Sometimes people praise my pluck within the suck. (And I absolutely eat that shit up, why thaaaaank youuuu for noticing my mostly unearned zen.) But I’m not smarter or braver or more regulated (isn’t that what all the kids are craving these days?) than any other gimpette.

I’ve just been sick longer. (Probably. Any other lifers here?)

The headache started when I was six. It not only didn’t go away; it wrapped around my shoulder, neck, and upper spine over the years. Digestive crap and autonomic weirdness crept in.

Sorta wild, but I actually didn’t fully grok that a general sense of pain and malaise wasn’t a normal way to human. I mean sorta? But also, I thought everyone dealt with their own version of physical agony and it was taboo to discuss. It didn’t occur to me they were “dancing around the subject” because THEY LITERALLY DIDN’T EXPERIENCE IT.

Sometimes you’re so smart, you’re not, you know?

And so, like everyone else (I thought), I skied with my pelvis out of whack, traipsed New Zealand glutes a-yodeling, and road tripped across the desert with brain fog so thick I barely knew where I was. Everything, always, with the OG headache.

Just normal stuff, right?

And that was BEFORE I was disabled. I never would have considered the word, not remotely, because I was hiking (not as far as everyone else), working (at home after workman’s comping my way out of the agency), and skiing (crashed out for days after). Then I sneezed, blew out my neck, and leveled up into undeniable cripplehood—long before anyone had ever heard of Covid.

I couldn’t navigate a grocery store. I could barely get up the stairs. That was unignorably not-normal. And the not-normalest part was that it just would not get better. In fact, it kept getting worse.

But that sneeze was still over ten years ago.

So I already did a decade of desperate doctor shakedowns. I already had a ragey phase and griefy phase and the what-am-I-gonna-lose-next and then repeated them all 1000 times. I already lost the friends and family I was gonna lose. I already had my hopes dashed and my concerns dismissed and my body worsened by bad medical care.

None of that has stopped, but it’s also just the water I swim in these days. Or rather, part of the water. Because life didn’t stop when my body stopped working. I still get the tea from my friends and thrill over fun outfits and develop crushes and giggle with my parents and zip my e-trike around, agape at treeeeeees. I still fight the government and grouse at the neighbors and worry if I said something stupid (yes, deffo).

Sickness is just the baseline where my humaning happens.

I actually don’t know what other way there is. I don’t have healthy memories to pine for, at least not fully healthy ones. I didn’t feel good in all the pictures of me doing fun things (even if I was doing better objectively than I am now. Often, I physically felt worse, because I was cluelessly putting my body through things it absolutely didn’t tolerate.)

I have a vague theoretical concept of what it might feel like to just thoughtlessly move, graciously accept whatever plate of food, or even sit up straight with elegant posture. But it’s like imagining being a zillionaire—fun, but extremely foreign.

For many of those years, I lost things kicking and screaming and crying and miserable. In the last year, I lost my most serious relationship, my business of 18 years. Now I might lose my gloriously cheap apartment and in the last weeks, I’ve already lost many of my personal possessions to a mystery environmental disaster.

I fought to keep the last year’s batch, of course; it kiiiilled me to admit they needed to go. But when I knew they were done, this time, I let them go like a dandelion seed, floating off my palm.

Getting to the pluck plateau takes time. You can’t make yourself accept what isn’t acceptable until you just can, one day, because it’s not changing but life is moving forward and you get too bored to not use mobility aids or rest your way to outings or reduce expectations or get over yourself and ask for help (the worst one, for me). You’re allowed to be at whatever stage of the process you are, because that stage is likely needed. It’s true for sickness and it’s true for everything else, too.

However, might I offer you one shortcut that’s been crackerjack for me? (I will pretend you said yes here.) It won’t let you skip the grief, but it’ll give you the training wheels. Come in close now:

My tactic is enjoying the problem (or at least part of it), somehow.

No balance? Cheetah cane.

No energy? Hiring my friend’s kid to do grocery runs and sheet changes with a weekly dose of who-knew-I-needed-this Gen Z-ness.

20lbs insta-gained from bad meds? Please enjoy my slutty romper phase, because now I have wompers for the first time in my life! EVERYBODY LOOK.

Or oh, mystery apartment SNAFU that has me yeeting most of my well-loved possessions? I’ll be at a sweetly granted housesit up the street, watching hummingbirds flirt in the flowers as I slowly pace remediation.

It’s not perfect. I’ve melted down more in the past year than I have in my entire life. (Sidenote: possibly bc I’m better at processing emotions and just moving on now?) I still have to grieve what’s lost. To do otherwise would just be toxic positivity. It’s not pluck without some suck.

But ultimately, the universe cannot entirely squish someone who is determined to have some semblance of a good time in a bad time.

I’d like to think I come from a long line of people who know how to do this. When my grandmother was near passing, we (all her kids, most of their spouses, all her grandkids) propped her near lifeless body up in a recliner in her living room. We one-upped each other on uproariously funny true stories until Gram’s face, completely slack from a stroke, couldn’t help but crack into near-weeping laughter.

After, the smile lingered, her muscles unable to change it.

We had a good time in the worst time, the end times.

I learned from the best.

We all can.

A note on my GoFundMe:

My GoFundMe is my current survival strategy. Please give if it feels good and aligned for you. Thank you to everyone who already did. And zero worries to anyone who did not, could not, felt on the fence.

Your shares (of the link, of my posts, etc.) mean just as much as a donation. Just being here as a subscriber is enough, too.

Transparency: the fundraiser goal WILL go up. Nicole set it up this way, and we’re grateful for her footwork.

Have some free cash, from survival tools I actually use:

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. If you’re gonna click ONE LINK, it’s this one. Regularly saves me $20-30 on big purchases. If you’re a paragon of privacy, skip; I personally don’t mind targeted ads.

• Get up to a $300 bonus (and then 6% back on groceries, which are spendyaf rn) with no fee for the first year on this card with American Express. (I get $75.)

• Get ANOTHER $300 with a Capital One checking account. IDK, it’s a zero-fee checking account that I mostly opened to score $300? Seems good! (I get $50.)

• Get $100 when you open a new Ally high-yield (~3.3%!) savings account. No minimum deposit! No fees. (I’m linking my sister’s referral bc I’ve earned all I can on mine, and she’s also a sickie who could use the bonus rn.)

• Score a $100 REI gift card just for buying something not at REI. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? I’ll take the money.

• Help yourself to $10 at Instacart (and toss me $10). It’s clutch in a pinch and I’m 80% happy with it (and they’re good about refunds when I’m not). My top tip: actually tip.

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

Not cash, but…

• Take $60 off a Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb.

• Take 25% off Lost Range CBD (I get $10) here. Deep in the agony cave, I ordered their Gold Buckle Muscle Rub and GLORY HALLELUJAH first three hours of real pain reduction in like 30 years. Put it on your sickie wish list!

There’s some newbies here so welcome to my Meatscon: getcha one!

Fill it out. And have a slightly better handle on your own personal ever-changing hellscape! (In all seriousness…it truly helps my nearest and dearest to know “where” I am on the suffer-scope.)

Why? A freak accident involving industrial-grade pesticide, old varnish, and one gunked-up A/C perma-permeated every softish item in my apartment with eau du soggy German Shepherd barf (with notes of asiago). The entire laundry aisle won’t wash it out. New things infuse with the musk hours after coming home.

Hello from the middle of a remediation I never planned on for a life circumstance I never even knew existed.

Kinda true for a bunch of life right now, actually.

Suddenly, every former “God I’d never” is exactly the right next step.

Never Say Never #1:
Screw intentional consumerism, let’s hit Wal-Mart.

Sue me: I like nice things. I’m picky about what I thrift, the companies I shop, and the gifts I put on my registry. Guys, I hand-wash my cashmere socks. (I know. What scrap-ass hand-washes? Or fucks with cashmere?)

But butt-deep in this remediation, I’m replacing my long-loved, durable necessities with dorm-quality crap. I bought an emergency outfit from SHEIN (shudder, but so many compliments!). I’ve slept on a bare mattress under a cheap TJ Maxx towel. I spent a week buck-naked in my house to preserve my one wearable “appointments” outfit. (Did I mention I had to yeet my curtains? You’re welcome, neighbors.)

I don’t want anyone to get this musk, on the off chance it transfers. My Mom tried heroic efforts to save a few favorite things, but I didn’t donate, sell, free pile, or gift anything like I normally would. I just chucked it.

Trashing my favorite things on a tear felt like reckless, forbidden mania. It wasn’t. It was just the only option that made sense.

(Bonus: I hella decluttered. Much of it against my will, but also like, some grody-ass old stuff, too.)

Never Say Never #2:
Cutting forever short with my (former) forever person.

You can date while diseased. You can also dump while diseased. I didn’t break up with my (supportive, thoughtful, abled, smart, cute, scandalously younger) partner over health stuff. My already limited capacity just meant I noticed some unpatchable leaks much sooner than I would have as a healthier person.

I hauled ass to five different therapists trying to save that relationship, the one I was so smugly sure was forever. Ending it was my never; my unthinkable thought.

I couldn’t understand why I needed to (and damn, I needed to) until I smashed the formerly-forbidden eject button.

Our tandem arc exploded. But I, crucially, did not. Onto new forevers.

Never Say Never #3:
Fuck freelance. It’s SSDI disability-o’clock.

Remember how I told y’all you can avoid going on disability by starting a microbusiness?

YOU CAN. I did for 18 years! I actually spent more years running my business really effing disabled-level sick (10 total) than I did in a well-er (but never healthy) state.

But after a 21-day Covid case, a measles shot into a faltering immune system, and an ass-thrashing winter, my health was too cooked to even write a coherent email. When I could barely get my garbage out twice a week, applying became the only way forward.

And according to my lawyer, not working at all on paid projects for two to three years would be the only way forward through this only way forward.

I’ve freelanced since I was 14. This so wasn’t the plan. But now it is. Despite how wrong it seems, it feels exactly right. Or rather, time. Very very time.

Never Say Never #4:
Choosing independence…when it meant asking EVERYONE for help.

Listen. I cleared the hurdle of graciously receiving years ago—gifts, hospital-bill forgiveness, some financial family support. (And thank you to everyone who was a part of that.) One reason I did this was to try to save up the $50k-80k I knew I’d need to apply for disability. I was able to sock away…$2k. Pretty decent for working extremely part time, pretty dismal for a multi-year incomeless slog.

Without enough savings to weather applying, I thought I would have to move in with my parents, out of state. I’d try my hardest not to encroach on their retirement. I would shrink myself as small and needless as possible, burdening absolutely NO ONE, but especially not the people who had already given so much.

That (mucked) concept of disability kept me from applying when I really needed to. I couldn’t bear to give up my my impossibly-cheap solo living arrangement, my beautiful Bozeman, AND my favorite friends…all while also yeeting my livelihood and lifeblood and last shreds of independence to go live in the hometown I’d once absolutely FLED.

I could never apply, because I could never leave, because I could never put all that pressure on my parents (from my view, not theirs).

That was FACTS until it wasn’t. A secret third option appeared when Nicole launched a GoFundMe to keep me here. A fundraiser was ALSO a big never for me, or at least a lever to save for surgery only. When it came down to keeping Bozeman or my keeping my self-imposed, self-flogging ethos, though, I chose Boze. Or at least a chance at it.

So far, Bozeman chose me back. I kinda forgot, my friends might want to keep me here, too. Or at least not let me go without a fight.

Where choosing all my never-evers got me.

Yesterday marked three sleepless nights in the cheapest digs I could find during this remediation with my parents. They worked their senior asses off, which both warmed and broke my heart. The remediation is faaaaar from over (whimper), but the dust momentarily settled.

Wrung the heck out, nostrils full of funk, ya girl needed OUT. I raided the entire spoon drawer and my last sorta-clean outfit to hit a business block party where I knew my friends would be. (Note: one does not casually “hit” anything with ME/CFS, but also, adrenaline is a powerful drug.)

I barely blurted “I need hugs” before I was sandwiched in favorites I’ve known for 10, 15, nearly 20 years. A vodka huckleberry lemonade I shouldn’t have drunk (but definitely did) appeared in my tense fist. The smiles caught. My shoulders lowered.

I marveled at my friends, who—to me—change so much between in-oft sightings. Some softer, some fitter, some crows-feetier, some Botoxed, dressed down, dressed up, mellowed out, keyed up, a little sadder, a little happier, a little wilder, older, lighter, deeper.

More themselves than they’ve ever been, really.

Swaying in sweaty overalls, perfume lingering from all the hugs, summer sky breaking into lightning and thunderstorms all over the last of my laundry drying on the fire escape back home, I thought: I am too, somehow.

The GoFundMe to (hopefully) bridge my gap to disability is here.

A note on my GoFundMe:

The idea of already-impoverished sick people funding my GoFundMe makes me actually queasy. I am very, very, very lucky indeed to have a fundraiser that is already quite chonky. Of course, give what feels good to you if you like! Know that shares can be just as helpful as donations.

The fundraiser goal WILL go up. Nicole set it up this way, and we’re grateful for her footwork.

Til next time, sickettes!

Have some free cash, from survival tools I actually use:

• Get up to a $300 bonus (and then 6% back on groceries, which are spendyaf rn) with no fee for the first year on this card with American Express. (I get $75.)

• Get ANOTHER $300 with a Capital One checking account. IDK, it’s a zero-fee checking account that I mostly opened to score $300? Seems good! (I get $50.)

• Get $100 when you open a new Ally high-yield (~3.3%!) savings account. No minimum deposit! No fees. (I’m linking my sister’s referral bc I’ve earned all I can on mine, and she’s also a sickie who could use the bonus rn.)

• Score a $100 REI gift card just for buying something not at REI. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. I’m always surprised just how powerful it is, and it regularly saves me $20-30 on big purchases. If you’re a paragon of privacy, skip; I personally don’t mind targeted ads.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? I’ll take the money.

• Help yourself to $10 at Instacart (and toss me $10). It’s clutch in a pinch and I’m 80% happy with it (and they’re good about refunds when I’m not). My top tip: actually tip.

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

Not cash, but…

• Take $60 off a Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb.

• Take 25% off Lost Range CBD (I get $10) here. Deep in the agony cave, I ordered their Gold Buckle Muscle Rub and GLORY HALLELUJAH first three hours of real pain reduction in like 30 years. Put it on your sickie wish list!

The Meatscon is kinda old meat at this point, but people still download so... getcha one!

Fill it out. And have a slightly better handle on your own personal ever-changing hellscape! (In all seriousness…it truly helps my nearest and dearest to know “where” I am on the suffer-scope.)

Real quick: this newsletter is free, but the links keep me in Crocs and organic chicken. So, before you read, please enjoy a fiver on me! (And our corporate overlords.)

Get $5 (plus endless shopping bonuses) from Acorns…where I’ve accidentally made ~$2k in less than a year, what? Seriously, sign up TU-DAY.

Alright, on with the show.

It is 1990-something. I’m lying face-down in a canvas hammock thingie, head peering over the edge, elbows linked with my kid sister. We’re ratcheting backwards 150 feet into the air, as one does in the 90s. At least at Lagoon Amusement Park, where we’re riding a massive, and I mean massive, two-person uber-swing.

My parents actually paid extra for this. I cannot imagine what my mother was feeling, peering up at her only two progeny, her baby girls now barely tweens, slowly rising higher and higher into the air, knowing we’d be momentarily unleashed into a free fall and subsequent 80mph flying “AHHHHHHHHHH” across the park.

I do remember what I was thinking: human error, amusement park death stats, Beth is going to pull the ripcord too soon, God, is this how we die? I’m only twelve!

But you know what else I was thinking?

“Hell yeah.”

Meanwhile, back at the sick ranch, Instagram and trauma-informed therapists are urging me to seek safety—esp in my overcooked (and over-mentioned) nervous system.

Safety-seeking makes sense, since my body is basically an abusive relationship I can never leave. What’s brainless for most people—food, movement, light, sound—is poison to me. So yes, I definitely need beauty, boundaries, plush brain nooks, good self-talk, and may I be so bold as to submit: microwaveable slippers. As we all do.

Safety first, fersher, no argument there.

But you know what I don’t hear that much about, that we safety-seekers need maybe as much if not even more?

Aliveness.

I know. Tall order. But I do think we can get there. Stay tuned.

Whenever I put my life on the line (or I feel like I am), the present moment becomes verrrry interesting.

Winching 12 stories up with my little sister, I heard every ominous click. I felt Beth’s “what the crap are we doing” terror vibrating next to mine. The Wasatch Mountains, that high-up hawk-call breeze, the light blue sky I thought we might never see again branded instantaneously into my brain, memorable now even after 30 years.

The last thing I felt was safe.

Awesome.

Because when Beth pulled the ripcord (on time), and we plummeted towards the earth, catching the cable’s end to frictionlessly swoop at 80 miles an hour through summer air, slowing to hang weightless at the end of our long arc, then dropping back, soaring free above the park—

We lived. We flew. We screamed in tandem from the full depths of our prepubescent lungs with uncontainable, indisputable aliveness.

That’s what Mom and Dad paid for.

Safety can be a bitch to find in a serious illness. Aliveness, even harder.

Because make no mistake: you can’t squeeze aliveness out of any old lack of safety. I already feel danger all the time. Guessing you do too. Indigestible muffins, ear-splitting leaf blowers, a doctor’s facial expression previewing our bad fate. These are not the daring-dos that make us feel alive.

Aliveness is a danger I choose, the kind that reminds me exactly who I am and where I am. Always: one infinitesimal human, in an unrepeatable sliver of time, a pinprick on a globe that’s a dust speck in a vast universe.

That is never not a miracle sensation. I need and crave it as much (and often more) than safety. It calms me, bringing me to a present that crackles.

The price: a risk made solely for the fun of taking one.

If Mom and Dad or some other imperative forced us to ride the SkyCoaster, it wouldn’t have sparked aliveness. It would have sparked trauma. We sickies endure enough of that. We need agency in our danger. My parents let us choose because they knew the point of life is to actually feel alive sometimes.

But what danger can I choose now, when the real world is down three impossible-feeling flights of stairs and I haven’t seen my real self in more than flickers in over a decade?

I’ll tell you one: when certain songs come on the radio, I can’t help but start skiing. In my head, I mean. My shoulders reliably unclench.

At first, that didn’t make sense, because even imagined skiing is just falling with style down a mountain—sharp-edged planks on my feet and a stabby stick in each glove.

Still, when a PT asked me to visualize skiing while I was hooked to a biofeedback machine, the graph showed my muscles letting go, not tensing up.

Because skiing is my chosen danger. Even just brainwaving it. It doesn’t put me exactly into the present moment, but it puts me into something very close—a richly imagined risky memory that feels present. One that makes me feel alive and myself.

