The “Not Chronically Ill” Claim Is Ableist Bullshit

The idea that somebody cannot be chronically ill because they look healthy, work, have hobbies or manage to enjoy their life is not just ignorant. It is an ableist demand that disabled people perform their suffering convincingly enough to deserve being believed.

Apparently, being ill is acceptable only when it looks the way other people expect it to look. If you are young, articulate, productive or capable of doing things independently, your disability becomes questionable. If you have a good day, you must not be that ill. If you get on with your life, perhaps you have mistaken a medical condition for a personality trait. And if you dare to identify as chronically ill without spending every waking moment visibly suffering, apparently you have fallen for some sort of cultural trend.

What absolute bullshit.

I have been angry about this for days. Not mildly irritated. Not vaguely disappointed in the state of public discourse. Properly, genuinely fucking angry, because this argument takes the ordinary complexity of disabled people’s lives and turns it into a reason to distrust us. It treats our capabilities as evidence against us, our good days as grounds for suspicion and our attempts to build a life as proof that we must never have needed help in the first place.

The problem isn’t that chronically ill people are sometimes capable. The problem is that people have decided capability and chronic illness are mutually exclusive.

I am a chronically ill disabled man. I have cerebral palsy, hydrocephalus and scoliosis. I have multiple lifelong, incurable conditions. In April 2026, I experienced my third shunt failure and needed emergency brain surgery.

I am 21.

I write software. I maintain projects. I spend time online. I have ambitions, interests and things I want to do with my life. I can be productive, stubborn, funny and perfectly capable of spending an unreasonable amount of time trying to fix a technical problem.

I am also disabled. I am also chronically ill.

These things have never contradicted one another. My ability to do something does not erase the things I cannot do, the things that hurt, the symptoms I live with or the medical emergencies I have survived. It does not rewrite my childhood or make the hardware in my head any less necessary.

I should not have to look sicker, achieve less or make my life smaller to convince somebody that my disability is real.

Apparently, that is a surprisingly difficult concept for some people to grasp.

Apparently, I’m supposed to be less capable

I’d genuinely like to ask some of these people to try living a day with only one dexterous hand.

Try gaming with one dexterous hand. Try getting dressed with one dexterous hand. Try tying your shoelaces with one dexterous hand. Try tying a tie with one dexterous hand.

Try carrying dishes with one dexterous hand, then taking them downstairs while having to think about your balance, whether you can actually support what you’re carrying, and whether you can get down the stairs without going arse over tit. Try bringing things upstairs when you can’t comfortably carry them all the way, having to put them down every few steps, regain your balance, pick them back up and repeat the whole fucking process.

Because that’s what my life can look like. I can’t always just pick something up, carry it where it needs to go and get on with my day. Sometimes I have to stop every few steps. Sometimes I have to put something down because I can’t safely manage it and keep my balance at the same time. Sometimes I have to work out how to do a task with one hand that was clearly designed for two. And sometimes I can’t manage it at all.

Think about how many ordinary tasks assume you have two hands that can coordinate, grip, manipulate objects and do what you tell them to do. Think about how much harder it becomes when you have to compensate with one dexterous hand while also accounting for balance and mobility. You’re not just doing the task any more. You’re figuring out how to do the task, how to do it safely, and how to recover when your body won’t cooperate.

And then imagine somebody watching you manage it and deciding that, because you managed it, you obviously aren’t disabled enough to complain.

That is what makes this attitude so fucking ridiculous. Being able to complete a task does not mean you can do it easily, independently in the way other people do, or without pain, effort, adaptations or risk. Sometimes it means you’ve spent years learning how to work around limitations that other people never have to think about.

Adaptation is not evidence that the disability has disappeared. Putting something down every few steps doesn’t mean carrying it was easy. Finding a way to tie a shoe with one dexterous hand doesn’t mean you have the same use of both hands. Getting the dishes downstairs doesn’t mean you weren’t struggling to keep your balance the entire time.

And I shouldn’t have to fall down the stairs, drop a plate or fail at a basic task before somebody accepts that these limitations are real.

