Patient involvement is not a nice ethical extra added after the ‘real science’ is finished. It is one of the conditions required for the science itself to be trustworthy.

That is the truth at the heart of a paper co-authored by patient advocate Joletta Belton…and it should change how every person living with pain thinks about research.

For decades, patients have been treated as the objects of pain research. We are recruited, measured, classified and discussed. Researchers collect our pain scores, test their theories on us and publish conclusions about us. Then clinicians use those conclusions to decide what our pain means and which treatments we should be allowed to receive.

But we are never given equal power over the questions being asked, the assumptions built into the research, the outcomes being measured or the way the findings will be applied to our lives.

That is not a minor courtesy problem. It is a major scientific problem.

Research can be rigorous and still be wrong for patients

A study can be methodologically elegant. It can be pre-registered, randomised, blinded and analysed beautifully. It can survive peer review and appear in a prestigious journal.

And it can still ask the wrong question.

It can measure outcomes patients do not value.

It can exclude the people most affected.

It can exaggerate small or uncertain findings.

It can produce knowledge that advances careers, attracts funding or becomes a saleable product…while doing absolutely NOTHING to make patients’ lives better.

Remember the patients? The reason you guys are doing the research? To help people living with pain? I rarely see evidence that some researchers consider patients at all. Patients are the REASON they have a job…but rarely does that factor in.

Too much research begins with what interests the researchers, what is likely to be funded, what can be published and what can be turned into a potentially profitable product. The patient is invited in later -sometimes only when a personal story is needed to make the project look relevant and humane.

And the patients who are invited are carefully selected. Only a rarefied few have their stories told. Only those whose stories conform with the researcher’s goals, and advance the researcher’s careers. Everyone else? Crickets.

Because a lot of pain research is about furthering careers, not patient care.

The first question any researcher should ask should be simple: What do people living with pain need us to solve?

Patients should help decide which questions need answering. We should identify the outcomes that would make a meaningful difference to our lives. We should help anticipate harms, challenge assumptions and determine whether a statistically significant result represents any genuine improvement at all…in the real world.

What happens when patients are excluded

The ENTRUST-PE paper, Enhancing the Trustworthiness of Pain Research: A Call to Action, explains that research conducted without active partnership with people living with pain may:

· exclude essential knowledge about what pain is actually like;

· investigate questions that have little relevance or benefit to patients;

· measure outcomes that do not matter to the people expected to live with the results;

· fail to translate findings into meaningful improvements; and

· perpetuate the researcher-as-gatekeeper model.

This is not hypothetical. It is happening throughout pain research and clinical practice.

Researchers and clinicians have constructed an increasingly dominant story about chronic pain:

· that persistent pain is often no longer a useful signal of disease or injury;

· that the nervous system has become overprotective;

· and that education, reassurance, psychological treatment and increased activity can teach the brain that the body is safe.

This is true of Chronic Primary Pain only. This is NOT true of all ‘chronic pain’.

Yet we now have a generation of doctors, physios, psychologists…who have only been taught about chronic primary pain. Who appear to have NO idea that chronic secondary pain exists. And that it is NOT treated the same way primary pain is. Who, sell their services as Chronic Pain Experts…but have never visited the IASP website, or read the actual definitions of chronic pain.

Of course, some people do have chronic primary pain. And within limited and carefully selected contexts, some of these ideas may help some people.

Limited. My research is showing that most people have secondary pain, not primary pain. Funnily enough there isn’t much data on this. Why get the facts when assumptions will do?

Yet the Pain Science Education industry was created based on this theory, and a whole bunch of assumptions. And expanded into a broad treatment paradigm that was (and still is) applied to ALL chronic pain.

Yes, people whose pain is NOT generated by a hypersensitive nervous system, but by inflammatory disease, neurological injury, structural pathology, cancer, endometriosis, connective-tissue disease and other ongoing biological causes…are receiving pain science education as a first line treatment.

And when I mention the harms this causes, clinicians invariably tell me I am exaggerating. There ARE no harms.

Wrong treatment wrong patient, wrong time.

Very, very profitable, for some.

Extremely harmful for those of us living with constant, severe chronic secondary pain. Our safe and effective treatments were taken away, denied to us. And replaced with stories and metaphors that do not describe out pain, and cannot reduce our pain.

Anyone with an ounce of common sense should have seen the problem. But no. Because the clinicians who enthusiastically embraced Explain Pain, and later, Pain Reprocessing Therapy, and many, many copycats…knew nothing about pain. Except what they were told by Explain Pain.

They did not live with pain.

They did not check the ideas presented in Explain Pain to ensure the evidence stacked up (Spoiler: it doesn’t).

And they did NOT listen to their patients who tried to tell them this was not appropriate or relevant to them.

I have heard many clinicians laugh and make fun of patients who tried to tell them that they didn’t find Pain science education relevant or helpful. Patients did not want this as treatment, because it does not reduce pain. And these clinician fail to see the problem is them.

First, listen to the patient. If you don’t listen, you can’t understand. If you can’t understand, you can’t help.

If people who lived with pain were central parts of the research team, the Pain Science Education industry would NEVER have happened. And a lot of people would have been saved a lot of pain.

Chronic secondary pain was erased from the narrative

The people with the most severe, disabling and medically complex pain were pushed out of the narrative completely. Abandoned. Ignored. Denied to even exist.

Chronic secondary pain means pain caused by an underlying disease, injury or pathological process. It is not rare, obscure or intellectually boring. It is the most COMMON type of chronic pain. It includes millions of people whose bodies continue to generate nociceptive or neuropathic signals for entirely understandable biological reasons.

Yet the public conversation increasingly treated ‘chronic pain’ as though it were one condition with one common explanation: an oversensitive alarm system that continued after tissues had healed.

Everyone whose pain was actually caused by underlying physical pathology was gaslit and told their pain had nothing to do with tissue damage…and when the treatment for chronic primary pain failed to reduce their pain, they were abandoned. And very often, victim-blamed.

Once that narrative took hold, the consequences of severe pain were turned into supposed causes of pain.

Very reasonable fear of disease progression became catastrophising.

Protecting an injured body became fear-avoidance.

Being unable to exercise became deconditioning or low motivation…or plain old laziness.

Depression caused by relentless pain became evidence that the pain was caused by maladaptive psychology.

The underlying disease disappeared from view. As did the patient’s knowledge and agency over their own body.

And clinicians allowed this to happen. People with many years, or even decades of education and experience just…threw all that away. And adopted Pain Science Education. The One Theory To Cure Them All.

It was so obviously wrong, it didn’t stand up to basic common sense…let alone scientific rigour.

And yet, here we are.

When we patients pushed back and told clinicians that no, my back hurts because I have ankylosing spondylitis and I have active inflammation. Or no, that electric shooting pain is because I have MS and my nerves are being demyelinated. Or, best of all, no, my back hurts because I have grade 3 spondylolisthesis, and cauda equina and am recovering from a Three-Level spinal fusion…we were told we were ‘stuck in the biomedical model’.

NO. This is the ‘BIO’ in the biopsychosocial model. It comes first for a reason, most pain is cauesd by BIO factors. And then potentially amplified by psychosocial factors.

This is precisely the kind of harm that equal patient partners can identify before a theory becomes clinical doctrine.

Had there been people like Joletta Belton on those research teams, had people with lived experience been essential and respected members of every pain science research team, this travesty would never have been allowed to happen.

Explain Pain could not have expanded into the industrial complex it is if patients had held power

Imagine people living with severe secondary pain sitting at the table from the beginning…not as grateful guests, but as equal members with the authority to challenge the project.

We would have said:

· This language will be used to dismiss pathology that has not yet been found. And will prevent clinicians from even searching for the pathological causes of pain.

· Clinicians will interpret ‘pain does not equal damage’ as meaning our pain is not evidence of ongoing disease or injury. And blame all painful causes that are not immediately apparent with only basic testing as being psychological.

· Patients who deteriorate when pushed to exercise will be described as fearful, avoidant or catastrophising.

· This framework will be used to justify withholding safe and effective pain medications.

· You cannot safely apply one explanatory model to every person with persistent pain.

· You must measure the harms caused when clinicians get the classification wrong.

We patient advocates said ALL of those things a decade or more ago. And ALL of those things have come to pass.

It’s good for people who have chronic primary pain. I am happy that those people who live with chronic primary pain are being treated safely and effectively with pain science education. I am not ANTI pain science education. I am anti its overuse and over application and the complete lack of understanding that not all chronic pain is primary.

But if patients were essential, core members of the research team, this erasure of chronic secondary pain and these reductionist, over simplified ideas would never have been applied to ALL chronic pain. Only those for whom they are appropriate.

Perhaps pain-science education would still have been developed and studied. But it could not so easily have been marketed as the universal answer to all “chronic pain” while the harms of misapplication were ignored and denied. It would not have spawned and industry that harms as much as it helps. (My personal belief is that pain science education has done more harm than help…but this is impossible to measure and therefore prove.)

Patients would have insisted that chronic secondary pain remain visible and be understood. We would have insisted that disease and injury be investigated and treated; that pain relief itself be recognised as a meaningful outcome – the most important outcome! - and that no psychological explanation be allowed to replace appropriate diagnosis and medical care.

Secondary pain can be extraordinarily severe. Yet in many cases, relieving it is not conceptually very difficult: treat the underlying disease where possible and provide analgesia appropriate to the severity and mechanism of the pain.

That will not cure every condition or remove all pain. Many diseases are incurable. But pain medications can reduce suffering, restore sleep and function, and give people enough of their lives back to cope.

Instead, pain care has too often become remarkably elaborate in its efforts to avoid doing the obvious thing: relieve pain.

In fact, the goal isn’t even relieving pain anymore. Take a peek on LinkedIn at the number of studies being promoted that are aimed at reducing psychological distress…and witness how this is considered the same as pain relief. It’s the ultimate bait and switch. And it’s happening every day. In research labs and clinician consult rooms.

Treating pain is treating pain.

Treating psychological distress is treating psychological distress.

They are both worthy targets, but they are NOT the same thing! Never were, never will be. But they have been conflated to the point that many clinicians no longer understand the distinction.

The token patient

Many institutions now claim to include patients. But presence is not power.

A patient may sit on an advisory panel after the research question, theory and methodology have already been decided. They may be invited to tell their story, in researcher-approved patient-friendly wording or even comment on recruitment materials or such. Their photograph may appear in a report. The organisation can then tick the patient-involvement box.

But nothing fundamental has changed. The patient representatives had no real input and no influence.

Institutions often prefer patient representatives who are agreeable, professionally comfortable and unlikely to challenge the underlying premise. The ideal token patient is permitted to contribute experience, but NOT to question authority. They can describe suffering, provided they do not ask whether the research itself may be causing harm.

Tokenism is not partnership. Visibility is not authority. Being heard is not the same as having the power to change the work.

Joletta Belton represents another model

Joletta was not added to ENTRUST-PE to humanise a project designed by scientists. The published patient-involvement statement records that she was a ‘full and equal network member from the inception to completion of the project.’ She is named as an author of its publications.

Every part of that sentence matters.

Full. Equal. From inception. To completion. Author.

Her lived experience was not treated as an anecdotal ornament beside the ‘real’ expertise. It was recognised as a distinct and essential form of knowledge. More than that, Joletta helped constitute the work itself.

ENTRUST-PE identifies seven foundations of trustworthy pain research:

· integrity and governance;

· equity, diversity and inclusion;

· patient and public involvement and engagement;

· methodological rigour;

· openness and transparency;

· balanced communication;

· and data authenticity.

Patient partnership sits among those core scientific requirements. It is not an optional act of kindness.

That recognition did not appear by itself. It exists because patient advocates - Joletta, and people like her - have spent years pushing back against institutions that were accustomed to treating patients as problems to manage, stories to display or tokens to placate.

Much of this work is poorly paid or entirely unpaid. It depends upon persistence, grit and an incredible personal commitment to keep returning to rooms in which patients have historically held very little power. Joletta has done that work again and again - not simply asking researchers to listen more politely, but demonstrating that people living with pain possess real intelligence, analytical ability and expertise that science cannot obtain from anyone else.

Lived experience is not inferior evidence. It is the original evidence. It is unique knowledge. Researchers may understand mechanisms, methods and statistics, but only patients know what it is to inhabit the painful condition being studied: which questions matter, which outcomes change a life, which assumptions are obviously false and where a seemingly helpful idea may cause harm when it reaches clinical practice.

Joletta’s perseverance has helped change not only whether patients are included, but how they are seen. Not as pains in the arse obstructing the experts. Not as grateful recipients of professional wisdom dispensed from on high. Not as permission slips allowing researchers to claim that patients were consulted.

As thinkers. Collaborators. Critics. Authors. Leaders. People capable of making the science better.

Many patients may never have heard Joletta’s name, but we have all benefited from the ground she has helped shift beneath pain research. I believe we owe her a considerable debt of gratitude, not just for earning her own place at the table, but for working to ensure that the patients who come after her are recognised as belonging there as well. I believe we owe her that gratitude, because I know that pain advocacy work can be exhausting. It can be thankless. And some ‘professionals’ can get very unpleasant when you question, however politely, their conclusions. It’s just plain hard work with little overt reward.

We are ReExplaining Pain

Patients are now living with the consequences of a pain narrative developed largely without us.

We have watched chronic secondary pain disappear from educational material, clinical policy and public understanding. We have been told that our pain is an overprotective output, our distress is catastrophising and our requests for relief are evidence of our faulty beliefs. Or…drug seeking.

So I am putting chronic secondary pain back into the conversation. Last week someone told me “Secondary pain! You have given me the language I needed!”. That was everything to me. That’s why I do the work that I do. I have been banging on about it for close to a decade. Every clinician who treats pain needs to understand Chronic Secondary Pain…and that they have been taught only half the story.

Every day I am working on re-explaining pain: restoring disease, injury, pathology, nociception, neuropathy and appropriate pain relief to a story that became dangerously narrow. So narrow it failed the majority of pain patients.

I am NOT denying that pain is complex or that psychological and social factors can influence every human experience. I am rejecting the misuse of that complexity to obscure biological causes and deny treatment to people living with painful, progressive, incurable disease and injury.

And I want us all to reclaim our authority as people who live inside the bodies being discussed.

Patients belong at the centre

I am a huge fangirl of Joletta Belton…she is not asking researchers to be nicer to patients. She is making a far more consequential argument: research that excludes the knowledge, scrutiny and authority of patients cannot automatically claim to be trustworthy.

Patients do not belong at the edge of pain research, waiting to receive whatever scientists decide. We belong at the table where the questions are chosen, the assumptions challenged, the harms anticipated and the meaning of ‘success’ decided.

Not as tokens. Not as stories. Not as permission slips. As full and equal partners.

Joletta is helping build the model and infrastructure required to make that possible. Everyone living with pain has a stake in her work. We should read it, share it and support it - because pain research should not merely produce more research.

It should make our lives better.

Source:

The ENTRUST-PE Network, O’Connell NE, Belton J, et al. “Enhancing the trustworthiness of pain research: A call to action.” The Journal of Pain. 2025;28:104736. doi:10.1016/j.jpain.2024.104736.

It also got me and my band a record deal, so I wasn’t bad at it. If it matters.

But the one-in-a-million success story was not me. It wasn’t us. We gave it our best. And our best was very good.

Then singing was taken away.

Playing guitar was taken away.

Rheumatoid arthritis affects my hands. Neuropathy from CIDP affects my hands. The weakness and pain mean I can no longer hold the chords properly. I can’t play lead. I can’t finger-pick. I no longer have the strength or dexterity required.

I can’t play.

Not really.

I can manage perhaps five minutes. And yes, those five minutes might make me happy.

But then they remind me that I am limited.

Always limited.

Physically limited…not mentally limited. Everyone seems determined to turn physical incapacity into a psychological problem… as though I merely need to overcome some fear, change my attitude or try harder.

I wish. You will rarely find someone as mentally strong as me.

But this is physical.

My hands cannot do it anymore.

Five minutes is not an evening spent noodling on the guitar. It is not a few quiet hours playing, experimenting, writing and losing myself in music.

No, I don’t want to perform gigs anymore.

But playing?

Writing?

Singing?

Yes. I still wanted those things.

They would have made me happy.

Especially singing.

Because even when I can’t play guitar, can’t write songs, I can still sing songs I love. Getting lost in a song that touches my heart is the purest joy I know. That is my sanctuary. My refuge. My haven. My home.

Rheumatoid arthritis can affect the tiny joints of the larynx. Who knew?

It affected mine. It changed the timbre of my voice.

I used to be able to hit the high notes.

I mean really hit the high notes. The kind only a small number in the of people in the world can reach.

I could do that.

Just because I didn’t do it all the time…

Just because I didn’t show it off…

Just because I didn’t do it in front of other people…

Doesn’t mean it wasn’t important to me.

And it doesn’t mean I couldn’t. I have recordings to prove it. Even if I can’t reproduce them anymore. That was me.

It was profoundly important to me.

It was one thing I could do that most people can’t. It was the one way I was special. But it was much more than that.

It was my escape.

My joy.

My heaven.

My nirvana.

Nothing has ever given me the peace that singing gave me. It was part of my soul. It was how I tended to my soul. It was a world I created…just for me.

Writing.

Playing.

Singing.

The audience was always optional.

This was pure. And it was just for me.

Then a disease took it away.

Something monumentally important to me meant nothing to my doctors. It meant nothing to my friends or family.

So what? they said. It’s not like you were a professional. As if money was what I was talking about.

No, only another singer, musician, would understand. Or a person who has lost something so profoundly important to their soul, to their identity, to their happiness. And then had to move on.

With no support. No understanding. No compassion.

Then came the surgeries.

I have had many operations. Some were major; some were considered more minor. Every one carried risks. Every one involved a tube being passed down my throat, between my vocal cords.

After one of those surgeries, my throat was damaged.

I lost my voice for several weeks.

I thought it might never come back.

Eventually, it did.

But it never came back the same.

What came back was not my voice.

It was not me.

Now I can still produce something that sounds like singing. Sometimes it even sounds pleasing. But my range is much narrower. I can’t go high, I can’t go low. I can hang around in the middle…mediocre…average…like everybody else. My voice is no longer special. Its tone is completely different.

It is husky. After ten minutes, it becomes gravel. After twenty, it disappears altogether.

Then I can growl with the best death-metal singers.

But I can’t sing anymore.

Not the way I once sang.

Not in the way that made my voice me…

Singing wasn’t something I did.

A singer was who I was.

And when I grieve, people still respond:

So what? Surely that can’t matter. You weren’t even a professional.

As though joy must earn money before its loss is permitted to hurt.

As though something must be witnessed by an audience before it can matter…can be part of your identity.

As though the private things that keep us alive…the things we do when no one is watching…the things we do for ourselves alone…the things we do to feel alive…are somehow the things that matter least.

And we’re not allowed to grieve them when they are gone.

They are wrong.

Singing was the purest joy I ever knew. It was part of me. It made me ‘me’.

My voice is gone forever. The one thing that made me special. Even if people didn’t know that…I knew. I knew that my voice was special. I didn’t have to share it…that wasn’t why it mattered. I don’t crave an audience…I never have. That’s why all of this is so difficult for me.

And now, my voice is gone forever. I will never feel that joy again.

It is one of the biggest losses, amongst many, many losses that I have had to endure and move on from. Chronic illness, and untreated chronic pain, take much away from a person. And people who have endured such loss deserve empathy. Compassion. And care.

If you think this was not a big deal…not a big loss…if you think I should be more grateful…

Please, read this again.

There is little point paying for the MRI if I cannot afford the treatment that follows it.

So I have been saving.

But every time I manage to put a little money aside, something else happens. Something essential breaks. Another expensive problem arrives. The money disappears into whatever emergency is standing in front of me.