Look, my noggin resort pales in comparison to old stomping grounds, like Bridger Bowl and Jackson Hole. But thanks to my delulu, it’s where I’ve got a permanent season pass. (Even in summer, apparently.)

What else? Historically, being myself has never been the safest choice. Lately, it’s an imperative one anyway. I can’t ski or draw or swing dance or even work right now, but I’m choosing the Kira-est way in the smallest of things. Places where I would have self-censored before. Like…

Should I wear a slutty cute romper from the juniors’ section even though I’m in stage one lipedema legs?

Should I dare to make that totally off-color joke that I still think is hilarious?

Should I go ahead and chat up my favorite people even when my brain fog is so thick I feel like I’m actually drunk, but connection is what counts?

Yes. Yes yes yes.

In spite of errant uncontained chub, awkward did she just really’s, and mistakenly saying I’m doing the dentist instead of going to the dentist which, facepalm.

I do it for the plot, and the plot thickens. Deliciously.

There is a time and place for safety. For many of us sickettes, it is a big time and it is a big place. (She says, from her ergonomically correct heated office chair with noise cancelling headphones, twinkle lights, and fuzzy socks courtesy of my friend Julie.)

If anything, I need at least a baseline sense of safety to even feel comfortable taking a risk. It’s definitely an “and.” Safety and aliveness.

Aliveness in illness is not about blowing the boundaries that keep me less flared. (Sometimes, it can be, but I’m having more fun testing other limits—like my capacity for embarrassment.)

And test I do, because at a certain point, I need a reason to keep doing all the meditations and boundaries and sensory rests. If safety is survival, a well-chosen risk reminds me what I’m surviving for.

I need to scare myself a little, in the best possible way.

For now, that’s schussing the mind palace. Inappropriate asides (and rompers). Whatever feels like a terribly fun, definitely inadvisable, probably survivable bad good idea. (Good bad idea?)

I am prowling for small things that hit the same big notes as a giant amusement park swing. Ideally for free, and with less screaming. (Usually.)

I am curious: where are you choosing your own adventure, these days? However tiny?

Whatever it is, I hope under your held breath, the what-the-bleep-am-I-doing, the nostril flare of brazenness, it makes you think:

“Hell yeah.”

Money for nothing! Sicks for free…

• Get $5 plus shopping bonuses from Acorns. It costs $3/mo and you invest as little as $20/mo, plus incidental shopping bonuses that get invested. I do get a fluctuating amount of money if enough readers sign up at once (rare but happened once.)

• Get up to a $300 bonus (and then 6% back on groceries, which are spendyaf rn) with no fee for the first year on this card with American Express. (I get $75.)

• Get ANOTHER $300 with a Capital One checking account. IDK, it’s a zero-fee checking account that I mostly opened to get $300 but why not? (I get $50.)

• Get $100 when you open a new Ally high-yield (~3%!) savings account. No minimum deposit! No fees. (I’m linking my sister’s referral bc I’ve earned all I can on mine, and she’s also a sickie who could use the bonus rn.)

• Score a $100 REI gift card just for buying something not at REI. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. I’m always surprised just how powerful it is, and it regularly saves me $20-30 on big purchases. If you’re a paragon of privacy, skip; I personally don’t mind targeted ads.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? I’ll take the money.

• Help yourself to $10 at Instacart (and toss me $10). It’s clutch in a pinch and I’m 80% happy with it (and they’re good about refunds when I’m not). My top tip: actually tip.

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

Meatscons are so 2025 but you can still getcha one!

It’s just a little tool for telling your people where you are on the sickness scale in a single number grunt. Hot tip: you can download it for free, then come back and buy another one (or just Venmo me) if you feel like dropping some dollars.

I appreciate you appreciating me:

I’ll always welcome a decaf americano (iced for summer!) at Venmo kira-stoops and my gift registry is here.

Til next time, sickettes (and well-ettes! and inbetweenettes!)!

DELIGHTED.

However, as you expansively accepted all her recommended links, you may have innocently wafted from the University Book Store (intellectual, curated, high brow) to that hazy “crystal shop” next door (scented, mildly interesting, is that…a bong??)

Obviously not. It’s a uh vase. Because this is a CLASSY ‘stack. For squares. The ones with hearts of gold and purses of pills.

Or like, anyone, ever, who’s had at minimum a mildly shit time.

Just…come on in.

shop bell tinkle

(And to my regulars: HIIII!)

Welcome to ME/CFS Awareness Day, a day uponst which I am extra aware I have ME/CFS.

(ME/CFwhat? Yeah, same. I’ve had it for 10 years now and still 🤷🏻‍♀️. I mean, I know what the acronym stands for, but it describes the illness so inadequately we’re not even gonna grace ‘er with a spell-out.)

So for the uninitiated, ME/CFS is the piquant sensation that last night, you were in a fender bender after you misjudged a flaming hoop leap and screaming-starfished down a looong flight of concrete stairs, but ALSO got roofied—twice—so remember none of it.

But your body remembers. It keeps the score (what an asshole). But the score never changes. Because you keep losing. You keep crashing and burning. Every night. Night after night.

All 3,650 of ‘em now, for me.

“You know, if nothing else, this disease makes you more interesting,” says my bestie Nicole after I blow my energy budget Buicking to a local trailer park to pick up black market quail eggs. As one does. Dale (cash only, obvi) keeps “the gals” in his plywood-floored living room slash quail coop. (Can you smell this paragraph? Just checking.)

Why step into such a Dateline-coded jump-scare when I can barely stand? I’m running out of foods I can eat.

Love (of eating I guess) makes you do desperate—but interesting—things. All kinds of ‘em!

Like just in the last month or so. I’ve:

• Thrifted a cheetah cane bc balance schmalance. Nicole cannot stop cackling at the juxtaposition between my actual speed (bovine at best) and my hellcat stylings.

• Pureed all my food (ALL MY FOOD, EVERY MEAL) bc illness will wreck your teef, but insurance won’t call that a health expense (make it make sense).

• Scored in the lowest 11th percentile on a “brain game” that’s just: tap the screen, literally anywhere, to shoot bad guys; DON’T tap to spare friends. (Oops.)

• Had a two-hour giggly dance party with my retired parents, in which I very lightly swayed in a chair while they did the Twist, swing-danced, and moshed around me to low-volume oldies. I hope to be well enough to return the favor in 30ish years, when they’ll be in their own Seated Era.

• Forgotten my address. Of nearly 20 years. IT’S FINE MOVING ON

• Paid 950 effing dollars for a plane ticket to the next big town over (usually like $200) because I can’t drive or even ride along for more than a mile or three, to see one of a literal dozen of specialists for a disease that decimates MILLIONS. #millionsmissing

• Lost the remaining 11% of my mind when said specialist bounced like 4 days before (it’s fine everything is fine all good).

• Thanked the clinic profusely for hooking me up with a gem of a replacement even as they ALSO hit me with a potential $4k+ annual fee. Not for appointments—just for the privilege of possible treatment. That also costs money and they don’t take insurance but godDESS are we grateful for a sliding scale and being a patient at one of two very limited patient centers in the US.

• Flunked a test at said clinic that is literally just standing for 10 minutes.

• Backed out of a labor of love, absolute dream, career-capping project so I could focus on calling doctor offices, staying awake for med deliveries, and battling with healthcare systems over every effing comma on over a dozen (no exag) patient portals.

• Written this missive, in minutes, using a week’s worth of spoons bc I cannot help myself, even if it crashes me later. Your hearts and comments and send-alongs and even just 10 more people knowing about ME/CFS are (sorry, this is cheez) worth it.

Here’s the deal: I believe a life with ME/CFS can still be a life. I typed out MYRIAD caveats to this, which I deleted bc it would take pages. Just know I’m not churching anything up, for you, me, or your nearest and dearests when I say—or actually Thich Nhat Hanh said—because you are alive, everything is possible.

Even for a MEep. Not guaranteed, and certainly not required. But possible. Things like:

• dating (or dumping. or wedding! or surviving breakups. or staying single)

• running a microbusiness (or closing it down)

• building and maintaining community (and taking a pause)

• swinging luxury on an extreme budget (or just robbing a dog salon, stay tuned)

• traveling (or finding at-home magic)

• feeling hope, grieving loss, concepting a soap opera with your patient pen pals about your scandalous specialists who are DEFFO SHABOINKING you guys (soft focus)

…all while very, very sick. (Although maybe not all at the same time.)

It may be mini-golf, and it may be our seventh-choice preferred way of doing things, but it is, unmistakably, a real life. Rife with shitstorms, good times, and possibilities.

So we’ll take possible. While demanding research, funding, better social support, a cure.

So, Merryest of ME/CFS Awareness Days to those who are newly, midly, and oldly aware. May you be plied with gifts off your registry (you’ve made a registry, right?).

May ALL your doctors say things to you like, “I may be the expert in my field, but you are the expert in your own experience,” (which my dreamy dentist actually said to me last week).

If you are well, may you be graced with a showering of spoons from your favorite sick person. May you appreciate your unfailed body parts. May you find common ground, in other struggles, because deep down, every struggle is the same struggle.

And may you feel welcome here. Scream into the void, giggle and wiggle your toes at the edge, and smoke ‘em if you got ‘em.

But NOT IN MY UH VASE.

Wait I want more!

I was inspired to wrap these bits n’ bobs up by Molly Freedenberg’s excellent Well, Actually’s ME/CFS Awareness Day piece, which you should go read right meow.

Do your other Substacks give you money to read them? I thought not.

• Get $100 when you open a new Ally high-yield (~3.3%!) savings account. (Gives me $50, too.) No minimum deposit! This one’s my fave for the buckets feature. You don’t even have to fund it hard. But if you do, it’s the easiest money you’ll ever make. No fees.

• Get up to a $300 bonus (and then 6% back on groceries) with no-fee for the first year on this card with American Express. (I get $75.)

• Get $5 from Acorns…where I’ve accidentally made ~$2k in less than a year despite eye-rolling at it for years? (Just do the lowest cheesiest tier at ~$3/mo to maintain the account, which usually more than pays for itself. The main thing is, there are cashback bonuses on places you already shop online and it invests it for you. Easy peasy lemon squeezy. (I do get a fluctuating amount of money if enough people sign up at once (rare but happened once!)

• Score an $100 REI gift card just for buying something not at REI. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. The catch is they def sell your shopping habit info and you WILL get ads for everything you ever look at. Do I care for me? No. But if you’re uber-private, skip.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? IDK.

• Help yourself to $10 at Instacart (and toss me $10). It’s clutch in a pinch and I’m 80% happy with it (and they’re good about refunds when I’m not, which is maybe more than I’d like but what’s a crip gonna do).

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

Meatscons are so 2025 but you can still getcha one!

It’s just a little tool for telling your people where you are on the sickness scale in a single number grunt. Hot tip: you can download it for free, then come back and buy another one (or just Venmo me) if you feel like dropping some dollars.

I used to resist when people tried to appreciate me, but those days are goooone:

I’ll always welcome a coffee at Venmo kira-stoops and my gift registry is here.

Til next time, sickettes (and well-ettes! and inbetweenettes!)!

Let’s pull a Harry (as in, When Harry Met Sally) and reveal the ending first: facing this hard truth didn’t mean I hit rock bottom. I hit something spiky, for sure, but it let me let go of more than ever (again), ask for and accept more help (agaaaain), deepen my most important relationships, and of all things, have a banner 2024 in my microbusiness. (Which was really good bc 2025 [redacted].)

Here’s the thing: looking your own reality in the eye is damn near impossible when said reality has, like, B-grade horror film alien laser retinas ready to zap you into special-effects smoke.

But when you finally DO see things clearly, you may find yourself mysteriously endowed with the chutzpah to zap right back.

Probably not to the reality you want, but maybe to one you can live with.

“You went to a dark place just then,” says my friend Adam at the coffeeshop this morning. We’re co-working. He’s studying, launching a new career. I’m blowing the few hours I get before the pain kicks in to sort out Big Life Solutions.

But there are no solutions. There are only brainteasers like,

How do I work and pursue medical treatment at the same time, when I barely have the bandwidth for one, but they both feed off and into each other?

How do I apply for disability to not have to work so much, when applying for disability is a ton of (unpaid) work that bans paid work?

How do I move any projects forward when thinking too deeply kicks off monstrous headaches? When I entirely forget what I was doing if I break things up?

My whole life, I could charm, outsmart, grind, or write my way through anything.

I wrote my way into scholarships to go out of state for college, snuck into an apartment at 1/3 the going rate for the last 14 years, exited the workforce long before it was cool to launch a copywriting consultancy, and developed ever more elaborate workarounds for a tsunami of mounting symptoms.

I never had enough resources, the forces at play were always bigger, but I knew, wits intact and proverbial pen in hand, I got this.

And I did.

“You got this” is my least favorite stoke-up.

Because at the right time, “you got this” means “I see that you’re strong, smart, resilient and capable, even if you don’t right now.” Or, “Yeah, this clustercuff seems big to you now, but you’ve fried bigger fish—remember?”

Then there’s the wrong time.

We want to believe there is no wrong time. Because even if the resources to pull through are pretty much zilch—you got this—you’ll rustle them up, somehow!

We like our myth that systemic bullshit is no match for underdog scrappiness—you got this! Sometimes we can rise to that. But sometimes it’s harder when everyone’s so unrealistically sure we can.

Because no matter how powerful the forces of nature and government are against your tiny human form, we need to say,

You got this!

You’ve got to got this.

Because if you don’t got this, maybe I don’t got this either.

My friend Andrew knows me better than Adam. Recently, I called to get his big brain cooking on my next disability-friendly business venture.

But first, Andrew. He started his first business when we were in junior high, married his soul mate, and passed their mutually excellent genes on to three commercial-worthy blonde children. He’s funny-for-real, smart, and wealthy while living well below his means. He even has all his hair. And he’s absolutely lovely about being so blessed.

(I know.)

Andrew’s got this his whole life.
A sense of fulfilled destiny blasts out of the man.

Anyway, ring ring, how’s things, and then Andrew said,

“So you’ve got an incurable disease that fries your brain, wrecks your memory, wracks you with pain, eats up all your time in doctor appointments, locks you in the bathroom for the majority of your waking hours, and you want to know how to redesign your life to fit into all that?”

“Yes!” I responded, eager to hear his entrepreneurial brilliance.

“Kira, you don’t.”

I felt my eyes sting with the unexpected reality of what he was saying.

“These are serious, substantial limitations. You can’t just…work around this one.”

Buried under those words:
you don’t got this.

Hearing it felt like a relief.

Andrew could have said “you got this.” Many other friends already had.

It would have been easier for him—to not have to stare into the dark place with me at that moment. To have left me on my own. You’ve got this! Aaaaand I’ve got something else I need to do. Toodle-pip!

He could have pretended that my problems were smaller than I made them out to be, or that I just wasn’t adequate enough to face them—a personal failing. You got this! And if you don’t, there’s something wrong with you.

He could have denied the reality of my circumstances.
I often do. I’m doing it right now, pushing to finish this post.

But he didn’t. As a clear-eyed optimistic outsider, he spoke the unspeakable thought that had been haunting my foggy brain.

Saying it made it real.

And now, that dark place just looks like the truth.
Daunting. But faced.

I don’t got this, and I’m not sure what that means yet.

Probably, asking for help. Even more help than I already have asked for. (#$%.) And, you know, accepting it.

Giving things up that I don’t want to give up—my business or Bozeman, my independence or my covert craft chocolate habit.

Cracking open to possibilities I can’t see yet. Enduring the things I thought I couldn’t.

Finding out who I am, under the next layer of loss. I’ve learned who I am without skiing and hiking and muscle tone and pretty hair and a waistline and walking and working full time, part time, small time, tiny time, microtime.

I keep getting smaller. But maybe the next matryoshka doll under this one is an even badder bitch. Microscopic as she is.

I don’t got this. Like so many other people falling between the cracks in the system, society, and nature, I’m not going to be able to pull my ideal photo finish out of this one. I can’t find an elegant answer when it isn’t there. As my Mom so eloquently says, you can’t fight a fog.

But finally admitting that enormous insurmountability, accepting a major degree of inevitable defeat, and gathering the resources to face it feels like,

maybe,
in a twisted undreamed-of roundabout way,
somehow,

I do.

Whew. Okay. That was a lil heavy, but remember what I said about zapping back? Here are a few ways we do:

• Get $100 when you open a new Ally high-yield (3.3%!) savings account. (Gives me $50, too.) No minimum deposit! This one’s my fave for the buckets feature. You don’t even have to fund it hard. But if you do, it’s the easiest money you’ll ever make. No fees.

• Get up to a $300 bonus (and then 6% back on groceries) with no-fee for the first year on this card with American Express. (I get $75.)

• Get $5 from Acorns…where I’ve accidentally made nearly $2k in less than a year despite eye-rolling at it for years? (Just do the lowest cheesiest tier.) It’s ~$5 to maintain the account, and it feels a little pyramid-schemesque if you chase the referral bonuses, but you can just skip that part if it’s not your jam.

• Score an $100 REI gift card just for buying something not at REI on this card. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. The catch is they def sell your shopping habit info and you WILL get ads for everything you ever look at. Do I care for me? No. But if you’re uber-private, skip.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? IDK.

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

Meatscons are selling like hot (meat?) cakes! (They’re really not, and free downloads are welcome, but thank you to those who bought one.) Getcha one!

Fill it out. And have a slightly better handle on your own personal ever-changing hellscape! (In all seriousness…it truly helps my nearest and dearest to know “where” I am on the suffer-scope.)

Here’s how I’m currently keeping afloat and keeping this newsletter gloriously free:

I’ll always welcome a coffee at Venmo kira-stoops, any payment on the Meatscon, and my gift registry is here.

Til next time, sickettes!

To my regulars: it’s been a MINUTE. I’ll explain. Another day.

To everyone here from the indomitable, formidable, absolutely legendary Jodi Etternberg’s Curious About Everything (a truly dear friend)—hullo!

Like Jodi, I’m flattened with a nasty illness and severe chronic pain.

Unlike Jodi, I write sporadically about crafting a dreamy life with a nightmare illness.

No maladies required to stay—just an armchair appreciation for grit, beauty-questing, and wrestling with unwanted realities. Not you? At least take the money before you run!

I’m always curious what people look like, so here’s me a few days ago:

• Get $100 when you open a new Ally high-yield (3.3%!) savings account. (Gives me $50, too.) No minimum deposit! This one’s my fave for the buckets feature. You don’t even have to fund it hard. But if you do, it’s the easiest money you’ll ever make. No fees.

• Get up to a $300 bonus (and then 6% back on groceries) with no-fee for the first year on this card with American Express. (I get $75.)

• Get $5 from Acorns…where I’ve accidentally made nearly $2k in less than a year despite eye-rolling at it for years? (Just do the lowest cheesiest tier.) I do believe it’s ~$5 to maintain the account, and it’s a little pyramid-schemy if you chase the referral bonuses, but you don’t have to.