I shouldn’t have to demonstrate everything I can’t do before people believe me about what I find difficult. I shouldn’t have to pretend I can’t do anything at all just to satisfy somebody else’s idea of what disability is supposed to look like.

If you only count the finished task and ignore everything it took to accomplish it, you’re not measuring ability fairly. You’re ignoring the disability and giving yourself credit for not seeing it.

The things other people take for granted

For quite a long time, I had to have my food cut into pieces for me because I couldn’t properly manipulate a knife and fork. Something as ordinary as cutting up your own dinner was something I needed help with. I still need somebody to do it for me sometimes, but I’ve mostly adapted.

And that’s the thing about adapting: people see where you end up, not necessarily where you started or what it took to get there.

They see me eating independently and don’t see the years when I needed somebody else to cut my food. They see me managing tasks and don’t see the ways I’ve had to modify how I do them. They see the result and assume the ability was always there, or that needing help in the past somehow no longer counts because I’ve made progress.

I even had fanfare for tying my shoelaces together. I still have the video.

Think about that. Tying my shoelaces was significant enough to be celebrated and recorded. It was an achievement. It was something worth making a fuss about because it was something I’d managed to do.

And I’m glad I did it. I’m glad I learnt. I’m glad I can look back at that video and see something I achieved.

But I shouldn’t have to explain why that achievement existed in the first place. I shouldn’t have to provide a fucking video archive of my childhood to prove that ordinary tasks have not always been ordinary for me.

For some people, cutting up their dinner and tying their shoelaces are things they learnt to do once and then barely thought about again. For me, they were skills I had to work towards, things I struggled with, things I needed help with, and things I had to adapt to manage.

Learning to do something that was once difficult doesn’t mean the difficulty was imaginary. It means you learnt to work around it.

And the fact that I can do more now doesn’t erase the fact that I needed help before. It doesn’t erase the effort involved, the limitations I still have, or the things I still struggle with.

That’s what I want people to understand when they look at a disabled person doing something independently. Independence can be the result of years of adaptation, practice and finding workarounds. It isn’t proof that the disability was never there.

I don’t want to be treated as incapable of everything. I want people to understand that capability isn’t all-or-nothing, and that being able to do something now doesn’t mean it was always easy, that I can always do it, or that I never need help.

I shouldn’t have to choose between having my achievements recognised and having my disability believed.

It’s taken me years to learn how to cook basic meals, cut things with a knife without cutting myself, and just be a normal fucking person.

Years. Not days, not a few weeks of practice, but years of figuring out how to do things that other people seem to learn and then never have to think about again. Things that are treated as basic life skills, as milestones everybody is expected to reach without much difficulty. Things that most people don’t even realise require coordination, dexterity and practice until they meet somebody who struggles with them.

And every time I made progress, it felt so fucking good.

Learning to tie my shoelaces. Managing to cut my own food. Getting better at cooking. Being able to do something for myself that I’d previously needed help with. Those victories mattered to me. They were proof that I’d learnt something, that I’d made progress, that I could do more than I could before. I had every right to feel proud of myself.

But at the same time, there was this horrible, nagging feeling that I shouldn’t have needed to celebrate any of it.

It felt infantile. It felt inferior. It felt as though I was being congratulated for doing things that a much younger child would be expected to manage, and that somehow made me less of a person.

I could be genuinely proud of myself and still feel embarrassed that something so ordinary had taken me so long. I could feel the excitement of finally managing a task and, underneath it, the sting of knowing that other people wouldn’t understand why it was an achievement in the first place.

There’s something particularly complicated about having to celebrate milestones that other people never even notice. You want to be proud of yourself, because you have worked fucking hard to get there. But you’re also painfully aware of the gap between what you’ve achieved and what society considers normal for somebody your age.

You end up measuring yourself against people who haven’t had to work around the same limitations, wondering why something that looks so easy for them has taken so much effort for you.

And then, when you finally get there, you’re expected to treat it as nothing special because it’s something everybody else can already do.

Fuck that.

I shouldn’t have to be embarrassed that I worked hard to learn something. I shouldn’t have to diminish an achievement because somebody else found it easy. And I shouldn’t have to pretend that learning to do something independently wasn’t a big deal just because the task itself seems ordinary.

