

What I hope for, ultimately, is not just better individual behavior, though definitely that matters too. What I hope for is a broader reckoning with the systems that teach people to fear and deny disability in the first place. I hope for a world in which the worth of a person is not determined by their productive output. I hope for a world in which the full spectrum of human variation is met with curiosity and support rather than grief and denial. I hope for a world in which the child who cannot keep pace with the systems around her is helped to find her own pace, her own contribution, her own way of being fully and genuinely herself.

That world is not yet here. But understanding why we are where we are is, I believe, the necessary first step toward building it.

This essay serves as the theoretical foundation for all work published on this Substack. Individual articles explore specific aspects of these interconnected themes in greater depth. If something here resonates with your experience, you are not alone, and you never were.

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I’m okay with my suffering most days. As a multiply disabled and chronically ill person, I’ve accepted it, at least. But many people hear that and mistake my acceptance for apathy, for resignation, for defeat.

For me, acceptance is none of those things. It is surrender.

It is peace.

That my peace seems to be interpreted as defeat by most people might have something to do with the fact that it is practically a tacit gospel in this country that you will only ever find true peace and fulfillment by forcefully bending life’s circumstances to your will. Sometimes the more faithful amongst us pretend peace and fulfillment are found by seeking God’s will, even as they fervently pray for their circumstances to be altered to their preferred arrangement.

But in my four decades on this Earth in a body that refuses to let me bear that teaching out in practice, I’ve observed something quite different.

There is no one more stressed, more dissatisfied, more frantic, or more out of alignment with reality than the person who believes that success, health, or empowerment come from their action (or inaction) alone.

I’ve seen this time and time again when people learn about the (many) health conditions I live with. Often, they become almost manic. They rush in with their unsolicited advice and recommendations, as if I were standing idly by, allowing a five-alarm fire to consume the house that is my body, until they showed up with their buckets. Many, armed with a confidence they don’t yet realize is unfounded, seem to treat my long list of diagnoses as a personal challenge, to be the one to uncover the remedy that has eluded clinicians and researchers for decades, even centuries.

More often than not, they assume that what has helped them will help everyone.

And they won’t take no for an answer.

And if I try to explain that their suggestions, while well-intentioned, won’t cure my lifelong, genetic, incurable conditions? I’m negative. I’m ungrateful. I must want to be sick. That, or I’ve “gone into agreement” with “the Matrix.” I’m letting “darkness” win. I’m “low vibration.”

But which one of us is truly “low vibration”?

The person who has moved, again and again, through the full arc of grief from denial, to anger, to bargaining, to depression, and has come, again and again, to acceptance?

Or the person so uncomfortable with suffering (even secondhand suffering) that they rush through denial and anger, set up camp in bargaining, and call it “positivity”?

Which one of us is actually in a state of disempowerment? Of worry? Of frenzy?

And that’s saying nothing of the people who haven’t even moved beyond the denial phase. I’ve run into more than my fair share of those, too. Those who are so uncomfortable with the idea of suffering that they refuse to believe I even have the conditions I have been diagnosed with in the first place.

I’m not saying being multiply disabled is something I would ever choose. I’m saying I don’t have the choice that so many people desperately want to believe I have.

This flies in the face of a certain strain of modern “spirituality,” the kind that tells you to be “delulu” to manifest whatever reality you want, to believe that your will alone can override any and all material conditions.

I don’t subscribe to that ideology. I never have.

Because much of what passes for “high-vibration thinking” is, in practice, mass spiritual bypassing. It’s also emotional bypassing.

Spiritual bypassing’s favorite lies: Pain and suffering are icky! They should be avoided entirely.

Emotional bypassing’s modus operendi: Good vibes only! If I don’t pay attention to the bad feelings, they’ll go away.

But you know who isn’t bypassing anything?

The person who has looked directly at their reality and said: This is what is.

Sometimes, suffering is not an enemy to defeat. Sometimes it is simply a condition of being alive in a particular body.

That recognition is acceptance. And if I’ve learned anything in my 40 years living in a chronically ill body, it is that acceptance is neither passive nor linear. It is an active, ongoing process, one that I still cycle through regularly.

The conversation goes like this:

Someone I haven’t spoken to in a while texts me to ask how I’m doing. They know I’m chronically ill. I answer their compulsory “how are you feeling?” question honestly, admitting that the pain has been bad, or the migraines have been debilitating, but I had a good few days. I explain (again) that my conditions are chronic, lifelong. They do not go away.

In response, I receive the usual long list of suggestions for this or that supplement, this or that protocol. The implication (sometimes subtle, sometimes not) is that the real problem is my complacency. That I’ve stopped fighting the illness.

And you know what? It’s actually true that I’ve stopped fighting.

But that is not why the illness continues.

The illness continues because it is genetic, chronic, and lifelong. And at the time of this writing, there are no known cures anywhere, whether you’re looking in conventional or alternative medicine.

If there were a cure, I would take it in a heartbeat. But there’s not.

And that’s okay.

That’s the thing that most people don’t get. Sometimes trees grow straight and tall. Sometimes they grow twisted and wonky. I grew with a wonky spine and nervous system. That’s nature. That’s life. C’est la vie!

When I answer someone’s questions honestly about how I’m doing, I am not complaining. I am not asking to be fixed. I am simply answering the question I was asked.

But for many people, witnessing suffering (especially suffering they cannot control) creates discomfort so great, they’d do just about anything to escape it. So instead of sitting with that discomfort, they try to eliminate it, whether that looks like denying it exists, getting angry that “everyone has a diagnosis for everything these days”, trying to bargain with reality by saying “you know maybe you just need more sleep, or yoga, or more Vitamin C”. Not necessarily for the other person’s sake, but for their own.

And usually, they don’t even realize it.

But I do.

I can see it a mile off now.

That’s the part I think we not only don’t talk about enough, we don’t seem to talk about it at all. The urge to “fix” is often less about compassion and more about self-protection.

I’m not saying there is never an element of compassion. There usually is. Who wants someone else to suffer, after all? All I’m saying is that it is often outweighed by fear.

It’s easier to believe that someone else’s suffering is optional, or that it can be solved with the right supplement, mindset, or belief, because then you don’t have to confront the harder truth that some suffering is real, uncontrollable, and could, in another life, be yours.

It reminds me of a line from the Hobbit, where Bilbo is complaining to Gandalf about the fact that it’s raining and asks whether the wizard can intervene magically to stop it:

“It is raining, Master Dwarf, and it will continue to rain until the rain is done. If you wish to change the weather of the world, you should find yourself another wizard.”

There isn’t always a wizard to change the weather, and there isn’t always wisdom in doing so.

Modern “spirituality” often suggests that the highest form of power is the ability to reshape reality through intention alone.

And I do believe in the power of will. I’ve seen it in my own life. It is what has allowed me to continue to live in a body and under conditions that many people would find unbearable.

But the idea that you are the sole architect of every aspect of your experience, or that all suffering is a failure of mindset or alignment, is not enlightenment. It’s simply not.

It’s denial.

The real work is quieter (and much harder.)

It’s sitting with discomfort and imperfection. It’s allowing reality to be what it is, without immediately trying to overwrite it.

That doesn’t mean you never try to improve your circumstances. It just means that you don’t run from the hard parts and call that escape “empowerment.”

Don’t misunderstand. I don’t lie around thinking, “It is what it is, so why try?” That would be apathy.

And if I were apathetic, I wouldn’t go to physical therapy. But I do go. If I were apathetic, I wouldn’t attend medical appointments. But I do attend them. If I were apathetic, I wouldn’t follow a diet that helps reduce my symptoms. I do indeed follow such a diet.

It’s just that I use my will where it can actually make a difference.

There’s a reason why things like the Serenity Prayer endure:

“Grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.”

It’s because there is peace in that wisdom.

And yet, many people (who haven’t done the work yet) will interpret that wisdom as defeat, or as apathy.

