On Illness Narratives, Ongoingness, and Unrecovery
University of Southern Mississippi Center for Ethics and Health Humanities
March 24th 2025
Foreword
Below follows the text of a lecture I wrote and gave online last March. I had hoped to get a chance to write more in the months that followed about the dangers of the sudden swell in propoganda about overdiagnosis, about why our governments and media became suddenly so enamoured of unevidenced overdiagnosis theories, and the impact of this on the daily lives of disabled people – on access to diagnosis, treatment and care – but I’ve been too busy being chronically ill, as usual. In light of certain discourse this week, I thought I would share the text of the lecture now. One day I will add to it. There are always plans, but there is always also the body. Today, I am too tired, and this will have to stand for me.
Grasmere, 7th August, 2026
This lecture is called ‘“Promoting Chronicity”: On Illness Narratives, Ongoingness, and Unrecovery’. It will build on some arguments I make in my book Some Of Us Just Fall around the inadequacy of current medical, cultural and societal understandings of chronic illness and narratives around ongoingness, and the practical effects of these failings, in terms of failures in care, support and illness management, discrimination, and disbelief. I will be raising questions about the ethics and implications of the way chronic illness is presented in the media, in medical discourse, and by our leaders. I particularly want to highlight the vast gap of understanding there is about what it is like to live with a chronic, incurable condition in a society that seems to have no way of understanding ongoingness, and how this lack of understanding is feeding into a resurgence of a dangerous discourse around diagnosis of chronic conditions: namely, that there is just too much of it going on.
The lecture is in three parts – discussing first diagnosis, then chronicity, then undiagnosis.
It comes with a content warning for some absolutely top-level prize-winning medical gaslighting and victim-blaming, as well as discussion of negative perceptions of disabled people and long-term illness, welfare cuts, and health discrimination.
Some Of Us Just Fall emerged out of the long and winding road to my diagnosis, in my mid-thirties, with the hereditary connective tissue disorder Hypermobile Ehlers-Danlos Syndrome (hEDS), and a year later with another hereditary condition, an iron-loading disorder called Genetic Haemochromatosis (GH).
Genetic Haemochromatosis is caused by various mutations on chromosome 6 of a gene known as the HFE gene. Its role in iron overload was discovered in 1996; around the time I first started showing the symptoms of iron loading. Twenty years before my diagnosis. The two most frequent mutations are known as C282Y and H63D, though it is believed many different mutations may play a role in the misfunction of the gene that causes a person to load iron.
Both of these conditions are manageable, but incurable. Both are also widely under-diagnosed, and as medical areas lack resources, research, and expert care, as I’ll discuss further.
Some Of Us Just Fall came out of a dual desire to try and make something useful out of my delayed diagnoses: if I could help other people get there sooner and increase awareness of these common but poorly understood conditions, my own suffering would not seem as pointless. I also wanted to create a record of ongoingness, of continuation, which resisted the narrative pull towards a conclusion that seemed both improbable and dishonest to me. I set out to write a book about what it means to not recover – an anti-recovery memoir – that would reflect people’s actual illness experience. I hoped it would be helpful – to other people with chronic illnesses, to their loved ones who struggle to understand what it’s like, and to medical professionals and policy-makers. I did not anticipate fully how the need to share these stories would become more and more pressing. My other most useful diagDnosis probably came from disabled artist and writer Abi Palmer’s art installation ‘Crip Casino’. The casino featured a doctored – apologies – fruit machine, with words in the mode of an exquisite corpse added so that when you spun the machine you received a diagnosis. Mine was ‘weak oral wisdom due to too much blood.’ Actually a remarkably good description of the state I was in pre-diagnosis.
Crip Casino’s genesis is described by Palmer like this:
On a research trip to a private Sanatorium in Budapest, I was fascinated to see how wealthy elderly women with arthritis related to their disability. Time and time again they explained how they “deserved” to be here, in this healing luxury resort, having saved their money successfully throughout their life. In contrast, during a medical stay at an NHS-based rehabilitation facility in London, I encountered many people who felt they “deserved” to be disabled for having made poor choices in life: damaging their joints by working in the cold freezer section in Tesco, or having had a baby.