The victory was real, even when the milestone looked small to everybody else.

But I also want to acknowledge the grief in it. I wish some of these things had been easier. I wish I hadn’t spent years struggling with tasks that other people could do without a second thought. I wish I could celebrate my progress without that accompanying feeling that I was somehow behind, lesser or embarrassingly childlike for needing to work so hard.

Being proud of myself didn’t automatically make those feelings disappear.

And that’s another part of disability that gets lost when people look only at what you can do. They see the finished product, the independent adult, the person who can cook a meal or cut their own food. They don’t see the years of practice, the accidents, the frustration, the dependence on other people, or the complicated feelings that come with finally managing something for yourself.

They certainly don’t see how hard you’ve had to work to feel like a normal fucking person.

I can celebrate what I’ve learnt and still be angry that I had to struggle so much to learn it. I can be proud of my independence and still wish I hadn’t needed to fight so hard for it. Those feelings aren’t mutually exclusive, either.

I’m allowed to be proud of how far I’ve come without pretending the journey was fair, easy or free of humiliation.

Apparently, I wasn’t supposed to learn languages either

I remember being excluded from primary school French classes for whatever reason. I don’t remember being given a particularly good explanation for it, either.

Years later, I got a merit in GCSE French. I went into my speaking exam without revision or notes and still passed at the same level as I did English.

I taught myself basic conversational Spanish, despite being denied the opportunity to take it at GCSE. And now I’m learning Scottish Gaelic, entirely on my own.

‘S e Eòghann an t-ainm a th’ orm agus tha mi ag ionnsachadh na Gàidhlig na h-Alba.

My name is Ewan, and I’m learning Scottish Gaelic.

I bring this up because I think it illustrates something important about the assumptions people make about disabled people. Being denied an opportunity doesn’t mean you lack the ability to pursue it. Needing to learn differently doesn’t mean you can’t learn. And somebody else’s decision about what you can or cannot manage is not necessarily an accurate reflection of your actual capabilities.

I was excluded from French classes as a child. I don’t know exactly what went into that decision, but I do know that it didn’t stop me from learning French later. It didn’t stop me from teaching myself Spanish. And it certainly hasn’t stopped me from trying to learn Gaelic now.

I’m not saying this to prove that I’m secretly more capable than people assumed, or to turn learning languages into some inspirational story about overcoming disability. I’m saying it because disabled people are routinely underestimated, and those assumptions can limit our opportunities long before anyone gives us the chance to find out what we’re capable of.

Sometimes we succeed despite those assumptions. Sometimes we have to teach ourselves because the opportunity to learn alongside everyone else was never offered to us. Sometimes we spend years figuring things out independently because the support, access or patience we needed wasn’t there.

And then, when we do succeed, people can use that success as evidence that we never needed the support in the first place.

I can learn languages and still be disabled. I can get a merit in French and still have difficulties with tasks other people find straightforward. I can teach myself Spanish and Gaelic and still need help cutting up my dinner sometimes.

None of those things contradicts the others.

My abilities are not evidence against my disability. They are simply part of who I am, just as my limitations are.

I shouldn’t have had to be good at French to deserve the opportunity to learn it. I shouldn’t have to demonstrate that I can teach myself a language before people accept that I might have been capable of learning one in a classroom, with the same opportunities as everyone else.

And I shouldn’t have to build a list of achievements to justify being treated as a person with potential.

I’m allowed to be disabled without being assumed incapable. I’m allowed to be capable without having my disability questioned. And I’m allowed to learn something simply because I want to learn it, without every achievement becoming a fucking argument for why I can’t possibly be as disabled as I say I am.

The third shunt failure

In April 2026, my VP shunt failed for the third time. You’ve probably heard this ad naseum on my blog.

On 16 April, I appeared fine. In the early hours of 17 April, I was on the living room floor with the dogs, convinced I was going to die. I crawled upstairs, vomited and cried on the bathroom floor. I was in agony, and even getting pain relief was complicated by how difficult it was to find a vein. I remember screaming.

I needed emergency brain surgery on 17 April.