I spend almost nothing on myself. Every cent goes towards bills and necessities. There is no eating out. There isn’t even coffee money. There is no entertainment budget and no fun money…not that I can easily leave the house anyway.

But I have my dogs.

I love my dogs, and they love me. They give me the companionship that people became too busy to offer. They give me the love that people withdrew. They are beside me on the couch every day while I work, hurt, rest and try to build some kind of life within the limitations illness has imposed.

That is why I am going to find a way to get Zoggie the treatment she needs.

Maybe I cannot raise enough. That is possible. But I will damn well try. I have one large thing I can sell – my car. And that should pay for her treatment.

“She’s just a dog”

People abandon sick and injured animals. Some do it with apparently no conscience at all.

Several people have told me that I am out of my mind for considering spending this much money on Zoggie.

“She’s just a dog.”

But she is not “just” anything to me.

She is my friend. She is family. I love her.

Her value to me is not determined by her species, her earning capacity or the cost of repairing her body. She is a living creature who trusts me completely. She depends on me to protect her. When I brought her into my life, I accepted responsibility for hers.

Now she is hurt. If there is a reasonable treatment that can relieve her pain and give her a good life, I cannot simply decide that she has become too expensive to matter.

Not without trying.

People abandon sick humans too

That is the part nobody wants to say aloud.

People abandon broken and sick humans too.

Believe me, they do.

I have even been told that I must be a horrible person to have ended up alone.

What a cruel, c*nty thing to say.

It also proves my point. Some people really suck.

I was not a horrible person. I was an excellent friend.

I was the person you could call at two in the morning. I would get out of bed, drive across town, hold your hand and hug you while you cried. If necessary, I would sit with you through the night and keep you away from the sharp objects.

I did that even for people I did not know particularly well.

I helped because I could.

When I had money, I shared it freely. When I had time, I gave it to people who needed help. I listened endlessly. I did not pontificate or bury people beneath unwanted advice. I listened. I supported. I told them what I thought when they asked me...not before. And only once. If you choose not to take my advice, that’s Ok. I say what I think…then I hold my peace and support my friend in whatever action, or inaction, they choose to take.

I was a good friend.

Then I became sick.

Not one of the people I had supported decided that it was their turn to return the favour.

Not one. I know friendship should not be transactional…but you should want to help someone who supported you through your worst hours. Over and over again.

In reality, people don’t want to be reminded of their worst hours. I became that for some people – reminder that bad things happen. A reminder that bad things happened to them. They didn’t like the reminder. So…get rid of it.

Some gradually faded away. Some openly decided I was too much work. Most found reasons to believe that I was not really as sick as I said I was.

Now I am long past wanting those people back in my life. That ship has sailed.

I have my dogs.

First, you have to make the sick person undeserving

We all know that abandoning a critically ill friend sounds terrible…particularly when that friend supported you through trauma, pain and crisis and once helped keep you alive.

Abandoning that person would make you a bad friend. Maybe even a bad person.

So the story has to be changed.

What if she is exaggerating?

What if her illness is not really that bad?

What if she has not tried every treatment?

What if she has not worked hard enough at getting well?

What if she hasn’t manifested hard enough?

What if she likes the attention from being sick?

What if supporting her would merely enable her to remain sick?

My own sister once told one of my friends not to help me because it would “enable” me to stay sick. Apparently, I had to want to get well. Yeah, my sister and I don’t talk anymore. She did way worse stuff than that.

Doctors have a more respectable-sounding phrase for this story: secondary gain.

Well, trust me: there is no gain here. Secondary or otherwise.

I am sick. I am in pain. I am disabled. I have done ALL I can to treat my illnesses, to reduce my disability and pain. I have tried every treatment, every medication, even some that have caused me more pain and suffering.

My illnesses are not a performance and my mobility aids are not props. I use them when nobody is watching. I need them when there is no audience to impress and no sympathy to obtain.

If this is all an elaborate performance, I have been maintaining it for an awfully long time. More than twenty years, and I am still sticking the landing. Talk about the long game.

When exactly is it supposed to pay off? And how?

The best years of my life are long gone. Life is a constant struggle with disease, pain, disability, medical expenses and (lack of) money. I cannot work enough hours to support myself comfortably. I have run several small businesses, but small business is hard even for healthy, able-bodied people. It is hardly the magical answer for someone who is seriously ill and disabled. I am barely keeping my head above water. And it has been that way for years.

But I have no choice, so I keep trying.

Still, if people decide not to believe me, not to understand that incurable disease and constant, severe pain are real, then…what can I do? Let them go with love. That is all.

And they absolve themselves of any guilt, because I am clearly not that sick.

Sometimes people cannot bear the reminder

I suspect some people did not want to be around me because I became a possible version of their own future.

People get old. People become infirm. People get sick…even people who eat healthy, think positively, exercise and do all the ‘right’ things.

Seeing a friend in her early forties using a walking frame or wheelchair can bring that reality uncomfortably close.

It is easier to decide she does not really need the walker. Perhaps it is performative. Perhaps she wants attention. Perhaps she is focusing too much on illness and creating a negative life for herself.

Perhaps it’s her own fault. Perhaps she made poor choices. Perhaps she is too lazy, too stupid, to make better ones. Perhaps she just has a low pain tolerance. Perhaps she has poor coping skills. Perhaps, perhaps, perhaps. I’ve found people can find any justification to see a situation the way they want it to be.

Perhaps she’s just not really THAT sick. Perhaps the pain is just not really THAT bad.

Once you decide that, you do not have to confront her suffering or your own vulnerability. You can walk away and tell yourself that leaving was best for both of you.

I always knew when it was beginning. When a friend would start disengaging. The caring questions stopped. The other questions started…but what about? But why not? But why didn’t you? The doubt crept in. Sometimes a new partner would arrive and announce that I could not possibly be as sick as I claimed.

And somehow, after knowing me for twenty years, my friend would believe the new partner.

Because love. I get that.

I don’t like it. But I get it.

I could forgive that temporarily. What I could not forgive was the continuing absence when reality became impossible to deny.

Apparently, having dogs is selfish

Old friends have told me that it is selfish for me to have dogs because I cannot afford to care for them properly.

Yet I cook for them every few days. Large batches of beef, vegetables and rice. They love it, and feeding them well matters to me. They receive medication, veterinary care, affection and as much of my time, attention and energy as I can give. Which is more than most healthy people give their dogs, trust me.

I have also been told it is selfish because I cannot walk them every day.

That part is true: I cannot.

They have a yard. They have one another to play with. I walk them as often as my body allows…because I love walking them. It brings me joy to watch the simple joy they experience just walking around the neighbourhood and sniffing all the sniffs. But walking is physically difficult, and I also have to work…first…before I use any energy on enjoyment. There is only so much usable energy in a day.

Sometimes I manage twice a week. At the moment it has been more than a week.

I wish that were different. It isn’t.

They are nevertheless safe, deeply loved and given the best care I can provide.

If having the only dependable comfort left in my life makes me selfish, then apparently I am selfish.

But I find it fairly abhorrent to hear that judgement from people I supported for decades…people who disappeared when I could have used a little of that care in return.

They do not get to abandon me and then decide that the only companions who stayed should be taken away too.

I will not abandon her

People abandon sick animals when their care becomes difficult or expensive.

People abandon sick humans when friendship becomes difficult, inconvenient or confronting.

Often they make the abandonment feel righteous by deciding first that the vulnerable person or animal is undeserving: too expensive, too demanding, not trying hard enough, exaggerating, malingering or “just” a dog.

I know what it feels like to become inconvenient.

I know what it feels like when people decide that your pain demands too much from them.

Zoggie will not experience that from me.

I cannot promise that I will be able to produce $15,000. I doubt the bank will give me the loan. I cannot promise that the MRI will show something operable or that surgery will be the right choice. I cannot promise an outcome that is not mine to control.

I can promise that I will try.

I will research every option. I will save. I will work. I will sell what I can sell. I will ask for help even though asking is excruciating. I will make decisions based on Zoggie’s pain, prognosis and quality of life - not on somebody else’s belief that she is “just a dog.”

My dogs stayed when people left.

They love me without requiring me to be healthy, useful, entertaining or easy.

I will not abandon them for becoming difficult either.

I will not abandon Zoggie.

Not if I can help it.

There is now an enormous scientific and commercial industry devoted to solving “the opioid crisis.” And that industry depends, at least partly, on maintaining a particular story: opioids are dangerously addictive, fundamentally unsuitable for chronic pain and urgently need to be replaced.

The United States National Institutes of Health launched its HEAL Initiative in 2018, nearly doubling annual funding for opioid and pain research from approximately US$600 million to US$1.1 billion. By 2023, HEAL had invested approximately US$3.2 billion across more than 1,800 research projects. That is an awful lot of laboratories, salaries, grants, publications and careers attached to an “urgent public-health emergency.” (NIH, 2018; Karp et al., 2023)

This does not mean researchers are gathering in dark rooms, twirling their moustaches and plotting against pain patients.

They don’t need to.

The incentives do the work perfectly well.

Declare an existing treatment unacceptable and you create an urgent scientific problem.

Urgent scientific problems attract grants, investment, patents, clinical trials, prestige and promotions. They also create a potentially enormous market for whichever company produces the replacement.

That is not a conspiracy theory. It is an incentive structure. Its capitalism.

The awkward truth hidden in the sales pitch

A recent Science article asks: “Can a new, safer class of pain drugs ever rival opioids?”

It sounds like another story about escaping the horrors of opioid medicine. But the headline accidentally admits something important.

Opioids are extremely difficult to rival.

That is why scientists are still trying.

If opioids were useless painkillers, as some modern pain rhetoric would have us believe, there would be no need for new drugs to “rival” them. Researchers would merely need to produce something better than useless. Apparently, this has proved surprisingly difficult. (Science, 2026)

In 2025, the US Food and Drug Administration approved suzetrigine, marketed as Journavx, as the first drug in a new non-opioid class for moderate-to-severe acute pain. It blocks NaV1.8 sodium channels in peripheral nerves, interrupting pain signals before they reach the brain. Its manufacturer, Vertex, is investing heavily in its commercial launch and development across further pain indications. (FDA, 2025; Vertex, 2025)

Good.

We desperately need more effective pain medications. We need different medicines for different pain mechanisms, different bodies and different medical circumstances. We need options for people who cannot tolerate opioids and better treatments for people whose pain does not respond to them.

Research and development is good. Obviously.

But.

Developing new analgesics does not require pretending that existing ones do not work.

Nor does it require sacrificing the patients who already use them successfully.

How dangerous is an opioid prescription, really?

We are constantly told that prescribing an opioid exposes every patient to an intolerable risk of addiction and overdose.

The actual numbers are much less theatrical.

A 2023 systematic review and meta-analysis examined 28 observational studies involving almost 24 million patients prescribed opioids for chronic pain. It found a pooled prevalence of:

• 1.3 fatal overdoses per 1,000 patients

• 3.2 nonfatal overdoses per 1,000 patients

That is approximately 4.5 fatal or nonfatal overdose events per 1,000 patients prescribed opioids for chronic pain. Not zero. Not irrelevant. But a very long way from the impression that catastrophe inevitably follows the first prescription. (Wang et al., 2023)

More importantly, the risk was not distributed evenly.

Overdose was strongly associated with identifiable factors including a previous overdose, current substance-use disorder, multiple prescribers, multiple dispensing pharmacies, higher doses, certain mental-health diagnoses and particular medication combinations.

In other words, “a person prescribed an opioid” is not one uniform risk category.

That should be obvious. Apparently, it needed a meta-analysis involving 24 million people to elucidate.

A stable patient taking one medication, prescribed by one doctor and dispensed by one pharmacy is not medically interchangeable with a person obtaining drugs from multiple sources, combining them with sedatives or living with an active substance-use disorder.

Yet much public discussion places ALL of these people into one ominous bucket labelled “opioid users.”

Very scientific.

Can you say ‘bias’? ‘Stigma’? “Stereotyping’? ‘Profiling’?

For a well selected, well monitored, patient on long term opioid therapy the risk of overdose is very, very low. That’s what the evidence says.

Seems many pain management doctors are all so keen to advertise ‘evidence based treatment for chronic pain’ without ever reading the evidence.

Addiction statistics are a definitional swamp

The estimates of addiction following opioid treatment vary wildly.

That is not because addiction is a mysterious force capable of changing its prevalence depending on the phase of the moon. It is because researchers frequently measure different things and give them similar names. What constitutes ‘addiction’ varies wildly. And overdose statistics often include non-fatal overdoses. Or even overdose deaths where an opioid was detected, but NOT the main cause of death.

Some studies measure diagnosed opioid-use disorder. Others measure “abuse,” “misuse,” physical dependence, administrative billing codes, unexpected urine results, requesting an early prescription or vaguely defined “aberrant behaviour.”

NONE of these are the same thing. They are thrown together to inflate the outcomes. To keep the panic alive.

One 2018 meta-analysis reported an incidence of “dependence or abuse” of 4.7% among patients prescribed opioids for pain. But the included studies used different diagnostic systems and produced statistical heterogeneity of 99.78%.

For non-statisticians, that is roughly the scientific equivalent of throwing apples, wombats and garden furniture into a blender and reporting the average fruit content. (Higgins et al., 2018)

Physical dependence is an expected physiological adaptation to many medicines, including opioids. I don’t believe it’s avoidable. It means abrupt cessation may cause withdrawal. This is a normal response to suddenly stopping a medication. By choice or otherwise. It is NOT addiction.

Addiction - or opioid-use disorder - requires a pattern of use that involves impaired control, compulsive use or continued use despite harm.

A patient who takes a medicine consistently because it relieves severe pain, and improves their ability to function, is not demonstrating compulsive use despite harm. They are using a medicine for its intended purpose.

Needing ongoing insulin does not prove an unhealthy fixation on insulin.

Needing ongoing antihypertensive medication does not reveal a worrying psychological attachment to blood-pressure control.

Needing anti-depressants to live a functional life does not show a pattern of compulsive behaviour.

But needing ongoing pain relief? Suspicious. Apparently.

What happened when prescribing fell?

If medical opioid prescribing were the principal driving force of the US opioid epidemic, we should have seen precipitous reductions in prescribing to be followed by a substantial drop in opioid deaths.

But that is not what happened.

US opioid prescribing began declining after 2012. The percentage of adults filling an opioid prescription fell by 31% between 2008 and 2018, while the national dispensing rate continued falling to 35.4 prescriptions per 100 people by 2024. (CDC, 2020; CDC dispensing data)

Meanwhile, illegally manufactured fentanyl spread through the illicit drug supply.

The CDC reports that approximately 70% of US overdose deaths in 2023 involved illegally manufactured fentanyl. It states that illicit fentanyl entered the illegal drug supply around 2013 and subsequently replaced heroin as the dominant illegal opioid in the United States. (CDC, 2024)

Even the FDA now acknowledges that commonly prescribed opioids are no longer driving the opioid overdose epidemic. (FDA review, 2025)

That sentence deserves to be printed in very large letters.

And the truth that remains unsaid, and will never be admitted, is that prescription opioids were NEVER the driving force behind the opioid crisis. NEVER. It was always about illicit use. But prescription opioids are a much easier target than Mexican cartels and curbing illicit supply. Easy target, big wins, media headlines.

Who cares about the thousands or tens of thousands, more, who suffered and even died because their life saving pain medications were taken away? Very few.

Prescribed pain medication and illicit fentanyl are not completely separate worlds. There is some crossover. But most prescription opioid abuse if due to diversion. Yes, some people with opioid-use disorder were initially exposed to opioids through a medical prescription. But the vast majority of those already had a history of substance abuse.

And that crossover is very, very small. As can be seen from the major, large scale, systemic review already cited.

Stable therapeutic use, physical dependence, medication misuse, opioid-use disorder and exposure to an unpredictable illicit fentanyl supply are very different situations. Treating them as one big problem has not only failed to solve the illicit drug crisis; it has inflicted another crisis on people living with severe pain.

The patients who spoil the story

There is one group largely missing from the replacement narrative: patients for whom opioids work.

They are not getting ‘high’. They are not escalating their dose uncontrollably. They are not visiting six doctors or four pharmacies. They are not searching for euphoria.

They are searching for enough pain relief to shower, sleep, work, prepare food, care for their children…to keep living a full and functional life despite moderate severe pain due to disease or injury.

Some patients find opioids effective but not remotely pleasurable. Many experience nausea, itching, sedation or mental fog. Others experience pain relief with few side effects. Individual responses vary, as they do with every other class of medicine. For every person, it’s a case of weighting up costs and benefits.

Opioids have unpleasant side effects, but there are few things as unpleasant as living with constant, severe, pain. I’d prefer some itching and a bit of nausea than a knife twisting in every joint and my arms and legs feeling like they are on fire. What would YOU choose?

In people with chronic low-back pain, research as shown that those with more previous medical opioid use got greater pain relief from morphine…but they were no more likely to experience the non-pain effects associated with feeling “high.” In other words, stronger pain relief did NOT mean stronger euphoria. (Bruehl et al.)

But acknowledging these patients creates a problem.

If opioids remain effective and acceptably safe for a properly selected and monitored group, then the scientific mission is not “replace opioids.”

It is “develop more choices while identifying who benefits from each one.”

Still very worthy. Still very important. Still very deserving of funding.

But no longer a ‘crisis’. Just not quite as dramatic. Not as likely to receive that sweet, sweet funding.

Develop better drugs. Stop destroying patients.

To be clear, I am in no way saying that opioids are harmless. Opioids are great. Opioids for EVEYRONE!

No.

Opioids can have serious side effects. As I repeatedly state, patients need to be well screened, and well monitored, which in Australia they always have been. It has never been simple to access long term opioid therapy. But no? it’s near impossible.

They can cause adverse effects, physical dependence, respiratory depression, overdose and opioid-use disorder. Higher doses and dangerous medication combinations require particular care. Patients should receive honest information, individual risk assessment and proper monitoring.

Doctors are highly skilled and the very low overdose rate in chronic pain patients shows that doctors managed this risk very well. Right up until about 2016 in the US. And about 2020 in Australia.

But “has risks” is not synonymous with “must never be used.”

I take many high-risk medications to treat my complex autoimmune diseases. Many medications that are much higher risk than any opioid could ever be. Yet taking that risk is allowed. Encouraged. Even insisted upon. Why are opioids singled out and denied when Xeljanz or Rituximab are much more ‘dangerous’?

It makes no sense. Scientific sense, medical sense or common sense.

Ofcourse better pain medications should be funded. Safer analgesics is a lofty goal that should be celebrated. New treatments that are as good as, or even better than, opioids without opioid-related risks would be a genuine medical achievement.

BUT.

We should not be taking opioids away from those who need them, who have been stable and doing well for years, or even decades BEFORE those new pain medications are available. Leaving people to suffer needlessly, on the promise that something better is being researched.

Pain patients should not be treated like expendable research targets.

They should not be forced to surrender their pain relief, their functional lives, to fortify the commercial and scientific case for tomorrow’s medication.

Develop the alternatives.

Fund the research.

Build the careers.

Make the money, even. All good.

But STOP denying people who rely on long term opioid therapy for any kind of quality-of-life access to these medications. Put the risk/benefit equation where it belongs, where it is with all other medications – in the hands of the informed patient.

And STOP pretending that scientific progress requires opioids - and the patients who benefit from them - to fail.

You can see the post and video here.

It is certainly an interesting demonstration.

A young man sits at a table with his real arm hidden from view. A realistic rubber arm is positioned in front of him, roughly where his own arm might be. An experimenter strokes the hidden real hand and the visible rubber hand at the same time, in the same places and in the same rhythm.