Crip Casino is designed to explore the nature of deserving. Using 1:1 interactive games, DIY hacked fruit machines, the installation examines the relationship between chance and ritual, winning and losing.
It is brilliant, hilarious and terrifying precisely because it feels so close to actual medical diagnoses and uneven dispersal of resources and care. As a later description of the exhibition puts it, it explores how:
medicalised spaces make decisions about the patient’s body, and who has control over this process. Can you alter the outcome of your treatment or does the house always win? […] Through parodying and critiquing the wellness industry and institutional spaces, Crip Casino invited us to consider how luck affects our health, privilege and capacities; What does it mean to ‘deserve’ care and wellbeing? What must we do to earn it?
Abi Palmer
I have been thinking about this installation a lot this last couple of weeks, as our Labour government spins the wheel for all of us with cuts to welfare and changes to eligibility for disabled and chronically ill recipients, as I’ll discuss in the third section of this lecture.
1. Diagnosis
In the first part of this lecture I’m going to talk a bit about my experiences of diagnosis, and how I came to think about the process of diagnosis as itself a kind of ongoingness.
By the time I found out I had hEDS and Haemochromatosis I had lost the first half of my thirties trying to find out why I was so unwell, repeating a pattern I had already experienced in my teens, when I was first very sick, and in my mid-20s, when my symptoms had again spiralled to a point I had no option but to seek medical help. I had not done so lightly. As a sick teenager my quest to find out why I was sick, and what might make me better, had been a colossal waste of time and energy – precious resources for people, like myself, who live with energy-limiting conditions. It had been easier, in the end, to stop trying, and work on pretending to be well. I write much more about this in the book, and I’m not going to repeat all the details here, but I will repeat some of the conclusions I came to through those experiences of seeking diagnosis.
Let’s say I fumbled my way through childhood with clear signs of EDS and its common comorbidities, but didn’t become severely ill until after puberty – a common occurrence in girls with EDS – it took either 34 years or 17 to get my hEDS diagnosis.
With EDS this is not unusual. A 2024 review of EDS diagnosis by Rachel Trudgian and Terri Flood found that recent studies place the average time to diagnosis for EDS and related hypermobility spectrum disorders at 11-16 years.[1] There are currently 16 recognised subtypes of EDS, and many other related connective tissue disorders that can be difficult to distinguish from one another. While some forms of EDS are categorised as rare diseases, experts increasingly believe hEDS to rather be common and vastly under-diagnosed:
‘American EDS specialist Dr Derek Neilson suggests that rather than the assumed figure of 1 in 15,000–20,000 people, the incidence of hEDS might be 1 in 500, or even higher, a figure replicated by a study conducted in Wales in 2018.[2] The Welsh study is pretty clear about its findings. hEDS is not rare, it is frequently misdiagnosed, and women particularly have delayed diagnosis. In 2012 specialists were already arguing that hEDS is ‘the most common, though the least recognised, heritable connective tissue disorder’.[3] Importantly for me, my hEDS diagnosis lead directly to my Haemochromatosis diagnosis, as it was the specialist gastroenterologist I was sent to to help manage my hEDS-related gastrointestinal symptoms who checked my ferritin levels and realised I had Haemochromatosis too.
I write in the book about the role accurate diagnosis may play in a life:
Diagnosis is like a wedding: not an end point, but a beginning. Diagnosis is a door opening on the rest of your life, and if the diagnosis is correct, when the door opens, behind it there will be the tools you need to make life manageable, or the chart that tells you where to go next to find what you need, or a whole new world to walk into.
Polly Atkin, Some of Us Just Fall
For me, diagnosis was a lifeline, in many ways at once. The mismanaged symptoms of my hEDS had been making my life increasingly unbearable, unworkable, untenable, but the iron building up in my organs due to the unrecognised iron-loading was slowly killing me.