This wasn’t a vague feeling of being unwell. It wasn’t me deciding that a bad day meant I was chronically ill. It was a medical emergency involving a device that had been in my head for around 17 years.

My second shunt failure, in 2009, was serious enough that I was airlifted to hospital and featured in a BBC News report. My survival through infancy had been reported in the local newspaper in 2006.

None of this is a secret. None of it is something I invented because being disabled supposedly became fashionable.

And yet, even with a history like mine, I still find myself dealing with the assumptions people make about what I can do and what that supposedly says about my health.

The frightening thing about a shunt failure is that you can be going about your life and then, suddenly, you aren’t. You don’t get to negotiate with your brain. You don’t get to insist that you have plans, projects or responsibilities that need finishing. You don’t get to decide that you’re too young for a medical emergency.

On 16 April, I appeared fine. In the early hours of 17 April, I was terrified I was dying.

Both things were true.

That is the reality of living with a condition that can become life-threatening. I can be doing reasonably well and still have a medical history that includes emergency brain surgery. I can be functioning, writing software and getting on with life, and still need a shunt to keep me alive.

Being capable on an ordinary day doesn’t make the emergency any less real. Surviving it doesn’t make me invulnerable. And recovering from surgery doesn’t mean I have somehow graduated out of disability.

Looking fine isn’t the same as being fine

This is what people miss when they make sweeping statements about who is and isn’t chronically ill.

They confuse appearance with reality. They assume that if somebody can speak clearly, make jokes, work, study, socialise or manage a household task, their health must be relatively uncomplicated.

They mistake what they can observe for everything that exists.

I live with cerebral palsy, hydrocephalus and scoliosis. I live with chronic pain, fatigue and brain fog. I have literal brain damage. My back hurts because of my scoliosis. I take prescription medication every day. These things do not disappear because I happen to be having a productive afternoon.

Even getting my medication can remind me of how quickly people make assumptions. I can feel judged at the chemist, as though I need to justify why I need the prescriptions I have been given. As though being young and looking reasonably well means I ought to be able to manage without them.

Why? What exactly am I supposed to look like to make the medication make sense?

Am I supposed to look exhausted all the time? Am I supposed to struggle visibly? Am I supposed to explain my medical history to every person who thinks I look too healthy to need help?

I shouldn’t have to.

I don’t owe strangers a demonstration of my symptoms. I don’t owe them a medical history. I don’t owe them a carefully curated display of suffering to make my disability legible to them.

And I certainly don’t owe them a performance of helplessness.

Some days I can do more than others. Sometimes medication helps. Sometimes adaptations make a task manageable. Sometimes I have enough energy to work on a project; sometimes brain fog makes even simple things difficult. Sometimes pain is bearable; sometimes it dominates the day.

None of this is contradictory. It’s the reality of having a body and brain that don’t function in the way other people might assume they do.

Chronic illness does not mean being equally unwell every second of every day. Disability does not mean being incapable of everything. And looking fine does not mean being fine.

The problem with deciding disability has become “cool”

In September, I wrote about a Telegraph article titled “How having a disability became cool”.

The premise itself was infuriating: the suggestion that disability had become some sort of fashionable identity, something people might claim because it offered social currency or made them seem interesting.

There is a world of difference between discussing changing attitudes towards disability and implying that disabled people are pretending, exaggerating or adopting an identity for attention.

When you frame disability as a trend, you encourage people to treat disabled people’s accounts of their own lives with suspicion. You invite the question of whether somebody is really disabled, whether they are disabled enough, whether their difficulties count, whether they are making too much of things that other people manage without complaint.

You make people feel entitled to investigate and judge the legitimacy of somebody else’s condition.

And the people who bear the brunt of that suspicion are often those whose disabilities are less visible, whose symptoms fluctuate, or who have learnt to adapt well enough that other people no longer notice the effort involved.

The irony is that adapting can make you more vulnerable to being disbelieved. You work hard to become more independent, only for that independence to be used as evidence that you never needed help.

You learn to manage your symptoms, and people assume you don’t have any. You learn to hide your pain because you still need to function, and people decide you must not be in pain. You learn to carry on because life does not stop for you, and people mistake that necessity for proof that nothing is wrong.

