“Promoting Chronicity”:

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.

Abi Palmer

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.

Second Selves and Natural Hearts

On Grasmere as a centre for poetry

The window of my attic room when I first lived in Grasmere

This year it will be twenty years since I left London and moved north to start a phd at Lancaster University in collaboration with the Wordsworth Trust in Grasmere. A large part of my doctoral research was concerned not only with the poetry of the past – how Grasmere came to be Grasmere – but with the poetry of the present – with all those who followed in the footsteps of the lake poets. I gave multiple conference papers on this topic from 2007-2015, and various lectures on the ongoing influence of the lake poets, often with a version of the title of this post, also the title of the seventh chapter of my thesis.

It comes from William Wordsworth’s tricksily self-declared pastoral ‘Michael’, in which claims he retells the narrative of the poem:

For the delight of a few natural hearts,
And with yet fonder feeling, for the sake
Of youthful Poets, who among these Hills
Will be my second Self when I am gone.

These lines were taken as inspiration and justification for a poet-in-residence scheme based at The Wordsworth Trust, which brought dozens of poets to stay and write in Grasmere from the early 1990s onwards. In papers and in my thesis I wrote about the residency as cross-temporal creative collaboration, enabling an extension of Wordsworth’s ecopoetic project, despite, in some cases, the poets’ resistance to this very notion.

This idea of youthful poets as a second Wordsworthian self became a central part of my research, and my thinking about what Grasmere was doing in contemporary culture. I began to gather poetry about and from the Lake District during that time. It began with the writing of poets-in-residence at Dove Cottage who were responding directly to the site I was studying, but my collection soon grew to include all kinds of ways of knowing and thinking about the lakes. This has only expanded over the years, the longer I’ve lived here, and I’m always gathering any exciting lake poetry I can find. Poetry does not have great discoverability compared to other kinds of writing – collections are rarely digitised and often go out of print and memory – and unless a poem is widely anthologised or shared online, you are unlikely to find it in an online search. Moreover subject or foundation is not always on the surface. A poem called ‘Lake District’, for instance, might pop up on a search, but a poem written by someone living here that does not mention place names might not, but it is just as interesting to me, if not more. I know there will be a whole geography of lake poems I still don’t know about (or have read then forgotten about if I’m honest!). In 2023 I was asked to share some of the poems with a reading group visiting Grasmere, which meant I thought I would be well prepared when, a few months later, I was asked by Candlestick Press to edit a Ten Poems from the Lake District pamphlet. In the pamphlet, which eventually came out in July 2025 I write:

The Lake District has been inseparable from poetry for over two centuries, since the critic Francis Jeffrey identified a suspicious ‘sect of poets’ with alarming anti-establishment tendencies in both poetry and politics haunting the lakes in 1802 (William Wordsworth, Samuel Taylor Coleridge and Robert Southey). When he declared this ‘lake school of poetry’ mercifully ‘pretty nearly extinct’ in 1822 he could not have dreamt they would become so widely renowned that in 2021 global superstar Taylor Swift would be singing about emulating their rural retreat, reframing the lakes as a ‘poet district’ where artists may flee a busy world that is killing them, whether in the nineteenth century or the twenty-first.

Like Taylor Swift and many generations of writers before her, from LM Montgomery to Michael Ondaatje, I came to the Lake District because of the Lake Poets, though to study their legacies for doctoral research, not to weep on their graves. The Lake District I moved to in 2007 was a place overspilling with poets and poetry. I was delighted to find the literary history of the Lake District fed thriving contemporary creative communities as well the never-ending stream of visiting writers and writing visitors.

Polly Atkin (ed.) Ten Poems From The Lake District (Candlestick Press, 2025)

The introduction and the final chapter of my book Recovering Dorothy (Saraband, 2021) also talks about that creative community I found when I moved here. I wanted to include it in that book not just because I think Dorothy’s creative legacies are important and even more understudied than Williams, but because I never published the academic monograph of my thesis I hoped to (partly because I simple did not have the time and energy to give to it when I was also trying to hold down an academic job, partly because by its nature it perpetually needed to be updated). In that thesis, handed in in December 2010, I described the Wordsworth Trust as ‘a global tourist attraction, contemporary arts organisation, archive, scholarly resource, and hub of a community’, writing of how ‘it offers a distinctive combination of functions and meanings which memorialise and reiterate its past, at the same time as working to create its future.’ Those words record a place that is materially different now, and functions differently, but still has exactly the same potential to feed contemporary creativity.  