The truth is, that wisdom is the only true empowerment there is, if you ask me.

And the truth is I don’t think many people are even ready for this conversation because it asks them to confront their own fear of suffering.

Instead, that fear gets rebranded as “positivity,” “alignment,” or “empowerment.”

So that’s what I mean when I say I’m “okay” with my suffering.

I’m not celebrating it. I’m not choosing it.

But I am acknowledging, with clarity and without illusion, that some aspects of my reality are outside my control, and I have made peace with that.

And while it is strange to me that my own peace with the suffering I endure daily is so triggering to so many other people, I at least understand where it is coming from.

So the next time you feel the urge to rescue someone from their suffering, ask yourself two questions:

Did they ask me for advice?

And if the answer to that question is no, ask yourself: who am I really trying to rescue from this discomfort?

The answer may tell you more about yourself than you dared to learn previously.

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At least, that’s what they told me.

As I live with multiple chronic conditions and disabilities, and as I had absolutely missed work because of these, I didn’t immediately question the firing. There was a little voice somewhere in the back of my mind that ever-so-quietly protested, “I didn’t think I missed that many days…” but when my manager called me into the office and said I’d gone over the limit, I was too shocked to argue. I signed the termination paperwork without even really processing it and then went home in a daze.

My boyfriend, who worked with me at this company but in a different department, was so furious when he found out about my firing that he nearly walked off the job on the spot. After a few deep breaths, however, he’d collected himself enough to resist that impulse and to realize something important. Not only did he think I couldn’t possibly have missed that many days, but he was almost certain I’d missed fewer days than a specific coworker of mine (whom we’ll call “Jane”).

In fact, the consensus among most of my coworkers when they learned I’d been fired was that they couldn’t believe that Jane hadn’t been fired, but I had. I had a reputation for getting a lot done (and had the production numbers to prove it) while Jane had a reputation for doing the bare minimum when she even bothered to show up at all.

When my boyfriend got home that day, he asked to see a copy of the termination paperwork I’d signed. We went through it together line by line. And what we found was that I had actually worked several of the days they had listed me as absent.

Between the discrepancies in my reported absences and management apparently overlooking a coworker who almost certainly had more absences than I did, something wasn’t adding up. And whether or not it was actual favoritism, it certainly looked (and functioned) a lot like it.

Prompted by my indignant and insistent boyfriend, I filed a complaint with HR. Over the following weeks, they conducted an internal investigation and concluded that I had indeed been wrongfully terminated. They apologized profusely and offered to reinstate me.

I declined, for several reasons.

But my boyfriend stayed on. He watched as the manager who fired me was reprimanded, and for a time, it seemed that maybe we had made a difference. Over time, however, he saw the same patterns of apparent favoritism resurface.

The Coworker Who Wasn’t Fired

Jane also continued working at that company long after I’d gone. According to my boyfriend, she continued to call out, miss shifts, and do the bare minimum when she did show up, with no apparent consequences.

Jane was also highly social, great at small talk, and particularly friendly with the manager.

Still, I don’t think it was conscious villainy on the part of the manager who wrongfully fired me.

I think this obvious favoritism was something deeper and far more subconscious than that.

The Study Most People Haven’t Heard About

There’s a research study showing that when neurotypical participants watched brief interactions between autistic and neurotypical individuals (without being told who was autistic) they consistently rated the autistic participants as less likable and less trustworthy.

The participants were not consciously prejudiced. They weren’t told who was autistic. They weren’t instructed to evaluate disability. They were simply asked for impressions. And within seconds, the autistic individuals were rated lower.

That’s what makes the study unsettling. The bias operates beneath awareness. It isn’t announced as discrimination. It shows up as a feeling: “I don’t click with them.” “Something feels off.” “I wouldn’t choose to spend time with that person.”

Most readers interpret that study as evidence that neurotypical people dislike autistic people.

And while I think that conclusion is correct, I also think it is incomplete.

I think it points at something deeper, beneath the dislike.

Because when I look back at my own experience, the favoritism, the subtle exclusion, the eventual termination despite strong performance, I can’t ignore the possibility that this same mechanism of instant, subconscious dislike was operating.

I was a high-masking autistic employee. For the most part, I did my job well. I missed fewer days than my coworker. I met expectations. What I did not do well was fill the space between tasks with effortless small talk. I did not “shoot the breeze.” I did not instinctively perform the rituals that signal comfort in neurotypical spaces.

But Jane sure did.

I cannot prove her neurotype, and I don’t need to. What mattered was not diagnosis. What mattered was fluency in the dominant social language. She spoke it easily. I spoke it clumsily and imperfectly.

If thin-slice judgments can shape perceptions of likability and trust within seconds, it is not unreasonable to consider that similar snap impressions shaped my manager’s comfort level. Comfort becomes preference. Preference becomes favoritism. Favoritism becomes narrative: “She’s a better fit.” “She has better people skills.” “She just works well with the team.”

And suddenly the workplace meritocracy begins to look a lot like social-ocracy.

No one has to consciously think, “I dislike autistic people.” All that has to happen is that one employee feels easier to be around than the other.

When social fluency is mistaken for competence, the outcome feels personal, when really, the mechanism is structural.

Two Social Languages, One Dominant Culture

The dislike neurotypical people showed toward autistic people in that thin-slice “likability” study wasn’t random cattiness. It was a primitive response to unfamiliarity. To fear of the unknown.

The neurotypical participants weren’t reacting to incompetence. They were reacting to not knowing where the autistic participants were coming from. That uncertainty created discomfort, and that discomfort became a negative judgment.

Research on what’s known as the double empathy problem helps explain why. Communication breakdowns between autistic and neurotypical people are not the result of a one-sided social deficit on the part of autistic people, like had been previously thought. They are mutual misunderstandings rooted in differences in how each group experiences and interprets the world. Neurotypical people struggle to accurately read autistic communication just as autistic people often struggle to intuitively decode neurotypical cues.

When two groups speak different social languages, ambiguity creeps in. And when the brain encounters ambiguity, especially in social situations, it can default to distrust.

The fear underlying those snap judgments is not a moral failure on either side. It’s confusion. Neurotypical observers don’t always know what autistic communication means, and uncertainty can feel unsafe.

In workplaces where small talk, eye contact, and conversational rhythm are treated as proxies for trustworthiness and competence, and where neurotypical social language is the default, that discomfort has consequences. It can shape hiring decisions, performance reviews, promotions, and terminations, and not because of merit, but because the dominant social language feels more familiar.

The Difference Is in the Degree

The differences between autistic and neurotypical communication aren’t alien. They’re more like opposite ends of the same spectrum.

Autistic communication is often meaning-forward. We signal trust by sharing substance first.

Neurotypical communication tends to be ritual-forward. “Hi, how are you?” “I’m fine, how are you?” The exchange itself signals safety. The script communicates, “I understand the rules. You can trust me.”

It’s like entering a pool. Autistic people often dive into the deep end. Neurotypical people prefer to wade in gradually through the shallow end.

Neither approach is wrong. But they begin from different assumptions about what builds connection.

Small talk can feel performative and inauthentic to autistic people. Immediate depth can feel boundaryless or unsettling to neurotypical people. Each group can experience the other as unsafe.

And when we add autistic masking into this picture, it begins to get even more complicated.

In a culture dominated by neurotypical norms, autistic people are expected to conform or risk exclusion. Some can’t conform. Some refuse. Many can, but at significant cost.

Masking means consciously performing neurotypical social behavior, things like managing eye contact, modulating tone, adjusting facial expressions, pacing conversation, and suppressing stims. It is cognitively expensive. Imagine your social acceptance depended on suppressing blinking or breathing. How much of your attention would be diverted to managing something that should be automatic?

Masking is labor-intensive. And what’s more, it is never perfect.