• Score an $100 REI gift card just for buying something not at REI on this card. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. The catch is they def sell your shopping habit info and you WILL get ads for everything you ever look at. Do I care? No.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? IDK.

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

While this is my least typical post, it was also my most visited—people needed the tips. So today, unsolicited advice, fluffed up a bit from last year. Not our usual programming, but we’ll return to that next episode.

You’re going to need wiles to survive sicklife. (Or Momlife or unemployedlife or whatever adventure you’re on.)

But first, let me fully admit: I also lean on privilege, lucky breaks, chance, ability, creativity, my adorable ski jump nose, and scrappiness. In that order.

If something can help you, let it help you. Perversely, this is called helping yourself.

Past me really, really did not want “help”. Like everyone, I had very good and precious reasons for this. Like everyone, life got a lot better when I punted them.

Past me deserves a righteous wedgie. All she did was put herself and her loved ones through a meat-grinder martyrdom while paying $200k in medical bills on a low salary.

For what? Optics? You know what’s better than optics? Compounding interest. And yes that makes me sound like an empty Wall Street shill, but incoming: tips that will cost you zero soul chunks.

How I make enough money to get by as a chronically ill human in constant gnarly pain:

1. Run my own microbusiness.

1. My services have a healthy price tag per hour. My client results justify it. In the 2020s, I made an okay-ish salary working less than quarter-time. (Except 2025, which can eat an entire ahem, but I still made enough.)

2. Because I own a business, some things that do double duty in my life are company expenses and therefore tax deductible.

3. My microbusiness connects me to decent-ish, subsidized health insurance (which accesses me to doctors who don’t take Medicare or Medicaid).

4. It also allows me to set up and fund retirement accounts—with contributions that come off my income for said health insurance subsidy calculations.

5. I have to save money for business taxes and company expenses…no reason they can’t go into a high yield savings account and make a little interest while I do. This link gives you $100 to put into my favorite personal one (and I tried a few.)

   Think maybe you could start a microbusiness? Then scooch it high-ticket over time? I do.

2. Live low on the food chain.

1. I live in tenement housing where rent is half what it should be. Boiler heat, water, and gas is included (and unlimited. Just like the Victorian clothes moths).

2. Nearly all of my furniture, decor and fave clothes came courtesy of our building’s free pile. (I also consign things out of the free pile if no one grabs them.)

3. In our building, we watch out for one another. I take notes and flowers to a former schoolteacher who has lived in our building since the 70s (!). She schemed to get me the ONE close parking spot for our 40 person building.

4. I drive my Nana’s turn-of-the-century Buick. Absolute tank. Cost me a $1, thanks to my Dad. Smells like a sewer anytime the temp hits above freezing, but she’s hard to kill. Kinda like me.

3. Ask for help that actually helps.

1. I have (out-of-state) family support. It took years to rally. That's another post. But it comes in many forms, all of which make life more sustainable.

2. I support my community how I can, and they support me back. My best friend covered a month of therapy, for which I am extremely grateful…and I’ve also been available for unlicensed “voice note therapy” when she needs.

3. I put out what I need (or want!) into a gift registry. This was SUPER EMBARRASSING when it started as a joke and then leaked to half my friends for my 40th, but…it’s just been a blessing since. Floss, food, towels, sheets, some small luxuries (AND MY ENTIRE TRIKE!) come my way, often from friends (thank you Boss Gals!), sometimes from sweet readers who won’t even tell me who they are. <3

4. Family members send me some money. I could survive in the surviviest sense on what I make alone, but I do get a lift to save a little, get dental cleanings, afford supplements, and things like that. (Goal: level up into an auntie.)

5. If there's a gifting occasion coming up and people ask what I would like, I answer truthfully (and usually with something super boring but useful). My friend Sally just sent me a year’s supply of water filters bc 108yo pipes are a little…pipey.

4. Treat money like it’s malleable.

1. I tirelessly negotiate bills from corporate healthcare and other megaconglomerates, often qualifying for forgiveness or discounts. Scripts here!

2. Leverage a high yield savings account. Unfair we can be paid for having money, but also unfair I can’t have cake, so moving on. (I tried several and like this one best.)

3. Work those cash back credit cards. I get 6% back on groceries here, 6% back on online purchases at a Bank of America card, Alaska Air Miles on the credit card I use to cover medical bills, and 2% back on my Citi whatever card.

4. Do I want privacy or money? Honestly, money. I just got a $67 check from Rakuten ($50 referral link). Apparently I’ve saved nearly $700 on Capital One Shopping, which just runs in the background and drops discount codes in for me. I don’t even shop that much (most of it was from business purchases.)

5. I ask for discounts wherever I possibly can, especially on non-insurance covered medical care. I also look for scholarships and financial aid options on anything I need. If I don’t see it, I ask if it could exist. I’m honest about my financial picture—no lies needed. Sometimes, I qualify.

6. If my insurance says it isn’t covered, I fight. Fax machines are involved. It’s not for the faint of heart, but it can be tens of thousands of dollars saved.

7. I made my Meatscon Pay-What-You-Want. That meant sickies who needed it free got it free. And sickies who could afford to throw down a few bucks could, too. (Thank you to everyone who downloaded it, shared it, and covered coffees!)

8. When I donate money (yes, I still do that!) I donate when there’s a donor match.

5. Spend money to save energy for more lucrative work.

1. My mom pays for a laundry service. It is the single best investment we have made in my health, including treatments at some of the leading medical centers. This sounds dire, but I really don’t think I could work at all if I had to get my laundry to a laundromat and back up to the third floor.

2. If it costs more to shop at the closest grocery store (or order DoorDash) so I don’t have to cook but it allows me to work and earn more, then I consider the tradeoffs. (Also: ask for a discount.)

3. There are apps I subscribe to, consultants I hire, and ergonomic comfy desk thingies I pay for to make work WORK. If it saves me some agency and I can make a bit more paying for it, worth the profit.

   What do you do to make the unworkable work for you?

   Leave a comment

Things I don’t do to survive as a sickie:

• Bilk my friends, family, or government. One things I’ve learned from years of working with non-profits: most qualified clients are resistant to taking help because they think “someone else needs it more”…and it literally means nothing except one less person gets helped. (You aren’t mooching. If you were, you wouldn’t feel guilty about it. There.)

• Coupon clip. Instead, I let the corporate overlords keep track of me and grab discount codes from sites like Rakuten ($50 referral link) or Capital One Shopping ($80 for both of us).

• Hide my financial struggle. I was raised that talking about money is rude. But that’s pretty much only ever shot me in the fallen-arches foot. It doesn’t serve me or anyone else to pretend life with ongoing medical care and a reduced working capacity is affordable.

• Cut every scrap of purchasable joy out of my life a la Dave Ramsey. I get the cheapest, tiniest drink at the coffeeshop, but I still get it. And tip a dollar. Constant pain plus too many other symptoms to list is a slog. I refuse to deny myself a few little treats to distract me from the awfulness. (But I do try to put my nice-to-haves on my registry before I splurge.)

• Compromise my health to work…sort of. This is a work in progress. I still get too excited about projects, overdo it, and give myself bad flares. I’ve come a long way—I do my damndest to turn meetings into emails, pace out work, respect my limits, and make work work for my illness—and I’m working on streamlining even more.

Look. Capitalism is a tough gig. For everyone.

It gets tougher when the “budget hacks” (cook your own food! walk to work! DIY!) are for people healthy/energetic/time-free enough to like…cook, walk, and DIY.

When there’s an avalanche of medical bills…it can be super tempting to just rob a dog salon. (I’ve considered it. Vetoed because prison won’t have low-histamine chicken.)

Still. PERSIST. Share these tips, tell us yours, and keep people living as well as possible.

Share

I wasn’t gonna mention the Meatscon again but…couldn’t resist. Getcha one!

Fill it out. And have a slightly better handle on your own personal ever-changing hellscape! (In all seriousness…it truly helps my nearest and dearest to know “where” I am on the suffer-scope.)

Reader Amy says I need my coffee fund and gift registry back on the books, so here it is—especially since I’m a February birthday!

I’ll always welcome a coffee at Venmo kira-stoops, any payment on the Meatscon, and my gift registry is here.

Til next time, sickettes!

• Get $100 when you open a new Ally high-yield (3.3%!) savings account. (Gives me $50, too.) No minimum deposit! This one’s my fave for the buckets feature.

• Get up to a $300 bonus (and then 6% back on groceries) with no-fee for the first year on this card with American Express. (I get $75.)

• Get ANOTHER $300 with a Capital One checking account. IDK, it’s a zero-fee checking account that I mostly opened to get $300 but why not? (I get $50.)

• Get $5 from Acorns…where I’ve accidentally made nearly $2k in less than a year despite eye-rolling at it for years? (Just do the lowest cheesiest tier.)

• Score an $100 REI gift card just for buying something not at REI on this card. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back).

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

If you’ve ever gaslit yourself with an “I’m fiiiiiine” while crawling to the gate like a dehydrated Smeagol, then allow me to gently rock your travel world. First, let’s start with Is it Time to Try An Airport Wheelchair? Because yes, yes it probably is.

And if it’s not, some wheelchair-free tips below! (But not all of them, bc srsly, wheelchair is the ultimate travel hack for disabled peeps and MEeps.)

1. Start with a good seat.

Book a seat to your preferences when you check out. (This may seem obvious, but airlines often bury the link in the checkout—use it!!) This may mean you pay a little more.

My rules:

1. Always pay a little extra. It’s $12-26 more on most flights to get premium seating, closer to the door with a little extra leg room. While this may sound extravagant, I don’t think you can put a price on your sanity. BOOK IT.

2. Always book a seat in an empty row. Because having a row to yourself means you get a window seat AND an aisle seat AND multiple ways to sprawl out.

3. While I *love* seeing the window views (and get motion sick if someone closes the shade) I go for the aisle seat on the left side of the plane…that lets my worse shoulder avoid jostles and my frequent bathroom trips leave other travelers undisturbed.

4. I never book the very first row (behind first class), because there’s no underseat storage. I haven’t a prayer of accessing the overhead bin throughout the flight for all my comfort items, so I need that seat in front of me’s understorage.

2. Then…ditch that seat at the gate.

Your beautiful whole row seat plan will probably fall apart by check-in. When you get to the gate, ask the agent if there’s any possibility of switching to a whole row near the front of the plane. (Just pass if it’s the first row.)

(This is where it really helps to arrive in the wheelchair, signaling that travel is already a trial for you. Plus, you usually have to talk to them anyway to coordinate the next agent to walk you down the jetway.)

Does asking sound scary to you? Then I dare you to do it. Chronic illness is one giant lesson in asking for what you need. Try it. You never have to see that agent again (probably.) The stakes could not be lower. Seriously.

Script: “I was wondering if there was any chance of moving my seat to an open row? No worries if not, it would just be appreciated!”

ALSO: be extra nice to gate agents. My brother is a gate agent. Travelers are nasty at the airport and gate agents take a good brunt. Most agents love a chance to make someone’s day better in a world where they’re usually juggling sheer chaos and disappointment. A little kindness goes a long, long way.

3. Check in EXACTLY 24 hours early to unlock upgrades.

I’ve never bothered checking in until right before flight…until this last trip. The instant the email appeared in my inbox, I almost ignored it, but by some divine intervention, Googled early check in. Supposedly, early check-in unlocks upgrade priority. Scoffing skeptically, I checked in within a few minutes of receiving the email because sure okay why not.

Lo and behold, who was tucking into a whole-row (okay, of one, but still) first class seat upgrade 23 hours later? Heyo.

From here on out, I’m setting an alarm 24 hours ahead of flight time and checking in as soon as I get that email.

4. Bring an emotional support human through security. No, really. Even if they aren’t flying.

Did you know your non-flying loved one can come with you to the gate? NEITHER DID I. My sister insisted I try this, it looked like a pain in the ass online (website said it could take 2 hours to get a gate pass WTF?), and I almost didn’t ask.

But I did. Because as usual, the lesson in chronic illness is, ask and ye shall receive. My Mom provided her Real ID (necessary), and in approximately three and a half minutes, she had a ticket to take me through security and hang out.

It’s called a companion pass or gate escort or gate pass or family escort, depending on the day. My Mom was my whatever-you-call-it, but she has a different last name than me and no one made us prove relations, so guessing you could recruit a non-related friend.

Hugely helpful—and I got an extra 90m with my Mom. The usual airport wheelchair pushers range from adequate to good, but nothing beats somebody close who will indulge your every preflight craving and extensive bathroom routine with maximum giggles.

And if there’s no one you feel you can trust to take you through the airport yet…THAT’S UNDERSTANDABLE. It took me years to work up the nerve to ask for help like this, from anyone, including said mother. And in some cases, to make the kinds of friends who’d say yes. I’ll get into community building soon, promise.

5. Flying solo? Here’s how to use the airport wheelchair on your own

Never swung an airport wheelchair? Here’s what you’re gonna do once you’ve booked it (see how here).

Ideally, have a good friend or family drop you off. If they can, have them grab the nearest wheelchair near the car (they’re everywhere) and get you to the gate, where you’ll tell them you need more wheelchairage.

If they want you to wait in the corral, CHECK INTO THE CORRAL FIRST, and then do a bathroom run (yes, you can ask them to take you). I hate the corral and always feel trapped there…it’s kind of a purgatory where they decide your fate on when the pusher comes to take you away. I’ve had good luck telling them I needed to get through security sooner because of bathroom issues (which at the time were…frequent, to say the least.)

If they haven’t gotten you out of there in 30 minutes, use the time to report them for an Americans With Disabilities Air Carrier Act violation. (With a polite warning, of course!) Don’t feel bad. They are breaking the law.

My hometown airport is tiny, so we can park super close and a friend or my partner can walk me to the gate. If your airport is not and you’re totally alone, my understanding is that if you call the airline they will bring the wheelchair to you. TBH, I haven’t tried this, but would love to hear if anyone has!

6. The airport wheelchair puts you in the fast lane

Look. There are a few perks to being disabled that IN NO WAY even remotely make up for the rest of the experience. But we take them where we can, because three perks is better than no perks.

Here’s one: if you’re on that heavy-ass adult stroller known as an airport wheelchair, then you get to go through the fast lane in security whether you have TSA PreCheck or not. And this can be a lifesaver when the hustle and bustle of security is an overwhelming claustrophobic nightmare.

If your pusher tries to take you through the regular line, they’re new. Sometimes, a more seasoned employee will redirect them. If they don’t, venture a “Hey! I think we’re allowed through the expedited lane?” And then smize bc of course you’re wearing a mask, right?

If you’ve looped in your family escort companion gate pass pusher, just head down the shortest express line. There may even be a little wheelchair sign on it. Someone will redirect you if you’re a) in the wrong spot and b) it remotely matters (which honestly, it usually doesn’t.)

7. You aren’t cargo—you get a bathroom and store stop with your free ride

The point of wheelchairs is to provide disabled people with an equal airport experience to everyone else. Meaning, yes, your wheelchair pusher will have no problem dropping you off at the bathroom and watching your stuff (multiple times, if needed), or cruising you into a little shop to buy snacks, magazines, and water for in flight.

One weird trick: Skip the Nalgene and buy a bottled water brand you tolerate. I used to keep it environmental and just refill, but airports are notorious for moldy water lines. You might not taste it, but you’ll feel it when you show up. If you haven’t identified a brand yet, watch out for waters that have weird added minerals.

8. Stuff your pockets (and bra, if you have one) with dollar bills

Is this an unfair disability tax? Yes. Do I tip pushers anyway? Also yes. Because brain fog, I usually can’t find my wallet, so I just stuff a bunch of dollars everywhere I can reach, including my bra.

9. Get this cushion—as a backrest, buttrest, whatever you need

The Klymit inflatable cushion is a sickie must. (NON-affiliate Amazon link for cheapness, but buy wherever suits your values.) It weighs virtually nothing, rolls up without much effort to the size of a small wallet, and realllllly rounds out everything from the odd shape of airline seats to a hard airline wheelchair.

It’s so cheap I own 5. (Partly bc I keep throwing mine down in nettles, oops.) I use mine in non-travel life ALL the time.

The airport may be a nightmare, but with a few tricks, we can at least turn it into an acceptable daydream.

The Full Fly Away With Me Lineup!

Flying with Fatigue Part Zero: Why Even Bother Traveling When You’re So Unwell? (Because we’re still ALIVE goddammit and sometimes you just want to hog a whole new bathroom) COMING SOON

Flying With Fatigue Part One: Maybe you CAN travel with a severe chronic illness...for free, even? You can’t travel like you used to—but you CAN hop a plane (probably)—here’s how.

Flying with Fatigue Part Two: Is it time to try an airport wheelchair? Here’s how. There’s a reason able-bodied people don’t walk to the airport, and it’s not that they “can’t”

Flying with Fatigue Part Four: How to Have A Good Time Away From Home When Your Body Hates It And it’s gonna hate it but there are ways to reduce that to a survivable level of dislike COMING SOON

Let’s get you out there if we can/you want. It’s hard, it won’t be like you used to, but I still think it’s very, very worth it.

What’s your in-airport hack?

Don’t hold out on us now. Maybe you know something I don’t?

Leave a comment

Make sure to pack a Meatscon!

I use mine as a handy-dandy screenshot. Confession: I can never remember what my numbers mean (brain fog!), so I keep it on my phone for quick reference. It jogs my memory into what usually works at times like these.

Your Meatscon Awaits

Substack is just the nicest.

In the spirit of letting good things happen, I gleefully accept decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts here.

PS. Because we could all use a break right now:

• Get $100 when you open a new Ally account using this link. This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)

Before trying it, you’re going to tell yourself you “can” still walk through the airport. You’re not going to consider that “can” is actually “can’t” if it causes the first three days of your trip to be bedbound screamy agony.

Then you’re going to cave, glide through the airport in so much less pain, and save the spoons you would have spent standing in line willing bloodflow to your head while some numbnuts tries to get bear spray through TSA (#MontanaProbs).

(But first: have you seen Part 1? In which I teach you to how to buy a plane ticket if by buy I mean hopefully get it for free.)

How to know when it’s time

Said with love: if you’ve read this far, it’s probably time.

I know. Traveling is hard on everyone. Yes, a mom getting three toddlers to Tulsa is going to feel kinda worn out the next day. Even jetsetters get jet lag on a big trip.

What the average traveler doesn’t get is full-body burning pain. They don’t risk permanently making their ME/CFS worse with a crash. They aren’t planning two or three solid days of nothing to recover post-flight.

In my experience, it’s time when:

1. You’re so lightheaded standing at the ticket counter you draw a blank on the “do you have any explosives” question. (BUT DO I??)

2. You want to cry when you see those cattle-call line separator things when there isn’t even a crowd because they add more steps to your rapidly dwindling limit.