I’m not being hyperbolic. In undertreated Haemochromatosis iron-toxicity affects any organs the excess iron is stored in, including the liver, heart, and brain, and is associated with increased mortality. If treated, damage can be limited, but it has to be diagnosed first.
The death in 2023 of Miranda McHardy at 59, after a too-late diagnosis of Haemochromatosis, spurred on the creation of a screening programme in rural Scotland. As Haemochromatosis UK, the charity dedicated to the condition, states: ‘Recent research suggests that around 1 in 113 people in Scotland are pre-disposed to the condition, but fewer than 1 in 20 have been diagnosed.’ Early diagnosis saves lives, and diagnosis with Haemochromatosis is relatively straightforward – a full iron panel to check transferrin saturation against ferritin levels – a way to check stored iron and available iron in the body – and a gene test to confirm one of the presence of one the known gene mutations that cause Genetic Haemochromatosis.
This echoes the statistic I quote in the book:
Recent estimates put the probable number of people with haemochromatosis in the UK at 1.2 million, based on the prevalence of the three genetic mutations which most commonly require treatment. Yet only 20,000 of us are diagnosed.
Polly Atkin, Some of Us Just Fall
Haemochromatosis is most concentrated on the island of Ireland, where it is said it affects 1 in 83 people across the island, with 1 in 5 people being carriers of the genes. An extraordinary 1 in 10 may be affected in Northern Ireland. In Wales and England the figure is said to be 1 in 150. As we all know, the Irish and Scottish Diaspora and British colonialism spread those genetic mutations widely, and the incidence of Haemochromatosis in the US is estimated to be somewhere around 1 in 300.
So why did my diagnoses take so long?
What factors delayed them?
In part, it is down to a simple lack of resources, where resources include experts sufficiently versed in conditions to even look for them, let alone diagnose them.
As I relate in the book, I was tested for the rare copper-loading condition Wilson’s Syndrome by a neurologist, but common Haemochromatosis was never considered, despite the symptom overlap, and the fact my bloods clearly showed rising ferritin levels.
There is something else at play in such an entrenched culture of delayed diagnosis, though, other than lack of resources and expertise. In the book I put it this way:
To diagnose is to distinguish one thing from another, to discern, to know thoroughly. You have to ask the right question to get the right answer. This is as true of the human body as it is of the earth. It is as true of a human as a plant that won’t thrive, of a sick person or a poisoned lake. Sometimes it is the whole system at fault, sometimes it is one element out of balance you have not even considered. The rhododendron that chokes the forest floor, the blackout blind of algal bloom that throws the water into darkness. You can only diagnose a condition if you are aware it exists in the first place, and if you have an idea of what its presentation might be. You have to believe there is a right question to ask. You have to believe there is an answer.
Polly Atkin, Some of Us Just Fall
What I found, time and time again, is that the vast majority of medical professionals I came across over the course of my life simply were not asking the right questions. For an alarming number of them, the problem was not that they did not know there were other questions they could be asking. They did not believe there was a right question to ask, and did not believe there was an answer.
In the book I write:
If I had not been diagnosed with EDS, I would not have been diagnosed with haemochromatosis. One diagnosis gave me back control over my life; the second saved my life. One would not have happened without the other opening the right door. Diagnosis is a chain. Link to link. It can drag you down or give you a lead to follow. When the doctor recognised my high iron levels she said something I had thought for a long time – that many doctors, when faced with a patient with a clear history of one condition, choose to put every single thing the patient complains of down to that one pre-known condition, and don’t do the appropriate investigative work. It is a deliberate, if subconscious, looking away. It is easier to not keep on asking questions, it is easier to stop looking for answers.
Polly Atkin, Some of Us Just Fall
2. Chronicity
I’m going to step sideways now to talk a little about Chronic Illness, and the concept of Chronicity in illness, to think about some of the reasons this looking away might happen.
The title of this lecture comes from a healthcare guide on so-called medically unexplained and functional symptoms I stumbled over in 2018, that claims the quest for diagnosis ‘promotes chronicity’. In the years that followed I couldn’t stop thinking about this phrase – promotes chronicity – as though it is a lifestyle choice, as though it is addictive. As though anyone would choose it if they could.