After a while, the man says that it feels weird. The synchronised sight and touch have produced a temporary sensation that the rubber hand might somehow be his own.

Then the experimenter unexpectedly strikes the rubber hand with a hammer. The man jumps and pulls away.

It looks dramatic. It makes an excellent video.

But then the experimenter asks the most important question in the entire clip:

“You didn’t actually feel pain, did you?”

The participant answers:

“No.”

He did not feel pain.

Yet this video is being presented as a window into how pain is generated - and then extended still further into an explanation of chronic pain.

It demonstrates nothing of the sort.

But worse than a wrong explanation, it is then being promoted as a TREATMENT for chronic pain…and therein lies the patient harm.

What the rubber hand illusion actually demonstrates

The rubber hand illusion is a highly contrived experiment in body ownership.

The participant’s real hand is hidden. A plausible substitute is carefully positioned within view. The real and rubber hands are stimulated synchronously. Under those artificial conditions, some people report that the rubber hand feels as though it belongs to them.

When the apparently “owned” hand is threatened, they may produce an automatic defensive response.

That is very interesting. It tells us that our sense of limb ownership can be influenced by synchronised visual and tactile information when the source of those sensations has deliberately been made ambiguous.

But “that feels weird” is not pain.

A feeling of ownership is not pain.

Misjudging the location of your hand is not pain.

Anticipating that something might hurt is not pain.

Flinching from a visual threat is not pain.

The hammer never touches the participant. It produces no tissue injury and no nociceptive stimulus. The participant explicitly confirms that he feels no pain.

So how can this possibly demonstrate how pain is generated?

This is so very typical of pain science education research – design a cool experiment, very interesting, about neuroplasticity perhaps, or body ownership. Describe it, explain it, with the evidence base. THEN make the unsupported leap into how it shows that chronic pain is caused by…or can be treated by…

No one notices that there is no evidence, that the leap is a leap of faith, not logic or science. And people like and share and believe.

In relation to pain, it demonstrates almost the opposite

Consider what happened:

· The participant temporarily experienced some degree of ownership over the rubber hand.

· He saw a threat directed towards that apparently owned hand.

· He produced an immediate defensive reaction.

· He felt no pain.

Body ownership, threat anticipation and protective movement were all present. Pain was not.

The dramatic flinch is doing a huge amount of rhetorical work here. Viewers see it and intuitively interpret it as evidence that the brain has generated pain. But the participant did not report pain. The video shows a startle or defensive response to a perceived threat, NOT pain generation.

This is not the same thing. This experiment shows us NOTHING about pain, chronic or otherwise.

The disturbing part is not that Siokos finds the illusion interesting. It is that he makes an entire causal chain sound established without testing any link:

The participant flinched → the brain generated pain → chronic pain arises through the same process → the brain’s map is distorted → the map can be retrained → therefore this explains and treats chronic pain.

But the participant felt no pain.

The cortical-remapping theory is seriously disputed.

The illusion is confounded by expectation and suggestibility. Treatment responses are inconsistent. Almost every link is either absent or uncertain.

In fact, only the first link in that chain is supported by what we see: the participant flinched. Everything after that is theory and belief…and then presented as fact.

“It works on most people” does not solve the problem

Under carefully controlled conditions, a majority of participants report feeling some degree of the rubber hand illusion. But a substantial minority - approximately one-quarter to one-third in commonly cited estimates - experience no illusion at all.

The strength of the illusion also varies radically between people. It is far from consistent, proven, evidence based, fact.

More importantly, researchers do not always mean the same thing when they say the illusion “worked.” Define “worked”! It might mean that someone agreed slightly with a questionnaire statement, reported a strong feeling of ownership, or estimated that their hidden hand was a little closer to the rubber hand than it really was. There are no consistent measures, and they do not demonstrate the same things. And nowhere has anyone experienced actual pain.

But why ruin a good fun illusion with science. Why demand actual evidence. Why, because patients are being harmed by these beliefs.

Research has found that “proprioceptive drift” - the perceived movement of the real hand towards the rubber hand - can occur without a feeling of ownership. A feeling of ownership can also occur without meaningful drift. Conclusions about ownership therefore can’t simply be drawn from hand-location estimates.

Expectations and suggestibility are also important. In a study involving 353 participants, hypnotisability predicted commonly used measures of the rubber hand illusion, including reported ownership and altered hand location. The researchers argued that expectations about what the experiment was supposed to produce could partly drive participants’ experiences and reports.

That does not mean participants are pretending. Suggested experiences can feel completely genuine. It does mean that the rubber hand response is neither universal nor a simple, uniform neurological reflex - and that interpreting it is much more complicated than a viral video suggests.

But even if every human being experienced the illusion, it would remain an experiment about body ownership in which nobody felt pain. Even if the rubber hand illusion was a universal human experience, it would STILL say nothing about pain.

The enormous leap from a brief illusion to chronic pain

The LinkedIn post claims that in chronic pain, phantom limb pain and conditions such as complex regional pain syndrome, the brain’s body map becomes distorted and that this distortion “drives” physical symptoms.

That is not a small claim. The word “Drives” is a causal claim. A distorted body map is the cause of this pain.

The rubber hand experiment does not establish that causal relationship.

It does not involve a person with chronic pain.

It does not produce pain.

It does not measure the onset or maintenance of pain.

It does not show that a changed body representation causes anything to hurt.

At most, it shows that healthy people’s sense of hand ownership can be temporarily manipulated when visual and tactile information is carefully engineered to conflict.

Moving from that observation to “distorted body maps drive chronic pain” requires several leaps that the evidence does not support:

1. From altered body ownership to pain generation.

2. From an immediate, reversible illusion to a long-term pathological process.

3. From a laboratory response in healthy people to chronic pain in people with injury or disease.

4. From an association between pain and body perception to a claim that altered perception causes the pain.

5. From temporary sensory manipulation to the promise that chronic pain can be retrained away.

None of those steps is demonstrated by the video.

Yet people liked and applauded and wrote glowing comments about the video. Did they even watch the same video I did?

The distorted body-map theory is itself seriously disputed

There is another major problem. The claim rests upon an older theory of “maladaptive cortical remapping”: after a limb is amputated, neighbouring body representations supposedly invade the missing hand’s cortical territory, and this distorted map supposedly generates phantom-limb pain.

That theory became extraordinarily influential. It was repeated in pain education and used to justify treatments intended to correct the damaged or distorted map.

Actual treatments based on nothing more than theory. Where have I heard this before…

But more recent research using improved methods has placed it in serious doubt.

High-resolution imaging has detected detailed representations of the missing hand and individual fingers in the original hand territory, even decades after amputation. The characteristic relationship between the fingers can remain preserved. Studies have found that hand and face representations remain relatively stable and that the small shifts sometimes detected are not associated with phantom-limb pain.

Some research has even associated greater phantom pain with preserved structure and function in the former hand area…NOT with that area being overtaken by the face.

In their 2023 review, Against cortical reorganisation, Tamar Makin and John Krakauer wrote that human research has not identified compelling evidence for facial activity invading the missing-hand cortex. They also reviewed evidence that detailed missing-hand representations can remain intact despite years of sensory deprivation.

This does not mean that the adult nervous system never changes. It means that the simplistic story -“the hand map becomes distorted, and the distortion causes pain” - cannot be treated as established fact. It wa NEVER established fact. It was one man’s theory. And he used excellent marketing to make people believe the evidence showed a lot more than it actually did. And people started using treatments based on this idea, that could NEVER help a person in chronic secondary pain. But that’s what happened. THEREIN LIES THE PATIENT HARM for those who repeatedly say I’m exaggerating ‘harms’.

Try being a patient and being given pseudoscientific treatments when you go to physio. Try paying hundreds of dollars for said treatment. and then being blamed for not working hard enough when it inevitably does nothing to reduce your pain. I think THEN you’d realise the harm.

Bottom line?

It was a theory. It remains disputed. Yet it continues to be presented to patients as settled neuroscience. And it forms the basis of treatments that CANNOT POSSIBLY reduce chronic secondary pain.

Phantom-limb pain does not prove that pain needs no nociception

Phantom-limb pain is routinely invoked as proof that the brain can create pain without nociception because the painful limb is no longer there. It sounds logical…unless you think about it for more than one second.

The limb is absent; the person’s nociceptive system is not.

Amputation can leave injured nerves, neuromas and abnormal activity within the residual peripheral nerves, dorsal-root ganglia, spinal cord and other surviving parts of the nociceptive system. Feeling pain in the perceived location of a missing limb does not prove the complete absence of nociceptive activity.

In a recent paper in Brain, Asaf Weisman, John Quintner and Milton Cohen critically examined the familiar statement that “nociception is neither necessary nor sufficient for pain.” They concluded that the evidence offered to show pain occurring without nociception does not withstand examination. Their proposed correction is simple: nociception is necessary, but not sufficient, for pain.

Something I’ve been saying for the best part of a decade – there’s just no evidence that you can have pain without nociception. Now, Asaf and colleagues have provided the evidence…that there is no evidence.

And again, entire treatments have been based on the idea that you can have pain without nociception. Treatments that cannot POSSIBLY reduced the chronic pain. And again, patients are harmed. All by these same research group that founded a very profitable industry based on THEORY, that is still unsupported by actual evidence.

Weisman commented beneath the rubber hand post itself:

“The rubber hand phenomenon … has nothing to do with pain or how ‘pain is generated’.”

He is right. And that distinction matters because patients are being harmed. Not for academic kudos, not for career progression, not for patient money…because people living with painful, progressive, incurable disease and injury are being TORTURED further, with these unfounded ideas.

Pain is not a direct measurement of tissue damage, and nociception does not invariably produce pain.

Obviously. Everyone who is alive knows this, has experienced this.

The scientific explanation? Context, attention, prior experience, competing sensory information, descending modulation and many other biological processes can influence the pain experienced from nociceptive activity.

But modulation is not generation from nothing.

And modifying pain is not the same as removing its cause.

Mirror therapy and graded motor imagery do not validate the story

The post claims that mirror therapy and graded motor imagery use “this exact mechanism” to reduce pain.

Again, that is much more certain than the evidence shows.

Some studies report that mirror therapy or graded motor imagery helps some people with particular pain conditions. Other patients do not respond. The evidence is limited, heterogeneous and condition-specific, and proposed mechanisms remain uncertain.

If an intervention sometimes reduces reported pain, that does not prove the theoretical explanation offered for its effect.

A treatment may alter attention, expectation, movement, fear, sensory discrimination or the meaning attached to an experience. It may produce contextual or placebo effects. Symptoms may fluctuate or improve naturally. Different people may respond for different reasons.

Clinical benefit, when it occurs, does not prove that a distorted cortical map existed, caused the pain and was then corrected by the treatment.

That causal chain has to be demonstrated…or it should have been. Instead, it has been simply assumed.

There is a particularly awkward contradiction here. We are told that because the rubber-hand experiment can “rewrite” a body map in two minutes, chronic pain can be treated by retraining a distorted map. Yet modern research suggests that the canonical hand representation may remain remarkably stable even after amputation.

The proposed therapy is therefore promoted as repairing a neurological defect that researchers have increasingly failed to find.

Why this false equivalence is not harmless

For many observers, the rubber hand illusion is a fascinating piece of neuroscience: a clever video, an opportunity to marvel at the brain and then move on with their day. It’s a bit of fun. Cool. I get that.

Patients do not have that luxury.

These theories shape clinical care.

When an illusion of body ownership is falsely presented as evidence about chronic pain, it encourages clinicians to treat vastly different phenomena as equivalent.

A temporary laboratory illusion in a healthy volunteer becomes an explanation for pain arising from inflammatory arthritis, nerve injury, spinal disease, endometriosis, cancer or other ongoing biological pathology. And it still boggles my mind that highly trained, well-educated clinicians believe this stuff, and actually apply it to people with pathological pain. And have completely failed to check the evidence supports the claims. And changed their clinical practice on a fun stage show.

The clinical consequences for the patient are huge, and can include:

· continuing nociceptive causes being minimised or overlooked;

· appropriate investigation and treatment being delayed;

· effective analgesia being withheld;

· patients being told that their brains have learned pain or become overprotective;

· failure of “retraining” being attributed to fear, beliefs or insufficient effort;

· patients losing trust in their own bodies and reports;

· clinicians becoming overconfident in an elegant but unproven explanation;

· and people remaining in severe pain while being offered education and perceptual exercises in place of adequate medical care.

That is why the inferential leap matters.

This is not an argument against studying perception. It is not an argument against offering mirror therapy or graded motor imagery to an appropriately selected and fully informed patient who wants to try them. Nor is it a claim that cognition, context and sensory information can never influence pain.

It is an argument for saying only what the evidence demonstrates.

The rubber hand illusion demonstrates that, under highly artificial conditions, some people can temporarily experience a fake hand as belonging to them.

It does not demonstrate the generation of acute pain.

It does not demonstrate the generation of chronic pain.

It does not show that chronic pain is caused by a distorted body map.

It does not show that pain from ongoing injury, inflammation or disease can be retrained away.

And the participant tells us so himself.

“You didn’t actually feel pain, did you?”

“No.”

That should have been the END of the claim.

References

· Siokos T. The Rubber Hand Illusion: How the Brain Builds Your Body. LinkedIn, 2026.

· Makin TR, Krakauer JW. Against cortical reorganisation. eLife. 2023;12:e84716.

· Kikkert S, et al. Revealing the neural fingerprints of a missing hand. eLife. 2016;5:e15292.

· Wesselink DB, et al. Obtaining and maintaining cortical hand representation as evidenced from acquired and congenital handlessness. eLife. 2019;8:e37227.

· Root V, et al. Complex pattern of facial remapping in somatosensory cortex following congenital but not acquired hand loss. eLife. 2022;11:e76158.

· Makin TR, et al. Reassessing cortical reorganization in the primary sensorimotor cortex following arm amputation. Brain. 2015;138(8):2140–2146.

· Weisman A, Quintner J, Cohen M. Adieu to an aphorism: why nociception is necessary for pain. Brain. 2026;149(2):422–431.

· Rohde M, Di Luca M, Ernst MO. The rubber hand illusion: feeling of ownership and proprioceptive drift do not go hand in hand. PLOS ONE. 2011;6(6):e21659.

· Lush P, et al. Trait phenomenological control predicts experience of mirror synaesthesia and the rubber hand illusion. Nature Communications. 2020;11:4853.

· Zbinden J, Ortiz-Catalan M. The rubber hand illusion is a fallible method to study ownership of prosthetic limbs. Scientific Reports. 2021;11:4423.

· Bowering KJ, et al. The effects of graded motor imagery and its components on chronic pain: a systematic review and meta-analysis. Journal of Pain. 2013;14(1):3–13.

But scans can show damaged, inflamed, compressed or degenerating structures that are capable of causing pain. In fact very likely to be causing pain. And despite the endlessly repeated claim that “scans don’t correlate with pain,” the evidence does NOT show that structural findings are universally meaningless…as some people interpret this statement to mean.

The evidence does show that for many conditions, the type and severity of pathology affect the likelihood that it is painful. But that’s the quiet part that some researchers don’t want said out loud.

For several musculoskeletal conditions and imaging findings, the data shows increasing severity of damage IS associated with a greater likelihood, frequency or severity of pain. And that, somehow became “MRIs don’t show pain”. And now, it has been repeated so often, it is treated like fact.

Now watch what happens when the scan is normal.

Suddenly, the scan that “cannot show pain” becomes powerful enough to rule out a physical cause for it.

Nothing significant appeared on the scan; just lots of things that most people have. Therefore, there is no structural explanation for your pain.

Therefore, your pain must be nociplastic.

Your nervous system must be hypersensitive.

Your brain must be overprotective.

So apparently, scans cannot be used to establish that a physical abnormality IS causing pain - but they can be used to establish that a physical abnormality is NOT causing pain.

How convenient.

If the scan shows damage, the damage may be dismissed as incidental: just “wrinkles on the inside.” Pain is nociplastic.

If the scan does not show damage, its absence may be treated as proof that the pain is not structural. Pain is nociplastic.

Either way, the interpretation favours the clinician’s preferred explanation – pain is nociplastic.

The patient with structural pain can never win.

No matter what the argument is circular. And the clinician can dismiss the physical finding, or lack of physical finding. BOTH states lead to nociplastic pain. Which is very easy for them to manage. Just refer to psych and physio. That’s it.

No further diagnosis. No further investigations required. No further effort required.

The patient, however, is now trapped in a treatment cycle that does not help their structural pain.

If they refuse, they are non-compliant.

If they say that pain science education is not helping, they aren’t trying hard enough, they are not willing to learn, they want the easy way out…they are a drug seeker.

If they insist that the pain is due to structural damage, not their nervous system, they are ‘stuck in biomedical thinking’.

When really, their pain is not nociplastic. There IS structural damage causing pain that is nociceptive and/or neuropathic. The far more common types of chronic pain (from the precious little evidence that exists on the topic. Bizarre that something so important is just…not studied).

Pain science education does nothing for structural pain. But the patient is often still blamed.

True, not every abnormality visible on a scan is painful. But it is simply false to claim that imaging findings and pain do not correlate. Evidence shows the relationship depends upon what is imaged, how pathology is defined, its severity and location, how many structures or spinal levels are affected, the person’s symptoms and whether the study has very common minor age-related findings lumped together with much more rare, advanced disease.

Mild abnormalities are common and often painless. Severe abnormalities are much less common - and far more likely to be painful. When researchers collapse both into a single category marked “abnormal scan,” the huge number of mild findings can dilute the signal from the relatively small number of people with severe disease.

The absence of a strong correlation in such an analysis does not prove that severe structural pathology is irrelevant. It may prove only that the researchers asked an anatomically crude question. Or perhaps designed the study in such a way as to find that MRIs findings don’t correlate to pain.

It is not a binary question. When researchers reduce structural disease to “present” or “absent,” they ignore severity. Another very common tactic in chronic pain research. BUT severity matters. It matters very much. But that’s inconvenient so they remove severity from the analysis.

An abnormality may also be causing considerably more pain than the clinician thinks it “should.”

And who decided what amount of pain is reasonable?

That is not something the MRI can reveal. Remember: scans don’t show pain.

It is a clinical judgement. But if scans don’t show pain, what are they basing their clinical judgement on? Also, clinicians can be wrong. They can underestimate pathology. They can misunderstand the condition. They can carry biases about pain, disability and the patient in front of them. They can simply be poor clinicians. Or having a bad day.

MRI itself is not infallible. The relevant pathology may not be visible. The wrong area may have been imaged. The imaging technique may be inadequate. A radiologist may overlook a finding or interpret it differently from another radiologist.

I have had MRIs reread by different radiologists who reached completely different conclusions.

I have also had surgery after imaging suggested that the damage was mild. Once the surgeon was inside my shoulder, she found that it was anything but mild…the tear was much longer than MRI showed, and my biceps tendon was torn completely off the bone. She photographed the damage to document why the operation had taken an hour and a half longer than scheduled.

The scan had underestimated what was actually happening inside my body. The scan was not accurate.

So let’s be precise.

A scan does not prove that a person is in pain.

A scan does not prove that a person is NOT in pain.

An abnormal scan does not automatically identify the cause of pain.

But a “normal” scan does not automatically exclude physical pathology either.

And deciding that the pain is “disproportionate” to the scan is not an objective measurement. It is one person’s opinion about how much another person ought to hurt, based on an image that - according to the profession’s own warning - does not show pain.

That is the paradox.

Scans are supposed to be ordered when there are red flags or there is suspicion of serious pathology, or imaging would change how the pain is managed.

Scans are just one part of the clinical picture. But they can be necessary and informative.

A scan is one piece of evidence. It is not a verdict.

An abnormality should not automatically be declared the cause of pain. But neither should it automatically be dismissed because similar, but much milder, findings have been observed in some people without pain.