3. You wake up on night one of your trip and your entire body is en fuego. It takes three days to get back to baseline.

4. You already know things like grocery stores mess you up, so you’ve been scared to travel at all and this is your first sickie trip.

5. You tried a trip and panicked when your numb, slow legs refused to walk faster on a tight connection, nightmare style.

6. The tradeoffs of embarrassment, inconvenience, and loss of autonomy are starting to look pretty good compared to the resulting misery of walking.

When you can but really can’t

In my active mountain town, normies pound out 10-mile hikes (or runs or bike rides or cross country skis) casually.

What they don’t do is hike or walk or ski to our airport, 10 miles from town.

They CAN. But also: they CAN’T. There are a lot of small reasons (traffic, bags, time), but the main one boils down to: it would just monumentally suck.

The difference is, no one thinks twice about not walking to the airport even when they can. That’s not culturally (*cough* ableistly) expected. Walking through the airport is expected, and that makes it harder to contemplate, even when it monumentally sucks for you.

I know it’s baffling to you to admit at your young age that you truly can’t walk through the airport anymore—because it was baffling to me—but in illness, baffling things are often true. The best thing we can do is accept and work with them.

But what will people think?

I’d love to say “who cares” but we’re all human, village is survival, we’re wired to care. So. Some reassurances:

1. Yeah, a few people are going to look at you funny, briefly. Then they’re going to fly to Croatia and forget you ever existed.

2. There are articles about able-bodied people using wheelchairs to get through security faster, so yes, someone might passingly think that’s you. Then they’re gonna pound an $8 mini-bag of Fritos and forget you exist.

3. As far as other people’s vocalized opinions, the worst thing to happen to me is: pity compliments. People recognize that a younger (even middle aged) person in a wheelchair is probably going through something. They just want to say something nice. Then they land in Puerto Vallarta and forget you exist.

I was acutely aware of the weight of other people’s opinions the first few times I airport wheelchair’d. Then, I huffed a rose garden with my Mom in Oregon, survived a hurricane in South Carolina, zoomed around in an Audi with my Dad in Denver, and forgot they existed.

The sooner you try it, the sooner you too can be a similarly hardened sickie who actually has the spoons to enjoy her (his/their) trip. Let’s get you booked.

How to even get a wheelchair

Here’s how it works: ya check some boxes as you buy your flight. On Alaska, you hit the tiny “request assistance” button right under your passenger info to open up the options above.

Bought your flight already? Log back in, and add “assistance” or “services” to your ticket. It takes maaaaaybe 27 seconds. Really can’t find it? Chat an agent.

I check “assistance through the airport” and “assistance down the jetway”. I do NOT check “aisle chair” or “assistance to transfer.” Aisle chairs are for people with the kinds of disabilities that prevent them walking 10-25 steps to their seat. It requires a special chair and handling. If you have SMA, ALS, para or quadriplegia, very severe ME/CFS, or any other inability to handle the last few steps, you need the aisle chair.

It’s okay if you don’t get it perfect on your request! You can just talk to the agents when you get there and they’ll fix it for you. The main thing is getting the gate assistance requested.

Next episode, we’ll talk about how to actually find the wheelchair in the airport, navigate security and the airport in a wheelchair, tip, and more—for now, just booking it is the right next step. Good job! Confetti cannons.

“I still hate this wheelchair idea. Is there any other way?”

VALID. And I won’t even say “internalized ableism is real” (even if it is) because it’s FINE to grieve things like “thoughtlessly navigating an airport.” And “not worrying about funny looks.” And “walking up and down the concourse gripping a Starbucks like a very important romcom boss bitch before she meets the sweet apple farmer who enables her sundressy soft girl life despite her losing her clearly superior income although that’s not really addressed just go with it okay.”

There are some alternatives—use the conveyor belt walkie thingies, take lots of breaks, look for the hard-to-spot elevators (they do exist!) to save on steps—but you’re shit outta luck if something’s out of service or the airport is doing big construction that reroutes you on a long walk.

I wish airports had scooters, but AFAIK, most don’t…and scootering with a lot of the same mental baggage as using a wheelchair, anyway. I still have not figured out how to catch a ride on one of the four wheeler thingies (anybody know?)

You CAN take your own mobility equipment. Both my Liberty Trike and my Glion Mini* are technically fly-able…but airlines frequently damage mobility equipment and these devices are rare enough they’ll probably introduce extra complication and admin, plus muscling them around at your destination. It’s almost worth it for the pure autonomy, but there are enough workarounds with an airport wheelchair (that I’ll teach you next time) that I haven’t used either.

Using a wheelchair at the airport only gets easier

Full confession: my first time wheelchairing while flying was hard. Emotionally, at least. Physically and mentally it saved a lot of much-needed spoons.

My Dad—who I ski patrolled with—teared up as he walked and I wheeled past the ski displays at the Denver airport on a medical trip. I cried frustrated sobs at the Airbnb, reading a shitty article about how a minority of doofnorfs were pretending to be disabled to cut security lines.

There’s been some blood-pressure-rising snags where I’ve gotten stranded at the wheelchair corral and then had to hustle through the airport, but I’ve never missed a flight.

Now, I just climb in and ride…but I’m still learning hacks, and have a brand new one to share next time.

In the end, my resistance to using an airport wheelchair was dramatically overblown…and also very human. If I can save you the agonizing trips it took for me to finally “break”…this is your sign to try the wheelchair.

Enjoy the ride—and your trip, for once.

*My BF says “Glion Mini” sounds like a sex toy to the uninitiated and context-unaware. Goodness. It’s a lightweight mobility scooter! While it’s no longer produced, here’s the nearest thing.

Have you tried a wheelchair? What’s holding you back?

Don’t hold out on us now. Maybe you know something I don’t?

Leave a comment

Make sure to pack a Meatscon!

I use mine as a handy-dandy screenshot. Confession: I can never remember what my numbers mean (brain fog!), so I keep it on my phone for quick reference. It jogs my memory into what usually works at times like these.

Your Meatscon Awaits

Substack is just the nicest.

In the spirit of letting good things happen, I gleefully accept decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts here.

PS. Because we could all use a break right now:

• Get $100 when you open a new Ally account using this link. (I’ve maxed out referrals, so nothing coming back to me, but enjoy!) This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)

Getting said ass on said plane is a multi-person, multi-stage effort, but: it happens. Come hell or high water. (Both of which came when Mom and I flew DIRECTLY INTO HURRICANE IAN—a story for another day, but spoiler, we lived.)

Let’s get something big out of the way: if travel isn’t happening for you right now, it’s not. I’m not saying if you try hard enough and believe in yourself, you can do it (or even that you should want to).

I’m saying if you think maybe you could but just aren’t seeing HOW, or if you just really need to get to far-off medical care, I’ll show you how I personally pull this pert-near impossible stunt off.

Why fly?

I can drive short distances, but even as a passenger, I can’t be in a car more than twenty minutes without major payback. The vibrations and jostles irritate my neck stability into wrap-around migraines. And then I get carsick. And need a bathroom, like, NOW.

Flying? Not so bad. Even with all the pain-in-the-ass parts that make non-disabled peeps grind their teeth to the gums.

That’s why I have a private jet. (Not really! Just wondering if anyone actually reads these. Comment about yours if you did!)

Part One: Feeb Flying—for free!

First: Get you an air miles credit card.

Do it for the perks.

My Alaska Air Signature Visa via Bank of America gets me a mile for every dollar spent, a free checked bag for every passenger on your ticket on every flight, and an annual $99 companion fare (that I always forget to use).

Whenever you sign up, you’ll automatically get 40k or so preloaded miles. The BEST way to sign up for one is actually in-flight, because they load on even more miles for the promotion. (And if you’re a microbusiness? Yes, you can have a Business Alaska and rack up miles that way!)

Nope, this isn’t an ad. (Although YO ALASKA AIR WANNA SPONSOR A FEEB?) There’s a $95 annual fee, but for me, it’s always paid for itself in checked bags.

I pay my medical bills through my air miles credit card.

Which I then pay off with a Montana Medical Savings Account. Tax savings AND air miles AND all my medical expenses in one handy ledger! I’d be smug about this financial finesse, except it’s because I’m too disorganized to track any other way.

My $10k+ annual spend on medical bills (including supplements) usually earns me 10k+ miles…(so no, haters, it’s not FREE-free.)

This racks up enough free miles for a round trip every other year, AND:

Miles tickets are usually more flexible and refundable.

Last minute plane tickets in dollars are expensive; last minute plane REFUNDABLE plane tickets in dollars, even more so.

When you “buy” tickets in miles, though, they’re usually much cheaper (even just considering value, since obviously you aren’t spending real dollars)—especially last minute—and easier to change/refund. So if you’re hugging the toilet come fly-home day, you can either just buy a whole new ticket or change the one you have.

Every Alaska miles ticket is refundable (and many other airlines’ are, too).

Miles get you on first class, cheap.

With miles, you can also more easily “afford” first class tickets when needed. (Again, talking value vs. dollars, but you know what I mean.)

And yes, I said needed. We’ll talk more about this when I write about surviving the airport and flights. For now, just go with it.

Second: Stand up (metaphorically) for disabled travel rights.

I report violations of the Americans With Disabilities Air Carrier Act.

Fact: I have never once flown and NOT had my rights violated. Just learned a new hack I’ll share next post that allowed my first non-violating full trip!

If you fly disabled, you are likely to have your rights flaunted at some point—whether you know it or not. Have I read the entirety of the Air Carrier Access Act? Yep. And I won’t make you, because there are three biggies that comprise most cases in our patient population:

1. The airline damages your wheelchair/rollator/scooter.

2. The wheelchair contracting agency leaves you stranded in an “airport wheelchair” (basically an adult stroller that you can’t move under your own power) for more than 30 minutes.

3. The agency running the “wheelchair corral” doesn’t give you adequate time to get to the gate and on the plane.

For me, I’ve been stranded in the “wheelchair corral” sweating bullets for an hour…then been mall-walking-speed shoved through the airport, not making it in time for disabled boarding.

This isn’t annoying. It’s illegal.

Airlines apologize with miles and gift certificates.

Next week, I’ll talk about how to avoid these rights violations (not that they’re your fault). For now, know that airlines don’t want you reporting their lawlessness further up the chain to the Department of Transportation, who will fine the living bejeezass out of them.

So when you are violated and you politely bring that up with the airline later, you do three things:

1. You stand up for better (aka, equal) treatment of disabled passengers.

2. You get hush money. (Not really. You can still report them if you want.) This usually comes in the form of airline miles or a gift card for travel.

3. You give the airlines a little grace to sort themselves out before they REALLY get the stick.

It’s best to have EVERYONE in your flying party report the violation. More voices, more recompense.

In 2024, American Airlines (for example) was fined 50 million dollars for numerous violations of the Air Carrier Access Act. Kicking you $200 to make up for dehumanizing you is nothing to them. I feel zero guilt, and just save it for next year’s trip.

Third: When SHTF, stay calm, and invoice your carry-on.

Well, checked bag, but it wasn’t as cute in the headline.

Let’s back up. Airlines screw up for normies too. They delay flights, they lose bags, they cancel flights altogether. ALL. THE. TIME.

And this can retroactively pay for your trip, cover a cancellation, or at least get you freebies.

Two ways to deal:

1. I carry travel insurance—and yes, I’ve needed to use it. If you aren’t flying on miles, I recommend it.

2. Hold airlines accountable. Erika Kulkburg breaks down all the benefits of getting money back for lost or delayed bags, delayed flights, getting bumped, and other annoyances. The airlines are responsible for covering these—but only if you ask.

I repeat: ONLY IF YOU ASK. Which sometimes just makes it easier to use insurance later—it can be hard to find agents, phone lines are delayed, and sometimes you’re just too sick.

But for example, I frequently had flight delays that left me stranded

in Salt Lake City. Every time, I visited an agent for a free hotel voucher for overnight (as instructed). But I also asked for more, getting gift certificates to airline eateries, compensation for toiletries, etc. ASK if you can. Invoice insurance if you can’t.

Lil tip: if Alaska takes more than 20 minutes to get your bag, you’re entitled to a $25 gift certificate or 2500 miles. But, you have to ask.

Bonus: Standby, Off Days, and Just Cheaping Out!

It can’t always be free, but it can be cheap. Here’s four more ways to swing inexpensive disabled travel:

1. Fly standby on employee benefits. My brother-from-another-mother is a flight attendant of over a decade…so if I really need a free ticket? All mine. I actually used guest passes a ton in my pre-disabled days. If you have some flexibility, this could still work, although I’ve personally elected to not fly standby anymore.

2. Wednesdays and Saturdays. Fewer crowds, cheaper prices. Truly, the only days to fly—and many of us, for better or worse, have the flexibility to do so.

3. Watch for price drops—after you buy! Depends on the airline (or booking service) but some will honor a price guarantee if you contact them.

Future Flying with Fatigue posts coming!

Flying with Fatigue Part Zero: Why Even Bother Traveling When You’re So Unwell? (Because we’re still ALIVE goddammit and sometimes you just want to hog a whole new bathroom)

Flying with Fatigue Part Two: Is it time to try an airport wheelchair? Here’s how. There’s a reason able-bodied people don’t walk to the airport, and it’s not that they “can’t”

Flying with Fatigue Part Three: Surviving Airports and Planes (It Doesn’t Have to be As Hard As You Think) Including a new tip that took me five years of Feeb Flying to figure out—and breaks everything you thought you knew about the rules

Flying with Fatigue Part Three: How to Have A Good Time Away From Home When Your Body Hates It And it’s gonna hate it but there are ways to reduce that to a survivable level of dislike

Let’s get you out there if we can/you want. It’s hard, it won’t be like you used to, but I still think it’s very, very worth it.

What’s your travel secret?

Don’t hold out on us now. Maybe you know something I don’t?

Leave a comment

Make sure to pack a Meatscon!

I use mine as a handy-dandy screenshot. Confession: I can never remember what my numbers mean (brain fog!), so I keep it on my phone for quick reference. It jogs my memory into what usually works at times like these.

Your Meatscon Awaits

Substack is just the nicest.

In the spirit of letting good things happen, I gleefully accept decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts here.

PS. Because we could all use a break right now:

• Get $100 when you open a new Ally account using this link. (I’ve maxed out referrals, so nothing coming back to me, but enjoy!) This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)

I worked in a windowless leaking basement, scooching my desk under the stairs to capture scraps of skylight beams. I cowered when our team-building exercises hosted homophobic comedy shows. I sank into my seat as the owners forced us to watch pole-dancing lessons at a company retreat.

I hyperfocused, so I “wasn’t billable enough.” I had high standards (and was female), so I was “condescending and abrasive.” I wanted to go HOME after work, not drinking with my office mates. “Not a team player!”

My work won Addys. They put the male copywriter’s name on them.

I shriveled as a human being. I felt like a complete failure as an adult. I couldn’t do a “dream job.” What way forward could there possibly be?

*

We never have all the facts in the here and now. As Steve Jobs put it, “You can only connect the dots going backwards.”

My business bootcamp leader Karen says, “More will be revealed.”

The present moment, no matter how seemingly clear, is still a mystery.

*

Flagging hard over Christmas break 2007, I read a get-rich-quick book about freelance copywriting.

At 26, it felt like a blueprint to a life I might just thrive in. Or at least an escape hatch from the oppressing feeling that I wasn’t going to make it in the one I had.

*

My boss gave me an ultimatum: I could either change my “negative personality” or clean out my desk.

She seemed exasperated when I picked the latter. “You’d be great at freelance,” she snapped, sarcastically.

I didn’t pick up on the sarcasm. I actually beamed. My first real compliment from her.

I was great at freelance. I loved the work. The clients loved me.

Including that same agency, who wound up hiring me back for freelance and paying me more than my old salary while I also worked for their competitors.

This time, when we won awards and bigger clients, my name was in the credits.

I became a human being once more. I felt like an adult. And the way forward was wide open with possibilities.

*

More was revealed, in time.

Mainly, I got a professional autism evaluation. That explained my clashes with a traditional workplace (and an earnest inability to spot a bluff or pick up on subtle sarcasm.) It cleaned up my heartbreak over “failing” at “real life.”

Decades later, an old colleague clued me in that maybe I wasn’t bad at jobs…maybe that work place had just been especially toxic. Somehow, I’d never considered that. Another “personal failure” that made more sense as just…an impossible task.

*

But when I was so miserable I was unshowered at my basement desk, praying for the whole thing to just cave in already, I didn’t have all the facts.

All I had was a clear inability to continue in the direction I was going—the only direction I knew existed. Until something changed, and a new path opened.

*

With my big fish small town setup, work fire-hosed in for 16 and a half years…so much so that I AVOIDED new clients and had to be dragged into most new projects.

Then, for the past six months, my proposals bombed. Half my pleas to people who I considered ride or die colleagues went unanswered. My year-to-date profits keeled down to 4% of usual. FOUR PERCENT.

I’d never felt so useless, old, irrelevant, and hopeless, in all my solopreneur years.

My boss lady buds started cracking earlier this month—they’re struggling, too. The branches I shook said they were laying people off, scrounging for work themselves. My sister just lost her tech gig this week over government nonsense.*

I read back over my proposal rejections. People weren’t saying they don’t want to hire me. They were saying, I can’t. In this economy?

*

I started my business in a Recession, with $600 from selling my mountain bike. I had to rebuild the whole thing five years in after a brief fling with having a real job again.

I revamped operations when I became disabled with limitations that felt impossible to work around. (They weren’t impossible. Just hard.)

I made my business work during the scariest parts of the pandemic, when absolutely no one gave a flying fart about a brand strategy because everyone was suddenly a mask factory, duh.

Now, I’m restarting. Again. In whatever this is. (Name idea: the Desperation?)

It’s different this time. The stakes are a lot higher. My roots run deep here and my health is squirrelly. I anticipate everything getting harder and more expensive, for everyone. I don’t expect it to lighten up, anytime soon.

But sickies don’t just give up. We get more creative. We accept what needs accepting, we fight what needs fighting, and we jury-rig the rest.

If there’s one thing I have a fair bit of experience with, it’s making a business profitable in truly shit circumstances.

So I’ve fought harder to shock my business back to life than I did STARTING it. I’ve opened to pivots I hadn’t considered. I’ve done things I didn’t have the guts or vulnerability to do before. I’ve gone out on limbs. (Some of them snapped clean off; some led to unexpected insights and possible contracts.) There are more leaps of faith and 20 seconds of insane courage moments ahead, and I’ll be sharing them here.

Sprigs of hope are starting to sprout, just in the past few days—little consults, almost-done-deals, more meetings, a conference next week that I’m somehow pretzeling my disabled, immunocompromised ass into (with a shit-ton of planning and support).

In the past week, I’ve gone from completely friggen dead for an unprecedented six months (that I survived thanks to a robust-enough 2024) to “I think I might land an avalanche of work that I need four Kiras to do.” Whoops. We’ll figure it out.