What are you supposed to do? Give up trying? Stop learning? Refuse to do anything you’re capable of doing in case somebody decides it undermines your disability?

That is an absurd standard to impose on anyone.

What exactly qualifies?

If someone wants to claim that a person isn’t chronically ill because they can still do things, I would like them to explain exactly where they think the line is.

How much pain do you have to be in? How often do you have to need help? How many tasks do you have to struggle with? How many hospital admissions do you need on your record? How many surgeries? How many prescriptions? How much of your life has to be visibly affected before your disability is acceptable to someone else?

And who gets to decide?

Does having a good day disqualify you? What about a good week? What if treatment improves your symptoms? What if you learn to cook, dress yourself, tie your shoelaces or carry something upstairs through years of practice and adaptation?

What if you work? What if you have hobbies? What if you laugh? What if you have plans for the future?

At what point do those things supposedly cancel out your medical conditions?

There isn’t a sensible answer, because the premise is flawed. There is no universal checklist of visible suffering that determines whether somebody is chronically ill. Conditions affect people differently. Symptoms fluctuate. People have different levels of support, different resources, different treatments and different ways of adapting.

Two people with the same diagnosis can have very different experiences. One person’s ability to do something does not tell you what another person can do, and neither person’s outward appearance gives you the whole picture.

You don’t need to understand every detail of somebody’s condition to respect what they tell you about it.

Recovery isn’t a moral obligation

There is another assumption lurking underneath all of this: that disabled people should always be striving to improve, but that if we succeed, we become less deserving of recognition or support.

We’re expected to work hard, adapt, become independent and overcome obstacles. But if we do those things, people can turn around and use our progress against us.

If we don’t manage something, we’re incapable. If we learn to manage it, we were never that disabled. If we need help, we’re dependent. If we become more independent, we must not need help any more.

It’s a rigged game.

My progress is not proof that my disability is less real. My adaptations are not a promise that I will never need assistance again. Learning to do something independently doesn’t mean I can do it every day, under every circumstance, without pain or risk.

And not every disabled person will make the same progress. Some people lose abilities. Some people’s conditions deteriorate. Some people will need increasing levels of support. Some will never be able to do certain things independently, no matter how hard they work.

They are not failing.

Disabled people do not exist to provide inspirational stories about perseverance. We do not have to turn every difficulty into a lesson, every adaptation into a triumph or every medical crisis into a story about resilience.

Sometimes a task is hard because it is hard. Sometimes needing help is just needing help. Sometimes a medical condition is fucking awful, and there is no uplifting conclusion to draw from it.

I can be proud of what I’ve learnt without pretending that everybody should be able to do the same. I can value independence without treating dependence as shameful. And I can want my life to be easier without having to prove that I have done enough to deserve that.

Stop treating disabled people like liars

I am tired of this constant suspicion.

Tired of the idea that disabled people must somehow prove we are suffering enough. Tired of the assumption that a person who can do something must therefore be able to do everything. Tired of the way independence gets mistaken for the absence of disability, and adaptation gets mistaken for recovery.

Tired of being expected to explain things that should not require an explanation in the first place.

I have spent years learning how to do things that other people take for granted. I have had to adapt to limitations that affect how I use my hands, how I move, how I balance and how I manage ordinary tasks. I have had to work out how to do things differently, and I still have days when those adaptations aren’t enough.

I have lived through multiple shunt failures. I have needed emergency brain surgery. I live with lifelong conditions that are not going to disappear because I have managed to build a life around them.

I am not less disabled because I can write software. I am not less chronically ill because I can laugh, make plans or have interests beyond my health. I am not less deserving of help because I have learnt to do more for myself.

And I am not obliged to make myself look helpless to reassure people that my disability is real.

The fact that I can do something does not mean it costs me nothing. The fact that I have adapted does not mean I no longer struggle. The fact that I have made progress does not erase the years it took to get there.

I should be allowed to celebrate learning to tie my shoelaces without feeling inferior for having needed to learn. I should be allowed to cook a meal without that being treated as evidence against my disability. I should be allowed to carry something upstairs, even if I have to stop every few steps, without somebody deciding that I must be perfectly fine.