When masking is close but not seamless, it can produce what feels like a social uncanny valley effect. Something seems almost typical, but not quite. That subtle mismatch can trigger discomfort or distrust that the neurotypical observer cannot consciously explain.

They don’t think, “This person communicates differently.” Instead they think (usually subconsciously), “Something feels off.”

That subconscious discomfort can shape perceptions of competence and reliability. It can influence who gets mentored, who gets promoted, who gets the benefit of the doubt, and, in cases like mine, who gets let go.

None of this requires malice. It requires only a dominant culture that mistakes its own social language for the neutral standard of humanity.

What is misread as “off” is often simply a different way of being human.

What This Has to Do With the World of Work

To even get hired, autistic people have to pass a test built entirely around neurotypical norms, and more specifically, neurotypical likability.

In a neurotypical-dominated society, “good communication skills” is another way of saying “neurotypical communication skills.”

In this social language, you’re considered to have “good communication skills” if you make “appropriate” eye contact, engage in small talk, read between the lines/understand unspoken subtext, match tone and expressiveness, and answer the question they meant, not the one they asked.

If you speak in a monotone, interpret questions or statements literally, or skip ritual pleasantries, you are marked down, even if you’re more competent.

As a culture, as a society, we say we hire based on merit.

We don’t.

We hire based on comfort, and we don’t even realize we’re doing it.

What This Costs the Company

In my case, the company that fired me lost a higher-performing employee and retained a lower-performing one.

The retained employee missed more shifts than I did, before and after my employment with the company. That meant coverage gaps for them, more operational strain, lost efficiency, lost productivity, and, most important to most companies, lost profits.

But she was socially fluent in the dominant neurotypical social language, so she stayed. I, a higher performing employee (who also happened to be autistic), was forced out, because my close but imperfect approximation of neurotypical social customs created in others an uncomfortable “uncanny valley” feeling of dislike and revulsion.

If you multiply this unconscious social bias across all companies, industries, and governments, not only nationally, but internationally, you begin to see that this harms more than little out-of-work autistic Substack authors and has consequences that are much farther reaching.

When likeability outweighs competence, you don’t get a meritocracy. You get, for lack of a better word, a social-ocracy.

And social-ocracies reward people who can navigate hierarchy and ritual, who are not necessarily also the people who are best at the job.

That harms everyone.

The Structural Problem That Remains Unseen, and so Unnamed

Yes, there are DEI initiatives. Yes, there is vocational rehabilitation. I’ve gone through vocational rehabilitation it in two separate states. And I can tell you firsthand that the supports and accommodations they offer barely scratch the surface.

Noise-canceling headphones are not systemic change. Written instructions are not systemic change. Resume and interview prep are not systemic change. And this is virtually all that’s on the table.

The structure itself is inaccessible because it assumes that neurotypical social norms are neutral, default, and universal.

And the fact is, they just aren’t.

They are only one cultural system among many.

But because they are dominant, they are invisible to the people who operate within them.

It’s like how no one thinks they have an accent, but think that people from other countries and regions have accents. When you’re a member of the majority, it just registers to you as “the way things are.”

The Conversion Conversation

If all of this is true, if neurotypical people are the majority, shouldn’t autistic people simply assimilate? Wouldn’t it be easier to just learn the dominant social language and blend in?

That argument has been made for decades. Organizations like Autism Speaks have promoted the idea that autistic people are deficient and must be reshaped to meet neurotypical standards, often through Applied Behavior Analysis (ABA). ABA aims to reduce autistic behaviors and reinforce neurotypical ones. It frames conformity as progress.

History has seen this logic before.

After the near-total genocide of Indigenous peoples in North America, those who survived became a marginalized minority. They, too, were told that assimilation into white American culture would benefit them. Indigenous children were taken to boarding schools, forbidden from speaking their languages, forced to cut their hair, change their names, and abandon their spiritual traditions. The justification was “for their own good.” The underlying message was simpler: “conform so the dominant culture does not have to change.”

The parallel is uncomfortable. When autistic children are discouraged from behaving like autistic children and rewarded for behaving like neurotypical children, the message is similar. Your natural way of being is wrong. Replace it. For our comfort and convenience.

Research has suggested that intensive behavioral interventions like ABA can be associated with long-term trauma symptoms in some autistic individuals. Whether or not one supports ABA, it is difficult to deny that suppressing innate mannerisms and communication styles in order to approximate neurotypical norms is, by definition, masking.

And masking is not neutral. It is the sustained effort to override one’s natural social language in order to survive in a dominant culture.

Assimilation is often framed as practicality. But it always comes with a cost, and that cost is usually paid by the minority, not the majority.

And even if every autistic person were trained to mask flawlessly (as is the ultimate goal of ABA) they would still be autistic people performing a script. The performance would remain imperfect. The “uncanny valley” would remain. Only now, they’d be exhausted and at higher risk for poor mental health outcomes up to and including increased suicidal ideation and behavior.

That is not inclusion. That is not therapy. That is not progress.

Put plainly, it is cultural erasure.

I mention Autism Speaks and ABA not to single out villains, but to expose the logic at the center of their approach, which is mainly that autistic people must erase themselves, mimic neurotypical behavior, and assimilate into a world built without them in mind.

History has shown us, again and again, that forced assimilation does not create belonging. It produces harm while protecting the comfort of the dominant group.

What we need instead are solutions grounded in reality rather than prejudice, and approaches that recognize autistic ways of communicating and existing as legitimate, and that build inclusion by expanding the culture, not compressing the minority.

And as a neurotypical-dominated society, until the majority of people become aware that their specific social language is not the only valid or legitimate one and make room for others, we will keep telling autistic people to adapt. We will keep labeling them deficient. We will keep wondering why burnout and unemployment rates are so high like it’s some unknowable mystery.

The Bigger Cost

When workplaces prioritize social conformity over demonstrated competence, they get weaker teams, weaker organizations, and weaker institutions plagued by more waste, more exclusion, and more dependence on social safety nets.

These types of workplaces create and maintain hiring and professional policies that are not only hostile to autistic employees but also actively disenfranchise them. They narrow the terms of employability, forcing millions of people out of the workforce based on unspoken, tacit social expectations, then the same culture that produced such workplaces turns around and complains that disabled people are a “drain” on society.

That is insanity.

It’s also completely unnecessary when all that is needed is real accommodation.

What Would Real Accommodation Look Like?

Real accommodation starts with education. Neurotypical people need to understand that their way of communicating is just one style and not the only style.

Real accommodation would include interviews designed to measure actual competence, not social likability. It would include management training that focuses on recognizing and working with different communication styles and facilitating understanding between neurotypical and autistic employees. It would include small talk no longer being treated as proof of “cooperation.” And it would most definitely include autism being treated not as a defect to correct, but as a neurodevelopmental variation to understand.

But change can’t start with workplaces alone. For better or for worse, it must start with society at large.

That is because managers and the companies they represent would argue (and currently do, albeit unconsciously, argue) that their customers are predominantly neurotypical, so autistic employees must adapt. But unless customers also understand the need to meet autistic employees where they are, no meaningful change can occur in any organization, industry, or government. Workplaces reflect the needs of the people who created them, and if society itself doesn’t accommodate difference, organizations won’t either.

Is it Possible to Move from Social-ocracy to Meritocracy?

The core issue is, of course, that much of our workforce (and, really, society at large) is structured as a social-ocracy, not a meritocracy.

Hiring, promotion, and professional inclusion are often dictated more by comfort with neurotypical social norms than by actual skill or performance. Neurotypical social language, treated as default and superior, carries hidden biases against autistic communication styles, disadvantaging talented employees and creating inefficiency and exclusion that harm everyone.

But I believe that not only is progress is possible, it is already happening.

Autistic self-advocates, allies, and research are steadily shifting awareness. By naming these biases, educating society that neurotypical communication is just one style among many, and fostering a cultural exchange between neurotypical and autistic people, we can begin to build workplaces (and a society) that value competence, authenticity, and inclusion over conformity.