As Karen (the business coach) says, “If you’re going down the main path, it’s PAVED. Everybody else has already gone that way. We’re on a rarer course…so our only option is forging the weedy hard-to-see route.”

Steve Jobs also said, “you have to trust that the dots will somehow connect in your future.”

More will be revealed.

Let’s go find it.

-

(Sidenote: any tech peeps here have an intro for my sis? She’s a beast of a machine Product Owner/Product Manager and she puts her heart and lots of oomph into her work.)

Anybody know my dream client?

If there’s one thing I’ve learned in this latest surprise famine, it’s that personal connections count the most, by a million.

I’ve probably shaken out enough leads short-term, but long term…

I’d love to meet a midsize (25-250 employees) do-gooder company or non-profit crying for a rebrand and hankering for copy support on ongoing launches and initiatives.

Alternatively, I’d love an intro to a social-good-oriented, high-performing ad agency who needs brand strategy and evergreen website copywriting for their clients.

Thank you, all!

How’s this economy affecting you and your livelihood?

Pours us both a shot of something strong—and yes, answers from folks on disability absolutely belong here.

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Meatscons made me a hundredaire mwuah ha ha ha!

That’s another path I didn’t see coming, but if you got one…please review it! If you downloaded it for free and got some mileage out of it—gift one to a sickie friend!

Your Meatscon Awaits

Substack is just the nicest.

In the spirit of letting good things happen, I gleefully accept decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts here.

PS. Because we could all use a break right now:

• Get $100 when you open a new Ally account using this link. (I’ve maxed out referrals, so nothing coming back to me, but enjoy!) This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)

Here’s me Friday, learning to play Smoke on the Water with Jim Rendle of Sentinel Guitars. (I look stoned. I wasn’t! Just feeling the Deep Purple.)

In 2015, Jim’s house burned down. Outside, looking in through the window, he watched his Seagull acoustic and Gretsch Honey Dipper resonator disappear in flames.

Instead of replacing these babies, he made new ones—easier ones. Three strings. Nylon, easy on the fingers. Bodies made from old cigar boxes. Light. Simple. He wanted others to learn. “You’re next,” he said, in a thick British brogue, when I rollatored past his booth.

I’m not a guitar player, but I shakily had the initial chords down in just a few minutes.

When Jim’s life burned down, he built something simpler and more creative in its ashes, and brought others into it.

He’s one of us.

Our lives have burned down. And rebuilding under that traditional five-string framework (full time employment! productivity! balancing fitness, friends, and family!) doesn’t work for us. It’s too hard to play.

It doesn’t feel like “play” when the stakes are so huge—where we will live, what we will eat, how we will receive basic medical care and an ounce of human dignity. But the only way to survive, I’ve found, is by playing, in a sense.

Playing with the rules. Not by the rules. (Who says guitars have to have five strings and fancy curvy bodies?)

The basic tenets are simple. They are not easy. I recently sat down with Dr. Zeest Khan, who had to pause her medical career due to severe Long Covid. She, too, had to learn to play with the rules to survive.

Zeest artfully framed my migrained rambles about money and community and microbusiness into a coherent podcast: a few big nudges into everything you’ve been avoiding or a big affirmation for tackling the things you have, depending on where you are on this stairway to hell.

This weekend, we share it with you, in hopes it will help you play with the rules.

Okay, that intro was longer than a recipe blog—SORRY. Jim was too inspiring not to share. Let’s get to the MEAT!

Listen to our pod on Zeest’s post:

Long Covid, MD

Cut Yourself a Break: Money, Disability, and Asking for Help Without Shame

Podcast Episode #48 with Kira Stoops of Imperfect Working Order…

Read more

a year ago · 12 likes · Dr. Zeest Khan

Or on Apple podcasts:

It’s just 20 minutes. I drop multiple f-bombs in the aforementioned rodent-princess voice. Truly, what’s not to love?

We discussed:

• The unseen cost of being sick, and how safety nets fall apart faster than Shein

• How our own self-concepts (bolstered by societal expectations) make asking for help SO HARD

• Tips for finding secret money stashes ranging from hospital forgiveness to sickie grants

• How to wield microbusiness when a full time career is impossible and the disability judge says no

• Getting a mobility aid that actually helps (you can see my rollator handle in the pic above…and yes the guy at the leather-working booth clocked my upgraded handles)

• Real friendships, self-built community, and how you need both

Listen to the full episode on your favorite player, and drop a comment to let us know what you think! And PLEASE share your favorite sickie survival hacks and turning points.

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If you love to listen to podcasts, I highly recommend subscribing to the Long Covid, MD. Zeest puts a lot of thought into these conversations, finding fascinating interviewees and making the ‘casts brain-fog friendly.

Long Covid, MD

Dr Zeest Khan, a physician with Long Covid, simplifies our complex healthcare system, explores science-based treatment options, and learns to navigate life with chronic illness.

By Dr. Zeest Khan

For the newbies—you’ve got your Meatscon, yes?

Like spoons, but MEATIER. Does that make sense? No. Just go with it.

Your Meatscon Awaits

Substack is just the nicest.

In the spirit of letting good things happen, I gleefully accept decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts are here.

PS. Take the money, sickaroos:

• Get $100 when you open a new Ally account using this link. (I’ve maxed out referrals, so nothing coming back to me, but enjoy!) This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

That shit ends today.

(Technically it ended two weeks ago, when we kicked off this series—Tip 1 here, Tip 2 here!)

But this shit also ends today because three tips is plenty. For now.

Who died and made me queen of doctor appointments?

Technically no one, but also: almost me? I’ve plummeted down the proverbial spiral staircase of bad appointments since I was 2, so that’s 40 years of…something.

Now, my appointments are respectful, useful, fruitful, and actually needle-moving (as much as they can be for a disease with no cure where I’ve exhausted most options.)

How? Because I record the appointments, I know how to say no without bruising any egos, AND I…

3. Get to the good doctors faster.

If you just rolled your eyes so hard they sprained, valid. I know. YOU’VE TRIED getting to the gooders. Probably most of the suggestions below. (But if nothing else, give it a skim to make sure *I* haven’t missed an idea.)

Why? Because it’s worth it. ONE telehealth with my ME/CFS doctor is worth at least five different appointments with local clinicians trying to piecemeal together treatments and tests. It’s one of the ONLY times my provider educates me instead of me trying to secretly educate them.

First, find ‘em.

Dig them up through social media and their connections:

1. Online patient groups for rock stars. Patient groups on Facebook, Reddit, and disease-specific forums like Health Rising usually talk up their disease’s “rock star” doctors—hyper-specialized clinicians with unique tools, skillsets, and experience.

2. These patient groups also point you to local finds—even when they aren’t local! I found my amazing PT by posting in a regional group thinking I’d need to travel out of state. Turns out, a hypermobility-focused PT was moving right to my town.

3. Real-life local patient contacts. I’ve met fellow patients in patient groups, posts on my local town “Ask Anything” page, here on Substack, and even random friends where neither of us knew we were ill until one of us dropped the well act.

4. Your current doctors. Once you crack into ONE doctor who “gets it,” you can get their referrals for other specialists, aka their like-minded friends.

Search for them in professional directories:

Depends on your personal disease roster, obviously, but look for a governing body of sorts that might have a “find a practitioner” section.

My fave: the Ehlers Danlos Society Professionals Directory: I have hEDS type III, not the genetic sort, and it’s not even my worst symptom, but these docs tend to know our disease cluster, including the comorbidities beyond EDS.

You can also get hyperspecific and look for modalities you know work well for you such as Somatic Experiencing, NOAIMT, or Functional Medicine—just as examples.

Not every doctor who’s on board will be listed. Various reasons…sometimes they’re missed, sometimes they don’t keep up certifications, whatever. If you see one close but not close enough, reach out and ask if they know anyone in your area.

Look for PAs (especially for popular docs):

Neurosurgeons, gastroenterologists, gynecologists, and other specialized providers are pressured to work at the top of their fields—performing spinal fusions, excising gallbladders, birthing babies, and all the other things you want someone who pretty much does that all week to do.

They usually don’t have time to sit for a long, educational appointment with a complex patient—and that’s okay, because their PAs (physician assistants) do.

Physician assistants can do nearly everything a physician can (including ordering tests and prescribing medication except Class 1 Controlled Substances). Plus, the bigwig doctor still consults on your case while your PA runs interference.

In my experience, PAs are often more patient, more personally helpful, more experimentation-curious and just generally more chronic-illness friendly than the busy leading physicians they work under. Not always true, but don’t feel like you’re getting “less” with a PA.

Another good bet? Reader Katherine Ashmore recommends nurse practitioners!

Second, review ‘em—the right way.

It’s worth overlooking two and three star ratings when you’re vetting. (!) Here’s why:

If you READ the reviews (and you should), you’ll find many doctors are reviewed for things their office staff botched or insurance squabbles. While it’s helpful to know if the staff is sociopathic (happens), these low reviews are not necessarily reflective of the doctors themselves.

And, timestamp matters. My own “best” doctor has a 3 star rating thanks to a one-star rant from when a patient felt she was telling her that her illness was in her head. Bruh, but it was late last decade. He’s grown since then (not to mention gotten Long Covid himself, so how’s that for empathy?)

And in the other camp, sometimes you need to raise an eyebrow at five star reviews—because did those people have your kinds of issues? A “five star” PT focused on elite athletes, for instance, deserves a skeptical look. Search reviews for your disease keywords.

Third, book ‘em. Now.

Most great doctors are backed up for months (at least for new patients). Book them now. You can always cancel or postpone if it doesn’t fit four months from now.

Fourth, afford ‘em.

A staggering number of Long Covid and ME/CFS doctors fled insurance in the last few years. The rest are out of state, which your insurance may or may not cover.

Gah. But:

1. You can fight insurance on the out-of-state thing, potentially, if you can prove no other doctor locally can provide adequate care.

2. Your insurance may still pay “out of network” benefits if you submit a Superbill. I always submit. It’s often a dismal return, but usually that’s better than the $0 you get if you don’t try.

3. Some, but not all, take on a limited number of patients in need. ASK.

4. Use the portals. (Responsibly.) You can ask doctors questions between appointments, if they’re simple and straightforward…which can save pricey appointments. Note: some off-insurance doctors charge for complex questions.

If you haven’t worked with a Long Covid, ME/CFS, or your-diseased-highly-specialized provider yet, it’s worth investing in one or two appointments. You’ll cover years worth of past appointments and probably get enough suggestions for 6 months.

And even if you don’t work with a bigwig (it’s fine, hasn’t cured me), you want good docs on your side for things like ordering disability placards, getting notes for work, adjusting meds, and all that jazz.

If you’ve never had a gooder, you might not realize what an uphill battle you’ve been fighting ‘til them.

To all the best doctor appointments! And onto new topics, pronto presto.

A little footnote

All the hot tips in the world can’t MAKE your doctors’ appointments the best. If it bombs, don’t beat yourself up. (But do steal a bunch of cotton balls bc viva la resistance.)

Please tell the class: how did you find your best medical providers?

Guessing it probably wasn’t a highway billboard, but prove me wrong.

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I think we’re all Meatscon’ed out (yes?) but here’s a last link if you keep missing it!

Like spoons, but MEATIER. Wait, that makes no sense.

Your Meatscon Awaits

Substack is just the nicest.

In the spirit of letting good things happen, I gleefully accept decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts are here.

PS. Take the money, sickaroos:

• Get $100 when you open a new Ally account using this link. (I’ve maxed out referrals, so nothing coming back to me, but enjoy!) This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)

Share Imperfect Working Order

My guess is if you’re in Mystery Disease Land (aka, ME/CFS, Long Covid, anything other than male pattern baldness and erectile dysfunction), then the bulk of those appointments bombed.

But I’ll check my biases.

Hopefully this doesn’t make me look like a goober later.

Anyway, if you’ve been having focused, empathetic, needle-moving appointments, please skip STRAIGHT to the comments to fill us in on how. (No cap, we need to know! Also, did I just try to say “no cap” as a forty-something? Heh.)

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For the rest of us huddled masses…let’s get on with the tips. (Last week’s is here, and she’s a banger.)

Sneak preview of now: appointments don’t cure me, but they also don’t send me reeling toward ativan and/or rage crimes.

Last week, I had a doctor visit where I was listened to, things were explained to me clearly, she got the tests and procedures ordered I needed, and it was all over telehealth…in 15 minutes.

This is what I want for you (if you don’t have it already), because it’s what I wanted for past me.

We’re on tip 2 of 3—one more coming next week!

2. Master the aggravating (but necessary) art of saying no... without saying no.

Do I want this to be our reality—that we can’t just say a DIRECT no to all doctors? Hard no. But it is. So let me give it to you straight: some doctors can get their MeUndies in a bunch if you’re “non-compliant,” and that shit goes on your chart. Forever. Which means you run the very real risk of getting judged by future doctors who haven’t even met you yet…for something you didn’t do wrong.

But patients *need* to be able to safely decline procedures, tests, and medications. I’m thinking specifically of the gyno who told me I “just” had to get pregnant to clear up that endometriosis (despite my then-lack of partner and/or any desire or means to have kids). Or the GI who wanted to “just” yeet my gallbladder (and now that’s been proven to not be the bestest idea for IBS.) Or…we digress.

So first of all? Know that you CAN say no. Too many patients suffer through following doctor’s orders that don’t work for them at all because they don’t know—you don’t have to.

In fact, good doctors encourage your input. Great ones trust your instincts (and gently challenge them). These are the ones we want to support and stay in business. With them, it’s easy: just say no. And done. This post isn’t for working with docs who get it.

This post is for when you have to find a way to say no to not-so-great doctors (rife in small towns and underserved markets) without damaging consequences. This requires subtlety, diplomacy, and truth-slanting, none of which come remotely naturally to me.

You neither?

Yeah, this sucks. And while I’m usually all for challenging the status quo, you probably need tests, meds, and procedures more than a medical revolt right now. When you’re better, you can write that doctor the scathing review you’re surely plotting. I’ll help.

In the meantime, let’s teach you how to be an ever-so-slightly manipulative minx.

Step 1: Before we begin: put yourself in your doctor’s shoes.

Damn! You look hot in a lab coat.

Okay, so: Doctor You threw yourself into debt to go to medical school. Which took over 10 years of higher ed. You memorized piles of Latin names for every body part, worked ridiculous shifts to learn to do medicine in your sleep, and jumped through a million hoops in the medical system to treat patients. At one point, you just wanted to help people. And usually, you can.

And then these intangible diseases came along. They look an awful lot like anxiety. These sickies seem suspiciously smart, functional, and charming. There’s nothing wrong with them that you can see on routine labs…yet they seem obsessed with their health and genuinely distressed.

You feel a little puzzled, but you pull from over a decade of medical school to offer a suggestion, a thought, or a diagnosis.

Step 2: Okay, now we’re back in your shoes again—and you hate your doctor’s idea. The first thing out of your mouth? “Yes.” (Trust me.)

To begin, always positively acknowledge the offering. Scripts to use:

“Yes, that’s a good thought.”

“Yes, that’s an interesting angle.”

“Yes, I’ve heard that recommendation before.”

“Yes, I can see why you’d suggest that.”

“Yes, I’ve tried that before.”

“Yes, I’ve been thinking about that too.”

“Yes, that’s a new one.”

We’re starting with yes…even though we’re going to say no. Why? Because this means your doctor feels heard and respected for the professional input they worked so hard to be able to give. This makes sure they aren’t hearing your no from a place of defensiveness and frustration—and they know you aren’t giving it from one, either.

Step 3: Onto the no’s! Without any actual “no.” How? Make it a question.

Now that you’ve yesed, pick the one that fits:

1. Ask for more information. You can use this as a gentle way to bring up a major concern that your doctor may have missed. (Or just stall.) “So how does that work considering my gastroparesis?” “Is there any risk, given my MCAS?” “I’m curious why you think that’s the best treatment since I’ve had anaphylaxis following sulfa drugs before?” “What’s the efficacy rate on that one in patients like me?” “What kind of results are you seeing from that in your other Ehlers Danlos patients?” Making it a question allows your doctor to still be the expert.

2. Ask about alternatives. “Yes, great idea, and I’m curious what some of the other options might be?” “Yes, I’ve seen commercials for that, and I wondered what else might work similarly?” “Yes, I’ve heard of that, but I wonder if there are any conservative approaches we could try first?” (Doctors LOVE conservative approaches.) This shows you’re solution-minded, even if their first suggestion isn’t the right one. It also gives you options you might want to say yes to.

3. Ask about waiting. Unless it’s an emergency, you don’t have to decide anything today. Most doctors are a fan of “wait and see,” so you’re speaking their language here. “Yes, I hear a lot of patients really benefit from that. I wonder if we might hold off on adding anything until after we know I’m tolerating this new diet change a little better?” “Yes, thank you for offering to do that today, but I’d better check my calendar and book when I’m less rushed.” It doesn’t discount the doctor’s idea—it just defers it. Which can be really handy if you ever DO want to come back to it, after all.

4. Ask what advice they would give if you were their own spouse/kid. Sometimes it feels like doctors are so busy, they miss the real human in front of them. I’ve found this question usually brings them to a softer, more thoughtful place. It helps if you share an emotional reason you’re balking. “Yes, that seems wise. It really scares me to consider biologics though. I wonder about conservative approaches or even just waiting. If I were your daughter, what would you say?”

5. Ask about other health problems. When the other tactics aren’t enough or aren’t worth the discussion, pull focus to another symptom cluster. “Yes, I’m thinking about that, and I’m so distracted by this other symptom, I wonder if we might talk about that?” “Yes, I’ll consider that. I’m more worried about migraines right now, could we discuss those?”

Last resort: Agree to everything, do nothing, and bail.

If the appointment truly tanks, and you just need to get something out of it—a disability letter, a prescription or referral written, a procedure booked—agree to everything and “reconsider” later.

You don’t have to fill a prescription just because they’ve already called the pharmacy. You can cancel the procedure they booked for you. No one will make you follow up with the 2-star neurologist. Get what you need today and find a new doctor later.

Look. I KNOW. The inanity chaps my rump too.

I’m very sad I’ve had to use my energy on being anything other than the straight-shooting Nelly Bly wannabe whistleblower I fancy myself to be.

But I’m also very glad I’ve gotten to a place where even basic doctors will fill pain-in-the-ass requests without blinking because I’ve bankrolled goodwill and respect.

So while all this sucks, the good news is, it can raise your standard of care…which might raise your standard of living. And that matters way more than one slightly nefarious appointment. You can do a mitzvah later to make up for it if you feel so inclined.

(Hilarious sidenote: my boyfriend edited this and reminded me that you can “be a mensch” or “do a mitzvah” but “do a mensch” was probably not what I intended. Thanks, brain fog!)