‘My Vision Becomes Your Dreams’ – part of the Head/Heart/Hole exhibition by Kate Davis (2007)


The poets I found in community here twenty years ago included poets-in-residence at the Wordsworth Trust who lived here amongst the ever-revolving households of volunteer museum workers in the heart of the little community in Town End; poets who came to read at the summer season of poetry readings which ran May – October every year (originally two poets a week, then two poets a fortnight by 2007); local writers from Cumbria and more from all over the North who came to events here; and writers who, like me, were given this extraordinary access to poetry of the present and the past by volunteering at the trust (including Esther Morgan, Rachel Carney, Eileen Pun, Penny Boxall, Emily Hasler, Rebecca Watts). Then there are the many poets who have worked at or for the trust since it began, from those who have worked and lived on site, like Pete Laver, Sally Woodhead and Mark Ward, to those who have and continue to do freelance teaching and facilitating work for the trust, like Kim Moore, Clare Shaw and Katie Hale, or volunteer facilitators.

The Wordsworth Trust still supports new writing through workshops, with school groups and adults, and importantly through two regular poetry writing groups – Dove Cottage Young Poets (originally facilitated by Kim Moore, now by Katie Hale), and Dove Cottage Poets (facilitated by Ilse Pedler). In parallel, there is the poetry reading group which I was called in to facilitate in 2017, which meets monthly online now.

I gave so many papers over my attempted academic career about these connections because I couldn’t understand how so little critical attention seem to have been paid to Grasmere’s role in supporting and encouraging new poetry. It was so obviously one of the most extraordinary things about living and working here. There was no way to avoid living poetry. You worked it, you read it in the pub, you performed it at parties whether you’d ever been interested in it before or not. Helen Mort wrote about the community around her 2010 residency in her 2020 memoir Never Leave the Dog Behind. Esther Rutter wrote about how this daily exposure to poetry seeped into her thinking in her 2024 memoir about her year as an intern here in 2009, All Before Me.

I was constantly dismayed as I tried to make a case for how vital these connections were by the dismissing of Romanticism as both a-political and fusty in some way. I started one paper I presented on this in 2015 with a quote from an endorsement for an anthology of north-western English poetry released in 2013, in which Daisy Goodwin declared: ‘Lake Poets are history; if you really want to take the poetic pulse of the North West, read Sculpted, a salty sassy anthology of England’s top left bits’. This identified the Lake District with a pastoral past, an out-dated notion of Romantic poets and poetics seemingly disconnected from the urban centres of twenty-first century living. It implied any poetry associated with the area would be irrelevant; redundant; not sassy or vital. This seemed to be a commonly held view I found repeated over and over in different ways in those years. In 2010 I had started trying to get funding for a project I called C21st Field, which would look at rural creativity and the lakes as a place where everything – past, present, future – the hyperlocal and the global – collided. I never got any funding, from any of the organisations I applied to, as is so often the way.

That 2015 paper was for a conference about the New/Next Generation Poets. I talked that day about how one of the New Generation Poets (Bill Herbert), four of the Next Generation Poets (Paul Farley, Jacob Polley, Owen Sheers and Henry Shukman ) and three of the Next Generation 2014 Poets (Sean Borodale, Emma Jones, Helen Mort) held residencies at the Wordsworth Trust at formative points in their poetic development. As far as a glance through past poetry programmes showed, from 2001 to 2015 alone at least 13 of the New Generation poets read their poetry at The Wordsworth Trust (John Burnside and Sarah Maguire additionally were booked but cancelled); 16 of the Next Generation 2004, and 12 of the Next Generation 2014. Some of these poets developed deep connections with the Wordsworth Trust and with Grasmere through repeated visits and correspondence.

Then there are the many poets who visit Grasmere for other reasons – from the Canada Council trip in 1978 which brought Michael Ondaatje, Earl Birney and PK Page to Dove Cottage – to those just on holiday, or those brought here by their own research or literary pilgrimages. In an extension of the participant-observer role I was placed in during my doctoral research, in 2015 my partner Will and I brought Karen Solie, Megan Fernandes and Wanda O’Connor here, as part of a Canada-Lancaster Knowledge Exchange project we had funding for. We were recreating the connections we’d studied from the past, and trying to ensure they could continue in the gap created when the funding for the residency was lost.