We will continue to make progress by calling out favoritism in the workplace.

We will continue to make progress by insisting upon our right to work (those of us who can or want to work) even if we don’t chit-chat with Barbara at the watercooler about the latest episode of Dancing With the Stars.

We will continue to make progress by holding organizations accountable when they claim to hire based on merit but punish employees for social performance rather than job performance.

And we must continue to make progress, because a society that disenfranchises millions of competent potential employees is a society that cripples its own potential.

One day, we will have true inclusivity. And when we do, we will have a stronger, more effective society all the way around, for everyone.

And I believe that is something worth working towards.

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She built a career on her hands and her eye, not on a personal “brand.” She didn’t need to market herself online, study algorithms, curate an aesthetic, or juggle five different platforms just to be visible. She didn’t do her own accounting, or manage her own PR, or monetize a dozen side hustles just to survive.

She wasn’t wealthy. But when my biological grandfather walked out shortly after my mother was born, her work was enough to keep a roof over their heads. She was hired for her skill, with no degree, no unpaid internships, and no personality tests.

There was no job posting written only for optics while the position was quietly promised to someone internally. A real job existed, and she could do it. She did do it. And she did it well.

But looking back, I’m fairly certain my grandmother was autistic. In her era, however, that wasn’t a diagnosis available to women like her. She was labeled “shy” and “sensitive,” and the conversation stopped there.

Still, she worked. She survived. She raised a child, my mother.

I don’t think the same would be possible for her today, and not because she lacked ability, but because the ground has shifted beneath our feet.

If she were born into today’s world with the same talent for sewing, skill alone wouldn’t be enough, like it had been for her all those years ago. Now, she’d be expected to sew and sell, design and promote, track analytics, manage finances, network constantly, and perform competence in ways that have very little to do with the work itself.

In today’s job market, she might not be considered employable at all.

I suspect this is true because I’ve lived a version of it, myself. And I’m a lot like she was.

Right out of high school, I landed a job as a dog bather at a large chain pet store. It felt like a dream. I had always loved animals, and now I got to work with them all day, every day. I was, like my grandmother, “shy” and “sensitive” (read: undiagnosed autistic). So it felt like an added perk that the job was mostly in the back, away from customers. And I had one job and one job only: to wash dogs.

Despite rather intense sensory overload (wet clothes clinging to my skin, the constant roar of blow dryers, barking echoing off tile walls, the physical strain of bending over tubs all day), I was good at it. I showed up. I did my job. I kept up, for the most part.

About six months in, the job parameters changed.

Management raised productivity quotas that were already hard for me to meet. Not long after this, they announced they were eliminating dog bather positions altogether. Everyone would be trained as a full groomer and would be responsible for bathing and grooming. Quotas were raised yet again.

Corporate didn’t care if this was feasible for the employees. They only cared about getting more output and paying fewer people for it. Let the ones who could handle it rise to the top, let the ones who couldn’t fall away.

What they wanted was growth, not mere stability. Stakeholders don’t like flat lines. They want exponentially climbing curves no matter the human cost.

And I, quite simply, couldn’t keep up anymore.

I had to quit.

Up until that moment, I had been employable. Competent, even. I did my job and I did it well.

Then Corporate slammed their fists on the table like a toddler at dinner time, demanding, “More! MORE!”

And what I’m getting at is this:

This matters when we talk about unemployment, especially the staggering unemployment and underemployment rates among autistic adults, which multiple studies have consistently placed far higher than those of non-disabled peers.

We often frame this as a problem of individual deficits of social skills, adaptability, resilience. What we don’t talk nearly enough about in this conversation is “corporate consolidation and role-stacking” (i.e., forcing one person to do the job of five people while getting paid the salary of one.)

There are countless jobs that I, an autistic person, would excel at if they were still single jobs. Instead, they’ve been folded into Frankenstein positions that demand constant multitasking, social performance, sensory endurance, and emotional labor on top of technical skill, and I am barred from entry.

Also, autistic people tend toward monotropism: deep, sustained focus on a limited number of areas. Far from being a flaw, this is an incredible strength (when it’s allowed to be). It’s what made my grandmother so singularly spectacular at sewing. It’s a different cognitive style, one that has historically produced craftspeople, specialists, analysts, artists, and innovators.

Research also suggests autistic brains process more information at rest, which means cognitive and sensory overload can arrive faster when demands pile up. Layer on interview processes that reward neurotypical socializing rather than actual job competence, and the barriers become structural, not personal.

This is why “inclusion” can’t stop at noise-canceling headphones or written instructions for autistic employees. Those accommodations do matter, don’t get me wrong, but they don’t even begin to touch the core problem.

And that core problem is unfettered greed.

Companies increasingly expect one person to do the work of three, four, or five, not because it’s sustainable, but because it’s profitable in the short term. Their payroll shrinks while their profit rises. Executives are rewarded for math like that. And burnout? Autistic people being shunted out of the rolls of the employed? That’s acceptable collateral damage so long as “LiNe On GrApH gO uP.”

Neoliberal capitalism, as it’s currently practiced, is terrible at long-term thinking. It extracts until systems fail, whether those are natural systems, labor systems, or human bodies and minds, and then looks for something else to extract profit from. People who can’t be optimized for maximum profit are labeled inefficient, expendable, or worse.

Historically, societies that organize themselves this way do not become kinder over time. Disabled people are among the first to be excluded, institutionalized, or erased when profit is the only value that matters. And unfortunately, this isn’t hyperbole. It’s a well-documented pattern across history.

I’m not saying all of this to be nihilistic. I’m saying it because it needs to be said plainly:

If you are autistic and you can’t find, secure, or keep employment, it is not a personal failure. It’s not a you problem.

You would be employable if given the right circumstances. Those “right circumstances” just aren’t profitable for the powers that be, so you’re denied them.

You were not designed to be a hyper-flexible, endlessly multitasking cog in a machine that measures worth solely in quarterly returns. You were designed for depth, not extraction.

When we refuse to acknowledge this, the blame gets handed to the individual. To you, the autistic person.

You internalize it. You start asking yourself why you even exist if you can’t be “productive.” Ask me how I know. I’ve been there a million times before. And that kind of thinking doesn’t come from nowhere. It’s created.

Frankly, it’s cruel.

And what’s so horrific about the cruelty is that it’s not even created out of malice. It’s created out of a complete lack of empathy and consideration.

Where do you think the saying, “it’s just business,” came from?

That’s how harm is justified. “It’s not personal, it’s just business,” really translates to: “You literally don’t even exist to me unless you are turning a profit for me.”

It’s not like corporate CEOs have meetings where they brainstorm new ways to personally punish autistic people. It’s worse than that.

They don’t think about autistic people at all.

They stopped thinking about autistic people the moment autistic people were not able to rise to the occasion of handling the work of multiple roles at once for the same level of pay.

First, the system narrows the definition of employability until many disabled people no longer fit inside it. Then it tells us that our exclusion is our own fault. “Well, you just weren’t able to rise to the occasion. Not my fault.”

And I’m just saying that we should not accept this story. Let this be the one time the victor doesn’t get to write the history books. Because more often than not, the victor is a cheat, and a liar.

“It’s not personal, it’s just business,” is a lie.

It is personal when your decisions disenfranchise millions of people and condemn them to poverty and uncertainty, when your decisions deny people the right to human dignity.

We don’t need more autistic people breaking themselves to fit broken systems. We need systems that allow everyone to contribute in the ways that they are able.

And until I see companies actually doing this, I do not want to hear a single one of them claim to be inclusive.

Millions of autistic people do not need to be unemployed. This isn’t something that has to happen. It’s something that’s decided upon by a system that puts profit over people, always.

I truly believe that millions of autistic people didn’t used to be unemployed, back when a job was a job and not ten jobs in a trench coat.