Tip #3 incoming next week! STAY TUNED.

A little footnote

These tips should make appointments better. But ya know…there’s a lot involved.

So if you do everything “right” and your appointment is still a straight Texas goat rodeo, blame literally everything else. The next one will be a gooder!

Dish in the comments please: Ever said no in an appointment (with or without saying no)? How did it go?

No? Dare you to try it—use the scripts!

In the meantime: Wish you had? What happened when you didn’t?

Or…what other hack changed your appointment game for the better?

Leave a comment

No one’s bought a Meatscon in a minute so one last shill before I quit shilling!

This is my favorite review yet! Thank you so much, Lailah.

Already bought one? Please review it! A lot of people haven’t downloaded digital products and I want them to see it’s a good move.

Already reviewed it? Good grief, I adore all five of you.

Your Meatscon Awaits

Bless Substack for being so aggressively kind.

The other week, I left my coffee fund off. A reader IMMEDIATELY asked me to put it back. Aw. In the spirit of letting good things happen, I welcome decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts are here.

PS. Take the money, le sickie:

• Get $100 when you open a new Ally account using this link. (I’ve maxed out referrals, so nothing coming back to me, but enjoy!) This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.

• Get a $200 bonus (and then up to 3% cash back forever) on my no-fee card with American Express with this link. (I get $75, but I’d recommend them anyway.)

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

Share Imperfect Working Order

~zenful pause~

Okay, now that the goody-two-slippers are gone, BUONGIORNO, fellow sickies burnt like a bad perm by even worse appointments. That should be about 98% of us.

(And you know who really takes it in the teeth? Patients who were once doctors themselves, woof. I’m not saying doctors are terrible. I’m saying doctor’s appointments in an insurance model for a malady with very little research can be.)

These are the appointments I used to have: humiliating.

One doctor told me my severe bloat was “just middle age.” Several wrote “drug seeking behavior” in my chart. I started getting so defensive in doctor’s appointments that I once stood between the doctor and the door, for an hour, ensuring he couldn’t leave before I made my case and demanded tests in rapid-fire speech.

The worse the appointments got (and they do get worse as you exhaust the low-hanging fruit), the harder I tried. MEeps, I organized entire binders of medical tests. With tabs. Who even was I?

My try-hards backfired spectacularly. At best, I got hot potato’d in circles. At worst, I succumbed to rage-tears mid-appointment. After appointments, I screamed in my car a LOT. I was exhausted, broke, and digging myself in deeper.

These are the appointments I have now: organized, useful, positive, and productive—even with regular local PCPs.

The only external thing that’s changed is that doctors have more experience with wonky diseases due to Long Covid. Internally, though, the way I approach appointments is vastly different.

Appointments that used to stab my hope balloons now add extra helium. My doctors listen, we work together on forward strategies LIKE GROWN-UPS, and we make the most of whatever time we get.

I don’t roll out feeling like I might be cured. That’s overselling it. But I do leave feeling like there are options, ideas, and especially: empathy.

Want in? You might not even need to change doctors—just strategies. Three big tips incoming. I’ll break them out over a few newsletters to avoid overwhelm!

Trick #1: Record your appointments. No, really.

I cannot sing the praises of this trick enough. I use my phone voice memos to record real-life appointments and Zoom (plus Fathom) to record telehealths. Why do this?

1. Give yourself the gift of unclenching more in the appointment. Just getting to an appointment wears me out so much that by the time doc is talking, it’s tanking my energy to appear non-comatose. Recording takes the pressure off, because it’s not my one and only shot at “hearing” everything anymore.

2. Save time in future appointments. I have meaty appointments with my ME/CFS doctor. Before my next quarterly check up, I listen to our past behemoth. I make sure I’ve followed up on all his suggestions (and I’ve almost always missed a few), gather updates, plan our agenda based off where we were, and generally shave at least a quarter to a half of unnecessary repeat chatter off the cal.

   (Bonus: this will make you your doctor’s favorite. They heart-eyes this kind of efficiency.)

3. YOU ARE MISSING SO MUCH, you don’t even know. Even in appointments where I *think* I’ve followed like a star student with thorough notes, I go back, re-listen, and hear important brand new things (and tones) I somehow missed before.

4. See how you present your case much more clearly. I’m spent by appointment o’clock. Felt like I was gonna pass out in the last one. And if I listen to the recording: I sound alert, intelligent, and dare I say it…healthy. At least to a doctor who doesn’t know me well. So that’s hella misleading.

   When I go back and listen, I learn things like:

   1. I often “make light” of how much pain I’m in—not helpful

   2. I miss opportunities to highlight how much illness affects my life

   3. I’ll think I begged for a treatment when it turns out I only really politely asked

   4. All of which gives me the awareness to do better in my next appointment

5. Turn banger appointments into listen-anytime podcasts. I deeply regret not recording every last one of my therapy sessions, because 1) my therapist speaks to my soul 2) she ditched insurance and now sessions are ker-ching and 3) sometimes you just need to hear that explanation of how your brain (or other wonky organ) works once more. I have several great appointments I’ve listened to at least three times. It’s especially critical for things like surgical consults, where you might hold off for a few years and then come back to the decision.

6. If your doctor isn’t one who speaks to your soul (to put it mildly), they might at least be a bit kinder if they know they’re being recorded. And if you’re asking for tests or procedures…they might say yes to cover their rumps. (That said, let’s not start recording doctors to manipulate them—we want this as a tool, not a weapon.)

7. AI’s a touchy subject and this is totally your call, but: you can get extra techy and add AI apps to take notes for you and organize action steps. I’ve used Fathom (free) on Zoom and it’s boggling how well it can convert a circuitous conversation into takeaway bullets and action items.

How to ask to record a doctor’s appointment (in 36 states, you don’t have to!)

In my state, it’s illegal to record someone without their knowledge. (In most states, it’s not! Check your state or country here.)

I usually just say I have memory problems (true), am struggling today (like every day), and want to be able to refer to the appointment later. No one has ever said no. We usually agree it’s for private use only.

If someone did ever say no, I’d be real curious why. Doctors shouldn’t be saying anything in appointments they wouldn’t stand by in a recording, right?

Alternative hack: bring a human

If for whatever reason you can’t record—old phone, tech stresses you out, doctor says no (again, this has never happened when I’ve asked)—then bring along a human if at all possible. Or, best of all worlds: record AND bring a human, why yes, I’m a genius.

So many reasons: it’s more fun! There’s someone to steal Q-tips with! Male doctors will address questions to whatever random dude you bring with you! (True story.)

But mostly, your appointment buddy can listen and remember and provide feedback and perspective too. Of course, it’ll be colored by their own human experience, but it’s better than relying on just your own brain-fogged one.

Just because doctor’s appointments sap your sparkle now doesn’t mean they have to forever.

Is it extremely depressing that you need a whole strategy just to go to the doctor without feeling compelled to break plates afterwards, yes. But sickies, take the tools. One fight at a time. We’ll deal with this punkass system when we’re well.

In the meantime, let’s get you kitted out for battle so you can start running these appointments like a well-managed revolution.

Because let’s be honest: that’s what they really are.

Tip #2 incoming next week! STAY TUNED.

A little footnote

“It is possible to commit no mistakes and still lose.” That’s a Star Trek quote I live by.

I’m going to give you what I can to ensure you have the best appointment possible. And, there are things no one can control, up to and including: entire other humans, societal systems, and pervasive misconceptions about the limitations of going keto.

I’ve been able to make most of my appointments vastly better. There are still shit nugget ones sometimes.

So if you do everything “right” and your appointment is still a towel-screamer, give yourself a pass. The next one shall rock.

Dish in the comments please: Ever recorded an appointment? How did it go?

No? Dare you to try it.

In the meantime: Wish you had? Share that record-worthy thing your doctor said, good or bad.

What other hack changed your appointment game for the better?

Leave a comment

A reader in the real-world wild asked me “how’s the meats” and the squeal I squealed. In public.

To be fair, I don’t get out much.

If you didn’t catch that reference, you need a Meatscon. It’s basically a “how many spoons do you have EXACTLY?” scale. I’m sharing mine with you so you can dial in your own version. It’s pay what you want/can/feel/or not!

Already bought one? Please review it! A lot of people haven’t downloaded digital products and I want them to see it’s a good move.

Already reviewed it? Good grief, you’re a peach.

Your Meatscon Awaits

Bless Substack for being so aggressively kind.

The other week, I left my coffee fund off. A reader IMMEDIATELY asked me to put it back. Aw. In the spirit of letting good things happen, I welcome decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts are here.

PS. Take the money, le sickie:

• Get $100 when you open a new Ally account using this link. (Gives me $50, too.) Minimum deposit is $1k. This one’s my fave for the buckets feature!

• Get a $200 bonus (and then up to 3% cash back forever) on my no-fee card with American Express with this link. (I get $75, but I’d recommend them anyway.)

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

Share Imperfect Working Order

But I didn’t. For so much of my life. Without realizing it.

You, too, maybe?

In the olden days, when good things happened to me, I registered them as stressfests. (I’m fun like that.)

Once, I was invited to move into LITERALLY THE BEST APARTMENT IN OUR ENTIRE BUILDING.

It was double the size of the cramped studio I was fast outgrowing, with cute French doors, three times as many windows, a view of an entire mountain range, no upstairs stomping…and it was (wait for it) all of $140/mo more (and still way cheaper than any other option in town).

I cannot adequately explain how much this decision tortured me. My friends listened to me gnaw my knuckles for WEEKS. (Bless those friends.) What if my new neighbors were louder? What if that $140 should have gone into retirement or more relaxed spending? When I finally, hesitatingly chose to take the upgrade, it was with deep uncertainty and rampant stress shits.

GOOD. LORD.

After 11 glorious years nestled into this sweet space (much better for also decade-older me), I’m boggled at what a sharp stick in the eye this now quite obvious gift felt like.

Or, when good things happened to me, I immediately felt I needed to “earn” them.

Ever pulled this one? Only about a hundred times a day, for past me.

If someone gave me a gift, I agonized over what I could do for them in return.

A favor? Weighed on my mind for months as something to repay.

I can’t believe I used to discount my client contracts if I had a baller day and charged through a project unexpectedly fast. Because it wouldn’t be fair to charge full price!

Fair to whom!?

Every lucky break felt like a heavy obligation, because I hadn’t yet “earned” it. Even though it was already given, freely. Even though the person giving it already got paid back in spades with the little thrill of putting some kindness out into the world.

This is what happens when we live in a transactional society instead of in community.

And I definitely didn’t celebrate good things. Nope.

This is real: I used to wear a Camelbak (water backpack with a drinking tube) hiking so I could just guzzle water by slightly turning my head. Why? Because then I wouldn’t have to stop on a hike to haul my water bottle out. You know, 15 seconds of breathing, appreciating birds, seeing the sights…what an inconvenience.

Have I mentioned I want to punch past me? This crap is why.

I hid from my 30th birthday, my boyfriend at the time attempting to wedge a dairy-free dark chocolate cake in the (actual) door I was trying to close on him.

As I crested 10 years of business, I fantasized about throwing a party with all my delightful clients and colleagues. 10 years melted into 15. No party. I just…worked more.

Wanna know what changed all of this?

A two year nightmare of mail orders, returns, body breakdowns, and insomnia known as “trying to buy a mattress in a small town with severe chronic pain.”

Yes, I got KICKED OUT of a local mattress store at one point for taking too long. No, I don’t want to talk about it.

At one point, a mattress company “offered” exhausted me a chance to keep the couchlike mattress I was trying to return for 60% of the cost. Which seemed “wrong.” Wouldn’t I be a bad person if I accepted this thing I had bought at full price but didn’t love for less? Again, cue the gnashing of teeth, this time to my parents over email.

My Dad said, and I quote because I still have the email:

This seems so damn obvious, in retrospect.

When BAD things happened, I ALWAYS recognized them.

When bad things happened, I RARELY thought, “gee, I really earned this.”

And I certainly granted the bad things plenty of pomp and circumstance: mourning, kvetching, questing for solutions, hand-wringing to the max.

So why did I treat good things so differently? With no recognition, crippling guilt, and a glaring lack of ceremony?

When I was finally forced to confront how bad sickness (and mattress shopping) really was…I was also forced accept the good, too.

I’m not owed good things because bad things happened to me. That’s a slippery slope of a mindset.

But at a certain point around the mattress debacle, I publicly admitted I just couldn’t do basic life shit alone anymore. And people insisted on dropping off groceries, Venmo’ing me a few bucks, coming over to clean, and just generally infusing my life with a level of good I could not afford to resist.

There was no escaping this good. It wore down my defenses. I was too tired to fight it.

I buckled and went to the light side.

I’ve (mostly) stopped “running uphill looking for trouble.”

Now, when people give me compliments or gifts or kindnesses, I don’t think “ACK MUST REPAY!” or “I’M NOT WORTHY!”

I think, AWWWWWWW! Then I pause to soak up the menschy moment, thank them sincerely, and try to pay it forward (but not to the point of worrying about some cosmic balance sheet.)

On my 40th birthday, I published a gift registry (that’s still going), had at least three different small mini-parties (gotta bite size it as a sickie), and celebrated one way or another ALL YEAR. (This mostly consisted of my Aunt Carrie mailing me my wildest heart’s desires (and so much floss), which was so sweet and appreciated.)

When I wrapped up a career-defining project last year, I spent a week with my Mom, huffing roses, schlepping out to a waterfall with my rollator, and splurging on a few 40ish purchases.

Now I…roll downhill? looking for…glee? IDK.

Not to get too silver lining-y…but also, after decades of taking good things as bad, I’m flipping the script.

The federal funding freeze decimated my stable microbusiness. That’s “bad.” But. Also. It’s opened the door for a much-needed services rethink. Does it FEEL like a wild and free exploration of my next professional venture? Not usually. But that’s what it is. (Stage whisper: It’s also a clusterfuck. But not *just* a clusterfuck.)

Same for sickness. Objectively: “bad.” And it’s made me cut myself a break for the first time in my life. Now I’m learning how to cut myself a break because I’m a human, not because I’m a sickie.

Far beyond my work systems and bodily systems, systems worldwide are falling apart. Bad. Very, very bad. And I see the people working harder than ever before to fight, to protect, to innovate, to build something better.

Yes, there are going to be times when whatever is happening just feels too sucky. In those times, I hope I’ll still see the good AROUND whatever catastrophe has come to pass. The surprise chocolate bars from secret Substackers, the friend who made me an illustrated picture book about my Victorian clothes-eating moths debacle, the retired neighbor who always scrapes the snow off my car.

You know: the good stuff that I now know (finally) to let happen to me.

Okay, tell me. What’s the worst good thing that ever happened to you? Or the best recent thing you’ve reluctantly let in?

Comments are open for silver linings, hard lucky breaks, and lost-and-found joy.

Leave a comment

If you’re still like, what in the canned fruit cocktail is a Meatscon…getcha one!

It’s basically a “how many spoons do I have” scale. I made mine for my bestie and boyfriend and now I’m sharing it with you so you can dial in your own version. (Already bought one? Please review it and/or share it with someone who needs it!)

Bless Substack for being so aggressively kind.

Last week I left my coffee fund off, and a reader IMMEDIATELY asked me to put it back. Aw. In the spirit of letting good things happen, I welcome decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts are here.

Share Imperfect Working Order

PS. Let free money happen to you:

• Get $100 when you open a new Ally account using this link. (Gives me $50, too.) Minimum deposit is $1k. This one’s my fave for the buckets feature!

• Get a $200 bonus (and then up to 3% cash back forever) on a no-fee card with American Express with this link. (I get $75.)

• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!

I don’t know. I just know how *I* do. How do you?

Leave a comment

Before I tell all, let me fully admit: this is a list of privilege, lucky breaks, chance, ability, creativity, and scrappiness. In that order.

My take? If you have ANYTHING that can help you through sickness, for the love of Pepto-Bismol, LET IT HELP YOU.

This sounds simple. It’s not. I myself resisted pretty much anything that could have actually helped because I didn’t want to “seem cheap” or “demand too much” or “ask for handouts” or “take what isn’t mine” or whatever.

I want to give past me a righteous wedgie. All she did was put herself and her loved ones through a meat-grinder of self-precious martyrdom. For what? Optics? Let’s not.

Alright, onto the survival skills.

If this list looks exhausting…in many ways, IT IS.

And in many ways, it just becomes habit over time. Start anywhere.

How I make enough money to get by as a chronically ill human in constant pain:

1. Run my own microbusiness.

1. My services have a healthy price tag per hour. My client results justify it. Last year, I made an okay-ish salary working less than quarter-time.

2. Because I own a business, some things in my life are company expenses and therefore tax deductible.

3. My microbusiness connects me to decent-ish, subsidized health insurance (which accesses me to doctors who don’t take Medicare or Medicaid).

4. It also allows me to set up and fund retirement accounts—with contributions that come off my income for said health insurance subsidy calculations.

5. I have to save money for business taxes and company expenses…no reason they can’t go into a high yield savings account and make a little interest while I do. This link gives you $100 to put into my favorite one (and I tried a few.)

   Think maybe you could start a microbusiness? Then scooch it high-ticket over time? I do.

2. Live low on the food chain.

1. I live in tenement housing where rent is half what it should be. Boiler heat, water, and gas is included (and unlimited). Pros and cons here.

2. Most of my belongings and a lot of my clothes came out of our building’s free pile. (I also consign things out of the free pile if no one grabs them.)

3. In our building, we watch out for one another. One example of many: I take notes and flowers to a sweet lady who has lived in our building since the 70s (!). She schemed to get me the ONE close parking spot for our 40 person building. Less walking from my car=more agency to work.

4. I drive my Nana’s turn-of-the-century Buick. She’s a tank. Cost me a $1, thanks to my Dad. Smells like a sewer anytime the temp hits above freezing , but she’s hard to kill. Kinda like me.

3. Ask for help that actually helps.

1. I have (out-of-state) family support. It took years to rally. That's another post. But it comes in many forms, all of which make life more sustainable.

2. I support my community how I can, and they support me back. My best friend just covered a month of therapy, for which I am extremely grateful…and I’ve also been available for unlicensed “voice note therapy” when she needs.

3. I put out what I need (or want!) into a gift registry and mostly thanks to one incredibly sweet aunt but also some very sweet friends, floss, food, towels, sheets, some small luxuries (AND MY ENTIRE TRIKE!) come my way.

4. Family members send me money. I could survive in the surviviest sense on what I make alone, but this gives me some agency to save a little, get dental cleanings, afford supplements, and things like that. (Goal: level up into an auntie.)

5. If there's a gifting occasion coming up and people ask what I would like, I answer truthfully (and usually with something super boring but useful). My sister sponsored a pair of winter boots. My friend Sally just sent me a year’s supply of water filters.