It was especially intriguing and alarmin to me that it is the quest for diagnosis that is seen to promote chronicity here, and not delayed diagnosis or lack of appropriate treatment or care.
I could not understand this idea. How can people avoid their illness becoming worse if they do not know what is causing it or making it worse? This was something I had plenty of firsthand experience of, as my own symptoms had worsened and expanded in the decades I had been told that that their cause was variously: my gender, my age, my diet, my sexual activity, my activity, my thinking, my thinking, mostly my thinking.
These are a few of the things I write about Chronicity:
Chronic comes from the Greek khronikos (of time, concern- ing time) from khronos (time). From the fifteenth century it was being used to refer to diseases which lasted a long time. The literal sense of chronic, ‘pertaining to time’, has long since been swallowed up by that other sense, of long-termness. Of something that goes on, or goes and comes back. The worst house guest. A pest. […] Chronicity emerges in 1829 to mean a ‘state of being of long continuance’.
A chronic illness is an illness which belongs to time. But it doesn’t just last a long time: it changes time, eats it. It takes you into time, and changes your relationship with it. A chronic illness is the end of time. Time as you knew it dissolves into chronic time, as life as you knew it dissolves into chronic life.
We don’t have a language or narrative for talking about long- term, non-terminal conditions. Everyone reaches a terminus eventually but it is the length of the journey that decides the terminology. We go long-haul, as they say now of those unrecovered from Covid-19.
Chronic illness is a full-time job, is a community action, is a way of life. It is carrying on. It is enduring. It is unendurable.
To live with illness is to live with uncertainty. To live with illness is to live with disruption. The only certainty is that disruption will come. All planning must circle contingency.
Chronic is used to mean not acute, as in intense as in severe but of short duration as in coming quickly to a crisis. […] ‘Cute’ as in clever (1731) as in pretty (1834) is a shortening of acute. Only a disease which leaves can be clever or pretty. That which stays is something else entirely.
Polly Atkin, Some of Us Just Fall
I wondered increasingly why chronic illness in particular is so hard to talk about, so poorly understood, so hard to believe?
Earlier in the book I reflect on the things that disabled and chronically ill people know that abled people don’t want to know:
We know how precarious states of health can be; how tedious and terrifying it is to be seriously ill. We know that even simple infections with known diseases can catalyse cataclysmic effects in susceptible bodies. We know that health is not to be taken for granted, is not a virtue, is not controllable. That anyone is only one accident or infection away from disability.
Polly Atkin, Some of Us Just Fall
I quote Alice Wong: ‘Disabled people know what it means to be vulnerable and interdependent. We are modern-day oracles. It’s time people listened to us.’[4]
I quote Michele Lent Hirsch, who in her book Invisible suggests people cannot bear illness because it reminds them too much of their own mortality, reflecting on how as a young disabled woman her ‘palpable connection’ to death became visible to others. She became, she thinks, unsavoury to the well: her ‘“deathyness” was showing’, she writes, and no one wants that, wants to be reminded of that. She describes walking around with ‘a small cloud of deathyness [. . .] wafting around’ her after a near-death experience, and how it would make other people talk to her as though they were talking to a ghost.[5]
I certainly saw increasing fear and revulsion around chronic illness.
In the book I try to give a brief summary of this, but it’s hard to summarise or explain how widespread and mainstream the fear and disdain for chronically ill people has become in recent years:
In 2021, in the midst of a pandemic that is disproportionately affecting disabled and chronically ill people, the BBC airs a documentary about ‘illness fakers’, based on a notorious subreddit which accuses people with chronic illnesses of fraud. The central premise is that people profit from presenting themselves as chronically ill. Where are our profits, we ask?
Over the following year the illness fakers discourse becomes increasingly mainstreamed. There are newspaper articles. A bestselling novelist makes a chronically ill young person the antagonist of their latest thriller. Articles speak of the ‘secondary gains’ to be made from identifying as chronically ill. We are called a cult. We are accused of promoting chronicity by talking about chronicity. Still no profits! we complain. We have been professionally ill for decades, we declare, and no one has given us any profits.’