We are not unemployed because we are unemployable.

We are unemployed because we are the first to buckle under exploitation.

And we’re something else.

We’re the canaries in the coal mine.

First, it’s us. Then, it’s the neurotypicals, once their own thresholds have been exceeded.

How far are we going to take this? How long are we going to pretend this is normal or okay?

I don’t have the answers for how to stop the runaway train that is neoliberal capitalism.

But I, at the very least, want to let you know, as an autistic person, that it’s not your fault that train left you behind on the tracks to fend for yourself.

Don’t let them gaslight you into thinking it’s your fault.

It’s not.

And it never was.

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I started forming this theory six years ago, when I was diagnosed at the age of 34.

I’m able to speak. I can drive. I can cook for myself. I can mask my autistic traits (for a while, anyway). I can write articles like this. And yet, I was still diagnosed as autistic following a thorough six-hour evaluation performed by a neuropsychologist who had decades of experience evaluating children and adults for autism.

Diagnosis notwithstanding, since that time, I’ve even been told (by people with zero experience evaluating children and adults for autism) that I’m “too intelligent” or “too attractive” to be autistic, as if those things disqualify me (and as if those things don’t say more about the commenter’s inherent ableism than they do about my status as an autistic individual.)

I’ve also been told, “But you don’t look autistic.”

“But you’re so articulate!”

“If you hadn’t told me, I never would have known.”

“You must be very high functioning.”

“You’re nothing like this non-speaking autistic boy I once saw.”

I’ve even been verbally harassed and accused of faking my diagnosis for attention.

After spending most of my life as a high-masking, undiagnosed autistic person, it was surreal to finally have a diagnosis, yet still not be believed. Why were so many people so quick to accept Level 3 as “real” autism, but so resistant to accepting that anyone who looked like me could be autistic?

So, I did what came naturally. I hyper-focused on tracing this pattern to its source.

And after years of reflecting on this, I’ve come to a few preliminary conclusions.

First, I don’t think this resistance is rooted in scientific or good-faith arguments.

Second, it’s not about the diagnostic criteria in the DSM.

And third, it’s not even, really, about autism.

It’s about trends.

Trends as a Survival Strategy

Humans are wired to pay attention to what the majority is doing.

Social psychologists have shown time and again that people will go along with a group (even when the group is clearly wrong) because historically, being accepted by the group meant better chances of survival. Cohesive groups survived better than isolated individuals.

However, I found that not all humans approach trends in the same way.

Autistic people, for instance, don’t always respond to majority influence in the same way neurotypicals do.

Studies show that higher autistic traits are linked to reduced peer conformity. Some of us also show what’s called Extreme or “Pathological” Demand Avoidance (intense resistance to expectations that feel imposed on our autonomy). This isn’t rebellion for the hell of it. It’s a way of processing the world. Examine first, comply later (if at all).

Speaking from experience, that means I, as an autistic person, don’t automatically follow trends. In fact, I’ve always naturally resisted trends, even before I knew I was autistic.

When someone tells me I have to watch a popular show or movie, my first response is resistance, not excitement or curiosity. I will only engage with an activity, entertainment, even friendships or relationships, that I find worthwhile, either because they have meaningful substance or are truly aligned with my personal integrity.

That difference shows up early.

Neurotypical kids tend to join things more readily: sports teams, cliques, trends.

Neurodivergent kids tend to resist these things, and tend to get bullied at higher rates as a result, even when no one knows they’re neurodivergent, because they don’t mirror trends or perform belonging in the expected, neuronormative way.

I, myself, was bullied long before I was diagnosed. People sensed something was different about me, but they just didn’t have the words to pinpoint the reason for their dislike or distrust.

This very phenomenon has been clearly documented in recent research, which shows that neurotypical observers quickly form less favorable first impressions of autistic people from just brief “thin slices” of behavior.

Add something like the uncanny valley effect (someone seems almost like you, but not quite, causing feelings of distrust and revulsion) and discomfort spikes. Level 1 and Level 2 autistic people often live in that overlap: too different to feel fully “in,” too similar to be easily categorized as “other.”

So when something looks like it’s growing (say, autism diagnoses) it naturally registers as a pattern. And once humans spot a pattern, we tend to call it a trend, whether (in this case) it reflects new cases or people who were long missed finally being recognized.

For instance, I didn’t “become” autistic in 2019. I was born autistic in 1985. Despite living in the world for 34 years as an autistic person, I only appeared in statistics that year.

What looks like a surge in autism diagnoses isn’t a surge in autistic people. It’s recognition catching up to reality. Diagnostic criteria expanded. Asperger’s was folded into the autism spectrum. Researchers started looking beyond just young boys. Millions of autistic adults who had always existed were finally being identified.

From the outside, that uptick looked like a new trend. Like a new “in group” people were joining.

If you’re neurotypical and tuned to majority behavior, seeing autism diagnoses rising in a group you don’t belong to can trigger discomfort. A pattern is emerging, and you’re not part of it. That can feel threatening, even on a subconscious level.

From my observations, neurotypical people handle this discomfort in one of two ways:

Shrink the category:
“Only Level 3 autism is real autism.”

Or dissolve the category:
“Everyone’s a little autistic.”

Often, the same person will say both at different times. The contradiction makes sense when you view it through the lens of group survival. Both tactics protect the neurotypical person from feeling excluded or “othered.”

It isn’t that neurotypicals can’t understand the autism spectrum. What confuses them is their own, unexamined reaction to a perceived threat, a pattern their brain interprets as survival-relevant. That discomfort gets projected outward as skepticism or denial, targeting Level 1 and 2 diagnoses in particular.

Even though autism is now recognized as far more common, neurotypicals are still the majority. There’s no actual threat to them, but the perception of a growing trend triggers the same ancient survival wiring that once kept humans alive in precarious environments.

This is, of course, just a working theory. But if I’m even partially correct, it highlights a real roadblock for autism advocacy, and that is convincing people that Level 1 and 2 autism is genuine, valid, and deserves recognition.

Neither neurotype is “wrong” here. Neurotypicals seek security in group alignment while autistic people often seek safety and meaning through individuality and autonomy. Both approaches have survival value. Both are valid.

What seems to trigger resistance, I’ve observed, is the overlap.

Level 1 and 2 autistic people can resemble neurotypicals in that they can often speak, they can sometimes work, they can often mask and blend in. Yet they occupy a category neurotypicals perceive as “growing” without their participation. That mismatch creates cognitive dissonance, which is discharged through denial, erasure, or minimization of the diagnosis.

If we want to make advocacy more effective, and I definitely do, we may need to address this primal discomfort directly. Reassuring neurotypical people that they remain the majority, even with increased recognition of autism, could reduce defensiveness. It may make them more open to understanding the spectrum beyond Level 3, and to accepting autistic people like me as legitimate members of the spectrum.

This is my theory, built from personal experience, observation, and research. I’d love to hear from both neurotypical and autistic readers: does this resonate with what you’ve seen?

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Actually, I’ve been wrestling with this thing most of my life, but only recently have I dared to look it in the eyes.

I thought I was going to see the dead, uncaring eyes of an unthinking monster staring back at me. Instead, I was met with two round, pleading brown eyes.

They were the eyes of my child self.

Photo by ambermb

I realized this hasn’t been a wrestling match at all. This has been a scared, unsupported child grasping for a helping hand, reaching out for help as she drowned.

And I misunderstood her, just like everyone around her had done.

My child self grew up unsupported and unseen in a household where she was rarely alone and there were always activities to go to. My child self grew up unsupported and unseen in a household where she never went to bed hungry. My child self grew up unsupported and unseen in a household where stacks of photo albums attested to a happy, close-knit family. My child self grew up unsupported and unseen in a household where her parents tried the best they knew how.

My child self was actively, continuously traumatized anyway.

Not in the way that a single event traumatizes a person, but in the way that constantly flowing water can carve through bedrock.