4. Treat money like it’s malleable.

1. I aggressively negotiate bills from corporate healthcare and other megaconglomerates, often qualifying for forgiveness or discounts. Scripts here!

2. Leverage a high yield savings account. Unfair we can be paid for having money, but also unfair I can’t have cake, so moving on. (I tried several and like this one best.)

3. Work those cash back credit cards. I get 6% back on groceries here, 6% back on online purchases at a Bank of America card, Alaska Air Miles on the credit card I use to cover medical bills, and 2% back on my Citi whatever card.

4. Do I want privacy or money? Honestly, money. I just got a $67 check from Rakuten ($50 referral link). Apparently I’ve saved nearly $1k on Capital One Shopping, which just runs in the background and drops discount codes in for me. I don’t even shop that much (most of it was from business purchases.)

5. I ask for discounts wherever I possibly can, especially on non-insurance covered medical care. I also look for scholarships and financial aid on anything I need. If I don’t see it, I ask if it could exist. I’m honest about my financial picture. Sometimes, I qualify.

6. If my insurance says it isn’t covered, I fight. Fax machines are involved. It’s not for the faint of heart, but it can be tens of thousands of dollars saved.

7. I made my Meatscon Pay-What-You-Want. That meant sickies who needed it free got it free. And sickies who could afford to throw down a few bucks could, too. (Thank you to everyone who downloaded it, shared it, and covered coffees!)

5. Spend money to save energy for more lucrative work.

1. My mom pays for a laundry service. It is the single best investment we have made in my health, including treatments at some of the leading medical centers. If I had to do my own laundry, there's no way I could work at all (it would require hauling loads up and down three stories and out to a laundromat).

2. If it costs more to shop at the closest grocery store or order DoorDash so you don’t have to cook BUT THAT HELPS YOU WORK AND MAKE MORE, then consider the tradeoffs. (Also: ask for a discount.)

3. There are apps I subscribe to, consultants I hire, and ergonomic comfy desk thingies I pay for to make work WORK. If it saves me some agency and I can make a bit more paying for it, worth the profit.

   What do you do to make the unworkable work for you?

   Leave a comment

Things I don’t do to survive as a sickie:

• Bilk my friends, family, partner, or government. There is a world of difference between being honest about your needs and gracefully accepting what is given…and twisting the truth and mooching. (FWIW? You’re not mooching.)

• Coupon clip. Instead, I let the corporate overlords keep track of me and grab discount codes from sites like Rakuten ($50 referral link) or Capital One Shopping ($80 for both of us). (Privacy? Nahhhhh.)

• Hide my financial struggle. I was raised talking about money is rude. But that’s pretty much only ever shot me in the fallen-arches foot. It doesn’t serve me or anyone else to pretend life with ongoing medical care is affordable.

• Cut every scrap of purchasable joy out of my life a la Dave Ramsey. I get the cheapest, tiniest drink at the coffeeshop, but I still get it. And tip a dollar. Constant pain plus endless “food poisoning” plus too many other symptoms to list is a slog. I refuse to deny myself a few little treats to distract me from the awfulness.

• Compromise my health to work…sort of. This is a work in progress. I still get too excited about projects, overdo it, and give myself a migraine. I’ve come a long way—I do my damndest to turn meetings into emails, pace out work, respect my limits, and make work work for my illness—and I’m working on streamlining even more.

Look. Capitalism turns into a truly tough gig when you can’t work like you used to. It gets tougher when the “budget hacks” (cook your own food! walk to work! DIY!) are for people enough to like…cook, walk, and DIY. And when there’s an avalanche of medical bills…it can be super tempting to just rob a dog salon.

(Trust me. I’ve considered it. Vetoed because prison won’t have low-histamine chicken.)

But…sickies are the toughest, most resilient folks I know. (Even if we’re goddamn tired of being so.) Still. PERSIST. Share these tricks, tell us yours, and keep the crip community living as well as possible. Truly, the best revenge.

Share

Have some free cash, from survival tools I actually use:

• Get $5 plus shopping bonuses from Acorns…where I’ve accidentally made ~$2k in less than a year somehow?? Just do the lowest cheesiest tier at ~$3/mo to maintain the account, which usually more than pays for itself. I do get a fluctuating amount of money if enough people sign up at once (rare but happened once, please do it today if you want it to maybe happen again!)

• Get up to a $300 bonus (and then 6% back on groceries, which are spendyaf rn) with no fee for the first year on this card with American Express. (I get $75.)

• Get ANOTHER $300 with a Capital One checking account. IDK, it’s a zero-fee checking account that I mostly opened to score $300 but nice backup? (I get $50.)

• Get $100 when you open a new Ally high-yield (~3.3%!) savings account. No minimum deposit! You don’t even have to fund it hard. But if you do, it’s the easiest money you’ll ever make. No fees. (I’m linking my sister’s referral bc I’ve earned all I can on mine, and she’s also a sickie who could use the bonus rn.)

• Score a $100 REI gift card just for buying something not at REI. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. I’m always surprised just how powerful it is, and it regularly saves me $20-30 on big purchases. If you’re a paragon of privacy, skip; I personally don’t mind targeted ads.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? I’ll take the money.

• Help yourself to $10 at Instacart (and toss me $10). It’s clutch in a pinch and I’m 80% happy with it (and they’re good about refunds when I’m not). My top tip: actually tip.

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

Not cash, but…

• Take $60 off a Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb.

• Take 25% off Lost Range CBD (I get $10) here. Deep in the agony cave, I ordered their Gold Buckle Muscle Rub and GLORY HALLELUJAH first three hours of real pain reduction in like 30 years. Not kidding. It’s basically expensive Tiger Balm, and the science is out on CBD, but it smells SO much better and I think that’s part of the feeling of, oh, I’m not on a torture rack anymore, I’m at a nice spa. Put it on your sickie wish list!

I wasn’t gonna mention the Meatscon again but…couldn’t resist. Getcha one!

Fill it out. And have a slightly better handle on your own personal ever-changing hellscape! (In all seriousness…it truly helps my nearest and dearest to know “where” I am on the suffer-scope.)

Reader Amy says I need my coffee fund and gift registry back on the books, so here it is—especially since I’m a February birthday!:

I’ll always welcome a coffee at Venmo kira-stoops, any payment on the Meatscon, and my gift registry is here.

Til next time, sickettes!

I still have a sweet partner who looks at me adoringly through my teenage-boy-style burps, makes me dinner when I’m in a brutalizing migraine, hugs me tight when insurance denies everything, and says things like “you’re due for a full body massage.”

And no, I didn’t have him before I got sick. I’ve dated off and on throughout the worst of my illness.

So for the record: yes, diseased people date (and no, you don’t have to settle for dingbats even if your connective tissue is acting like one.)

If you think you can’t date while diseased…but you want to…we need to discuss.

(If you don’t want to date…or kinda want to but know you’re not in a place to invest the spoons…then that’s GREAT too. Truly. I loved and needed my single sickie years, too.)

Here’s what people miss about diseased dating:

1. Relationships look a little different. They still count.

I’ve never been on a “real date” with my boyfriend. Usually, we hang out in pajamas, eat my safe foods, and maybe sit outside for a bit. If we kiss too hard, my neck goes out. I wish we could do more real couple things…and we’re still a real couple.

Famous ME patient Jamison Hill was too sick to speak when he “said” three little words to his girlfriend of 7+ years during their only real-life meeting. It counts.

Other ME “celebrity” Whitney Dafoe sparked off a few chat romances pretty much as soon as he “woke up” from years of near-coma-like illness—while still tube-fed, unable to tolerate clothes, eyes and ears usually covered.

Our drive to connect overpowers basic needs…because it is a basic need.

So whatever you’re up for (Reddit meet-cute, voice-note fling, housebound snuggles, Zoom co-naps, blowing all your spoons on going out on a date), it counts.

What could a works-for-your-life romance look like for you? I bet you a Meatscon there’s someone out there that’s into it. While *I* bemoan our lack of “real dates,” my boyfriend couldn’t care less and is happy with WHATEVER we do.

My bf’s usual “date night” view: me, jammies, taking an hour to chew Safe Meal #2 with my two remaining functioning teeth. He has at least 50 pics like this.

2. You gotta pay for the apps. (I know, but hear me out.)

Where to meet available non-ableist cuties? You’re going to hate this: disabled or not, hardly anyone is asking anyone out IRL anymore. I already tried reaching for the same potatoes as cute dudes at Safeway while looking adorable. No dice.

I don’t make the rules; I just use the tools—and one of them is paying to circumvent the cruddy parts of online dating. Cut the line, skip the swiping (or hide your profile), and set your filters to your highest standards. I personally got zero *ahem* pics and plenty of engaging tea dates and a few romances with guys I actually liked this way.

My bf also shelled out, spending $2.99 to send me a compliment (which was the only way I was chatting with anyone.) If we both hadn’t ponied up on the apps, there is NO chance we’d be together now. (He gets grocery delivery.)

I know dating online is a tall order and there’s more to it, which is why I’m going to make a guide (Romance While Retching?) soon. Any big q’s I could answer? Obvi safety…

3. When you get comfy with your illness, your dates will too.

I thought I was claiming my illness when I worked up the lady cojones to order tea at bars without flinching. Good step, but let’s be honest: if I’d really owned my illness, I wouldn’t even BE at a bar, knowing it would crash me out for a week. With a flush of health faked entirely by blush and adrenaline, I steered the conversation around to my movie club, my business, past adventures—anywhere but the elephant in the room.

Needs? Never heard of ‘em.

Then when completely-healthy-looking-me dropped the disabled bomb three hangs in, the boys would bolt. (One stammered he had to finish his PhD. Like, right then?)

At first, this confirmed my secret fear of being sick and therefore undateable. I didn’t like this new version of my life or my self—why would anyone else?

But also, I was subjecting dates to a bait and switch. Of course they hated that.

New tactic: own my illness and tell people sooner. Not all the gory details, but no more tap-dancing around the truth. I started dropping a sentence or so in early texts to say: hey, I’ve got some limitations and they’re not small.

LITERALLY EVERY BOY WAS COMPLETELY FINE WITH IT.

Not only that, they were KIND. They asked thoughtful questions and offered conversational off-ramps. They brought groceries and cooked me safe dinners and did my dishes. Sure, there were a couple ableist gaffes, but fewer than you’d think.

They weren’t better boys. They were just better informed.

4. Dating is hard for EVERYONE—diseased or not.

Because there’s Dating While Divorced. Dating While Parenting. While Caring for Elderly Parents. While Widowed. While Newly Out. While In Debt. Unemployed. Broke. With Weird Hobbies. With Braces. While Never Married In Your 40s and Up.

Just like Dating While Diseased, none of these things are shameful or wrong. But EVERYONE (who is not Zendaya) at some point asks, “who would want to date someone like me?”

The answer is obvious to everyone except the person asking: duh. Other humans.

5. You bring your baggage with you…but you start unpacking the suitcases when you’re sick.

If you drooled over emotionally unavailable bad boys or leaned anxious before, you’re probably still going to do that. The difference is, illness forces you to level up now.

So you look at Trouble like an off-limit cheese plate…tasty, tempting, but not worth the flare. You ChatGPT attachment theory for the 34th time…but this round, you work on your own style instead of trying to change someone else’s.

The sicker I got, the healthier my dating decisions became. They had to. I STILL MAKE MISTAKES. But they’re newer, better ones. (Incrementally, I’m not perfect.)

Slowly, I’m downsizing from a bulging checked bag to a lighter carry-on.

6. You’re hotter than you realize.

When I first lost all my muscle tone, I thought no one would want to date me and my newly droopy butt. My bloated belly. My weird toenails. My falling-out hair.

AHAHAHAHAHA, what? That SO was not the case. From a purely physical standpoint, I look worse than I ever have in my life. And yet. My boyfriend thinks I’m “very smoochable” (according to this morning’s text). Honestly, so do I.

7. And your challenges make you all the more desirable.

Losing just about everything to illness makes you a more whole, interesting person.

Because who wants to date a perfect person who’s never had to struggle? You know the scene in Wicked where Fiyero meets Glinda:

“You’re perfect.” “You’re perfect!” “We’re perfect together!” And then BOTH these conventionally attractive hotties go after Elphaba instead, who is green and allergic to water and has bad eyesight and is about to board an even bigger strugglebus than the one she’s already been on her entire life. Because substance is DESIRABLE.

Most of us sickies have deepened our empathy, racked up our resourcefulness, become more forgiving, opened to community, and recalibrated to tiny joys. (Which doesn’t mean we wouldn’t take a miracle healing, yes, please!)

When we’ve been in the trenches, we can’t help but attract people who either crave and/or possess substance. Those looking for contra dancing partners or climbing buddies weed themselves out, making room for people who want to hang out with the real you. Even if you can’t go paragliding or cider tasting or cow tipping or whatever the kids do these days.

It’s not easy, but it can be the right kind of hard.

Dating While Diseased asks a lot from you: in my case, more honesty with myself and him than I’ve ever given before. (And as a patently terrible liar, I considered myself pretty damn honest before. This is more.)

That honesty has cut through the nonsense, sidestepped the shallow, and landed me in a relationship that actually fits—including my reality. I’m seen and supported.

And dating is just ONE way to be seen and supported. I was seen and supported in single years, too. I was challenged and grown in other ways then. Just because you CAN date while sicker than snot, doesn’t mean you HAVE to. Your life can be rich and full partnered, dating, single, or some in-between, and I truly mean that.

But if you do want to date, date. Your people are out there. They’re ready to cut up five bell peppers and put them in the freezer for you, pre-chopped for easy solo dinners later. They’re itching to ogle your furry, stage one lipedema legs. They want to take metaphorical walks around your interesting brain.

And they couldn’t care less how many functioning teeth you have.

Dish in the comments, please:

1. If you’re sick and partnered, wanna share your story?

2. If you’re not dating but want to, what’s your biggest question? (I’ve been at it off and on for 9 years so I have thoughts!)

3. Single sickies who are intrigued: what if you just tried a week of paying for Bumble, owning your story, believing in your own hotness, and basically effing around and finding out? (Please come back and tell us about it!)

Wanna practice a key dating skill? Communicate your function level in just a grunt or two!

If you missed the whole post about it, The Meatscon is an editable template for YOUR personal function skill.

You need it. Your people need it. Just get it. Then make it your own. Anyone going through any sort of struggle can use it, sick or not. Pay what you want, including $0.

The Meatscon Scale for Sickies

• Get $5 plus shopping bonuses from Acorns…where I’ve accidentally made ~$2k in less than a year somehow?? Just do the lowest cheesiest tier at ~$3/mo to maintain the account, which usually more than pays for itself.

• Get up to a $300 bonus (and then 6% back on groceries, which are spendyaf rn) with no fee for the first year on this card with American Express. (I get $75.)

• Get ANOTHER $300 with a Capital One checking account. IDK, it’s a zero-fee checking account that I mostly opened to get $300 but why not? (I get $50.)

• Get $100 when you open a new Ally high-yield (~3.3%!) savings account. No minimum deposit! You don’t even have to fund it hard. But if you do, it’s the easiest money you’ll ever make. No fees. (I’m linking my sister’s referral bc I’ve earned all I can on mine, and she’s also a sickie who could use the bonus rn.)

• Score a $100 REI gift card just for buying something not at REI. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder. I’m always surprised just how powerful it is, and it regularly saves me $20-30 on big purchases. If you’re a paragon of privacy, skip; I personally don’t mind targeted ads.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back). Again, privacy gets sold. But do we have much anyway? I’ll take the money.

• Help yourself to $10 at Instacart (and toss me $10). It’s clutch in a pinch and I’m 80% happy with it (and they’re good about refunds when I’m not). My top tip: actually tip.

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!

Free newsletter, TAKE IT (but support is welcome, too!)

Imperfect Working Order is free for now! If you’re stirred to support and have the means, please consider enabling my dark chocolate addiction on MyRegistry.

I’m also saving up to swing my now-off-insurance ME/CFS doctor + therapist appointments via Venmo (kira-stoops).

You can also just comment, or even better, comment to another commenter below! The biggest gift would be to see a community of sickies spring forth here.

Big time gratitude in advance.

(This works for non-sick folks going through any sort of long haul rough patch, too.)

How am I doing, sickwise? It’s complicated. You too?

When people ask, I don’t want to explain that my sciatica is like a cattle prod on high in my ass, but my tonsil stones appear to be shrinking? BUT, my friends wish I had an indicator light so they knew what to do. (And so do I, truth be told.)

Enter: the Meatscon Scale. Like the DEFCON merged with the pain scale but ALL ABOUT ME and actually useful.

Anyway, you need one too. So do your peeps. Your therapist. Maybe even your boss.

Because you shouldn’t have to explain when you can barely groan “eiiiight.” Or waste ANY of your 4 day when you could be blissed out in a park sunpatch.

Anyway, here’s a preview of mine:

If you want your own editable version, grab the template here (free)!

Make Your Own Meatscon (Free!)

Here’s how to make it your own:

1. Do it for you

I’m pitiful at remembering that when I’m at an 8, a workfest WILL make things worse. I’m also deplorable at remembering that Meatscon 3 days don’t last forever or happen very often, so it’s CLUTCH to go seize them. With the table, I’ve already outlined my capacity and it tells me what to do each day.

2. Don’t overcomplicate it

I kept it to one page because my friends/parents/sis/bf don’t need ALL the details—they just sorta need to know the “camp” we’re in. (I’ve also put together a hecka-complex “User Manual” for myself that I’ll share later on, and that’s where all the details can live. Think of the Meatscon as a reference guide.)

3. You overcomplicated it, didn’t you?

That’s okay. ILLNESS IS COMPLICATED. Whatever you made, it’s still super useful. But later, you might want to create a copy for friends where you ask yourself, what one or two things do I REALLY need people to know or remind me of when I’m at X?

4. Screenshot it on your phone!

I wind up referring to my phone version ALL THE TIME…and I’m pretty sure that’s the one my bff and bf glance at the most.

5. Give it away—NO CRINGING (or cringe but do it anyway)

It’s weird to let people care about us, isn’t it? I guarantee you that your nearest and dearest (and maybe your providers) will appreciate this. Wouldn’t you, if your friend going through a complicated time gave you a shortcut to supporting them?

If you trust your doctor or therapist, it can be helpful to show them this so they understand “where” you live your life. I RARELY go below a 4, and I reserve 10 for true mega-emergencies like ovarian torsion (the actual painful-est thing I’ve ever experienced in my life, hell to the no ever again, -12 out of five stars.)

The scale should reflect the range that actually applies to you over, say, six months, but it’s likely you spend most of your time between a few numbers—and that’s critical health intel. It’s KEY for doctors to understand if we’re spending 80% of our current reality at our personal 8—that’s inhumane and demands immediate attention. Or if we’re routinely hitting 3’s on our new meds…there’s some great motivation for your doctor to keep writing the script, despite the risks.