But in practice, even when imaging may be genuinely useful, patients are increasingly told that scans are unnecessary or unhelpful.

“Imaging does not always correlate neatly with pain” has been reduced to “scans don’t show pain”…and then distorted further into “scans are not useful when investigating pain.”

Once again, those are not the same thing.

Once again, in pain science, a nuanced principle has been flattened into a slogan…and the slogan has begun to replace clinical reasoning.

Scans don’t show pain when the findings support the patient.

But when the scan can be used to dismiss the patient, suddenly it is treated as if it tells clinicians everything they need to know.

“Scans don’t show pain” may have begun as a reasonable warning against over ordering and overinterpreting imaging. But it has become a weapon: one that minimises structural disease, justifies withholding further investigation and makes cheaper, psychologically focused care easier to prescribe.

And, most importantly of all, justifies doctors’ refusal to prescribe opioid pain medications.

The scan is never allowed to validate the patient.

It is only allowed to overrule them.

Now I don’t have the physical ability.

If you are rolling your eyes - if you are already thinking, She could do it if she really wanted to. She’s just not trying hard enough. She’s being negative. You are wrong.

I would love to go hiking.

I wanted it badly enough that I used my NDIS funding to hire a support worker to train with me. The goal was to take me from barely being able to walk any distance at all to hiking with trekking poles.

I decided I was going to do it.

If anyone could do it, I could.

So we trained. We walked.

We never hiked. We never got that far.

At my best, I managed a few three-kilometre suburban walks and several two-kilometre walks. I was trying to build from there, but every time I began to make progress, I was stopped by a massive flare or worsening neuropathy.

I would lose the ground I had gained.

Then I would get back up and begin again.

I would work until I started regaining that ground. I would work and work and work…and then another flare would hit.

And I would rest. And recover. And I would start again.

And again.

And again.

In the beginning, my training sessions lasted about an hour. I was hoping to work up to hiking for four hours. I wanted to climb a real hill, reach a real view and take photographs of a landscape I had earned the chance to see.

Neither the photography nor the hike was more important. They were the perfect union of two things I love: photography and freedom.

After seven months of this cycle, my support worker told me she was perfectly happy to continue. That wasn’t the problem.

But she needed to check whether I understood that I wasn’t making progress.

We continued.

After nine months, I had to admit that I wasn’t merely failing to progress.

I was going backwards.

I could now do less than I could when we began.

My arthritis was relatively stable, but my neuropathy was getting worse. I was still taking a moderately high dose of prednisolone every day. I was still having IVIG infusions at the highest dose, and the highest frequency possible. And still… I was going backwards. Prednisolone alone had once given me enough function to walk for an hour.

Now I could walk for only 30 minutes.

With pred, IVIG, methotrexate…all of that on board.

And when I finished that 30-minute walk, I would collapse for the rest of the day.

I hadn’t allowed myself to see it because I didn’t want to see it.

I was not “giving in.” I was the last person willing to accept what my body had already showed me.

I have worked so damn hard.

I have pushed as hard as any person can push.

I set a meaningful goal. I found support. I trained consistently for nine months. I progressed whenever my body allowed it. When a flare erased that progress, I began again. When it happened again, I began again. And again. And again.

Effort was not the missing ingredient.

Motivation was not the missing ingredient.

Positivity was not the missing ingredient.

Determination was not the missing ingredient.

Discipline, resilience and courage were not the missing ingredients.

I have a progressive, painful, incurable disease.

And it is winning.

.

.

.

There is no amount of determination, motivation or moral character that can change that. I am pursuing every possible disease-modifying treatment. I am doing everything medicine tells people like me we should do.

But my nerves continue to deteriorate.

My joints continue to deteriorate.

At the same time, doctors’ refusal to prescribe enough pain relief to adequately manage my pain has taken even more of my function from me.

My disease is potentially disabling…but undertreated pain is truly what has disabled me.

Before my opioid dose was reduced, I could work a six-hour day. I could jog five kilometres. I could exercise in the gym for an hour.

I cannot do those things now.

Had I been allowed to keep my pain relief, I could have kept up my exercise. Kept up my muscle strength. Kept up my muscle mass. No one reasonable can argue different.

The loss of movement has increased my blood pressure, my blood sugar, my resting heart rate and my bodyweight. Those consequences were entirely predictable. And preventable.

That is what rigid adherence to opioid guidelines has done for me.

Doctors followed the recommendations without ever stopping to ask whether the underlying science was sound…or whether the treatment decisions they imposed were destroying the life and function of the person sitting in front of them.

This is not an abstract policy debate to me.

This is my body.

This is my life.

This is everything I used to be able to do.

I am grieving the hike, but I am not only grieving the hike.

Hiking represents freedom. Beauty. Photography. Physical competence. Strength. Fitness. Independence. It represents the future I thought determination might still win back for me.

But while determination is a most powerful force…it is not enough.

I am also grieving the person I used to be. The person who achieved supposedly impossible things through sheer grit.

Grit has always worked for me.

I have reached goals through sheer determination when other people told me I couldn’t. When other people bailed and quit and said it couldn’t be done. I persevered. I have always believed that if I wanted something badly enough and worked hard enough, I could find a way.

Now I have encountered something that determination cannot defeat.

Disease.

And that is profoundly destabilising. One of my greatest strengths - my refusal to give up - cannot stop progressive neurological disease.

There is no amount of “pushing through” that will get me to the top of that hill.

Pushing through does not restore sensation to my legs.

It does not reverse muscle weakness.

It does not give me back my balance.

It does not stop the neuropathy.

It does not take away the pain.

It simply damages me further and leaves me collapsed for the rest of the day.

How do you think it feels to live in a body that is deteriorating…and deteriorating quickly?

And how do you think it feels when people DENY this is happening. That it is all in my head. That I am exaggerating. That I am malingering. Attention seeking. Drug seeking. How do you think that feels?

When your closet friends, and family, scoff…or worse…didn’t even hear you speak. Don’t know what your diagnosis is. And wouldn’t even google it if they did.

My neurologist wants little to do with me because, to him, I represent failure. I think he cares. But he cannot fix this, and he does not like looking at it. I am the dirty little secret of medicine…doctors are incredible, medicine is incredible…but some things can’t be cured.

He is glad when I leave. He asks me to make another appointment in four months because that is his duty. It may feel like penance. But it is my life. And the appointment will be the same as the last five appointments…you are at the end of your treatment options. There is nothing more I can do. We will continue to monitor and blah blah blah blah blah.

But of course, I am not dying. I am not terminal. And for that I am eternally grateful. But I am not living, either. And I cannot get better. And I cannot get support. Because…

Other people don’t like looking at it either.

They would rather tell me, “Of course you can!” than accept reality.

They think they are being encouraging. They think positivity is kindness.

But sometimes “Of course you can” is not encouragement.

Sometimes it is denial.

Sometimes its pressure.

Most often, its disbelief.

It denies the evidence of my body. It denies the extraordinary effort I have already made. It turns my physical inability into a failure of belief. A failure of willpower. A moral failure.

It allows other people to preserve the comforting fiction that enough grit can overcome any disability.

If I accept the reality of my body, I am accused of being negative.

If I cannot overcome progressive disease through determination, I am accused of not trying hard enough.

Would you say “Of course you can!” to someone who had lost a leg?

Both of my legs lack sensation. Both have muscle weakness. I cannot balance properly. I cannot walk unassisted. But you think I should be able to run. By sheer force of will.

And then there is the pain.

I know how hard I can push. I know what I can endure. I know what determination has allowed me to achieve before.

My children know too.

They are the only people who know.

They are among the few people who believe me because they have lived with me. They have watched me work. They have watched me try. They have watched me fall, recover, start again and lose the same ground over and over. They have watched me persevere...and never quit.

They have seen the truth.

I want to hike more than almost anything.

I cannot hike.

That is not negativity.

That is not laziness.

That is not fear, catastrophising, avoidance or a lack of motivation.

That is the truth.

This is reality.

Wanting something intensely does not make it physically possible. Trying harder cannot always defeat disease. Recognising an irreversible limitation is not the same thing as surrendering to it.

Losing the ability to hike is one injury.

Being morally judged for that loss, after working harder than most of the people judging me could ever comprehend, is another. A worse injury. The moral injury of judgement.

I want to hike.

I can’t.

And perhaps the cruellest part is that so many people would rather believe I am faking than confront what disease can do to a person who never, ever, stopped trying.

They understand all of this beautifully. They voice their understanding and sympathy over and over.

Until your disability inconveniences them.

A while ago, an old friend from work was having a big celebration in Sydney for their 50th birthday. They’re a bit younger than me. This was a milestone birthday they wanted to celebrate. I wanted to celebrate too. They wanted me to come.

Sydney is approximately three and a half hours from me by car. To an able-bodied person, that probably sounds manageable. Like nothing, in fact. Get in the car, drive to Sydney, attend the celebration, stay overnight and drive home the next morning.

One weekend. No big deal. Lots of fun!

Except disability changes the arithmetic.

I couldn’t safely drive for three hours, attend a party and then drive home the next morning. I would need to travel up the day before. Then I would need the day of the celebration. After that, I would need a day to recover before I could attempt the drive home.

That meant three nights of accommodation in Sydney. If al goes well. If the party induces a megaflare, I would have to stay another day. Very possible, but not definite.

Three nights in an unfamiliar, uncomfortable bed without all the things I use to make sleep slightly less impossible: my carefully arranged pillows, heated throws, heat packs and everything else I need to support a body that is in severe pain all the time.

It would mean taking extra pain medications, to get through the long weekend. My pain medications are rationed and counted and taking extra is not something I can just decide to do…for a party. YOU try explaining that to my pain doctor. “Oh, yes I need more meds because I went to a party, that’s OK, right?”. See what she says.

It meant three days away from my dogs.

It meant petrol, accommodation, meals and other travel expenses I simply could not afford.

People suggested that I could take a bus, as though sitting upright in a bus for four hours would somehow be easier on my body than sitting in a car. It wouldn’t. it would actually be worse. I would be trapped in an uncomfortable seat, possibly squeezed up against another person. Unable to stop when I needed to, without the ability to change position properly or manage my pain privately. In a car, I can stop when I need to. Get up and walk around for a while. And then continue on. Yes, it might take me five hours to get there, but I would arrive in better shape. I hve no such choices on a bus. Also, the journey itself is just one problem. It is not the whole problem.

It reminds me when my GPs solution to my unmanaged pain was taxi vouchers. So I wouldn’t have to drive to medical appointments. Hmmmm…I see you are misunderstanding the actual problem…

And once I arrived, I would still need transport. So taking the bus would add another expense without solving the actual problem. And, even if I took the bus, I would still need to rest after a day of travel. No way I could attend a party after that. Not anymore.

Then there was the celebration itself.

I would know nobody there, except the birthday girl. I would be trying to manage severe pain in an unfamiliar environment, probably without anywhere suitable to sit. It would be standing room only. I have a walker, and it has a seat that is viable for a while. But not for several hours during a party. She also implied that my walker takes a lot of room…it might be awkward for me. Surely a walking stick, a cane, would be better?

Better for whom? Better for her. Certainly not for me. A cane helps with balance, when balance is still reasonably good. My rollator takes my weight, I lean on it to walk, and it helps me stay upright, especially while walking. I have very poor balance. I will fall without it. And what is this concern really about…is she worried about me taking up too much space? Or is she embarrassed to have a friend who uses a rollator, like an 80-year-old? I have no idea what the play is here. But, if that’s the case, why even invite me?

I did ask about seats, my friend just laughed…and said nothing further.

Ok.

I would be expected to socialise, smile and appear happy. I am an introvert. I am shy. I would need to drink alcohol to socialise, which is not recommended on the meds I am on. I would likely not spend any time with my friend, it’s her party, she would need to work the room. Socialise, and be the centre of attention, as is her wont. It’s her party and she enjoys that, and good for her. She absolutely deserves a celebration in her honour.

But I? Would be watching the clock because I usually got to bed at 7pm, when the toddlers do.

Yes, between 7pm and 7:30pm every night. I am not exagerating. My pain meds run out by 7pm, sometimes earlier. I have to lie down, because lying down is slightly less painful than standing or sitting up. I go to bed at that time, because I have to. I do NOT CHOOSE to. Yet, for this party, I would need to be standing, in a cocktail dress (and flat heeled doc martens). Uncomfortable. Alone. With no circle to join.

I am an introvert. Unless an extravert takes me under their wing, I am useless at making small talk. Unless I get drunk. Then I am the life of the party.

But I would not get drunk. Those days are long gone.

Do you see established groups, friends of man years, including the strange woman with the walker? Let me tell you: they won’t.

You see my problem, I’m sure.

For the birthday person, it was one evening.

She thought she was asking me to attend one nighttime party. Even though she knows I haven’t been out after dark in over a decade. We’ve talked about this. She knows I am in bed by 7pm. I guess she thought I was making that up. I guess she thought I was exaggerating. Whatever. Clearly…she did NOT believe me.

Does not believe me.

For me, it was three days of travel, preparation and recovery. Possibly longer if the trip triggered a major flare. It was several nights of worse or no sleep, a significant financial cost and an enormous physical cost.

So…I didn’t go.

I sent a small, thoughtfully chosen birthday gift instead.

It was never even opened.

That told me more than I wanted to know.

Just “lift”

People understand disability in principle. They understand it right up until your limitations prevent you from giving them something they want.

Then you are expected to “lift.”

You are expected to push through.

Make an exception.

Find a way.

For them. To prove how much they matter. How important they are. How much you care.

What they never seem to calculate is the cost of that proof.

They saw a birthday celebration. One night.

I saw travel, accommodation, money I didn’t have, nights without the equipment I need, severe pain and days of recovery. Possibly a week or more. I saw the truth, how hard this would be for me…the truth was, it was not possible for me to do.

And all of the cost and risk belonged to me.

And she did not care one little bit.

I was required to injure myself and spend money I could not afford to demonstrate my love, my dedication, my enduring friendship. That’s what she expected of me. Her disabled friend.

Now I say to them:

Why wasn’t the friendship demonstrated by them saying:

“Of course you can’t travel that far.”

“Please don’t make yourself sicker trying to come.”

“We’ll find another way to celebrate together; we’ll have a drink next time I’m in town.”

“I know you care about me, and you don’t need to break yourself to prove it.”

That would have been understanding.

That would have been friendship.

Instead, my absence was treated as a personal rejection. An insult. A personal affront that I did not attend her birthday party.

Never did she consider that I was physically incapable of attending. She, like so many others, thought I was making a choice. That being in constant, severe, pain is a choice. That I can simply “unchoose”. When I want to. IF I want to badly enough. IF I am prepared to do the work.

Many people think chronic pain is psychological. Its not. They get this idea from the media, from thought leaders pushing flawed theories that he media elevates into fact.

That was when I learned the difference between people who understand disability and people who merely tolerate it…until it becomes too convenient. Until I become too inconvenient.

Disability is not a test of love

A disabled person’s capacity does not mysteriously expand because an event matters to you.

We cannot always “find a way.”

We cannot always “lift”. We are already working at 100%. Every day. There is nowhere to “lift” to.

We cannot summon extra energy through love, determination or positive thinking. Sometimes there is no hidden reserve. Sometimes attending your important event means sacrificing our health, sleep, money and function for many days afterward.

That does not mean we don’t care.

And refusing to make that sacrifice is not selfish. Its self-preservation.

Friendship should not require disabled people to repeatedly prove their love by harming themselves.

It should not require us to hide our pain, suppress our reality and perform “positivity” so that nobody else’s mood is disturbed.

I was not “bringing bad vibes.”

I was living through an appalling period of my life while severely disabled and in constant pain. I needed a friend who could understand that pain. Understand the reality of how pain and disability affect my life. Understand what I am, and am not, capable of.

A friend would have listened for the last decade, watched my decline and hurt for me. They would never have demanded I perform on command for them….just one more person at their parade. A friend would have known it was no longer possible for me to travel…even if its ‘only three hours down the road”.

Instead, I was expected to be an enthusiastic audience for somebody else’s happiness while keeping everything difficult about my own life out of sight.

“Surely a cane would do?”. That said it all.

When I could no longer perform, the friendship ended.

For a long time, I thought I had lost a friend because I could not attend an important celebration.

Now I think the friendship ended because my disability finally inconvenienced them too much…and I refused to sacrifice my body to make their inconvenience disappear.

Because showing up and being superhuman, just for them, would not have brought gratitude. Trust me, I know. I have made this mistake before.

It would have brought:

“SEE? I KNEW you could do it!!! If you just want it bad enough, you CAN do it!”

That’s what pushing myself beyond my limits gets me…insistence that I’m not actually that sick. That I CAN do anything I set my mind to. Of course, they are not there the next morning as I lie on the floor throwing up because of pain. No, not because I drank too much. Because of pain. Lack of sleep. Pushing my body too far. Pain.

I made the right decision. Even though that was the last time we spoke.

People who love you do not require you to hurt yourself to prove it.

It does not mean that biological, psychological and social factors are always present, always relevant, or equally important.

And it certainly does not mean that every patient with chronic pain needs psychological treatment.

Yet, this is what is happening in chronic pain treatment, in the real world. First line treatments are pain science education, and psychology. Even where pathological causes of pain have been clearly established, and psychological influences have not.

The BPS model should individualise assessment - not universalise psychology.

What the BPS model actually means

In simple terms, the BPS model says pain is about more than physical damage and tells clinicians to look beyond biology when assessing a patient.

That means asking:

• Are there psychological factors that may be affecting this person’s pain or functioning?

• Are there social circumstances that may be contributing to their distress or disability?

• Are those factors causes, consequences, or both?

• Are they relevant to this particular patient?

• Do they need treatment?

That’s it.

It means clinicians should look.

It does not mean they should assume the presence of psychological factors. And it means they absolutely should NOT assume that every patient needs pain science education and/or psychological treatment.

And yet, this is what is happening in ‘modern pain care’. Certainly in Australia, in 2026.

The International Association for the Study of Pain describes the biopsychosocial framework as recognising that the relative contribution of biological, psychological and social factors varies between patients, and varies over time. That is very different from treating psychological factors as universal or automatically central. IASP

Some pain is dominated by biology

Some people have pain that is dominated by a clearly identifiable biological problem.

Severe hip osteoarthritis is an obvious example.

The joint is damaged. The person has pain, stiffness and restricted movement. They undergo hip replacement, the damaged joint is replaced, and most people experience major pain relief.

That is evidence that the hip pathology was a major and treatable driver of their pain.

This is evidence that their pain was predominantly biological and psychosocial factors were not large contributors.

This does NOT mean I am stuck in the biomedical model, as some people like to critique. No, it means the pain was mostly due to the damaged joint. Fix the joint, fix the pain. Sometimes, many times, that’s how chronic pain works.

More rarely, in the minority of cases, surgeons fix the joint and the pain persists. Clearly the joint was not the primary problem.

But how often does this happen? If you listen to most pain science education evangelists (of any brand), you would be excused for thinking hip replacements failed most of the time.

But that’s not true.

Evidence shows most of the time, the pain resolves with hip replacement surgery. The large majority of patients had chronic pain that was predominantly due to biology.

They needed surgery.

They did not need education about the neuroscience of pain, or psychological treatments.

When a patient does not need psychological treatments or pain science education, they should not be forced into these therapies. Often, they are not necessary.

This does not mean that the surgeon failed to consider the whole person.

It is evidence that, in that particular patient, a biomedical intervention addressed the dominant pain generator.

It does NOT mean that all hip pain is predominantly biological and requires surgery.

The point is, each patient needs to be assessed individually. And clinicians should never assume psychological factors are present. Or require treatment.