Because my child self was autistic, but nobody suspected it.

I remember being that child at a birthday party, standing rooted to the spot, too terrified by the sight of children playing to join them, too scared to talk to the adults and tell them I needed to use the bathroom. I just stood there and peed my pants, and then had to leave. Everyone just thought I was “shy.”

I remember being that child on a family vacation, screaming in horror, in an absolute panic, begging to be brought to shore, when I thought “spikes” were going to puncture the raft my sister and I were on, only to learn later that they weren’t spikes at all, but refractions of light through pond water. Everyone just thought I was “overly dramatic.”

I remember being that child at a sleepover, realizing I had forgotten my “green blankie” at home and calling my parents to ask them to bring it to me because I couldn’t sleep without rubbing its fabric against my lips. Everyone just thought I was the spoiled youngest child.

I remember being that child who was kept back in kindergarten because I was too attached to my mother to move on with children my own age. Everyone just thought I was “coddled.”

I remember being that child who was so gullible and easy to fool my brothers told me there was a portal to the backyard under the sink in our bathroom. They told me to stand in the kitchen and look out the window as they disappeared down the hallway, shut the bathroom door, and moments later reappeared in the backyard. “How did you do that?” I begged. Laughing, they claimed they had gone through the portal under the sink. I went to the bathroom, crouched in front of the sink, took out all the cleaning products, and found only a particle-board back. They laughed and finally admitted that they had climbed out the back window.

I remember taking longer than other kids to learn to tie my shoes, to ride a bike, to cut my own meat. Everyone just thought I was accustomed to everyone doing everything for me because I was “the baby” of the family.

I remember not taking showers until I was about twelve, both because the sensation of water falling on me was overwhelming and because, try as I might, I couldn’t remember the steps to turn on the shower and adjust the temperature. I only started taking showers instead of baths because I started being teased mercilessly for it, and I forced myself past the overstimulation to do it.

I remember sitting up on the couch in the living room at night, crying, terrified, being told to go back to bed, and being completely unable to. I remember never being able to get out of the water at the lake or the pool because it was the only place my body felt “right.” I remember thousands of moments when my body didn’t feel “right”, trying to communicate that, and being told I was fine, that I was being dramatic, a hypochondriac, a wuss, a baby.

Photo by Yinet Gomez

I remember a million moments like these: moments when the world, when my own sensations, were too much; when my nervous system was overloaded; when I needed support and co-regulation but received criticism instead. Moments where the message was clear: you’re on your own, kid.

Moments where I was laughed at, mostly good-naturedly, the way you might laugh at a dog barking at its own reflection, when people thought I was “over-reacting,” but in reality, I was legitimately terrified or overwhelmed. Moments where I was scolded for “attention seeking” or being a “drama queen.” It was death by a million tiny papercuts.

I truly do not believe my family, my teachers, or my peers meant to be cruel. I don’t think most of them would have reacted the way they did if they had known I was autistic and struggling as much as I said I was. Maybe a few bullies would still have teased me; bullies are bullies. But I don’t believe my family was trying to be bullies. I believe they thought they were offering tough love.

I believe my family just saw me as an overly anxious but otherwise normal kid with weird quirks, irrational fears, and too much sensitivity, someone who just needed to “toughen up.”

Ironically, I now believe that several members of my family were also autistic, but with lower support needs than mine, then and now. I think that’s how they could look at my struggles and say, “Yeah, that’s relatable, everyone struggles with that, but it was never that bad for me, so it can’t be that bad for you. Just get over it.”

The only one in my family ever officially suspected of being autistic by a doctor was my oldest brother, but the doctor said a formal assessment wasn’t really necessary unless my parents felt he was severely impeded. Because he excelled academically and had a few friends, they didn’t pursue it.

And then there was me, the youngest, unfortunately born female decades ahead of research that would demonstrate that a hell of a lot more girls and women had autism than anyone previously guessed.

Being the youngest was a problem for several reasons. Every delay I had was interpreted as me riding the gravy train of my older siblings doing everything for me. My struggles weren’t seen as signs that I needed evaluation or support. They were seen as evidence that I was just the spoiled youngest child, babied, coddled. That wasn’t the reason, of course, but it made enough sense that it became canon.

It was also a problem because when my parents divorced, I wasn’t anywhere near done needing parental support, and the divorce strained, and in some cases removed, what little support I had. I already wasn’t receiving the co-regulation, understanding, and accommodations I needed as an autistic child, because no one knew I was autistic. Now I received even less.

That quiet accumulation of trauma didn’t stop. It compounded as I grew older, as socializing became more complex, as expectations multiplied long before I was ready to meet them.

Photo by Anemone123

And all the while, that little child version of me stood exactly as she had at that birthday party, unable to move, unable to communicate the depth of her overwhelm, unable to ask for help.

When that part of me realized no help was coming, her developing brain had to adapt quickly. And it did, by becoming hypervigilant, constantly scanning for threats, trying to become the parent she needed. But without discernment or nuance, she learned to think in overgeneralizations, to overcorrect, to err relentlessly on the side of caution in order to stay safe.

This is how I developed Obsessive Compulsive Disorder. This is also how I developed CPTSD.

By my teens, it had gotten so bad that I routinely clogged the toilet at home because of OCD rituals around how many times I needed to wipe. My father began rationing toilet paper. I had to ask for it before using the bathroom and was given only a small amount.

I once tried to tell my father about what I now know were intrusive thoughts, long before I knew what those were or where they were coming from. He immediately told me never to tell anyone, especially a mental health professional, because they would take me away and lock me in a mental institution. He locked away scissors, knives, and anything sharp in his room at night. He started regarding me with something bordering on fear. Eventually, he started locking the phone in his room too, because I kept “breaking the phone curfew” by calling my boyfriend at night as a compulsion.

The message was clear: you’re on your own, kid. Your issues are your fault. If you try harder, you can overcome them. You just need more tough love.

Eventually, he took me to a psychiatrist (who barely looked up from his sketch pad as I spoke.) After a fifteen-minute visit, I was diagnosed with OCD and prescribed medication I didn’t know was contraindicated for someone my age and for someone with my genetics. I had a severe reaction and became consumed by thoughts of self-harm and suicidal ideation. I stopped taking the medication without tapering, without knowing how dangerous that is, and luckily, somehow, survived. I then went unmedicated for the next several decades because I was so afraid of medication side effects.

Photo by Brett Hondow

My father was convinced that just a little more tough love would fix everything. He believed I needed to try harder at school, try harder to make friends, get an after-school job, follow the same path to success that had worked for my four older siblings. He told me I just needed to make eye contact and that the reason I was having trouble making friends was because I tended to look at the ground whenever people talked to me, and that, he said, made me look untrustworthy. When I quit or was fired from jobs because they were socially and sensorily overwhelming, he saw it not as struggle, but as laziness, irresponsibility, recklessness.

By the time I graduated high school, he had washed his hands of me. I moved out to live with my boyfriend and play in our band. I said I wasn’t going to college because I was going to make a living as a musician. The truth was simpler and harder: I had barely survived compulsory schooling and knew I couldn’t handle college. I wasn’t allowed to ever come back to live with my father unless I was going to college, unless I was willing to follow his many rules. I knew it would kill me if I did, so I took the only path I could. I left, and I never came back.

Nearly two decades later, after completely falling apart in my mid-thirties in what I now know was autistic burnout, I finally received an autism diagnosis, and I finally, finally understood myself in the right context.

But it was only just a few days ago, now in my forties, that I realized something else. That initial OCD diagnosis wasn’t a misdiagnosis, as I had come to believe. Many autistic women are misdiagnosed with various mental health conditions before anyone realizes they were autistic all along. But that’s not what happened with me.

In my case, it was autism and OCD and CPTSD.