I’m always thinking about these connections We live in their echoes. One of the great ironies of our lives here is that we have been able to stay in the village precisely because the trust lost funding for a poet-in-residence. In 2015 when our landlord wanted to sell the house we’d been living in for almost five years, we rented the cottage that had been used most recently for the residency. In May 2015 we moved into a space more haunted by poetry for me than Dove Cottage is, because it appears in so many contemporary poets’ work. Our home contains books by multiple people in which it is a character and a crucible. Other poets had lived in the house opposite, where I lived in the attic for my first 18 months here. I ate my breakfast from a Ledbury Poetry Festival plate that another poet had left behind, hoping it was a kind of manifesting magic that would take me there myself.

A few things have thrown these connections into the front of my mind again recently, from running a workshop on poetry and community and re-finding notes from my thesis last month, meeting an academic from Finland last year who similarly gathers Lake District poems as an ongoing research project, to the publication of my third poetry collection this month.   

Launching my first poetry pamphlet in Grasmere in 2008

Today I was looking for a list of poets-in-residence at the Wordsworth Trust and realised the only one I could find was my own, from the appendix to my thesis, which I’d last updated before the long residencies ended at the end of 2014. I struggled to find details of the more recent poetry residencies at Wordsworth Grasmere from my desk in Grasmere, ironically enough, now google is no longer the oracle it was. I’ve filled in what I could remember but I also know I’ll be missing far more. I’d love to gather knowledge from all of you reading this.

Who am I missing? Have I got dates wrong? What other poets worked in Grasmere and lived in Grasmere – either at the Wordsworth Trust or elsewhere – who I don’t know about?

I’m missing I’m sure a lot of information about more recent interns and staff at the museum who have written and published poetry. I’ve included a couple in this list, but I’m sure there are more I do not know about or who I’ve lost in the labyrinths of my foggy brain.

I haven’t included the recent short residencies at Rydal Mount here yet, but I will, as they become even more relevant since the announcement of its acquisition by the Wordsworth Trust.

Likewise, I haven’t made a list of all the poets who came to read here over the twenty years of the summer reading programme (although there are some interesting reviews of the 2013-14 programme still online here which gives a hint of how many came here) or at any of the festivals that used to run here (the winter Arts and Books Festival; the Dorothy Wordsworth Festival of Women’s Writing), or the many poets who have come here for short visits to run workshops. I hope these lists will keep growing as a record and keep growing into the future too.

Poets- and artists- in-residence at The Wordsworth Trust
Single-month Residencies (2017-2023)

Suji Kwock Kim (June 2023)
Rommi Smith (September 2022)
Katie Hale (2019)
Matt Howard (2019)
Nick Makoha (2019)
Holly Corfield Carr (2017)
Harry Man (2017)
David Tait (2017

Residencies (1994 – 2014)

Zaffar Kunial (2014)
Judy Brown (2013)
Carola Luther (2012) [residency became 10 months from 2012]
Helen Mort (2010-2011)
Emma Jones (2009-2010)
Adam O’Riordan (2008-9) [residency limited to a year by funding agreement]
John Hartley Williams (2007-8) [3 months over winter]
Kate Davis (2007) [last artist-in-residence]
Lucy Gunning (2007)
Judith Dean (2006-7)
Neil Rollinson (2005-7)
Hamish Robinson (2005)
Hadrian Pigott (2005)
Rebecca O’Connor (2005)
Matthew Hollis (2005-6)
Sarah Hall (2005)
Dan Sturgis (2004)
Helen Farish (2004-5)
David Esslemont (2004-5)
Christopher Bucklow (2004)
Owen Sheers (2003-4)
Henry Shukman (2002-3)
Simon Morley (2002-3)
Jack Mapanje (2002-4)
Jacob Polley (2002)
Paul Farley (2000-2)
Sean Borodale (1999) [Northern Arts fellow]
Matthew Clegg (1999-2001)
Bill Herbert (1997)
Gerard Benson (1994-5)

Poets who work(ed) at the Wordsworth Trust and live(d) in Grasmere

Pete Laver (librarian 1976?-1983)
Gavin (D) Smith (shop manager 1983-1996)
Sally Woodhead
Mark Ward (staff 2000-2018?)
Esther Morgan (volunteer 1990s)
Rachel Carney (volunteer 2006-7)
Polly Atkin (volunteer 2007-9; current tenant)
Eileen Pun (volunteer 2007-8; resident of Grasmere for many years)
Emily Hasler (intern 2009)
Penny Boxall (intern 2010)
Rebecca Watts (intern 2010)
Megan Beech (trainee? 2016?)
Tavia Panton (trainee 2019-2020)
Jessica Sneddon (trainee 2020; staff)

Notable Mentions

Thomas Blackburne (1821-1859) – stayed or lived in Dove Cottage in 1850s.