This is the study:

Patient-level clinically meaningful improvements in activities of daily living and pain after total hip arthroplasty: data from a large US institutional registry

The commonly cited figures for hip replacement show that around 91–94% of people with moderate or severe preoperative pain report little or no arthritis-related pain several years after surgery. That is not exactly evidence that 90% of people have purely “biomedical pain”. But it is indicative. And it is evidence that hip replacement is highly effective for the chronic pain caused by severe hip arthritis.

That is a good thing.

Not all pain is equally complex. Not all pain requires a complex, multidisciplinary (with multiple practitioners) team, psychologically informed treatment programme.

Sometimes the biological problem is easily identified and effectively treated.

If that pain had a significant psychological component, surgery would not substantially reduce or cure the pain. And, unfortunately, for about 10% of people that’s true. 10% of people have ongoing persistent pain after hip replacement.

10%

A small minority.

Again, pain science education proponents would have you believe that MOST pain cannot be resolved with surgery, procedures or medications. Be very wary of those claims.

Many, many researchers, doctors, politicians and publications state that most chronic pain has NO biological cause. Be very wary of THOSE claims. There’s never a citation, and I can find no evidence this is true. Just the opposite.

Because I have been looking into the evidence. And there isn’t much. But so far? Most chronic pain IS biological and DOES have explanatory pathology. And should NOT be treated with education and psychological treatments.

Yet almost every pain doctor, researcher, course, seminar, webinar, YouTube video and podcast reinforces this claim…most pain has no explanatory pathology…with zero evidence. It is simply not true.

The BPS model is not a psychological model

The problem is that the BPS model has increasingly been translated into something very different to what I am describing.

Instead of:

Biological, psychological and social factors may be relevant. Assess the patient and determine what matters in this specific patient.

It becomes:

Psychological factors are always present, always important, and probably the reason the pain persists.

This is assumed.

Seems clinicians are taught to assume this. To the great harm of people whose pain is NOT due to psychological factors.

This is NOT individualised assessment. This is NOT patient centred care.

That is universalising psychology.

The psychologising of pain.

Some pain science educators and treatment proponents talk as though all chronic pain is substantially psychosocial. They imply that psychological factors are not only common, but powerful enough to be assumed to maintain pain in almost everyone.

Some claim that 90-95% of all chronic pain is nociplastic - a figure I’ll be tracing back to its source (and finding it doesn’t hold up) in an upcoming piece specifically addressing this claim. But this person repeating this claim means it is now believed to be fact, and therefore they feel safe treating all pain as if it were nociplastic.

Assumptions have become the norm.

But the presence of anxiety, depression, fear, poor sleep or catastrophising does not prove that those things caused the pain.

Pain can cause anxiety.

Pain can cause depression.

Pain can disrupt sleep, reduce activity, damage relationships and make people fearful of activities that reliably hurt.

Finding those things in a patient does not tell you which came first.

Correlation is not causation.

CAN. MAY. Not WILL.

As a clinician, you must determine which came first, the pain OR the anxiety, depression, sleep loss, lack of exercise. As a clinician you must never assume. And please. Yes, it’s a bi-directional process, once established. Or it can be. But for every person, one or the other came FIRST.

How do you figure it out? Ask the patient. I promise you, they will know whether pain is keeping them awake all night. Or if they feel achy in the morning because they haven’t slept. Different thing. Different treatment.

Thoughts, beliefs and emotions can affect pain

Of course thoughts, beliefs and emotions can affect pain.

They can.

They may.

They don’t always.

And they do not necessarily do so in every patient. And they do not necessarily have a large effect.

CAN…MAY…Not WILL.

It is not a given.

Some people may experience meaningful improvement in pain and function when fear, anxiety or catastrophising are addressed.

Other people have already addressed those issues and continue to experience severe, persistent pain.

Both experiences are real.

Both are valid.

Both deserve appropriate treatment.

The clinician’s job is to determine what is relevant to the person in front of them…not to force every patient into the same explanatory model.

There is no single cause or mechanism underlying all chronic pain - no matter what you’ve been taught.

Pain always involves biology

There is also an important distinction between saying that pain may persist without obvious ongoing tissue damage and saying that pain can be generated by psychology alone.

Those are not the same thing.

A scan may not show active inflammation or continuing structural damage. A nerve lesion may not be visible on routine imaging. The relevant biological changes may involve peripheral nerves, the spinal cord, the brain or other parts of the somatosensory system.

But pain remains a biological sensory experience.

There is no convincing evidence that psychological factors alone can generate chronic pain in the complete absence of any biological process.

Though the idea is often repeated. Without citation.

Nociplastic pain refers to pain associated with altered nociception. It does not mean pain without biology. It does not mean pain without nociception.

Neuropathic pain involves a lesion or disease of the somatosensory system. Neither concept supports the idea that the brain simply creates pain out of thoughts, beliefs or emotions, with no biological driver at all.

The fact that the biological driver may be difficult, or even impossible, to identify does not mean it does not exist.

I feel like I have said this so often, I feel silly saying it over and over. But it seems I have to keep repeating it. Until someone can prove to me otherwise.

Do not assume that pain is purely psychological in origin.

“Nonspecific” means that the cause has not been adequately identified. It does not mean the cause is psychological.

Talk to the patient and listen to their answers.

Use screening tools.

Use critical thinking skills to come with a differential, and then the best diagnosis.

Isn’t that far more interesting than just assuming the pain is psychosocial and requires pain science education?

Screen. Listen. Think critically.

There are validated screening tools that clinicians can use.

But nothing is better than talking to, and listening to, the patient.

That may be the easiest and most important assessment tool of all.

Listen to what the patient says.

Ask when the pain began.

Ask what makes it worse.

Ask what improves it.

Ask what has already been tried.

Ask if the patient is avoiding movement/exercise.

Ask whether the patient is frightened of movement, or whether movement simply hurts.

Avoiding pain is reasonable, after all.

Ask whether they are distressed because they have a psychological problem - or because they have been living with severe, inadequately treated pain for years. Or even decades.

The patient’s history is critical information.

It should not be overridden by a clinician’s favourite pain science theory.

Yet that is what too often happens. A patient explains their symptoms, their diagnoses, their investigations, their treatment responses and their limitations. The clinician then replaces that history with a predetermined explanation involving fear, threat, beliefs, and expectations.

Of the patient denies being fearful, or anxious then the clinician tells them they have “unconscious fears”.

The patient cannot win.

The theory is always protected.

But this is not patient-centred care.

It is theory-centred care.

Summary

The BPS model was never meant to be a checklist requiring every patient to have a significant psychological and sociological contribution to their pain.

It was meant to encourage clinicians to consider the whole person and to identify which factors are relevant in that individual case.

Sometimes the dominant problem is biological.

Sometimes psychological factors meaningfully amplify pain or disability.

Sometimes social circumstances are hugely important.

Sometimes a combination of factors is involved.

Sometimes those factors have a very large influence.

Sometimes the influence is only small.

Sometimes they are not a valid treatment target.

And sometimes the psychological and social problems are consequences of years of severe pain, medical neglect, disability and loss.

The proportions can differ between patients. They can change over time. The answer cannot be assumed in advance.

The BPS model does not give clinicians all the answers.

The BPS model should help clinicians ask better questions.

It should not give them permission to stop listening.

It should not be used to assume psychological pathology.

And it should never be used to replace the patient’s history, the patients story, with a stereotype.

The biopsychosocial model should individualise assessment - not universalise psychology.

Anything less is not comprehensive pain care.

It is simply another form of reductionism.

It is an important question. If most chronic pain is primary - pain that is a disease in its own right - then that has enormous implications for how chronic pain is understood and treated.

Currently it is ASSUMED that most chronic pain is primary pain. This is repeatedly stated by people who benefit from chronic pain being classified as primary pain. Because their treatments are for primary pain. And they want their treatments to be adopted universally, to their obvious financial benefit.

The problem is that has pretty much been achieved…all choric pau us assumed oi be chronic primary pain, and Pain Science Education is a FIRST LINE treatment. But the evidence base does not support it. Any of it.

But where is the evidence?

One study appears to provide it. It is often presented to me as evidence that most pain is pain without nociception. Pain without a pathological cause. But I disagree.

The HUNT Pain Examination Study clinically examined 551 people from the Norwegian general population. After weighting its results, the researchers estimated that 27.9% of the population had chronic pain.

Of those with chronic pain, they reported that 63% had chronic primary pain and 37% had chronic secondary pain.

There it is. Evidence that most chronic pain is primary.

Except that it isn’t.

When we examine how participants were selected and, more importantly, how their pain was classified, a very different picture emerges.

The study did NOT demonstrate that 63% of chronic pain was caused by altered nociception. It did not demonstrate that ongoing nociceptive or neuropathic mechanisms were absent.

It found that the examiners could not confidently attribute much of the pain to a recognised explanatory disease or pathology. It found that most pain was ‘non specific’.

That is diagnostic uncertainty.

Diagnostic uncertainty is not the same thing as primary pain.

Importantly, the definition of chronic primary pain includes “significant emotional distress”. But emotional distress was not assessed in this study. It merely classified chronic pain as primary, if the cause of the pain was not immediately apparent. The authors acknowledge this without really acknowledging the importance.

And the study found that people they classified as having primary pain did not have more psychopathology than those with secondary pain (12.5% vs 14-5% - not statistically significant). Psychopathology is not the same as emotional distress, but some psychopathology, at least, could be classified as emotional distress. The study therefore did not establish that everyone placed in its “primary pain” group met the full ICD-11 definition of chronic primary pain.

Their definition of chronic primary pain is not THE definition of chronic primary pain.

Another problem common in many pain science studies…redefine the definition for the sake of the study, to get the outcome the authors want to report.

Who was recruited?

These were not patients recruited from pain clinics.

They came from the HUNT3 population survey in Norway. The original pain study involved residents of Levanger and Verdal, two municipalities in what was then Nord-Trøndelag County.

Of the 3,407 people who completed the relevant follow-up questionnaire, 1,018 had reported chronic pain.

The researchers invited:

• 364 people randomly selected from the entire cohort; and

• an additional 587 people who had previously reported chronic pain.

This deliberately oversampled people with pain. That seems reasonable because the researchers needed enough chronic pain cases to examine and classify.

Importantly, they did not oversample people with primary pain. Nobody had been classified as having primary or secondary pain at this point.

Selection for the oversampled group was based on self-reported pain lasting at least six months and at least moderate bodily pain during the previous week. It was not based on the cause or presumed mechanism of that pain.

Of the 551 people who ultimately attended the clinical examination, 399 were found to have chronic pain.

The oversampling itself is not the central problem. The researchers attempted to correct for it when estimating population prevalence.

The problem came afterwards.

How did “unexplained” pain become primary pain?

Participants underwent structured examinations by experienced clinicians, with access to existing hospital reports. Their pain conditions were then classified using ICD-10 and ICD-11.

Pain associated with a recognised explanatory disease was classified as chronic secondary pain.

When the researchers could not identify an adequate explanatory pathology, the pain was classified as primary, or described as “non-specific.”

The first problem is, they didn’t look that hard.

The bigger problem is ‘non-specific’ pain is not the same as pain with no explanatory pathology. It is, in fact, very different.

The largest primary pain categories were nonspecific pain involving the back, neck and limbs. Nonspecific low-back pain and nonspecific neck pain were the most prevalent individual pain conditions.

But here’s the problem in this study:

Nonspecific pain was treated as evidence of primary pain.

But those terms are not interchangeable. They are NOT the same thing.

What does “nonspecific” actually mean?

Nonspecific pain does not mean that no biological cause exists.

It means that medicine cannot confidently attribute the pain to one specific, identifiable pathology.

Sometimes no clear abnormality has been identified.

Sometimes several potentially relevant abnormalities have been identified, but it is impossible to determine which one, or which combination, is producing the pain.

Sometimes the suspected pain generator cannot be confirmed with currently available tests.

Sometimes the necessary investigation has never been performed.

Sometimes the pathology is thought to be poorly correlated with symptoms at a population level, making causal attribution difficult in an individual patient.

The World Health Organization’s description of nonspecific low-back pain says that it is not possible to identify a specific disease or structural explanation. It does NOT say that no peripheral pathology or nociception exists.

“Nonspecific” means that no particular cause was identified. It does not tell us what is causing the pain.

The HUNT study’s reasoning effectively becomes:

1. We cannot confidently identify which pathology explains the pain.

2. Therefore, the pain is not explained by pathology.

3. Therefore, the pain is primary.

The first statement may be supported.

The second does not automatically follow. It is an assumption. A more thorough investigation may reveal the pathological cause of the pain.

The third has not been demonstrated. It is another assumption. With no basis in fact.

Uncertainty has quietly been transformed into certainty.

Primary pain is not the same as nociplastic pain

This distinction becomes even more important when the study is used to support claims about nociplastic pain.

Chronic primary pain is an ICD classification. Under ICD-11, it is pain lasting longer than three months, associated with significant distress or functional disability, and not better accounted for by another condition. The classification explicitly includes conditions such as nonspecific back pain. Nicholas et al., 2019.

Nociplastic pain is a proposed mechanistic descriptor. The IASP defines it as pain arising from altered nociception that is not adequately explained by nociceptive or neuropathic mechanisms. More recent proposed clinical criteria also require evidence such as pain hypersensitivity. IASP terminology, IASP discussion of nociplastic criteria.

In pain science education circles, it is often reduced to the slogan “the issue is not in the tissues”.

Chronic primary pain, nonspecific pain and nociplastic pain are not the same thing.

Classifying somebody’s pain as primary because no sufficiently explanatory disease was identified is not sufficient. It does not prove altered nociception.

It does not rule out ongoing nociceptive input.

It does not prove that pain has become a disease independent of its original cause.

It certainly does not prove that the pain is being maintained by fear, catastrophising, maladaptive beliefs or an overprotective brain.

Yet that is what this study has been used to demonstrate. Presented to me as evidence for.

Researchers writing within the pain field have warned that primary pain, nociplastic pain and central sensitisation describe different domains and should not be conflated. Cohen et al., 2023.

It is true, however, that outside carefully worded academic papers, these concepts are routinely used interchangeably. I have used them incorrectly in the past, I am trying to correct this. You will find mistakes in my past writing. Lots of mistakes. I am learning as I go. I am working on correcting my errors as Iearn more. I have never claimed to be a scientist, but that does not make it OK to dismiss my opinions because I do not have a PhD. And that fact remains, it’s important to understand the difference between all these terms. And make sure any claims made are supported.

Because patients suffer when assumptions are conflated with evidence.

Patients suffer. That should be important to every clinician AND researcher. Because the end goal of all research should be primarily to help people in pain…Right?

A single clinical examination cannot prove the absence of pathology

The HUNT examinations were considerably better than simply asking people to tick a box on a questionnaire. That is a strength of the study.

But a clinical examination supplemented by existing hospital records is not an exhaustive investigation capable of excluding every possible nociceptive or neuropathic cause.

It cannot establish that no explanatory pathology exists. Or could not be found with a more thorough investigation.

Non-specific does NOT mean nociplastic.

This is particularly important for conditions such as back, neck and limb pain, where numerous tissues may contribute, imaging findings may be difficult to interpret, multiple abnormalities may coexist and some painful processes cannot be directly visualised.

BUT.

Failure to identify the pain generator is not evidence that there is NO pain generator.

Another instance of ‘Absence of evidence does not equal evidence of absence”.

It may mean that additional investigation is required. It may mean that existing tests cannot resolve the question. It may simply mean that uncertainty must remain. It most often means that the treatment is the same, regardless of the specific cause, therefore, it does not really matter.

Not every person with back or neck pain requires endless scans and invasive testing. That is not the argument I’m making here.

The argument is that when medicine cannot determine the cause, it must NOT pretend that this uncertainty proves there is NO cause.

“We do not know” is a scientifically and medically valid answer. I think clinicians often think they need to provide all the answers; that patients require this. But I don’t believe this is true. In my experience, and my personal opinion, pain patients much prefer honesty. And truly appreciate a clinician who says “I am not sure, but we’ll figure it out together” or something along those lines rather than an assumption.

“We do not know, therefore the pain itself is the disease” is an assumption. Not fact.

The classification creates the finding

This produces a circular process:

1. Nonspecific pain is placed within the chronic-primary-pain category.

2. Nonspecific back, neck and limb pain are extremely common.

3. A population study consequently finds that chronic primary pain is extremely common.

4. That finding is cited as evidence that most chronic pain has no underlying pathological cause. Therein lies the leap of faith that the evidence does not support.

5. In practical terms, clinicians are encouraged to stop looking for pathology and instead treat the pain as primary.

6. More patients remain without a specific diagnosis.

7. Their pain is then counted as further evidence that primary pain is the most common type of pain.

The assumption validates the classification.

The classification manufactures the estimate of prevalence.

The prevalence estimate is then presented as evidence for the original assumption.

Another circular argument. So common in pain science research.

This is not the discovery of an underlying biological truth. It is, at least partly, the predictable product of the definitions chosen by the researchers.

Worst of all, the patient receives treatment for nociplastic pain, which leaves their pain untreated and/or under treated.

Merely not being able to find the pathological cause of pain does not mean the pain is chronic primary pain. There are further requirements – namely significant emotional distress, and functional disability. Those are not addressed by this study.

What can the HUNT study legitimately tell us?

The study can tell us that chronic pain was common within this Norwegian population sample.

It can tell us that most people with chronic pain had more than one pain condition.

It can tell us that musculoskeletal pain was extremely common.

It can tell us that, using the researchers’ examinations, available records and ICD-11 classification rules, an explanatory disease was not confidently identified for a substantial proportion of pain conditions.

Those are useful findings.

But it cannot tell us that:

• 63% of chronic pain is nociplastic;

• 63% of chronic pain exists independently of peripheral pathology;

• nociceptive or neuropathic mechanisms were excluded;

• pain-related thoughts and beliefs were maintaining the pain;

• further diagnostic investigation would never identify a cause; or

• most chronic-pain patients require treatment directed primarily at their understanding, emotions or behaviour.

Those conclusions go far beyond the evidence collected.

Diagnostic uncertainty is not a diagnosis

There is remarkably little high-quality evidence establishing how much chronic pain is predominantly nociceptive, neuropathic, nociplastic or mixed.

Yet 100% of chronic pain is treated as if it were chronic primary pain.

That uncertainty should make people cautious.

Instead, uncertainty is being used to fill the evidence gap.

Assumptions are repeated so often they become fact.

Pain that has not been adequately explained becomes “nonspecific.”

Nonspecific pain becomes “primary.”

Primary pain becomes “nociplastic.”

Nociplastic pain is then presented to patients as proof that their tissues are no longer the problem.

And the “issue is not in the tissues” gets validated.

At every step, the claim becomes stronger while the evidence does not.

And the patient remains in pain. Because the treatment does not match the cause.

The HUNT study did not discover that most chronic pain is primary.

It discovered that the cause of much chronic pain could not be confidently identified by its examiners.

That is NOT the same thing.

And until pain medicine stops confusing diagnostic uncertainty with evidence of primary pain, its estimates of primary pain prevalence will remain built upon the very assumption they claim to prove.

Reference

Borchgrevink PC, Glette M, Woodhouse A, et al. A Clinical Description of Chronic Pain in a General Population Using ICD-10 and ICD-11: The HUNT Pain Examination Study. The Journal of Pain. 2022;23(2):337–348.

It also shows why telling chronic pain patients to change how they think about pain is so often cruel and ridiculous.

Asaf asks us to imagine an experiment.

You are blindfolded, with your hand on a table. A computer will randomly choose whether your thumb is touched with a soft sponge or struck with a hammer.

Would you volunteer?

I wouldn’t. And I most definitely understand pain. Would you?