When I was diagnosed by the neuropsychologist with autism, she kept my OCD and PTSD diagnoses. I remember asking her if this was a mistake, if the autism diagnosis now supplanted and replaced those earlier diagnoses. She said it did not, but I didn’t fully believe her. For years afterwards, I treated these diagnoses (especially the OCD diagnosis) as probable misdiagnoses.

But I’ve been struggling harder than usual lately, consumed by endless rumination, with rising compulsions and rituals that I thought I had quieted years ago. My life is good, really good, for the first time in… maybe ever. I am in a healthy, stable relationship, I have supportive family (some members of my own family and pretty much every member of my partner’s family), a tight-knit group of friends (all of which are also autistic), etc. I love my partner more deeply than I ever knew it was possible to love someone. And to my hypervigilant nervous system, that is more terrifying than a war zone. All of my trauma alarm bells have been going off, and the kraken that is OCD not only reawakened in recent months, it grew and grew (and grew) until it could not be ignored anymore.

Photo by uroburos

That’s what I finally looked in the eyes a few days ago. What astonished me was discovering that this thing I’d been fighting, these OCD compulsions and rumination, was a remnant of a coping mechanism created by a scared, unsupported, undiagnosed autistic child decades ago. Internal scaffolding that once kept me safe in the absence of adequate external support, but now limits my movement.

I’m staring down the reality of having to course-correct after four decades of using these coping mechanisms, navigating uncertainty through compulsions, rituals, and rumination. Neuroplasticity exists. OCD is treatable. But the gold-standard treatment, Exposure and Response Prevention, is not easy or gentle. It is terrifying. And it’s slower, the longer you’ve been using these coping mechanisms.

With ERP therapy, you intentionally expose yourself to what triggers the OCD loops, and then you do not engage in the compulsions your brain has relied on for years to self-regulate. You sit in the agony. Not out of cruelty, but because that is how the loops lose their power.

And here I am, a woman in her forties with a wrecked but healing nervous system, carrying decades of trauma, both slow-burn and acute, realizing that this is, pretty much, the best quality of life that a late-diagnosed autistic woman can really hope for. This is also what often gets missed in conversations about autism advocacy.

We are not advocating for acceptance only so we can be tolerated in the present. We are not advocating only for accommodations right now. We are advocating for those things, yes, but we are also advocating so the next generation of autistic children is not traumatized by omitted support.

We are advocating so autistic children are recognized, diagnosed, and supported earlier, and so they have better life outcomes.

Because when you grow up the way I did, with a family that tried their best but didn’t realize how the ways they failed to show up were actively harming you, you would do anything to spare a child from that same fate.

We don’t talk about this enough, and maybe that’s because it takes even people like me, people who lived it, decades to finally look it in the eyes.

But we need to talk about it.

Because we need to be able to look into the eyes of autistic children and see only light and joy there. We deserved better. Future generations deserve better.

And doing better begins with naming what hurt us, so we can prevent that hurt from repeating.

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It begins subtly, almost imperceptibly, as a hollow echo where something once lived.

At first, you don’t even register it as hunger. You’re too busy consuming information, aesthetics, routines, and obligations. Your days are full. They’re so full that you hardly notice the growing, gnawing emptiness beneath it all.

But without real nourishment, without regularly partaking in something of authentic substance, starvation begins to set in.

Not starvation of the body, but something deeper.

A sort of soul starvation (if you believe in that sort of thing).

It’s like sitting down at a lavish banquet only to discover, bite after bite, that the entire spread is made of light and illusion.

Holograms.

The more you “eat,” the hungrier you become.

I know because I have starved like this before.

Right after high school, adrift and longing for meaning, for belonging, I found myself drawn into what seemed like a sanctuary. It was a place that promised kinship, clarity, and Truth (with a capital T).

I was love-bombed, told I was one of the rare few who could see.

A beautiful banquet was laid before me, glittering with answers. And for a time, I believed I was being fed.

It wasn’t until much later, when the hunger began to consume me, that I realized the illusion.

Hunger drives people to desperation. In my case, it drove me to the internet, searching for… something. What, I wasn’t entirely sure.

I read articles. Watched videos. Followed breadcrumb trails of language that felt disturbingly familiar. I stumbled across information I wasn’t “supposed” to see.

I know now why they discouraged us, forbade us, from looking. Once you see it, you can’t unsee it.

And like Truman noticing the light falling from the sky in The Truman Show, I began to see that something was deeply wrong.

I knew what I was seeing, but I didn’t want to know.

It took a few years for me to fully reconcile the Truth (with a capital T) I had been fed with the objective facts I had uncovered.

Like Truman, I was faced with a choice: remain in the comfort of false certainty or step beyond it into the unknown.

And then one day, I did.

I walked through the door at the edge of my manufactured world and faced the truth I could no longer deny.

I had been in a cult.

I used to hate how sensitive I was, how easily overwhelmed, how incapable I seemed of enduring what others brushed off without a second thought.

But in this case, that same sensitivity became my saving grace. It made me just attuned enough to recognize the hunger before it devoured me completely.

Leaving the cult was one of the hardest, most humbling, and most liberating experiences of my life. Fully deprogramming my mind, reclaiming my language, and rebuilding my identity from the inside out took the better part of a decade.

And while part of me still winces with shame that I ever fell for it, the experience of being in a cult (and escaping one) taught me how to recognize manipulation, question dominant narratives, and trust the hunger that alerts you that something isn’t real.

Lately, I started noticing that same hollow gnawing creeping back in. Subtle, almost imperceptible at first, but it grew more insistent, more determined with time.

I couldn’t place it. The environment looked different this time. There was no overt dogma. No charismatic leader. No obvious cult.

I wasn’t under anyone’s thumb.

Or so I thought.

And yet, something was leaking. Slowly, invisibly, meaning was draining from my life.

It had been happening for months, maybe even years, but only recently did it become unbearable.

Unignorable.

The same instinct that once drove me to the internet in search of answers was now urging me to leave it behind.

So I did. I deleted every social media profile I had.

Except Substack. (Which, to be honest, I’m still on the fence about.)

One month.

That’s all it took for the fog to begin to lift, for the hypnotic haze that had dulled my senses to start to dissipate. With each day off social media, my mind began to clear. My thoughts slowed. My attention deepened. Critical thinking, which had felt fractured and scattered for so long, began to stitch back together.

I read more. I went outside and was startled to find it was just where I left it as a child. I laughed with my kids. I had more conversations, about everything, with my partner. I wrote. I reflected. I remembered who I was before the constant barrage of noise.

And something unexpected began to stir in me: a deep yearning for the days before the internet. Before the algorithm decided what deserved my attention. Before my thoughts felt shaped by the need to perform them.

I didn’t understand the longing at first.

It felt irrational. Even nostalgic. I worried I was falling into the old “back in my day, things were better…” trap.

But the feeling persisted.

And it was real.

Maybe it persisted because it was real.

Just like the first time I began to wake up to the fact that I was in a cult, the illusion didn’t shatter all at once. It started with something small, an offhand comment, a subtle inconsistency I couldn’t ignore.

This time, it was learning that M.I.A. (an artist I had once admired for her progressive stances) had abandoned those views to align with an authoritarian regime.

I couldn’t understand it at first.

How could someone like M.I.A., once a fierce voice for the marginalized and a symbol of resistance, shift so dramatically into supporting authoritarian ideologies?

It rattled me.

So I started asking the same kind of questions I asked when I was deprogramming from the first cult.

How does a person go from truth-seeker to dogma-spreader? From rebel to enforcer?

Part of the problem lies in a pernicious logical fallacy: the belief that mainstream equals false and marginalized equals true. This reductive binary, that mainstream = bad, fringe = good, often masquerades as critical thinking.

But stripped of nuance, it becomes aestheticized rebellion: punk becomes rejecting whatever is popular, regardless of the consequences.