Polly Atkin, Some of Us Just Fall
3. Undiagnosis
So-called ‘illness fakers’ brings us back to diagnosis, and to the current crisis we find ourselves in in the UK.
In the UK today we are waiting to hear how extreme planned cuts to welfare for disabled people will be, under the justification that too many people are being diagnosed with chronic conditions.
According to the NHS, In 2025, it’s estimated that over 26 million people in the UK live with at least one long-term condition (LTC), and 10 million have two or more.
In 2014, it was estimated more than 15 million people (over a quarter of the population) had a long-term health condition.
Both our government and many members of the public simply do not believe that there are as many disabled people in the UK as there are, despite the fact we have also been marking five years of failing to mitigate infections with a disabling novel virus, whose appearance coincides with the sudden rise in chronic physical and mental health conditions in our population. Rather than admit that the rise in people unable to work due to sickness may be a direct result of unchecked spread of the pandemic, our leaders would rather perpetuate the idea that a large number of the people currently claiming disability benefits are not disabled at all, merely ‘overdiagnosed’ – either confused or out and out faking it.
One of the benefits due to be restricted is PIP – the Personal Independence Payment, previously called Disability Living Allowance. PIP is intended to cover the extra costs of living with a disability, and enable people to live independently, and to work. Over the last year or so politicians on all sides have perpetuated the blatant lie that PIP is an out-of-work benefit, confusing the discourse around benefits, so-called ‘scroungers’, and the notion that disabled people who can’t work are ‘economically inactive’, a phrase popularised by the Tory party but adopted by the new Labour government.
The cuts our government are proposing are predicted by the government to save £5 billion in benefit payouts by 2029/30, but this does not take into account the additional costs that will be incurred by removing support to vulnerable people, including additional strain to the healthcare system as people’s health worsens under even more restricted circumstances. Forcing people who are too unwell to work to work will only make them more ill. Work is not a cure, especially when work-places are not being forced to create more accessible jobs.
Amongst the proposed changes, 18-22 year olds will no longer be able to claim allowances if their health condition or disability limits their ability to work. This will affect over 100,000 current claimaints, and suggests the government doesn’t believe that anyone under 22 can be chronically ill or disabled. Disability does not discriminate by age, unlike governments.
In parallel to these changes to who can get support to live, a cultural shift is happening towards a vast, overwhelming mistrust of diagnosis. In the book I write:
There are many barriers to diagnosis: some of them are cultural, and revolve around biases and prejudices about patients, and ignorance about certain conditions. Some are more practical, and revolve around access to resources, and to up-to-date information. These practical barriers are also cultural: they reflect a culture that doesn’t care enough about diagnosing chronic conditions, that ignores and prejudges whole categories of people, that doesn’t prioritise getting the right answers for people, and making sure all people have equal access to healthcare, and to the information they need to manage their conditions. I only got my diagnosis because my family could pay for me to travel to London to pay for a consultation with an expert in the field, and I only got to that stage because I kept asking and asking and asking and asking. Because I was a difficult patient. Because I was non-compliant. Because I would not accept unexplained as an explanation. Because I had support to keep faith in that belief.
Polly Atkin, Some of Us Just Fall
Not everyone had the privileges I’ve had that enabled me to do this in a system increasingly stacked against us.
I’m going to share an anecdote I include in the book:
The symbol used for EDS is a zebra. It refers to an oft-re- peated aphorism coined by twentieth-century American physician Theodore Woodward: when you hear hoofbeats, expect horses not zebras. It has become so ubiquitous in medical teaching, few people seem to realise it has an author and origin story. It is treated like a parable.