6. Give the template to a struggling friend to adapt to their (unsick) situation

Being sick is just ONE long haul tough time you can go through. If you’ve got a bud:

1. Caring for a sick child or elderly parent

2. Grieving a death or other big loss (like fertility)

3. Navigating a gnarly divorce or breakup

4. Crumbling under political turmoil

5. Reckoning with an untenable employment situation

6. Enduring a court battle

7. Coming to terms with a new identity

Then they’d welcome your care and support. And they could use a handy-dandy scale to avoid their own sense of burnout. (Although they’ll have to rename it to BreakoverCon or something.)

I didn’t even prompt my sweet interwebs bud Molly to stoke up the Meatscon but THANKS MOLLY! I agree.

Anywho. Simplify your life, right meow, and give your friends the gift of an easy way to check in on you.

If you’re having a goodbrain day and know your case well, you can probably dial the whole Meatscon in 15-20 minutes with the pre-made template. If you’re struggling, just fill out the struggly end while you’re “in it” and feeling your limits…you can come back to the lower numbers later.

Get the Meatscon (and better support!)

There’s a suggested cost (of an Americano!) but I will be zero percent offended if you take it and run with it free-style! (Promise. I know how shit being sick is, and ain’t nobody got the energy to make a table and color code it from scratch.) If you love it and stumble into a money pit later, you can always send me a thank you coffee at Venmo kira-stoops.

Sidenote: Yes, the actual Defcon numbers run in reverse…but we’re all probably more familiar with the pain scale, where 1=good and 10=unbearable, so that’s what I went with.)

Alright team. Grunt on—in a systematized way! And here’s to the good end of your Meatscon scale.

What’s the best thing you can do for yourself to feel 1% better at an 8? What do you jump on when you hit a 3? Please tell the class about your Meatscon in the comments!

Free money, TAKE IT:

• Get $100 when you open a new Ally account using this link. (Gives me $50, too.) You do need to do three deposits, no minimum. I’m so mad no one told me about high yield savings until I was nearly 40. (One reader said it worked on desktop, not on phone…heads up!)

• Get a $200 bonus (and then up to 3% cash back forever) on a no-fee card with American Express with this link. (I get $75.) Hot tip: go through their “special offers” to really load up on cash backs. I use Amex for both business and personal.

• Take $60 off a Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb.

Free newsletter, TAKE IT (but support is welcome, too!)

Imperfect Working Order is free for now! If you’re stirred to support and have the means, please consider enabling my dark chocolate addiction on MyRegistry. (Thank you to my sweet pal Gretchen for making my grown-up pillow protector dreams come true!)

I’m also saving up to swing my now-off-insurance ME/CFS doctor + therapist appointments via Venmo (kira-stoops).

You can also just comment, or even better, comment to another commenter below! The biggest gift would be to see a community of sickies spring forth here.

Big time gratitude in advance.

10 years ago, pre-disability, when my therapist asked what I felt grateful for, I honest-to-God spat out:

“Nothing.”

And I damn well meant it.

I had a ski pass, hiking buds, a kickass business, and a capital-C CHEAP apartment in an otherwise expensive gorgeous mountain town.

Didn’t matter. All the soggy wrong in my brain snuffed out any potential spark of gratitude. Gram had just died a brutal death. I’d broken up with my best friend AND my boyfriend. Climate change loomed; clearly we were careening towards The Road. Paralyzing perfectionism made impossible to ever feel like I wasn’t about to fuck up everything. Everything inexplicably hurt. Everything felt hard. Just like it always had.

And that was before I blew out my neck and never skiied, power-cleaned, or took a real walk again.

Despite my ugly-feeling truth, my therapist reassured me I was not a spoiled brat.

Our brains pay attention to negativity to keep us alive, she said. We’re wired to perceive danger, deal with it, shake it off, and move on.

Some people are so sensitive, though, they sense and monitor a LOT of bad, far beyond what one human can manage. One simply does not “shake off” the imminent end of civilization. (Or undiagnosed craniocervical instability.)

I thought this pervasive sense of ACK was just normal. And it is, for many sickies of my ilk. Maybe we’re the evolutionary Pomeranians, faintly hearing danger first and yapping to protect the village. Maybe our unsolvable symptoms have tyrannized us for so long, our brains have fritzed into perma-tortured mode.

Regardless, we’re well aware of EVERYTHING that’s wrong.

And in my case, breathtakingly clueless as to what’s going right.

My therapist suggested I “attune” to tiny things that felt slightly better.

I didn’t see how noticing the fuzzy texture on her sofa blanket could possibly make up even slightly for watching Gram die.

But my compulsive pain science research said that intentionally logging pleasant things could counteract pain, flicking the proverbial “off” switch in a brain that might just be shrieking like a faulty car alarm.

Desperate for relief (and wildly misunderstanding the assignment), I covered every seated surface in my house in fuzzy blankets. I similarly smothered my body’s screams of protest, skiing and hiking and workaholicing through teeth-gritting, bone-aching “gratitude.” I attuned to the trees, the sky, the scent of earth and snow. I did not attune to myself in the slightest.

My neck went out so spectacularly the misalignment broke my back molars in half.

You can send all the “safety messages” to yourself you want, but if you’re continuing to backcountry ski through a shitpile of pain on top of undiagnosed EDS, something’s gotta give. Like your neck ligaments.

There was NUANCE to this whole “attune to something good” thing, lost on overachievery me. The point was never to deny my reality—it was to bring the good in alongside the bad. You’re supposed to attune to both yourself AND the good thing. (Heh. Whoops. Sorry, ligaments.)

It was an “and.” Gram died; I hated that. AND I could admit I found the couch throw satisfyingly fuzzy.

Holding both things in one breath felt both pointless and impossible. And that was before the neck blowout. After? The pain was nothing like I’d experienced before, and its unending, contentless blare overtook my entire brain and then some.

I gave up trying to NOTICE nice things happening (too hard), and started just making nice things happen to give myself something to notice (this time, without the self-gaslighting).

I’d been a dyed-in-the-Army-Surplus-wool cheapass. But deep in agony cave, I started treating myself to undeniable frivolities.

A cute mousepad. A $4.99 bunch of tulips. Nail polish. Microwaveable booties. Instead of getting the cheapest option of whatever I was buying, I’d get the prettiest. And then I noticed the warm flush of appreciation I felt when I saw it. Without dismissing the sense I’d washed my undies in hot sauce (a fun MCAS symptom).

When my head screeched, I scrubbed walnut shell powder, lotion, and peppermint oil over my feet in the sink. Then my head screeched AND my feet felt spa-like. Progress?

When my brain Jell-O’d, I’d find a wildflower patch to sit in, dizzily. Then my brain derped AND my eyes and nose delighted. Maybe I felt a lil spark of gratitude?

Getting to the coffeeshop was an Olympic feat, but I made myself do it. Daily. There, I would pause over the first sip of an Americano. I’d been drinking coffee since I was 14, but I’d never before truly lingered over the steam wisps, the crema, the chocolate-bitter tones. I felt horrific. AND it was the best part of my day. My happy coffee huffs gave me the oomph to stay and work for a short bit, migraine and all.

It started as an effort, turned into a habit, and then, the good things started popping up everywhere.

It took FOREVER, but I gradually clocked the good things just out and waiting in the world.

I migrained, AND the birds chirped charmingly.
I bloated three sizes, AND that lady’s makeup looked fire.
My body filled with acid, AND the pine trees waved friendly hellos.

Over years, the focus flipped.

I laughed with my bestie, AND my shoulders crunched.
I soaked in a luxuriant bath bomb, AND my stomach protested.
I typed this sentence, sitting at a sunny picnic table by a frozen pond, warmed by a heated vest and blanket, my boyfriend’s hand on my hip, working side by side on our laptops like yuppie dweebs…AND my back hollered “how ‘bout surgery?” before my body treated me to a two hour die-in-the-bathroom sesh.

The good became the default. The danger became the add-on. And when it wasn’t all bad, I could actually do some good.

The pain is still really effing loud. But the good is co-hollering, now.

I wish the good cancelled out the agony. It doesn’t.

But bringing in the good means I can do something past me couldn’t: enjoy the oases of fluffery deeply enough to face going back out into the storm.

And despite the storm (in my brain, in my bones, in my guts, in my country, in my planet) I feel very, very grateful.

When I go to bed at night, now, I thank the Universe that my mom and dad and sister and brother and bestie and partner are alive. I thank Jebus for a warm place to live, with t-shirt sheets and deep quiet and a heating pad wrapped around my butt. These are the things I had before and couldn’t appreciate when my therapist asked. Now I feel unforced gratitude for them deep in my bones.

Sometimes my brain takes a pre-sleep grateful tour of my friends and community, but usually, looong before I get around for my appreciation for cocoa butter and silk scrunchies and good knives and secondhand Christmas lights and fresh toothbrush heads (thank you to my sweet friend Erik for those), I fall asleep.

Soundly. Pain, rumbleguts, fuzzy jammies, and all.

SNEAK PREVIEW!! The Meatscon Scale

Why answer emotionally invasive questions like “how are you” when you can just grumble out a number?

We’ll discuss this more later, but I threw together an editable table so you can have your OWN pain/fatigue/malaise scale. It outlines YOUR personal “1-10” simply and effectively, so you and your peeps know in an instant what kind of day it is.

It’s pay what you want (including ZERO. If you love it and decide to support later, you can always smash my Venmo kira-stoops.)

This has been a super handy way for me to make decisions about my day, and an easy shorthand for conveying my status to my supportive BF and BFF.

GET YER OWN MEATSCON SCALE!

Free money, TAKE IT:

• Get $100 when you open a new Ally account using this link. (Gives me $50, too.) You do need to do three deposits, no minimum. I’m so mad no one told me about high yield savings until I was nearly 40. (One reader said it worked on desktop, not on phone…heads up!)

• Get a $200 bonus (and then up to 3% cash back forever) on a no-fee card with American Express with this link. (I get $75.) Hot tip: go through their “special offers” to really load up on cash backs. I use Amex for both business and personal.

• Take $60 off a Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb.

• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)

Free newsletter, TAKE IT (but support is welcome, too!)

Imperfect Working Order is free for now! (Possibly forever, can’t say I’m doing this super intentionally.) If you’re stirred to support and have the means, please consider fulfilling my wildest pillowcase protector dreams on MyRegistry. I’m also saving up to swing my now-off-insurance ME/CFS doctor + therapist appointments via Venmo (kira-stoops).

You can also just comment, or even better, comment to another commenter below! I’d love to see a community of sickies spring forth here.

Big time gratitude in advance.

You couldn’t follow the meeting discussion. You couldn’t handle the commute. You reacted to your co-worker’s cologne. You couldn’t even type through the pain.

And then one day, you just physically, mentally, utterly, absolutely COULD NOT make work work anymore.

That was it. Game over.

You scraped by, though, somehow, even as you fell through a you-sized hole in the supposed safety nets. You deserve major kudos for how hard you tried. And a full force hug for everything you lost.

And you deserve major kudos for everything you didn’t lose. Whatever drove you in your career (or school) before is still in there. Maybe you’ve wondered…is it really game over? (Stage whisper: IT’S NOT.)

Which brings us to now. You opened this post. You thought:

What in the everlasting chicken is a microbusiness, and why in the h-e-double-hockey-sticks* would I want one?

I totally made up the word microbusiness. It’s a shorthand for “owning your own company,” except it’s much simpler than that. It’s the easy version, for sickies. If you can’t it do half-brainfogged and marinating in three-day-old leggings, it ain’t microbusiness.

Here’s the thing: full-time work is exhausting, and it’s not even the full-time part. It’s the:

• Wardrobe planning

• Commuting

• Meetings (MEETINGS, am I right?)

• Interruptions and refocusing and losing morale at never getting anything DONE

• Client drinks, office drinks, and other unpaid “socializing” (aka…work)

• Squirming under florescent lights, freezing under the A/C vent, and generally shriveling under a waking sensory nightmare

• Having very little control over your schedule AND your body at the same time

• Coworker drama, wicked bosses, and on and on…

Running your own thing (aka…regular business) can ALSO mean too many extras! Maybe you DID wing it solo and felt like you had to:

• Socially circulate to sell contracts

• Humor clients by dressing the part and saying yes to pointless meetings

• Work 60 hours a week and always be on call

• Stay up to date on all the social media platforms

• Design all your clients bespoke flower arrangements complete with branded tags HI IT’S ME

Said from experience: regular business owning can be better than regular employment, but it can still be way, waaay too much.

Microbusiness cuts all the above out, without cutting the value you bring.

When I transitioned from the ad agency office where I started, I could get my former workday done in about 4 hyperfocused hours. Back then, I just loaded up on more hours. Now, working for myself means I can still make money, but I don’t need anywhere NEAR 40 hours a week to do so.

I also now know how to work around the expectations that just don’t jibe with sicklife. Like pants, ew.

Microbusiness isn’t just about more money in less time. It’s about:

• Choosing your own health insurance plan (CLUTCH when your fave doctor only takes Blue Cross Blue Shield)

• Working when you feel less asstastic

• Being okay that you literally just SLEPT through the entire first week of February

• Proximity to a private bathroom

• Working while your safe foods simmer on the stove

• Taking months off for treatment

• Writing off desk flowers as scientifically-proven productivity enhancers

• Maybe making more money than you would on disability (I do, but it’s also fine to just cover the electric bill or that one pricey supplement)

Even moreso, it’s about:

• Still fulfilling a piece of your life’s purpose

• Still getting to a be a part of something meaningful

• Scratching the itch to put your desperately needed talents out in to the world

What counts as microbusiness?

Microbusiness offers one of your skills to another person or entity, and gives you back something in return in excess of what you spent (including energy!) to offer it.

I’m going to focus on making profit in microbusiness. If you can’t accept money (god disability is a nightmare), mentally substitute “clicks to my gift registry” or “more supportive peeps who would deliver groceries” for profit.

Microbusiness implies simplicity. You should be able to mostly run it from a bed or a couch while feeling meh. It’s no frills, but high value. Generally, you make much more money per hour than you ever could at the job-version.

Microbusiness can look like…

• Selling celiac information cards like my friend Jodi (who has a brutal intractable spinal leak on top of ME/CFS)

• Part-time coaching like my bud Sally (who layered breast cancer on top of ME/CFS)

• Writing an allergen-friendly cookbook like my internet friend Rachel (ME/CFS+) (and donating all the first year’s profits to the Open Medicine Foundation!)

• Landing a grant to write a fun sicklife guide like my gal Jenny (fibromyalgia)

• Publishing THE book on illness the old fashioned way like Sarah

• Coaching the chronically ill like Imperfect Working Order reader Caitlin

• Consulting with therapists 100% virtually to help them set up their clinics like Steph

• Opening an online print store like ME patient + advocate Whitney Dafoe

• Work as a fractional bookkeeper like Aneisha (see her comments below—we need more fractional everything!)

• Contracting back to your former employer part time with your easiest-lift skill

• Punching up resumes for contacts in your former industry

• Hosting a YouTube for sarcastic cross-stitchers with a private paid community

• Selling a dead-simple, no-design email course on…literally anything (should I do one? What should I do?)

• Offering 15m voice-note consults on people’s dating profiles (I kinda want to do this!)

…and doing it all in a very manageable-with-illness way.

My microbusiness saved me when all the safety nets didn’t

I’ve been a freelancer, contractor, consultant, whatever for 17 years. I didn’t have disability insurance. Real government disability? I didn’t have two years of savings to survive the application process. To afford applying, I’d have to leave my entire support network and an apartment and friends I loved to move in with my parents out of state.

While I knew I qualified, I worried the judges, who reject 54% of final applications, would not agree. I knew too many people, sicker than me and well-lawyered who were still determined “able” to do old-timey jobs like “clock repair.”** Even on the half-chance I won, there would be no coming back to my beloved town with rents more expensive than my potential monthly benefits check.

For me, I was able to transition from running a real business (draining) to running a microbusiness (doable).

And that’s how I made it 9 years off disability—along with all my other cheapass habits and a non-negligible amount of outside support. This is NOT meant to be a flex. I think I chose the best way forward for me for now, and that’s about it. I’m presenting it as an option, maybe, for some of us. An imperfect one, at that.

“Can I really do this?”

I’m not going to sugarcoat this: sometimes, no. Sometimes you’re just too sick. I never, ever recommend anyone push it.

But there is a BIG gap between regular employment and self-employment. If your whole frame of reference is a job, you might not be too sick for microbusiness.

If you’ve only ever freelanced in a way that would run you into the ground now, there might be a way to make it work better, way better, for you.

It is possible you can do more than you think, freed from the baggage and extras of full-time work or hustling hard. AND it’s possible it’s too much and I don’t want to suggest anyone try to fight through severe symptoms. AAAND it’s possible maybe you do some microbusiness but not to survive…just to cover a few extra expenses. So…

If you’re new to pacing and resting, go, shoo, come back here in six months. (WAIT, come back, stay for Dating While Diseased, Chronic Community, and Feeb Finance!)

If you’re new to Long Covid, GIT. Some people can rest out in the first two years; resting is now your ENTIRE job.

However, if you’re a sickie who has a pretty good feel for your flow (or even a well person who wants to easily side-hustle!), and can spare a few half-well hours a week:

LFG.

*Can you tell I grew up in an all-Mormon town? (As a non-Mormon…)

**Last year, the government FINALLY removed obsolete jobs from its determination list, so at least you aren’t eligible to be a reptile farmer, canary breeder, or telegraph operator anymore.

Do you struggle to explain how many spoons you have? NOT ANYMORE: enter, the Meatscon.

Note: I put zero thought into naming this (origin story here). It’s not a con(ference), it’s a scale! I made mine for my bestie and boyfriend and now I’m sharing it with you so you can dial in your own version. GITCHA ONE.

Updated: FREEBS for FEEBS! (sorry, that was terrible.)

• Get $100 when you open a new Ally high-yield (3.3%!) savings account. (Gives me $50, too.) No minimum deposit! This one’s my fave for the buckets feature.

• Get up to a $300 bonus (and then 6% back on groceries) with no-fee for the first year on this card with American Express. (I get $75.)

• Get ANOTHER $300 with a Capital One checking account. IDK, it’s a zero-fee checking account that I mostly opened to get $300 but why not? (I get $50.)

• Get $5 from Acorns…where I’ve accidentally made nearly $2k in less than a year despite eye-rolling at it for years? (Just do the lowest cheesiest tier.)

• Score an $100 REI gift card just for buying something not at REI on this card. (A surprising amount of outdoor adventure gear works awesome for crip exploits.)

• Make $80 (and earn me $80) just for installing Capital One’s discount code finder.

• Rake in $50 (and earn me $50) for using Rakuten (more codes and cash back).

If you don’t need these links, please share them with someone who does—it helps support me and this free missive!