Everyone who teaches predictive processing as a treatment for chronic pain should at least be asked whether they would volunteer for this experiment. To make them think.

You might expect the sponge. You might tell yourself you are safe. You might work hard to “reprocess” the threat.

But if the hammer comes down, it is going to HURT.

It will hurt even though you expected the sponge.

Why does this matter?

Because the version of predictive processing sold to many chronic pain patients goes something like this: if you expect pain, your brain will produce pain. If you change your expectations and convince your brain that you are safe, you can reduce your pain or even stop it completely.

But, as Asaf has so beautifully shown, what happens when you reverse it?

If expecting pain can make the harmless sponge hurt, why can’t expecting the sponge STOP the hammer from hurting?

If prediction is powerful enough to generate pain without a noxious stimulus, why isn’t it powerful enough to prevent pain when the expectation is reversed?

Because nociception matters.

Yes, the brain can change pain. Attention, expectation, emotion, memory, context can all turn pain up or down. Sometimes that modulation can be substantial. Sometimes its small.

But changing pain is not the same as creating it.

And being able to alter pain temporarily is not the same as being able to switch off persistent pathological pain through thought.

Yet this is what patients are asked to do. Simply by being taught about the neurobiology of pain, we are supposedly going to learn to “turn down” our pain.

We are then expected to manage it ourselves. When the “learning” does nothing to reduce or relieve our pain, we are told that we did not learn properly, did not try hard enough or just want the easy way out (popping a pill).

But the promised feat - thinking away sustained pain caused by ongoing pathology - has not been demonstrated. Ever. That is the magical leap some popular pain gurus make. The evidence that thoughts can influence pain is quietly inflated into a claim that thoughts can control it.

My example has always been a baby.

A baby does not need to understand what a needle is for its first needle to hurt. It does not need to catastrophise. It does not need to believe that its body is unsafe. It has no learned understanding of needles or what they might do. Its nervous system is already biologically equipped to respond to potentially damaging stimuli.

Predictive-processing supporters can call this an “innate prior” if they want. But that still does not support what patients are so often told: that our pain is being generated by learned beliefs and can therefore be unlearned.

Calling an inborn biological response an “innate prior” does not prove that the nervous system made a prediction. It may simply be normal biology renamed to make it fit the theory.

We know that the nociceptive system exists. The “prior” is the theoretical story predictive-processing proponents have placed on top of it.

And if predictive processing can relieve pain so powerfully, why is it not offered instead of analgesia when someone presents to the emergency department with a bone sticking out of their leg?

Reassurance and distraction may help around the edges. But nobody sensible believes that explaining pain neurobiology will override the nociceptive consequences of a compound fracture.

Why? Because predictive processing does not make nociception disappear. Education does not make nociception disappear. Changing your beliefs does not make nociception disappear.

Chronic secondary pain is exactly the same as acute pain.

The body does not reach three months and abruptly change from detecting noxious events to inventing pain from faulty predictions. Chronic pain may involve sensitisation and other changes, but that does not mean the original disease, injury or nociceptive input has become irrelevant.

This is the core fallacy in the way Explain Pain and PRT are often presented.

All chronic pain is not “pain that persists after normal healing time.”

A huge amount of chronic pain is secondary pain associated with disease, injury, inflammation, nervous-system lesions or other pathology. The ICD-11 explicitly distinguishes chronic primary pain from six categories of chronic secondary pain. Chronic secondary pain is recognised as pain occurring in the context of an underlying disease - not simply pain that has overstayed its welcome.

That distinction is basic. Yet clinicians repeatedly gloss over it, some have never even learned it…and patients suffer because of it.

Chronic secondary pain is not merely acute pain that failed to receive the memo about healing. It can involve long-term biological changes. But the same nociceptive apparatus does not suddenly become irrelevant because the calendar has ticked past three months.

For many of us, the disease, injury or lesion continues to produce painful input every day.

Inflamed joints can hurt.

Damaged joints can hurt.

Demyelinated nerves and naked axons HURT.

And when they hurt, they hurt whether the patient expected pain or not. They hurt whether the patient understands pain science or not. They hurt whether the patient feels “safe” or not.

Yes, people can sometimes suppress or fail to notice pain during an emergency. I have written about injured soldiers who do not immediately feel their injuries.

But that is TEMPORARY.

And it is UNCONCIOUS.

It does not show that someone can override severe nociceptive pain INDEFINITELY with their mind because they now “feel safe.”

Yet that is what clinicians expect people with painful, progressive and incurable diseases to do.

People in terrible pain are told to learn about pain and think about it differently. But when the treatment does not work, the theory is never blamed. The patient is.

The patient must still be afraid.

We must have unconscious fears.

We have not embraced the explanation.

We have not convinced our brains that we are safe.

We have not learned properly.

Or worse, we are lazy and just want to pop a pill.

The patient is always at fault. Never is the theory seen to be flawed, or misapplied.

We have a name for that: victim-blaming.

Some clinicians may do it almost unconsciously because they have embraced a theory too enthusiastically. But that does not make it harmless.

Too many clinicians believe the POPULAR THEORY instead of the PATIENT sitting in front of them.

Believe what you will. But when your theory and treatment do not work, do not assume that the patient has failed.

Stop and reassess.

Ask whether the patient’s pain has been misclassified. Ask whether disease, inflammation, injury, neuropathy or another source of continuing nociceptive input has been overlooked. Do not keep forcing a chronic primary pain explanation onto someone with chronic secondary pain.

That is a huge difference. It is important to know. Yet it is repeatedly ignored or glossed over by proponents of pain science education.

Clinicians have dismissed me by pointing out that I do not have a PhD, as if that means I cannot read research, understand an argument or describe what happens inside my own body.

Well, Asaf is a PhD candidate researching pain. He knows more about pain than almost anyone on Earth. They cannot dismiss his argument as the ignorance of a patient who simply does not understand pain science. Because the hammer and the sponge is beautifully elegant.

Whatever pain science education was originally intended to achieve, it must not be used to erase the distinction between chronic primary and chronic secondary pain. And it must never substitute for investigating and treating ongoing pathology.

Yet too many physiotherapists, GPs and psychologists behave as if ALL chronic pain is chronic primary pain, and as if every patient can change their pain by learning about it.

This is obviously untrue.

Meanwhile, real disease is minimised, investigations are refused and pain relief is withheld while patients are told to work harder at changing their thoughts.

That is not harmless, no matter how many times physiotherapists tell me I am exaggerating or that this is not a big deal.

I am not exaggerating.

This IS a big deal.

And it disturbs me how many clinicians cannot see the harm. Or do not want to see.

It causes physical, psychological and financial harm to patients. Imagine being misdiagnosed, because you have again been disbelieved, and given a treatment that is inappropriate and ineffective. Imagine having your safe and effective treatment taken away in favour of this ineffective and inappropriate treatment. Imagine being charged $120 for a 20-minute lecture, that does not fit your true diagnosis, when you live under the poverty line. Imagine not being able to afford groceries this week because you went to this appointment instead. Imagine being overridden, talked over and your attempts to correct your own history ignored. Imagine being seriously ill, the effort involved in getting to the appointment, only to be treated like a wilful child who simply does not understand. You don’t think that’s harm???

It also harms the physiotherapy profession, because patients eventually stop trusting clinicians who refuse to believe them. A few bad consults can harm the entire profession.

But I digress.

The brain is involved in pain. Obviously.

The brain is involved in everything we experience. This is not the mic-drop people seem to think it is.

Pain is a conscious experience, and we need a brain to experience it.

But that does not mean the brain invented the noxious event. It does not mean nociception is unimportant. And it certainly does not mean patients can think their way out of ongoing pathological pain.

If you expect the sponge and get the hammer, the hammer will still hurt. This is obvious.

People with inflammatory disease, damaged joints and injured nerves have been saying the chronic-pain equivalent of that for many years.

Now Asaf has given us a beautifully simple way to explain it.

Next time a clinician asks you to change the way you think about pain, give them Asaf’s article.

Then ask whether they would volunteer for the hammer-or-sponge experiment. And then ask them why.

Follow Asaf on LinkedIN

There were no appointments available when I needed one.

That was how I discovered she will be away for all of August.

I am due for my pain medication on 10 August.

She will not return until approximately 4 September.

That is more than three weeks - almost four weeks - during which I would have been left without pain medication.

Medication she knows I rely on.

Medication she knows other doctors cannot - or will not - prescribe.

Medication that controls severe pain and cannot simply be stopped without serious consequences.

She did not mention that she was taking a whole month of leave when I last saw her, four weeks ago. However, it is of course possible that she did not have the leave planned at that time. Possible…but unlikely.

No one contacted me.

No one arranged an appointment before she left.

No one explained who would prescribe in her absence.

This is within her Duty of Care as a doctor. It is her responsibility to ensure continuity of care when she is away, or on holiday.

Yet…I found out by accident.

Thankfully, I found out early enough to make an appointment for 30 July. One of the last remaining appointments before she goes away for an entire month.

Had I waited until tomorrow, there probably would have been NO available appointments. But I am lucky, I now have an appointment booked.

That is almost two weeks before the prescription is due. Whether the system will allow everything to be processed that early remains to be seen. I’ve had scripts denied before, when they were only five days early.

If Medicare argues, it will be a hassle for my GP. She will have to make arrangements to ensure I am able to access my medication. She will have to co-ordinate with Medicare, and my pharmacy. The day before she goes on one month’s leave. She will not be happy.

The point is, once again, it is my responsibility to catch the problem.

My responsibility to discover, by chance, that my doctor will be away.

My responsibility to calculate when my medication will run out and how ‘early’ the script will be.

My responsibility to make an early appointment.

My responsibility to navigate Medicare, prescribing approvals, pharmacy rules and controlled-drug restrictions and hope that the script will be approved. That everyone involved will be working hard to ensure I am able to access my essential medication, when I need it.

My responsibility to make sure I am not suddenly left in severe pain and potential withdrawal.

This should not have been my problem to manage.

Doctors are entitled to take leave. Of course they are entitled to take leave.

BUT.

Arranging continuity of care is part of taking leave. Ensuring that patients are able to access essential care is part of taking leave. It’s part of the job.

That is the price of holding responsibility for patients whose treatment cannot simply be interrupted. Not without serious consequences.

My GP knows when my medication is due. She knows I cannot obtain it casually from another doctor. She knows the restrictions surrounding it. She knows what happens to my pain when it is withheld.

This was entirely foreseeable.

This means she does not care. Or. She does not believe I need the pain medications. She did express to me at our last appointment that “opioids are not effective for neuropathic pain”. It was an uncomfortable conversation, and I do wonder if I am now paying the price for disagreeing with her.

Some doctors are like that. They are always right. And woe betide a mere patient who has an educated opinion, with citations and evidence, and dares to express it. However politely.

However, I don’t believe she is like that. I always saw her as a kind, compassionate GP. I like her very much, I respect her, and I find it hard to believe that she has abandoned me this way.

Still…it does appear that is what has happened.

Perhaps this is my punishment.

Perhaps she merely forgot. More likely she merely forgot.

Either way, she clearly does not take my pain seriously. It clearly does not matter to her if I suffer for four weeks.

Perhaps she still intended to contact me. Technically, that is possible. However, at this stage its very unlikely. There were only two appointments left when I booked. It is far more likely that she simply did not feel she needed to notify me that she would be unavailable. Or arrange continuity of care.

I wonder whether she has palliative-care patients, insulin-dependent diabetics whose prescriptions were due, people with epilepsy, or patients with adrenal insufficiency who depend on daily steroids - as I also do. Were they warned? Were alternative arrangements made for them? Or is it only opioid-treated pain patients whose medication, withdrawal risk and suffering are treated as unimportant?

If I had not made an online booking today, and seen that she was unavailable all through August, what would have happened?

Would somebody eventually have noticed?

Would reception have called before she left?

Would another doctor have been authorised and willing to prescribe?

Would arrangements have been made to ensure I did not suffer needlessly?

Or would I have tried to book the week before 10 August and discovered there was simply no one available to help me?

And told, as I have been told before, that it is not the practices problem, and there is nothing they can do. And directed to go to the ED if the pain gets ‘that bad’.

Because we all know that the ED would leave me to sit there for eleven hours and eventually give me two Panadol and tell me to go home.

This is why I tend to book so far in advance. I have been caught out before. But online booking systems don’t always let me book that far ahead.

Patients taking controlled medicines are constantly told that these drugs require exceptional care.

We are monitored.

We are restricted.

We are required to attend appointments exactly on schedule.

We cannot refill too early.

We cannot easily change doctors.

We cannot simply see whoever is available.

Every part of our treatment is tightly controlled.

And we, as patients, must comply.

We must attend in person, even if we are too unwell. Telehealth is not allowed for controlled prescriptions.

But somehow, the obligation only seems to run in one direction.

The patient must comply perfectly.

But.

The system does not have to ensure the medication remains available.

The system does not protect the patient from the real harms – uncontrolled pain and withdrawal – of being left without care.

The system only protects from the exaggerated and very unlikely harms of addiction and overdose.

This is deeply demeaning.

Not merely inconvenient.

The unspoken message is that weeks of severe uncontrolled pain - and possible withdrawal - are apparently acceptable collateral damage. I matter enough to be monitored and restricted, lectured, scolded. But I do not matter enough for my doctor to ensure that my treatment continues safely. Not enough to ensure that my pain would be managed for the four weeks my doctor is away.

Four weeks in agonising pain is a pretty terrible thing to do to someone. Let alone your patient. What happened to ‘First, do no harm’?

Leaving someone to suffer, in pain, for four weeks, is most certainly doing harm.

And I looked up the Medical Board’s duty of care, and she is most definitely responsible for ensuring I am able to access essential medications while she is away.

And yet, she does not care.

She does not believe my pain is that bad, clearly. Its just not a concern. At all.

Demeaning.

That is exactly what this feels like. I am not worth her time.

I am important enough for my medication to be treated as dangerous.

Important enough to be scrutinised. Questioned. Interrogated.

Important enough to have my dosage limited, my prescriptions controlled and my treatment second-guessed.

But apparently, I am not important enough for someone to look at the calendar and say:

“This patient’s medication is due while I am away. We need to make a plan.”

It would have taken one phone call.

One note to reception.

One appointment booked before the leave began.

One simple continuity-of-care arrangement.

Instead, I was left to discover the risk myself.

And I did discover it.

I made the appointment.

I will attend early.

I will explain the situation.

I will ask for the prescription.

I will check the authority.

I will check with the pharmacy.

I will do everything required to prevent the foreseeable harm that nobody else bothered to prevent.

And still…there is no guarantee that I will be able to access my medication on 30 July. She could post date the script, ensure the pharmacy cannot dispense until 10 August. But will she? Will they?

It will be left up to me to beg and plead for her help. Which will only solidify her opinion that I am a drug seeker. Because she knows that opioids do not work for neuropathic pain.

I will do whatever is necessary. Because chronic pain patients learn very quickly that we must anticipate every failure in the system.

We must notice every gap.

We must plan for every absence.

We must cover every contingency.

We must protect ourselves from every administrative mistake.

Because the consequences will not be felt by the doctor.

They will be felt by the patient. The chronic pain patient. Whose pain is so severe, that only opioids are effective.

Pain that severe used to inspire empathy. For someone to have to live with that much pain…Ten years ago, people used to care.

Now? Having a disease that is incurable and causes so much pain that you need daily opioid pain medication seems to inspire nothing but contempt.

The Australian Medical Board Code of Conduct of contact is available for download here:

https://www.medicalboard.gov.au/Codes-Guidelines-Policies/Code-of-conduct.aspx

What the Australian Medical Board Code of Conduct actually says:

Under:

6.3 Delegation, referral and handover

Good medical practice involves:

6.3.1 Ensuring there are arrangements in place for continuing care of patients when you are not available. These arrangements should be made in advance when possible, and communicated to the patient, other treating practitioners and any relevant facilities or hospitals.

6.3.2 Taking reasonable steps to ensure the person to whom you delegate, refer or handover has the qualifications, experience, knowledge and skills to provide the care required.

6.3.3 Understanding that when you delegate, although you will not be accountable for the decisions and actions of those to whom you delegate, you remain responsible for the overall management of the patient, and for your decision to delegate.

6.3.4 Always communicating sufficient information about the patient and the treatment they need to enable the continuing care of the patient.

Its pretty clear. My GP is responsible for ensuring I have access to care, in this case essential medications, while she is unavailable. Her absence is planned and the potential harms of my not being able to access my pain medications are clear and foreseeable.

So…once again, as per usual, the patient carries every obligation, while the system escapes responsibility. And my doctor? It would seem she just does not care.

Not a bad day.

Not a flare.

Every. Single. Day.

Four to six functional hours, if I am lucky.

Yesterday should have been a great day.

I received a $600 order, a $300 order and three smaller ones.

That has never happened before.

It feels as though all the work I have put into SEO, marketing and building my business is finally paying off.

It is my week’s income.

But to get those orders packed, I had to push far beyond what my body could tolerate.

That was all I did yesterday.

Pack orders.

By 6:30 pm, I was in bed. I had run out of pain medication for the day and the pain had become unbearable.

I lay flat on my back until 1 am, waiting for the next dose I was allowed to take.

Hours of simply enduring pain.

That’s what much of my life is now…hours of simply enduring pain.

This morning, the orders still had to go to the post office.

People buy from me because I ship quickly. This is my USP. This is one of the reasons my business survives.

Now look around my house.

I cooked dinner because nutrition matters to me.

I could not clean the kitchen afterwards.

Dirty dishes. Dirty pots. Cutlery everywhere. Every surface covered.

My workspace is the same.

There is stuff everywhere because I do not have enough functional hours to clean up after myself.

The workshop where I create my products.

My office space where I print and pack.

My coffee table which serves as my desk, with my broken laptop, with the extra screen.

My bedroom. What should be a place of privacy, rest, and respite…is a dumping ground.

All total chaos and mess. I don’t have time to clean up after myself. I am exhausted and work to collapse. I hate living this way. I have no choice.

That makes the next day harder.

Always playing catch-up.

Always starting from behind.

That;s what living with disability is…always starting from behind. But expected to catch up and do as much as a non-disabled person. To EARN your disability payment.

I am behind on bookkeeping.

Customer enquiries are waiting.

The work never ends because there are not enough hours in my body to do it all.

People often talk about work-life balance.

For many people, work takes eight hours. Sleep takes another eight.

The remaining hours belong to them.

They can spend those hours with family, on hobbies, resting, exercising, reading, watching television or doing absolutely nothing.

I do not have those hours.

I do not have that choice.

Every upright hour I have is spent working.

It has to be.

The Disability Support Pension is not enough to live on. If I want to pay the bills, buy groceries and keep my business alive, I have to work.

Some days, I have to work harder than my body is capable of.

People with chronic pain are often assumed to be lazy. As though we are trying to avoid work.

Nothing could be further from the truth.

I loved my career. I worked hard. I made good money.

I grieved the career I lost.

I grieved the income I lost.

No one chooses poverty.

Now I have a job I made for myself because no conventional employer can rely on someone who can work only a few unpredictable hours, on unpredictable days.

In my own business, I work far more than that.

I have no choice.

I am the owner, packer, bookkeeper, marketer, customer service manager and web developer.

The business is becoming a success.

But.

And I am losing function in my arms and legs.

I will not be able to physically pack and ship these products forever.

So while running this business, I also have to build whatever comes next.

SEO. GEO. Skills I have. Now I need to market those. Rely on my brain, because my body is deteriorating, and there is nothing I can do about that.

Disease and losing physical function

The ideas are there.

The motivation is there.

The work ethic is there.

What is not there are enough functional hours.

What is not there is control of my hands, strength in my arms, muscle mass in my legs.

Pain has taken my evenings.

It has taken my weekends.