[…]
May, 2017. I am sitting in a very entertaining talk by a doctor who has written a best-selling book about the human body. He is funny, erudite, thoughtful. I think for a moment this is the right kind of doctor. And then the zebra line comes trot- ting out of his mouth, and my heart, I’m pretty sure, actually falls through my chest, melts a hole in the floor, and exits the building. He had been talking about patients who come into his office, have looked things up online, and think they have some kind of rare syndrome. Ha ha ha. Everyone laughed at the ridiculous Google patients. I shake through the rest of the talk. In the question and answer session afterwards, I raise my trembling arm and ask him whether he thinks that phrase has any place in medicine today, considering how it becomes a barrier to diagnosis for many people. May happens to be EDS Awareness Month, and I think, I can’t let this pass, not here, not today, not whilst I have a voice to use. There is an awkward hush in the room as I try to say this. He admits that whilst zebras are rare, they do exist, but that unicorns don’t.The kind of people he was referring to are unicorns, really, not zebras at all. The audience laughs, the awkwardness is smoothed over. Except for me. He made it funny again; he made my question seem silly. I couldn’t stop coming back to this afterwards. Why did it upset me so much? I tried to unpack it to W. Is it because it perpetuates the notion that horses are normal and natural? Is it because all it does is shift the boundaries of what is implausible (zebra) to what is impossible (uni- corn)? Is it because he was so sure that he would know how to recognise one from the other? Is it because I had still been willing to believe so readily in the Good Doctor, after all I’d seen? I came away quite sure that, for all his cleverness and wit, he would not have managed to help me find the right door. He seemed too sure he knew an ante- lope from a pronghorn. Unicorn is dangerously close in my mind to narwhal, another of the ungulates, the hoofed mammals, although it’s strange to think of it so. A narwhal tusk was presented to Elizabeth I by Sir Humphrey Gilbert as the horn from a ‘sea-unicorne’. Changing one unlikely animal for another does nothing to collapse the problem the aphorism poses. We need doctors to distinguish between different hoofbeats, to look at the evidence in front of them, and to consider all options, rather than assume all animals are horses.
Polly Atkin, Some of Us Just Fall
This was 2017. I had hoped we had developed beyond this in the intervening eight years. I had hoped, vainly and in vain, that maybe this clever, likeable literary doctor would have reflected on what I said and learnt from it. But no.
This year he has been one of many literary medics to praise the forthcoming book by celebrity neurologist Suzanne O’Sullivan, called The Age of Diagnosis: Sickness, Health and Why Medicine Has Gone Too Far. This book, in many ways, does what it says on the tin: it argues that conditions across disease spectra are being overdiagnosed, and that overdiagnosis is making people ill, not the conditions they have. I’m going to unpick this further but first, some background in case you have not come across O’Sullivan’s work.
O’Sullivan has made a media career out of linking physical conditions and outbreaks of mysterious illness around the world to a psychogenic aetiology, arguing essentially for a very basic understanding of conversion disorders. Conditions she has covered in her previous books include geographically specific illness such as so-called ‘Resignation Syndrome’, a form of reduced consciousness and paralysis which effects child immigrants in Sweden, as well as widely recognised conditions like ME. I should say that Resignation Syndrome is not recognized by the World Health Organization as a valid psychiatric condition, and there is decades of evidence that ME is physiological condition.
Her 2015 book It’s All In Your Head: True Stories of Imaginary Illness won the prestigious Wellcome prize for science writing, cementing her vision of psychogenic illness in the public and medical consciousness.
I say vision because, like a dream, the findings of her book are very open to interpretation, to put it lightly.
I was fascinated to see the charity FND action in 2023 characterising O’Sullivan’s work as out-dated and error-ridden, writing:
Our understanding is that Dr O’Sullivan is an expert in epilepsy and is not an active specialist FND researcher. She also has had little or no interaction with the FND community or the major charities. She does not back up any of her assertions with citations to research papers, and many of her views on FND are extremely outdated and contradict the latest scientific research. For this reason, in our view she is not best placed to be a spokesperson for the condition.
FND Action respond to podcast interview with Dr. Suzanne O’Sullivan
I would argue the same could be said of any condition she has written about, and yet here we are with her expertise being put forward to justify policy changes. In the same week she published a piece with the headline ‘I see people in their 20s with 20 conditions’ complaining about overdiagnosis, our government decided to refuse sickness benefits to the under 22s.