Edmund Lee (senior) – owned Dove Cottage before the formation of the Wordsworth Trust and sold it to them. Remained local trustee. Published Hinemoa and Other Poems (1898).

Edmund Lee (junior) – trustee; novelist and secretary for The Poetry Society.

John Masefield – opened the original museum outwith the cottage itself in 1936.

Seamus Heaney – long standing connection, opened the Jerwood Centre in 2005. Made an amazing documentary William Wordsworth Lived Here: Seamus Heaney at Dove Cottage, dir. by David Wilson (BBC, 1974).

Tony Harrison – frequent visitor. Etched his name on Dove Cottage window next to the pencilled shutter uncovered in renovations in 1976 as detailed in his poem ‘Remains’.

‘I remember sitting up with Tony all night in Dove Cottage, Wordsworth’s Lake District home, as he read Shelley’s letters out loud over long glasses of whisky.’

(Simon Armitage on meeting Tony Harrison (in the late 1990s?), The Observer, Sunday 28 December 2025)

Fleur Adcock (1977-78) – writer-in-residence at Charlotte Mason College, Ambleside. Resulting pamphlet Below Loughrigg (Bloodaxe Books, 1978).

Neil Astley – started Bloodaxe Books in 1978 whilst working for Robert Woof fundraising for the Wordsworth Trust in its Newcastle University office:

‘When the day spent working in the cause of William Wordsworth was over, my evenings belonged to the living poets as the Dove Cottage office became the administrative base of Bloodaxe books.’

(Neil Astley, In Person: 30 Poets (Bloodaxe Books, 2008), p.241.)  

Simon Armitage – annual readings in Grasmere from 2007 – present. Connection goes further back?

On books in the landscape


Some time in the mid twenty-teens, when twitter was still twitter, and still a place to make connections and jokes, my partner Will stepped out of the bookshop where he had been working part-time for years, carried a book across the road, and positioned it on a gate.

For a couple of years he had been sharing photos of books from the Sam Read Bookseller twitter feed as it grew, but a combination of poor lighting inside the shop, and the increased interest he got on posts which included the lake district landscape had been driving him to try to take more pictures of books outside the shop. He’d started by just standing outside the door and holding a book up against the backdrop of the fells, which worked okay, but didn’t always show the books off to best effect.

Next he tried nipping across the road and balancing books on the drystone wall opposite.

Through trial and error he realised that balancing a book upright on the field gate gave the best light and framing. By the end of the autumn of 2017 it had already become a standard image for the shop social media – a book or stack of books on the gate opposite. People seemed to love this combination of book recommendations and the landscape of the lakes.

It was a quick and easy way for Will to share interesting books without having to think of anything clever to say about them during a busy day, as the landscape seemed to say enough by itself. The gate became the book gate, and visiting writers would have their photo taken by it too.

Outside shop hours we found ourselves taking photos of books in other favourites spots we found made good book backgrounds: a little crag looking down over Rydal Water, particular stones on particular walls, the lake shore. If the light in the shop is bad, our house is black hole, so it made sense if we wanted to share excitement about a book to take it out for a wander. It became a thing. I took photos of Will taking photos of books, lying or crouching to get the best angles, propping books up with jumpers or rocks because he never remembered to bring any props.

When my books which included swimming were published I wanted to photograph them by the lake that played such a large part in them. I’ve learnt a lot through that process. Through a lot of trial and error I eventually found which rocks allowed you to stand a book on them and get a good reflection too. As a disabled writer with energy limiting illnesses, living – as it so often feels – at the outer reaches of the literary universe, sometimes taking a photograph of one of my books within the landscape that’s in them has felt like the only thing I can do for them.

Photographing books in the landscape does come with its own particular perils. My EDS clumsiness means I’m highly likely to tip a book over a wall when trying to get it to stand upright on it, then use up all photography energy I had fetching it from wherever it landed. Then there’s the lake district weather to contend with. You can have the perfect shot lined up in still calm sunshine then as you step back to take it a sideways blast of hail knocks the book over into the mud.