I do not have weekends. I work every day. Every day is the same.

It has taken hobbies.

It has taken spontaneity.

It has taken fun.

It has taken rest.

It has taken sleep.

Take away pain relief and what happens

When adequate pain relief was taken away, it did not just increase my pain.

It took away time.

My doctors made that decision to protect me from a small statistical risk of overdose…something in the order of 4 in 1,000. According to multiple, large scale, well designed, recent studies.

They replaced it with the certainty of severe pain, lost function and a life consumed by survival.

That risk was mine to weigh.

That life was mine to live.

THAT choice should have been mine to make!

But doctors take control of lives they do not take responsibility for.

Two months ago, business dropped off a cliff.

There were only a few orders each week. I could not pay the bills. I had to borrow money from my adult child.

This week, I have more orders than I can physically manage.

When business is slow, I cannot afford to live.

When business is successful, I cannot keep up.

There is no middle ground.

Neither one is ‘success’.

I am fragile. I am inflexible. Or rather, my health is.

I cannot hire someone. The business does not make enough. Every cent of profit would go towards paying them, and I would be no better off.

This is the impossible arithmetic of chronic illness.

Every task costs more.

Everything takes longer.

Every successful day has to be paid for by borrowing from tomorrow.

People ask what chronic pain takes from you…

For me, it has taken choice.

And it has taken joy.

Life is pain.

Life is work.

And what I haven’t even mentioned is that I am a parent. A sole parent. That is my most important role. And that is why I do everything I do.

But when every functional hour is spent simply trying to survive, there is no room left for living.

Only existing. In a sea of chaos. Drowning.

“Pain is produced by the brain.”

Yes.

It is.

Everybody knows that.

Every doctor knows that.

Every neuroscientist knows that.

Every patient knows that.

The brain produces the experience of pain.

The brain produces EVERY experience a human experiences.

So yes, the brain produces pain.

But that has never meant the brain invented the pain. That the brain can produce pain out of nothing. Without nociception.

The Hot Stove and Pain

If I put my hand on a hot stove, my brain produces the experience of pain.

The heat comes from the stove.

Without the heat, there is no pain.

The brain is essential. But so is the underlying biological stimulus!

Both matter. Both are essential for the experience of pain.

And in fact, the biological stimulus matters more. Because how do you stop the pain when you put your hand on a hot stove?

Do you change the way you think about pain?

OR do you take your hand off the bloody stove?

BIOLOGY MATTERS

Likewise, if my immune system attacks my joints...

If damaged, demyelinated nerves fire continuously...

If inflammation is destroying tissue...

The brain still produces the experience of pain.

But it is responding to biology.

Ongoing nociception.

Ongoing tissue damage.

It is not creating pain out of nothing.

And we already know that the brain can override pain from tissue damage…but only temporarily. Very temporarily. Minutes, maybe hours. Maybe. Most definitely not days, weeks, months or forever.

Changing thoughts cannot remove inflammation.

It cannot repair damaged nerves.

It cannot reverse ongoing pathology.

You need to treat the underlying pathology to reduce the pain (the hot stove). And if you can’t do that, if the underlying pathology is not curable, or even treatable, then you need to treat the pain medically.

If the pain is predominantly chronic primary pain, where ongoing tissue pathology is not the main driver and altered nociceptive processing predominates, then interventions targeting the nervous system and pain-related beliefs are appropriate. Because there IS NO hot stove.

If there is a hot stove, the answer is simple.

Take your hand off the stove.

Because no amount of pain education, reassurance or behaviour change will make a hot stove stop burning.

That’s why the distinction between chronic primary pain and chronic secondary pain isn’t an academic debate. It is the essential first thing to understand about each individual’s pain.

It’s the difference between treating the cause...

...and asking patients to think differently while their hand is still on the stove.

Currently, when a pain patient goes to pain management, they are told exactly that - change the way you think and referred to educatoin and psych. They are being told to think differently, while the doctor is leaving their hand on a a hot stove.

Not surprisingly, education and psych often fail to reduce pain. And this is why.

The brain produces pain.

Biology most often causes it.

Confusing those two ideas has become one of the biggest mistakes in modern pain care. And the biggest harm for people who live with painful, progressive, incurable disease or injury.

And still, people in power say pain is all the same. Created by the brain. it does not matter.

It matters.

Because if you don’t know why the pain exists, you can’t know how to treat it. If you don’t know whether the pain is predominantly nociplastic, nociceptive and/or neuropathic, you can’t possibly know how best to treat it.

All pain is NOT the same.

Everything else follows from that.

“The brain produces pain.”

That statement is true.

But somewhere along the way, it became transformed into something very different:

“The brain can produce pain without ongoing nociception.”

That is an extraordinary claim.

And extraordinary claims require extraordinary evidence.

The problem is that the evidence was never there.

Asaf Weissman and colleagues recently examined one of the central assumptions underpinning modern pain neuroscience - that pain can occur in the complete absence of nociception. What they found was not a strong body of experimental evidence, but something much more troubling.

Here’s the paper: Adieu to an aphorism: why nociception is necessary for pain

The literature repeatedly cited itself.

One paper would make the claim and cite another paper. Follow that citation, and it either didn’t support the claim being made, or it simply referred to another paper by the same group. Eventually the trail looped back to the original assumption.

A self-referencing circle.

An idea treated as fact because it had been repeated often enough. A literal game of chinese whispers…with pain patient’s lives on the line.

That’s not how science is supposed to work.

This matters because an entire philosophy of pain treatment has been built on that assumption.

Pain neuroscience education teaches that if people truly understand pain, they can reduce or even eliminate persistent pain by changing how their brain interprets danger.

It sounds appealing. It even sounds simple! Elegant…

But where is the evidence that someone with severe pathological pain from an active disease or injury can simply learn enough pain science to override it indefinitely?

There isn’t any.

Those who promote pain science education often point to battlefield stories.

A soldier loses a limb yet continues fighting, only feeling pain later.

Those stories are real.

But they do not demonstrate that the brain can switch off pain permanently. The brain can override the pain, but only very temporarily.

And they do not demonstrate that education about pain changes pain.

They demonstrate something we have always known: under extreme circumstances, shock, adrenaline and survival responses can temporarily suppress pain.

Temporarily.

When the danger passes, the pain returns.

The soldier doesn’t stay pain-free because they understood neuroscience.

They collapse.

They require medical treatment.

That’s a completely different phenomenon.

Yes, the brain can modulate pain.

Yes, attention, emotion, stress and expectation influence the pain experience.

None of that is in question.

But modulation is not elimination.

And temporary suppression is not permanent resolution.

And none of it demonstrates that severe pain arising from ongoing disease or tissue pathology can be switched off simply by thinking differently.

Yet that is what pain science education teaches. That is what pain science education expects patients to be able to do. That’s what clinicians expect patients to be able to learn to do…without any evidence that anyone has ever managed to do this.

There is not one shred of evidence that the brain can override pain from injury or disease, at will, long term. By learning about pain, or any other method, for that matter.

Yet clinicians believe that it can. They have been taught that it can. And when people cannot...it’s clearly their own fault!

When pain neuroscience education promises more than the evidence supports, patients inevitably blame themselves when it doesn’t work.

“If I still hurt, I must not understand it.”

“I must not be trying hard enough.”

“I must not be good enough.”

And often, clinicians blame the patient as well.

Obviously, it’s not the clinician’s fault, they explained pain.

Obviously, it’s not the intervention’s fault. The evidence…

And, very often, clinicians judge patients who say that pain neuroscience education does nothing for their pain. All the while not realising that there is zero evidence that it could reduce their chronic secondary pain in the first place.

Wrong patient. Wrong treatment. Wrong time.

And a complete lack of understanding, on the clinician’s part, of what pain IS. And how pain neuroscience actually works. Or doesn’t.

Not one study, controversial or otherwise, shows that pain neuroscience education can reduce chronic secondary pain. I’ve yet to find a study on pain science education that includes people with chronic secondary pain. They are always excluded from the study. And this is always in the small print, hidden away, when it should be listed first in the ‘Limitations’ section.

That’s why and how the Moseley’s of the world erased chronic secondary pain from the narrative. Shoved people with pathological pain under the rug. Ignored, abandoned, left to suffer.

Chronic secondary pain is caused by nociception. Not by the brain alone. And the brain cannot override pain caused by serious injury or disease, indefinitely. Not with education. Not with anything.

The brain can only be ‘retrained’ in chronic primary pain, where there NO explanatory pathology. Where the pain is caused by psychosocial factors.

Funny that Moseley neglected to make that point, in all his thousands of podcasts and seminars and webinars. Such an important point to make. Can’t imagine why he would exclude that information.

Pain neuroscience has taught us many valuable things about how the nervous system processes pain.

But it should never have been used to imply that understanding pain is, by itself, a substitute for treating the underlying source of nociception. Or that this is even possible.

Those are two very different ideas.

Only one is supported by evidence.

This is my normal.

Not a flare.

Not a bad day.

Every day.

1:00 am
Pain wakes me.

Get out of bed.

Take pain medication.

Sit on the couch and wait for it to work.

1:30 am

The pain eases.

2:00 am

Start work.

4:00 am

Too tired to keep going.

Doze on the couch.

5:30 am
Pain wakes me.

6:00 am
Wait.

Suffer.

6:30 am
Take my 7am morning pain medication early.

Wait for it to work.

7:30 am
Read emails.

Shower.

Pack orders.

Ship orders

10:30 am
Rest.

11:30 am
Take orders to the post office.

12:00 pm
Rest.

1:00 pm
Take pain medication.

1:30 pm
Work.

SEO.

Order stock.

Write.

Answer emails.

Do whatever needs doing.

Exercise.

4:30 pm
The medication wears off.

The pain takes over.

Rest.

5:30 pm
Cry.

6:30 pm
Go to bed.

Lie flat on my back.

Electric blanket underneath.

Heated throw on top.

Wait.

10:30 pm
Fall asleep.

Sheer exhaustion wins. Overrides pain. For a while…

1:00 am
Pain wakes me.

People ask me what it’s like to live with severe chronic pain.

This is what it’s like.

Not occasionally.

Not on the worst days.

Every day.

EVERY.

SINGLE.

DAY.

Every day is like this. Weekdays. Weekends.

My pain is eminently treatable, I do not have to live with this pain. But doctors refuse to treat me. They tell me that ‘the government’ will not let them.

And they are FINE with that. Totally fine with letting me suffer this way.

I have chronic secondary pain. Due to inflammatoyr arthritis and CIDP. these are incurable diseases. I have long standing disease not responsive to current therapies. My pain is opioid responsive. My treatment is palliative. But doctors refuse to give me pain relief. becuase its not cancer.

Are you OK with that?

Most days, it begins sometime between 1am and 3am in the morning. Most often 1:30am, if I’m honest.

Every day, pain wakes me. Every day, severe pain wrenches me from sleep I desperately need. But the pain is too severe to sleep through. As my pain medication wears off, the pain increases. Until it breaks through sleep. Break through pain. So, I am awake at 1am…2am…rarely will I sleep ‘til 3am. But it happens, on occasion. That’s a good day.

If I’m lucky, I take 10mg of immediate-release oxycodone, then lie on the couch with my dogs and my heated throw, and manage another couple of hours of sleep before the day really starts. “Couple” being literally two hours. If I am *lucky*.

The 10mg of oxycodone takes about 30 minutes to kick in, to reduce the pain enough to where sleep is possible again.

At around 7am I take my morning medications: 20mg extended-release oxycodone and another 10mg immediate-release. By then, the pain has climbed back into ‘severe’ territory, because the oxycodone has worn off. That combination of medications doesn’t make me euphoric. It doesn’t make me “high.”

It gives me a window.

A few precious hours where my pain drops low enough that I can work.

Because work has to be my priority.

I own a small business. I answer emails. I pack orders. I write. I advocate. I see specialists. I try to build a future while living with multiple disabling diseases. While living with constant, severe pain.

The thing that most people refuse to understand, refuse to accept, is that the pain is ALWAYS there. ALWAYS. And, unmedicated, the pain is moderate to severe. ALWAYS. It never drops below a 6/10, unmedicated.

It is neuropathic pain from CIDP, and inflammatory pain from mixed connective tissue disease. The pain is caused by ongoing tissue damage. It is chronic secondary pain. There is no psychological component to my pain. I have a clean bill of mental health. The pain does not resolve, not ever. The only way to reduce the pain is with opioid pain medication. I have tried every other medication, modality, and treatment option. Everything has either failed to help, created intolerable side effects, or is too expensive for someone on disability to afford.

Mostly though, the truth is, nothing else helps.

The only way for me to create a functional window is with opioid pain medication.

Everything important happens during that window.

Last night, I made a mistake.

I was grieving. Exhausted. In pain. Someone close to me has died. It has been a shock…though not a surprise. I am devastated.

At three in the morning, I reached for the wrong medication and took my morning dose instead of my overnight dose.

It wasn’t dangerous. It was NOT an ‘overdose’. It was the dose I used to be allowed to take, every day, every night. Before the barbaric forced tapers began, in June 2020.

Years ago, I was able to take three doses of 20mg + 10mg, and I could function all day. I had pain control across the 24-hour period. I had a career, a social life, and I lived, despite being in pain. The pain was manageable, because I had medication to manage it. Medication is the only thing that reduces my pain. Now I’m not allowed to manage my pain. Now, I am supposed to ‘live with it’.

You try living with constant, severe, pain. See how you like it. See how long you can take it. See what it does to your life.

This is why people choose to die. And people are shocked…but not surprised.

Taking that dose at 3am changes everything.

Because this wasn’t really a medication error.

It was a resource allocation error.

When your pain is severe enough that every day has only a handful of functional hours, you don’t measure your life in time anymore.

You measure it in blocks of time where the pain is managed. Where the pain falls below the level of severity so that you can function.

Those are your productive hours.

Those productive hours are given to you by pain medication.

By taking my extended-release medication at three in the morning and then falling back asleep, I accidentally spent some of those hours unconscious.

I wasted the best hours of my day. I slept through them.

Imagine charging your phone overnight, only to discover that you didn’t put it on charge properly. When you wake up in the morning, you see that your battery is nearly gone. And it’s only 7am. And you have an appointment, and you don’t have time to charge your phone now. But you need your phone.

That’s what it felt like.

When I woke up, part of my day had already gone. The best part. My most functional hours…wasted.

I have an endocrinologist appointment this morning. By the time I am in the waiting room, my meds will have mostly worn off. By the time I get home, I will be in severe pain.

Now I have no low pain hours to pack my orders. And I got five orders overnight. They need to go out today…but that is impossible.

If I don’t pack my orders fast, my customers will go to Amazon. My customers come to me because I have premium products and I provide personalised, very fast service. That’s my USP.

Now, I can’t do that.

Five orders is more than I can manage on a good day. Today has now become a bad day.

What I will have to do is take my 2pm dose at 9am. Then, when I get home, I will be able to pack my orders.

Because its five orders, with many items per order, and I have to create the product and then pack it in shipping boxes, it’s a very physical job. My pain relief will run out before 2pm.

And then I will be done for the day. And I will be able to do nothing but lie on the couch, in terrible pain.

Until I am allowed to take my next dose. Which will be one or two or three am. About 12 hours of lying there in severe pain.

And that will be my day. Because I made a simple mistake.

Completely wasted hours. Completely wasted life.

The irony being, that my pain is VERY TREATABLE. Easily managed! It used to be well managed, and now due to arbitrary dose limits that are NOT EVIDENCE BASED, I am forced to suffer.

This is not living. Its barely surviving.

This morning I have five customer orders waiting to be packed.

Yesterday afternoon there had only been two.

I had chosen not to pack them because grief had caught up with me. I was exhausted, sad, and felt like a horse kicked me in the chest. Yes, emotions can create physical sensations. Maybe even what some people would call pain. No one is disputing that.

But it is NOTHING like physical pain caused by physical disease.

It is a very different experience. And I clearly know the difference between the two. If you’ve experienced both, it’s very obvious. Impossible to confuse the two. Yet thought leaders, doctors, politicians, researchers, continue to try and conflate the two.

I had all that work to do, and instead, I cooked dinner for my family.

I knew I’d regret it.

Not because I don’t care about my customers.

Because I care so much.

One of the things I pride myself on is dispatching orders within twenty-four hours. It’s a promise I make to the people who trust me with their business.

Now I have five orders instead of two, less pain relief left in the day, and a specialist appointment in the middle of the morning.

And now my day looks impossible.

Not because my diseases suddenly became worse.

Not because I had taken too much medication.

Not because I was impaired.

Because one small mistake shifted the few hours in which I am capable of functioning.

This is what people often fail to understand about long-term opioid therapy.

The goal isn’t sedation.

The goal isn’t comfort.

The goal is function.

The goal is to be able to DO things.

The goal is to LIVE.

Opioid pain relief allows people to LIVE their lives.

Taking pain relief away is pure barbarism. It is not medicine. It is not science. It is NOT SAVING ANYONE. It is literally killing people.

Every day I am trying to line up my best pain relief with the hours when I need to be productive.

When I need to pack orders.

When I need to write.

When I need to attend medical appointments.

When I need to cook dinner.

When I need to be a person.

People sometimes ask why chronic pain patients become so anxious about their medication.

This is why.

Not because we’re chasing a high. Not because we’re addicted. Or even dependent. Not because we’re afraid of withdrawal. Not for any reason other than we want to live our lives.

We’re trying to protect the tiny amount of normal life we still have.

Those few hours per day - for me its four to six - where I can function. Where I can work.

And yes, work comes first. Paid work.

Someone close to me died last week. So, I have done no advocacy work. It feels pointless right now. No matter what I do, people still die. Needlessly. But I have been doing other work. I am running my business. I am building a SAAS.

I am working. Always working.

Every pain tablet has become part of a complicated equation.

Every appointment has to be planned around it.

Every task has to be scheduled around it.

Every unexpected delay carries a cost.

The irony is impossible to ignore.

Policies introduced in the name of “safety” have forced many legitimate pain patients to live in ways that are less resilient, not more. Less safe, not more. Less functional, not more.

One small disruption - a sleepless night, grief, a medication taken at the wrong time - and the whole day can unravel.

That’s not because opioids are inherently dangerous. Again, this is NOT a dangerous error. It is taking a dose when the medication is due. I am just not allowed to do that anymore.

The problem is there is no margin for error when you are only allowed six functional hours a day, at best.

And it’s because the margin for error has been deliberately stripped away. Taken away from me by my doctors. On the orders of the government of the day. And a foreign government, at that.

If I still had adequate pain relief, this mistake would not have been a mistake, it would have been my usual routine. In fact, I would have taken the 3am dose at 10pm, when I went to bed, and I would have slept through the night. That’s what I used to be allowed to do. Before June 2020. Back when I was allowed enough medication to manage my constant, severe, pain around the clock.

But I am not allowed to manage my pain around the clock. I have to choose between sleep and function. I can’t have both. And now? I slept through my best functional hours.

And now it will dictate my entire day.

There is a stereotype that people living with chronic pain don’t want to work.

My reality is the opposite.

I wake in the middle of the night thinking about customer orders.

I feel guilty if they aren’t dispatched quickly enough.

I build my day around the few hours when I can contribute something useful to the world. I need to feel useful. And, of course, I need to earn money.

People often talk about reducing opioid doses as though the only thing being reduced is the number of tablets. In reality, what gets reduced is flexibility. What gets reduced is function. What gets reduced is life. And for people whose lives already operate within very narrow margins, that is often the difference between coping and not coping.

The difference between living and not living.

I don’t need more motivation.

And I am quite determined enough.

I need enough pain relief.

As for this particular mistake, I’ve already solved it.

From now on, my overnight medication will stay separate from my morning medication.

A simple change that should stop this happening again.