I should be allowed to have a life.

Not a life that exists to prove how much I have overcome. Not a life in which every achievement is turned into an inspirational anecdote. Not a life in which I have to keep a running tally of my limitations so that nobody forgets I’m disabled.

Just a life.

I am allowed to be capable and disabled. I am allowed to be proud of my progress and angry about what I have had to overcome. I am allowed to need help sometimes and manage independently at others. None of these things cancels out the rest.

So the next time somebody suggests that a person cannot be chronically ill because they look healthy, work, have hobbies or manage to do ordinary things, perhaps they should consider how little they actually know about that person’s life.

They don’t know how much effort it took. They don’t know what it cost. They don’t know what happens when the person gets home, when the pain catches up, when the fatigue sets in, when the adaptations stop being enough.

And they don’t get to decide that somebody else’s disability is less real simply because they cannot see it.

I am not going to apologise for being capable. I am not going to make myself smaller to fit somebody else’s idea of disability. And I am not going to pretend that surviving, adapting and getting on with my life means I was never disabled in the first place.

I’m chronically ill. I’m disabled. And I am done entertaining the idea that those facts become less true whenever I manage to do something for myself.

I was apparently going to be vegetative. I feel like my namesake is fitting.

Ewan. The name carries the shape of a life people once expected to be almost entirely passive: a body kept alive, a mind presumed absent, a person reduced to a prognosis. Apparently, I was going to be vegetative. Apparently, the future had already been decided for me.

Instead, I am here.

I write software. I learn languages. I make things. I maintain projects. I have opinions, ambitions, frustrations and a life that is not reducible to the worst thing doctors thought might happen to me.

And sometimes I think my namesake is fitting in a way that feels almost mythic.

Making the bow and arrows with yew wood, then poisoning the arrows with the sap.

Yew has a long and complicated history in Britain. Its wood was prized for making longbows, particularly the powerful war bows associated with medieval English armies. A yew longbow was not just a weapon; it was the product of careful selection, shaping and knowledge of the material. The wood had to be worked with rather than treated as a uniform, lifeless thing. Its strength came from the different qualities of the heartwood and sapwood being used together.

Yew also became the centrepiece of churchyards across Britain. Ancient yews stood beside churches for centuries, sometimes long before the buildings around them, rooted in places associated with burial, memory and continuity. They were living landmarks: old, enduring and difficult to reduce to a single purpose. The same tree could be part of a sacred landscape, a witness to generations of lives and a source of wood for weapons.

There is something about that image that stays with me: a tree standing at the centre of a churchyard, surrounded by graves and history, while also carrying within it the material for a longbow. Something rooted, living and overlooked until somebody understands what it can become.

Wood becomes a bow. Branches become arrows. Sap becomes poison.

A body that was expected to be vegetative becomes a life with force behind it.

I am not saying this to turn disability into a revenge fantasy or to pretend that survival makes everything simple. I am not a metaphor for overcoming. I am not proof that every disabled person can or should achieve the same things. I am still disabled. I still need help. I still have limitations, pain, fatigue and days when my body refuses to cooperate.

But I am also not the prognosis people imagined.

I was apparently going to be vegetative. Instead, I am capable of making things with my hands, my mind and whatever materials I can find. I have learnt to work with what I have. I have learnt to adapt. I have learnt that being underestimated does not make the underestimate true.

And if people insist on treating my capabilities as evidence against my disability, then perhaps they should understand what those capabilities actually represent.

They are not proof that nothing was ever wrong.

They are the bow.

They are the arrows.

They are the sap on the tips: the accumulated knowledge, anger, adaptation and determination that came from being told what I would never be.

They are also the yew tree in the churchyard: rooted in a history I did not choose, still alive, still present, still growing around the assumptions people made about me. A tree can be ancient without being dead. It can stand among graves without belonging to them. It can be part of a sacred place and still contain the material for something dangerous, precise and powerful.

I am not less disabled because I survived the prognosis. I am not less chronically ill because I learnt how to make a life from the materials I was given.

I was apparently going to be vegetative.

Instead, I am here, rooted in the life I was told I would not have, and making weapons out of the assumptions that were meant to contain me.