I forget sometimes that paperbacks are much more liable to blow over than hardbacks, as in the case of the paperback of Some of Us Just Fall, which blew from its stony perch into the lake when I turned my back last May. Does this secure it as swim lit, I wondered, but no one answered.


What Will learnt pretty quickly from his time balancing books on the gate is that books look most dramatic in the landscape if the lens is somewhat on a level with them, or a bit below – the covers pop more, if you like. This isn’t too hard when you’re using a gate or a wall to pose them on, but requires a bit more contortion if you’re using a crag, or a rock in the lake. Have you really put enough effort in if you’ve not lain on a beach in the snow to get the right angle on a book, for example?

On friday Katie Hale took some classic behind-the-scenes pictures of me taking photos of the paperback of her brilliant second novel The Edge of Solitude and shared them online along with one of the photos. I’ve been meaning to share some behind-the-shot details for one of the lake poses for months, and even recorded some footage of me wading into the lake and positioning a book, though I forgot to post it at the time and can’t find it now. It take a bit of fiddling around the get balance, angle and light right but the key detail I didn’t get at first is being in the lake to take the photo. The fact I was taking them from in the lake is what seems to have surprised people most.

Because of the rain this last week, the level of the lake is higher than usual, and I was a little worried the water would actually lap at Katie’s book when I moved. It’s one thing to drop your own paperback into the lake; something quite different to drop someone else’s.

Normally there’s a choice of rocks all safely high and dry, instead of just one barely above the surface. Luckily, Katie had a can of pop with her which made a good prop, and even the fleet of ducklings that came to have a look at what I was doing did not knock the book down or wet its feet. One day I will remember that the top of that rock is not actually flat from that angle, though.

By the time Will and I took over the bookshop in October 2023 the book gate had started to suffer from the continual onslaught of lake district rain, and rotted from its centre, letting lambs wriggle through in the spring and no longer providing a stable surface on which to pose books. Last autumn, it was replaced. Good for the lambs, but less good for the books, as the new gate has a bevelled edge, which we’ve found* is not a safe base for books, though we’ve managed to get a view last shots on it before giving it up. In March I glimpsed out the window to see Will just catching Kerri Andrew’s brilliant new book Pathfinding as it toppled off the gate back into his hands, though he got the good shot first.

We’re experimenting with new places to pose books near the bookshop for best effect and remembering places Will used to use before the gate became his favourite, taking Robert Macfarlane’s new book Is a River Alive? to the river Rothay to gaze at its likeness (I was paddling in the river for this one but it would have been easier and a better angle if I’d got all the way in to be honest!).


As a writer, it’s hard to know if anything you’re doing to try and promote your books is making any difference at all. Publishing can be so casually destroying. You’re promised all this marketing panache when you sell your book to a substantial press, but then there’s a change in editor, or budget, or marketing staff, or head of imprint, or the whole press goes under. Or someone else with a bigger reach publishes a similar book at the same time, and yours becomes an also-ran. Or there’s a world event that makes the subject of your book suddenly awkward or inappropriate or contentious. If you know writers, you’ve heard it all. There are so many ways for things to go impersonally, un-deliberately wrong in ways you cannot account for or control. It happens all the time. If you yourself are a writer maybe it’s happening to you. It’s almost certainly happening right now to a writer whose instagram feed or tour schedule you may have been looking at with envy, thinking how different things would be if your work had the support theirs did. It’s happening to so many of us all the time but it’s maybe useful for everyone to remember it’s hard to see from the outside.

Does sharing an interesting photo of a book make a difference? Probably not much, in the scheme of things. Like any small thing you can do yourself though, it can make you feel less powerless in the process, more active in it. It can give you a sense of a tiny bit more control in the way your work is presented to the world.

As a bookseller, I know a photo can sell a book. It doesn’t happen all the time, but sometimes just sharing a photo of an interesting book online will make someone click on a link and buy it. As a bookseller, and as a writer, I have to believe that counts.

For me, the landscape I live in here in the lakes is so much a part of my writing it only makes sense to include it. It might not at all be the case for others. For me, it’s also, importantly, something I can do, and enjoy doing. It gives me pleasure, and I hope gives some to other people too.