Last week Suzanne O’Sullivan was quoted at our health secretary, Wes Streeting, as he was asked if he agreed with her that over-diagnosis of certain conditions is a drain on the NHS, and he did agree, just as his colleague Liz Kendall, the work and pensions secretary, has done.
Her latest book claims as ‘overdiagnosed’ patients with conditions ranging from ADHD and Autism to – you guessed it, hEDS.
hEDS is easy to pick on as a suspicious diagnosis.
In the book I explain:
In 2017, new diagnostic criteria for EDS were issued to try and simplify the diagnostic procedure. When I began to write this paragraph in 2014 there were thirteen recognised subtypes, each with distinct characteristics. By April 2018 there were sixteen subtypes. Within the community, there are mixed feelings about these changes. Some see them as making diagnosis more accessible, others as making it even more complicated, as a kind of gatekeeping.
[this is actually under review again now, just a few years later]
Hypermobile EDS (hEDS), the kind I seem to have, is the only one which does not yet have a recognised genetic marker, so diagnosis is by clinical examination and medical history only – there is no blood test or laboratory test that can confirm it. This means diagnosis of hEDS relies on informed interpretation of clinical findings: variability of presentation, combined with the subjectivity of the diagnostic process and failure of current criteria to represent systemic aspects, leads to diagnostic errors. Studies have found physicians at all levels consistently fail to recognise hypermobility in patients or to ‘establish its clinical importance’.
Multiple gene studies have found genes associated with hEDS in symptomatic families, but it may well be that there are a number of interacting mutations behind the symptoms group. This lack of one clear genetic marker leaves hEDS peculiarly open to disavowal. A doctor who lives across the road from my parents has told my mum multiple times she does not believe in EDS, that she thinks it’s a fad, a fiction, a complaint about nothing, despite knowing about my story. Even if you thought that, why would you say that out loud?
Yet this is what Suzanne O’Sullivan has published in her new book, and in The Wall Street Journal, in which she gives the case history of ‘Darcie’, a young woman with hEDS and the usual comorbities, who she seeks to undiagnosis based on her own prejudices against these conditions, and a lack of any evidence or expertise, as she admits the patient herself pointed out, telling her ‘You’re not an EDS doctor and you’re not a PoTS doctor, so you have no right to look into those.’ ‘Darcie’! My hero. I would love to hear your version of this experience. Leaving aside the ethics of doctors divulging patient details like this at all, ‘Darcie’ is right. O’Sullivan has zero evidence to base her claims on, and apparently zero understanding of the history of EDS either.
Ehlers-Danlos Syndrome (EDS) was first recognized in the early 20th century, with Edvard Ehlers and Henri-Alexandre Danlos, two dermatologists, independently describing affected patients in 1901 and 1908 respectively.
1892 Russian dermatologist A. Tschernogobow presented the first detailed clinical description of EDS.
1901 Edvard Ehlers described the condition as a distinct entity.
1908 Henri-Alexandre Danlos suggested that skin extensibility and fragility were the cardinal features of the syndrome.
1936 Weber is credited with naming the disorder Ehlers-Danlos Syndrome(s).
Genetic studies trace Haemochromatosis back to the bronze age, but as far as I know, no such work has been done on any of the subtypes of EDS. It is fair, however, to assume it has its own long history, and more is being understood all the time as studies are done into both hEDS and the rare and extremely rare EDS types.
Someone online told me this week that their GP described EDS to them as every bored housewife’s favourite diagnosis this year, as though it might be a fun pastime to be chronically ill that people enjoy a bit too much? That we might tell all our friends how fun it is so they want to be ill too?
Is this why is there such a societal resistance to the notion of diagnosis, and such a revulsion to the depiction of diagnosis as necessary and helpful to individuals? Because people genuinely believe diagnosis creates illness? Worse, that community amongst ill people creates more ill people?