Patients adapt.

We always do.

The question is why we are expected to keep adapting to systems that force us to ration not just our medication, but our ability to live.

My son had appendicitis on Saturday night. Sunday morning, emergency appendectomy. Sunday afternoon I spent in hospital with him. Not only did I want to be with him, I know that you will get much poorer treatment, as a patient, if there is no family member there with you. So I stayed. Until 4pm in the afternoon. At that point I’d been awake for over 30 hours.

At 5:30pm he called me because after shift change, his new nurse forced him to eat dinner that he didn’t want. He then threw up, and the nurse left him sitting in bed, holding a full vomit bag, for over 30 minutes.

I got in my car and drove straight back.

Literally within an hour of my leaving, he was ignored and neglected and mistreated by one bad nurse. There is always that one bad nurse. Most are good, some are brilliant. But there’s always that one bad one who makes everyone look bad.

A wonderful doctor took care of the situation, before I even arrived, and that nurse was sent home. I hope permanently! It sounded as thought that’s a possibility.

To be clear, my son is an adult. However, NO patient should be ignored like that, abandoned, left sitting in bed, covered in vomit, for 30 minutes.

What was amazing was the doctor took care of the nurses duties for the rest of the shift. Unheard of! She did his obs, and gave him lots of information. She stopped to chat, and answer all his questions. Most of all she was kind! I think she was truly appalled at what the nurse did (or rather, did NOT do). She was incredible. Empathetic, caring, and doing a nurse’s job because the nurse was an incompetent asshole. She had no ego, she did what was necessary for her patient. A young man, recovering from his first surgery. And emergency surgery at that.

NEVER be alone in hospital. NEVER allow your family member to be alone in hospital. I have almost died because nurses decided I could wait. That I was whinging. That I wasn’t really as sick, or in as much pain, as I was telling them. And there was no one there to advocate for me, so I was allowed to bleed out in a hospital bed. For five days. But that’s another story.

I stayed until 9pm, at which point I was falling asleep on the hardest wooden chair I’ve ever had the privilege to sit on. I was literally nodding off. My son was very drowsy and nodding off as well. And he was in the hands of a wonderful doctor. I told my son I had to go. Any longer and I would not be safe driving home.

The cold night air woke me up for the ten-minute drive home.

By the time I got to bed, I had been awake for 40 hours, with the exception of 1 hours sleep, almost 24 hours ago.

I pushed my body to its limits. I will do that when it’s my children. Adults or no, they are my children. Always. And they always come first.

Happily, my pain was no worse than usual.

In fact, that’s what struck me most. Forty hours awake. Constant stress. Driving back and forth to hospital. Worrying about my son. Running on fumes. According to many popular ideas about chronic pain, this should have sent my pain through the roof. Thankfully, it didn’t.

In fact, it was better than usual. Perhaps it makes no sense, but that’s how it worked out. I’m just grateful.

What I do have is a nagging headache. From sleep deprivation. I am so tired…still.

I spent all day Sunday at the hospital. And Monday he was discharged around noon. I got him settled at home, and went to the shop for some comfort foods, and favourite snacks. Mostly simple foods, bland stuff. But some nice things too.

He is recovering well, but surgery is painful. Recovery is painful. These are just facts. It was minimally invasive laparoscopic surgery. But he still has three puncture wounds in his belly, and he is bruised internally and externally. It takes time to heal.

Thankfully, he is in good health and his recovery is uncomplicated, wounds are healing nicely and I’ve made an appointment with his GP for follow up. When he needs something, I drop whatever I am doing. Because my kids come first. Always.

I spent Tuesday filling orders that were many days overdue. And apologizing and explaining to customers. Everyone was lovely and understanding. Wednesday was pretty much the same. More orders. Thursday, more orders, for which I am thankful. But I cannot catch up as long as orders are still coming in. In fact, each day I am going backwards.

Today I have coding work to do, I need to be alert. I need to think straight.

But first, I have to go to my GP, go to the shops and grab some more breakfast cereal. And then home to make breakfast for my son.

I am still exhausted. I need more sleep. Pain does not allow me to catch up on sleep. I cannot have a big, long sleep and catch up, like a normal person.

I can’t do that because the pain becomes too severe after four to six hours. I wake up in too much pain to get back to sleep. Therefore, my sleep is continually interrupted.

Because I am not allowed to take my pain medication before bed. I have the same choice – pain medication to function during the day OR pain medication to sleep at night. Not both. Never both. Which means I wake when the pain becomes severe enough to wake me. Every night. And that’s usually after about four hours sleep. Sometimes six.

I could take another extra dose of pain medication, but I can’t risk that.

So I can only ever sleep a maximum of six hours.

I still have sleep to catch up on.

I will get there. Eventually.

Frankly, I have done an amazing job, if I do say so myself.

I can, and will, push my body to its limits, when I need to.

I am strong. Mentally and physically. Though, I must say, getting through something like this, on zero sleep, is more a mental game than a physical one. The body follows the mind. I had to stay awake. I had to function. I had to be there for my son. Yes, I took extra pain medication to manage it. But I refused to buckle. Refused to give in, until my son was ‘safe’. And sleeping comfortably. Simple as that. It had to be done.

If anything, this experience demonstrates how determined I am. How mentally strong. This is important to me, as a chronic pain patient. Who is regularly assumed to be, and accused of being, weak and lazy.

Interestingly, none of the things pain patients are routinely warned about seemed to matter much. Stress didn’t flare my pain. Anxiety didn’t flare my pain. Worry didn’t flare my pain. Lack of sleep didn’t flare my pain. What helped was having enough medication to keep functioning while my son needed me. That’s what I needed. But no more than I need it every day of my life.

Point being, there are a lot of assumptions in chronic pain. But these have been elevated to hard and fast rules. Medical fact. That people belief.

But they are not fact. They are possibilities.

Yes, stress can increase pain. No, it doesn’t always.

Yes, sleep deprivation or poor sleep can increase pain. No, it doesn’t always.

Yes, doing more activity than usual can increase pain. No, it doesn’t always.

Each person, and each situation, is individual. Unpredictable.

I may be in trouble at the end of this month. You may recall I had a day where I took an extra dose of pain medication because I needed to sleep. Well, now I have taken three extra doses. It was an emergency, and I needed to be upright, and functioning. So, I took what I needed to function.

Will my doctors understand that?

Will they?

Is that a good enough ‘excuse’?

DO they allow for emergencies requiring more pain medication than usual, to function? To cope?

Or will I be red flagged for misusing, or abusing, my pain medication?

It is two more weeks until my pain medication refill appointment.

We will see.

TL: DR

Key points:

1. The existence of my pain does not mean:

· That I don’t understand the biopsychosocial model

· That I must still have psychological factors amplifying my pain.

· That I am stuck in the biomedical model.

2. Sometimes chronic pain is purely nociceptive and/or neuropathic, with no nociplastic contributors. Meaning the pain is purely biological. All pain is biopsychosocial, but not ALL the time.

3. It’s the BIOpsychosocial model. BIO comes first, for a reason. Because bio is most often the biggest contributor to chronic pain, especially in chronic secondary pain. In chronic primary pain psych is the biggest contributor. Two completely different kinds of pain, that requires completely different treatment.

The “bio” is part of the biopsychosocial model. Some people want to forget that. They try to erase the bio. But it’s there. And not only that, its first. And that’s by design.

Apparently, this person’s reasoning is that I’m “stuck in the biomedical model” because I said my pain is now 100% biological.

They said pain is never 100% biological.

Sigh.

Yes. Sometimes it is.

I’m just further along than you think I am. Than you give me credit for. Frankly this person gives me no credit. He also said I am “just a patient…what would you know”.

Delightful, right?

I am not saying ALL pain is 100% biological.

I am saying MY pain is.

Important difference.

Why do I say my pain 100% biological?

I’ve already done the psychological work.

The fear? Worked on it.

The catastrophising? Worked on it.

The grief? Worked on it.

The “what if my life is over?” spiral? Been there. Worked on it.

Now? I have no anxiety, depression or distress due to chronic pain. I do not catastrophize. I do not ruminate.

Consider me the AFTER photo to your BEFORE

If psychological factors can be treated - and we are constantly told they can - then logically, some people will eventually reach a point where those factors are no longer significantly influencing their pain.

Right?

Isn’t that the point of psychosocial treatment? Isn’t that the goal of treatment? To get people to that point?

Otherwise, what exactly are we treating them FOR?

If you don’t believe a person can manage the psychological factors influencing their pain, if you don’t believe a person can modify these factors, what is the point of pain science education and/or psych treatments like CBT and ACT?

These therapies are ways to reduce fear and anxiety and improve function (note: they have not been shown to reduce pain).

If you don’t believe these therapies can eliminate the psychological factors amplifying pain, then why provide them?

Also…

Not everyone requires a psychologist, or other clinician, to teach them about pain, or that worry is a complete waste of time.

I came to that conclusion all on my own. About 20 years ago.

I worried in the beginning. I catastrophised a little bit. Then I realised there was absolutely NO point in worrying about the future. That what would be, would be. And worrying about it was not going to change anything. Worrying about it was only going to make me miserable.

So I stopped worrying. Yes, just like that.

It worked for me.

Not everyone needs to learn about pain science. That is only one way to achieve the same result.

It is NOT the only way.

Sometimes pain is just pain

People seem deeply uncomfortable with the idea that sometimes pain is just… pain.

Not fear.

Not trauma.

Not suppressed emotions.

Not “unhelpful beliefs.”

Not my inner child crying out through my lumbar spine.

Just pathology.

Just pain.

I know this because I live in this body.

I am in an unusually strong position to assess whether I am assigning fear, meaning, emotion, or catastrophising, to my pain.

I’m not.

Although some ‘thought leaders’ just love to tell me I am wrong. That I must have psychological factors amplifying my pain, because I am still in pain.

This is a logical fallacy.

I am still in pain because I live with painful, progressive, incurable disease that causes ongoing tissue damage.

Bio pain. Not psych pain.

I usually don’t like to use “because I know more than you” as a winning argument. It’s kinda up there with “because I said so!”.…but, in this instance, given it’s my pain, my body, my mind, my whole, integrated, mind-body self, I do know more than you, dear thought leader.

And I am not anxious, depressed or distressed.

I have had three, count ‘em, three psychologists examine and assess me. All three came to separate but same conclusions: there are no psychological factors amplifying my pain.

And no, the fact that I have PTSD does not explain my pain. It has nothing to do with my pain.

My pain is purely bio now.

I don’t give my pain a colour.

I don’t name it Steve.

I don’t negotiate with it like it’s a difficult coworker.

It’s severe pain from serious, incurable, progressive disease. No more, no less.

And when it hits 8/10, no amount of “reframing” turns that into cozy comfort. Ever.

What’s funny is the people accusing me of being “biomedical” are usually the most rigid thinkers in the room.

They frequently quote their heroes, or their favourite textbook, word for word. But are unable to discuss and analyse chronic pain, discuss and analyse the theories, discuss and analyse the studies, discuss and analyse the evidence.

They haven’t really thought about it, clearly.

Most importantly, they are unable to discuss the mechanism by which their favourite therapy reduces pain. They are unable to explain HOW it works. WHY it works. And for WHOM it works (and for whom it does not). They just quote what their favourite pain guru’s course taught them. Essentially its “Because HE said so”. Another winning argument.

Perhaps they are stuck? Being able to quote a textbook does not signify understanding, in my opinion. It demonstrates rote learning, a good memory. They don’t need to understand HOW EP or PRT works, because they just believe that it does. In that slavish, cultlike way. Because their favourite guru said so. And that’s enough for them.

Its not enough for me.

I’ve done a deep dive into the evidence. And you’d all be deeply shocked at how little evidence there is that any of this stuff moves the needle at all.

What is clear is that these people have decided, that because I am still in severe, daily pain, that psychosocial factors must still exist. Must still be driving my pain.

Yet I have been diagnosed with refractory rheumatoid arthritis, CIDP and a rare bone disease that has caused the degeneration of my spine. All documented. Unequivocal diagnoses, mostly biopsy proven.

Yet they ignore this and want to blame my pain on psychology.

Why?

I genuinely do not understand this thinking. Of course my pain is caused by pathology. Biology. Structural damage. Disease. Inflammation.

Not psychology.

I am not “stuck in the biomedical model” simply because I reject the claim that my pain is being maintained by fear, beliefs, or psychosocial factors after already addressing those things.

In fact, my position is arguably more evidence-based:

• I accepted the possibility of psychological contributors.

• I engaged with the therapies.

• I examined my own thoughts and behaviours.

• I reduced fear and catastrophising.

• I gained insight.

• And then I observed: the pain remained.

This is data. This is evidence. This is the reality of my situation.

I have been in pain for 20 years. For the last 10, the pain has been constant and severe. I have done the work. I do not understand why that should be so difficult to accept.

A model that cannot accommodate patients who have genuinely done the work and still have severe pain is an incomplete model.

And this is the part many people miss:

Accepting biological drivers in ongoing pain is not the same thing as denying psychological drivers exists.

These people are always so binary. It’s always “either / or”.

Two things can be true at once.

I am not saying:

“Psychology never matters.”

I am saying:

“Psychology is not automatically the primary maintaining factor in every person with persistent pain.”

The same is true for biology.

“Biology is not automatically the primary maintaining factor in every person with persistent pain.”

There is nuance. Most of all, there is individuality.

And it is the job of the treating clinician to figure out what factors are driving and influencing the pain. This requires thorough history taking listening to the patient. You cannot just assume its psychological. That’s why we’re all in the mess we’re in – assuming.

Assuming that every person with chronic pain has psychological factors driving their pain is illogical. And does a world of patient harm.

Sometimes pain is just pain. Sometimes pain is just biological.

If that offends you so deeply that you drop your professional facade and start name calling…time for a rethink.

Most people with end stage osteoarthritis have purely biological pain

Think about hip replacements. They are often used as an example of psychosocial factors, of persisting chronic primary pain. But here’s the quiet part they don’t say out loud:

In 90% of people who have hip replacements, their pain resolves completely.

The vast majority of people have surgery, and their pain resolves.

This means their pain was biological. And was fixed by surgery.

The minority, the 10% who have ongoing pain, may have a nociplastic contributor to their pain. They very likely have psychosocial factors driving their pain.

But they are the minority.

The problem is the prevalence of nociplastic pain has been wildly overstated. Its not as common as you’ve been led to believe.

But the real irony is that some people use “biopsychosocial” in an extremely non-biopsychosocial way:

• “bio” gets reduced to “the original trigger,” the injury that has now healed.

• “psycho” becomes the presumed maintenance mechanism,

• and “social” becomes compliance pressure.

Rather than understanding the BPS as an integrated model, that is different for every person.

The BPS does not mean that every person has factors from every category influencing their pain, at all times.

The biopsychosocial model includes people whose pain is overwhelmingly biological. That still fits the model.

The BIO is literally in the name. Much as many people seem to want to believe it’s the “psychosocial” model of pain. And the “bio” the first part of the name for a reason: because overwhelmingly, the bio is the greatest contributor to pain. If you examine the evidence with a critical eye, that is very clear.

And to be frank, if your framework collapses the second someone says:

“Actually, I’ve already addressed the psychological side…”

…then maybe your framework is not as robust as you think it is. Or maybe your understanding of the model is not as robust as you think.

This is exactly why I continue to write and campaign about the difference between chronic primary pain and chronic secondary pain.

No.

The pain is genuinely worse at night. Trust me on that. I live it.

On top of the neuropathic pain, I had a full-body mega flare. Inflammatory arthritis. That’s when almost every one of my joints flare. Wrists. Fingers. Ankles. Toes. Knees. Hips. Shoulders. Elbows. Every movement hurt.

Note: this was not ‘widespread pain’.

People hear ‘pain everywhere’ and instantly think “widespread pain”. And then jump to fibromyalgia, anxiety, central sensitisation, or psychosomatic explanations.

No.

Inflammatory arthritis can affect every joint in the body simultaneously. When all those joints flare at once, the pain becomes widespread because the disease is widespread. But this is not ‘widespread pain’.

This is not stress.

Not fear.

Not catastrophising.

Not “pain hypervigilance.”

It is an incurable, progressive, inflammatory disease attacking my joints.

And before anyone asks: no, I did not “overdo it.”

I used to obsessively search for triggers. I kept logs. Food diaries. Weather tracking. Exercise tracking. Stress tracking. Sleep tracking. I analysed everything trying to predict flares.

Sometimes there are no obvious triggers.

Sometimes the disease simply flares.

It is the nature of the disease.

That reality makes people uncomfortable because they want chronic illness to be controllable. They want to believe that if you just manage stress properly, think positively enough, meditate enough, exercise perfectly, eat perfectly, pace perfectly, then you can avoid severe pain.

That’s understandable. That’s exactly what I wanted. Exactly why I logged everything, to try and find the trigger. I was trying to gain control.

But sometimes biology does not negotiate.

Sometimes pain is just pain.

So I did everything I am supposedly “supposed” to do.

Heat packs.

Heated blanket.

Anti-inflammatory medication which I should probably avoid because of my kidneys and eosinophilic esophagitis.

Distraction.

Quiet documentaries on YouTube.

Ride it out.

Breathe.

Meditate.

Stay calm. And mindful. And in the present moment.

And eventually…I reached the point where I could not tolerate the pain anymore.

So I took an extra dose of pain medication.

20mg OxyContin + 10mg Oxynorm.

An extra 30mg of oxycodone. An extra dose for the day. The dose I used to take every day, before the forced tapers.

Within an hour, the pain dropped from unbearable to manageable. Not gone. But survivable.

And then something extraordinary happened.

I slept.

Deeply.

For the first time in months, I slept through the night until 5am.

Usually I sleep four broken hours, wake around 2am in pain, get up, work for a while because lying there hurts too much, then maybe doze briefly on the couch for an hour, before morning.

But last night I slept properly because the pain was finally controlled well enough for my nervous system to rest.

And this morning I woke up feeling…human.

Not euphoric.

Not “high.”

Not intoxicated.

Rested.

I got to do what most people do every night, and take for granted – sleep. I don’t get to do that usually, because it requires pain medication.

And here is the part that terrifies me, and chronic pain patients like me:

If my doctor discovered I took that extra dose, it could be used as justification to forcibly taper or cease my opioid medication entirely.

Not because I was intoxicated.

Not because I was chasing euphoria.

Not because I was getting high.

Not because I was out partying.

Not because I was crushing tablets or injecting drugs.

I simply took an extra dose to manage unbearable pain.

But simply taking an extra dose is considered an “aberrant behaviour.”

A warning sign.

A red flag.

A sign of addiction.

Think about how absurd that is.

A person with severe uncontrolled pain takes additional pain relief to reduce severe pain enough to sleep - and this is interpreted as evidence of addiction rather than evidence that their pain is inadequately managed.

In almost every other area of medicine, worsening symptoms leading to increased medication use would be interpreted as evidence the disease is not adequately controlled.

But in chronic pain patients, the exact same behaviour is often interpreted through the lens of suspicion.

Not:

“This patient’s pain control may be inadequate.”

But:

“This patient may be addicted.”

That distinction changes everything.

Because once a pain patient is viewed through the lens of “problem use,” fear enters the room.

Fear of being labelled.

Fear of losing access to pain medication.

Fear of forced tapering.

Fear of abandonment.

Fear of not being believed.

And so patients learn very quickly to stay silent.

They underreport pain.

They hide suffering.

They can’t be fully honest with their doctors, the risk of punishment is too great.

They pretend they are coping better than they are.

They endure unbearable nights quietly because honesty itself becomes dangerous.

Last night I made a calculation many chronic pain patients understand intimately:

Take the extra dose and survive the night.

Deal with the consequences later.

Hope for the best.

I had no other choice.