Logical shortcuts like false equivalence (“All institutions are equally corrupt”) or the appeal to novelty/nonconformity (“If it's not popular, it must be right”) replace real reckoning with easy opposition.

A world flattened by algorithmic binaries is like Wonderland where up is down and down is up. Rebellion becomes a brand you can buy, and cruelty becomes “courage”.

Logical fallacies like this replace the critical thinking that would be needed to guard against becoming a pawn in the machinations of power-hungry madmen.

And so, you get people like M.I.A., who thinks she’s backing an “anti-establishment” candidate who, in reality, represents the very establishment she’s supposedly so against.

Because all he had to do was use the language of rebellion.

In Wonderland logic, conspiracy dresses up as critical thought, and authoritarianism wears the mask of resistance.

Realizing this, I saw it clearly, how it could happen to someone like M.I.A.

And I remembered how it had happened to me.

It doesn’t usually happen all at once.

It starts with something valid, something real. Something like a rightful distrust of corrupt systems, or a hunger for truth, or a refusal to accept injustice.

But when that distrust isn’t grounded in steady critical thinking, or when it’s funneled through manipulative algorithms and curated echo chambers, it can be hijacked.

The same part of someone that rejects mainstream narratives on principle can be lured into believing that any opposition must be true. And when outrage is rewarded, when identity is shaped by constant performance, when punishment follows any deviation from the script, it stops being awareness, and it becomes indoctrination.

That’s what I had missed at first.

I had escaped a traditional cult with a leader, a name, and a doctrine. But social media was something different.

Leaderless, borderless, and ever-changing, it didn’t need a central authority to function as a cult. It just needed the same tactics: love bombing through likes and shares, moral purity tests, binary thinking, the slow erosion of identity, and the illusion of belonging laced with the threat of exile.

It was all there. Just digitized. Decentralized. Automated.

This goes beyond philosophy into basic neurology.

Social media trains the brain to value speed over depth and reaction over reflection.

It rewards outrage, punishes nuance, and creates a feedback loop where stimulation replaces meaning.

Your nervous system is constantly on alert, constantly comparing, constantly scrolling. The dopamine hits are real, and so is the consequent burnout.

The brain, like the soul, needs integration. It needs stillness, silence, contradiction, and time to metabolize experience.

But social media offers the opposite: constant motion, shallow familiarity, and the illusion of knowing things without actually learning them.

And no one is more dangerous than someone who thinks they already know everything, because no one is home anymore. Critical thinking has shut down.

Once I saw the pattern, I couldn’t unsee it.

And then it hit me, hard and clear, like stepping outside and realizing you’ve been breathing recycled air.

I was in another cult.

The cult of social media.

My stomach turned. How had I not seen this?

I spent the entire day yesterday parsing through what this meant.

I reflected on what I had learned in my earlier deprogramming about how indoctrination changes the structures and chemistry of the brain, and decided to see if I could find any parallels in changes caused by social media.

I did indeed.

For instance, neurological studies show that excessive social media use triggers addiction-like changes in the brain. One 2017 MRI study found structural reductions in grey matter in regions linked to impulse control (anterior cingulate cortex) and emotional regulation (amygdala) in high-usage individuals en.wikipedia.orgen.wikipedia.org+1en.wikipedia.org+1pmc.ncbi.nlm.nih.gov+11nature.com+11en.wikipedia.org+11.

More recently, a 2023 comprehensive review confirmed that heavy users exhibit decreased prefrontal cortex volume (the same area impaired in cult indoctrination) alongside altered reward signaling in midbrain regions amenclinics.com.

This mirrors my own experience as a cult survivor: the narrowing of focus, emotional hypersensitivity, and a breakdown of independent thought.

When your brain is rewired to crave likes, crave group approval, crave constant hits of stimulation, you lose the habits of reflection. Complexity becomes discomfort; silence becomes unbearable.

And I realized that it wasn’t just about M.I.A.

It was about the employment of broader, more insidious thought reform techniques in action.

It was about what happens when rebellion becomes hijacked, aestheticized, disconnected from its moral foundation, and algorithmically reduced to performance.

It was also, surprisingly, about subcultures (punk, goth, and even parts of the neurodivergent and spiritual communities).

They all began as resistance movements.

They were originally anti-fascist. Anti-bully. Anti-consumerism.

They were havens for the dispossessed, the weird, the hurting, the questioning. They were deeply political, spiritual, and communal.

But something changed, in recent years.

These cultures, once grown from pain and love and lived experience, became downloadable identities. Aesthetic packages. Personality presets.

TikTok and Instagram didn’t invent this shift, but they perfected it. Under the logic of the algorithm, a subculture is only valuable if it’s recognizable in three seconds or less. So the clothes, the voice, the music, the attitude, they all get compressed into a visual shorthand.

A “goth” person isn’t someone who reads Baudelaire or cries to Dead Can Dance anymore. A “goth” is someone who wears fast-fashion from Shein and magnetic lashes from the TikTok shop and is a carbon copy of every other “goth” out there with a platform.

Subcultures that were once about resisting the system (the system that disenfranchised the vulnerable, to be very, very specific) became nothing more than branding within the system.

And in that hollowing out, we lost the roots. We lost the context. And without context, rebellion becomes aesthetic contrarianism. Being “punk” gets reduced to “whatever opposes the mainstream,” no matter how cruel, harmful, or fascistic.

That’s how someone like M.I.A., and so many others, fall into the trap of mistaking false rebellion for truth. It’s why some self-identified punks support authoritarian leaders, thinking they’re challenging the status quo by aligning with the very systems that crush the vulnerable.

The more I thought about it, the more I saw the parallels between social media and cults:

· Both create echo chambers where criticism, even respectful criticism, from the “outside” is seen as persecution

· Both elevate charismatic leaders (or viral influencers) whose style, tone, and opinions become a script, or a template

· Both reward mimicry and punish dissent

· Both create language systems full of jargon and memes that replace deeper thinking

· Both train you to see the world in binary terms: us vs. them, based vs. cringe, truth vs. sheeple, “in” group vs. “out” group

· Both cause people to slowly lose their individuality, becoming copies of copies of copies

And just like in cults, thought-terminating clichés are everywhere on social media. Instead of nuanced discussion, we get memes. Instead of critical thought, we get slogans. Complexity is steamrolled. Doubt is shamed. Reflection is too slow.

All because your attention is the commodity.

The algorithm doesn’t care if what you see is true. It cares if you look. And look. And look.

The more rapt you are, the more data you produce. The more data you produce, the more ads it can sell.

Social media doesn’t want your truth.

It wants your attention.

All of it, in perpetuity, forever.

The very tools we use to communicate become tools of distortion. Memes replace essays. Catchphrases replace nuance. Language, once a vehicle for thought, becomes a shortcut around it.

And I believe it is no accident.

Just like our systems of government aren’t broken, but are working as intended, so, too, is social media. It’s the design.

Because complexity slows us down, and slow people don’t produce enough data.

Even cooking shows are edited now with dizzying speed, assuming we can’t sit still for more than two seconds.

The real pace of life has been replaced by a frantic performance of life.

The real pace of life has been replaced by the pace of extraction.

Endless extraction.

Maybe that’s why I feel so empty.

Maybe that’s why so many people feel so empty.

We’re being hollowed out, for profit.

And I want slow. I want awkward. I want silence. I want depth.

I want food with substance.

And none of this shit has any substance anymore.

I want to remember what it felt like to form identity slowly, with friction and messiness and community and time. I want to remember what rebellion felt like when it meant protecting people, not just provoking for provocations’ sake. I want to remember what it feels like to live in a body, not just curate one.

I don’t have all the answers yet. But I know now what that hunger was. It was my soul saying: this is not food.

I don’t have all the answers.

But I do know this:

I want to be hungry in the right direction. I want my longing to lead me toward something real.

So if you’re feeling hollow, restless, overstimulated but undernourished, maybe you’re not broken.

Maybe you’re just starving too.

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