There is only one thing people fear more than a chronically ill person being publicly, undeniably, unashamedly ill. And that’s a whole bunch of us. People – from governments to wizard writers – seem genuinely terrified of disabled people in community with each other.
In his illness memoir deliberately and ironically called All In Your Head, Marcus Sedgwick, a well-known and much loved writer, records his experience of developing a sudden mystery illness from which he did not recover. His book is both a history of his own illness, a philosophy of illness he develops through his experiences, and a history of attitudes to poorly understood conditions, including ME, the diagnosis he was loosely given before he moved to France and discovered it did not, at that time, exist as an illness there. Not, as he points out, that people did not have it, but that it was not recognised as a condition. He learned to live in a state of what he called ‘chronic undiagnosis’. Sedgwick, like many ill writers, recognised how chronic conditions disrupt expectations of narrative:
No recovery. This is the true story of chronic, undiagnosed illness, and as a rule, most people do not want to hear these stories, for it is the destiny of the ‘chaos story’ to puncture the happy delusions of the narratives of recovery’.
Marcus Sedgwick, All In Your Head (Hawksmoor, 2022), p. 268
To disrupt the recovery narrative both by not existing in the first place – not recovering, not fitting into a clear diagnostic category yet still nonetheless being ill – and then worse, talking or writing about it, subverts the expected ‘sick role’, as Sedgwick puts it, turning the ill person into a dangerous disruption to social order.
Throughout the pandemic I have struggled to understand abled people’s resistance to protecting themselves and others from infection, and aside from misinformation, I think it comes down to deep held cultural beliefs around both illness and recovery: about who gets ill, who stays ill, and why.
If we live in a society founded on a belief that people can successfully control and evade illness with ‘right behaviours’ – whatever they are deemed to be – from fruitarian diets to thinking positively – then it goes to follow we will refuse to acknowledge those people whose bodies are evidence to the contrary. The pandemic has swelled the numbers of those people by billions worldwide, and continues to do so.
In some ways it is only to be expected that these rocketing numbers of ill and uncovering people would trigger a tsunami of denial of their validity, their reality, their chronicity.
The process of diagnosis – of learning, of seeking – never ends. Like all other parts of the chronic life, it moves in cycles, in repetitive arcs. A correct diagnosis allows the arc to expand into a spiral, to keep moving and evolving. A wrong diagnosis keeps you stuck on a locked circuit, going round and round, going nowhere.
Marcus Sedgwick died in November 2022 and is much missed, but I am glad he is not having to endure this latest wave of cultural somatisation. The billions of others living with poorly understood, chronic conditions need everyone to take heed and recognise them though. As I write in Some of Us Just Fall, ‘we cannot be diagnosed if we cannot be seen. If people refuse to see us for what we are.’
There is no world in which refusing us appropriate care is in any way helpful or can plausibly reduce actual experiential illness, rather than statistical diagnosed illness. The longer a condition goes untreated, unmanaged, the more it is likely to worsen and develop comorbities. What actually ‘promotes chronicity’, in the negative sense it is meant in the original quote, is delayed diagnosis, misdiagnosis, undiagnosis and the lack of appropriate and timely care they create. We cannot ignore chronic illness into wellness, we cannot ignore it into non-existence.
[1] Trudgian R, Flood T. An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in Australia. PLoS One. 2024 Jul 25;19(7): 0307574. doi: 10.1371/journal.pone.0307574. PMID: 39052631; PMCID: PMC11271888.
[2] Joanne C. Demmler, Mark D. Atkinson, Emma J. Reinhold, et al.,
‘Diagnosed Prevalence of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder in Wales, UK: A National Electronic Cohort Study and Case-control Comparison’, BMJ Open 9.11, 2019.
[3] Marco Castori, ‘Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder With Mucocutaneous, Articular, and Systemic Manifestations’, ISRN Dermatology, 2012.
[4] Alice Wong, ‘Disabled Oracles and the Coronavirus’, Disability Visibility Project website, 18 March 2020.
[5] Michele Lent Hirsch, Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine (Boston: Beacon Press, 2018), p. 34.
Shadow Dispatches 