Publishing can be so obscure, and it is so hard to track the impact our work is having. When I was really struggling with not knowing whether Some of Us Just Fall was reaching people out there in the wider world, it was readers’ photographs of the book in their landscapes, their homes, their hands that mattered to me. I love to see photos of my books in other bookshops and in other people’s lives, out there, doing their thing. It gives me hope that my little world is not that little after all, and that my work is travelling even when I can’t. So I try to do the same with books I love too. I bring those books into my world, as the books bring me into theirs. Its a small thing, but a small thing I can do, under the right circumstances of weather and body.


*yes it was me who dropped a book into the field. I am not to be trusted.

Plague Year Season 4 Review

2023 eh? That was the year that was.

I’m not going to share my thoughts or reflections on it because they’re all too heavily fogged up by the lens of the present moment and as I write this, huddled up with a hotwater bottle, watching the rain fall for the 6th day in a row, I am going into this transition of years in several flavours of maudlin, so I’ll keep it brief, with a list of things I celebrate from my 2023, and things I am hopeful for for 2024.

The two bigs things of 2023 in my life are these –

  1. Some of Us Just Fall was published in the UK by Sceptre on July 6th.
the UK hardback of Some of Us Just Fall enjoying some peaceful reflections at the lake

SOUJF (soo-jiff-er, to rhyme with Calcifer, for those of us who are too tired to say five words when one will do) will be 6 months old on January 6th, and I hope will keep gaining readers as they trundle along.

I am so grateful to all SOUJF’s readers, everyone who has shared and talked about the book, or supported it in any way. You make it all worthwhile.

This is my first mainstream publication, and I have lots of reflections on this especially, but it’s not the time or place for them.

What I will say is that it’s been more helpful than I had anticipated to remember the poetry mantra that kept me going through all the years of rejections and nonpublications: it’s the work that matters, focus on the work. I’m also inordinately thankful for my wonderful agent Caro Clarke, and to be doing this at a point in my life when I have other writers to talk to about what is normal and not normal, what is personal and not personal about the industry.

The US edition is coming out with Unnamed on March 19th 2024, which is really exciting, and I’m especially thankful for all the thought and care Allison and the team at Unnamed have put into it pre-publication. It’s a different look, and I loved seeing how Jaya Nicely, the art director at Unnamed, thought through the cover. I can’t wait to see the two editions hanging out together.

The US hardback cover for Some of Us Just Fall

Thanks to every bookshop and library who has had SOUJF on their shelves, everyone who has made events and talks possible, and again, all my readers.

2. We bought a bookshop!

(the business, to be specific, not the premises, which we’re renting off the previous owner)

My partner Will has been a bookseller all of his adult life, and has been working at Sam Read’s in Grasmere for over a decade. On October 23rd, after a long year of negotiations that felt a lot like something out of a nineteenth century novel, we became Sam Read’s new owners – the seventh generation to take the helm.

Sam Read Bookseller in the surprise snow of December 2nd 2023

We’ve massively grateful for everyone’s support, advice and custom both through the sale process and as we move forward into our first year steering this old and venerable ship!

There have been a lot of work-related frustrations in all areas but as the year closes I want to focus on the good things.

I’ve had work in three anthologies I’m really delighted with in different ways.

1. Three poems included in the National Trust book of Nature Poems (edited by Deborah Alma), with beautiful illustrations.

2. My poem ‘Unwalking’ from Much With Body from the 2019 collaboration with Josie Giles and Anthony Capildeo included in Kerri Andrew’s anthology of women’s writing on walking, Way Makers

3. A new essay about rain and chronic illness in the brilliant Moving Mountains anthology, edited by Louise Kenward.

Moving Mountains and SOUJF looking festive together draped in fairy lights

There are lots more things that are still works in progress, that haven’t quite happened as they were intended to, that have been delayed or disrupted, as you might expect. I’m also sorry to everyone I owe an email to who I’ve failed to email.

Going into 2024 I’m hoping to remember to focus on the things I can control, and let go of what I can’t. To not let what I can’t overwhelm me and distract me from what I can do, and need to do.

I’m working on a little book project which I’ll be able to share more about in the next few months once the manuscript is handed in at the end of January.

I also have most of a third poetry collection together, although the schedule suggests it might not see paper for another couple of years. I’d really love all the problems it addresses to be so obsolete by then that it’s a piece of lyric archeology and I have to bury it and start again but somehow I doubt it. Either way, in 2024 I will try and get more of the poems I’ve written so far out into the world before they turn to dust.

On New Year’s Eve last year we joined Cathy Rentzenbrink’s zoom workshop and out of it I wrote this poem I’ll leave you with. Wishing you all all the best for 2024.

Resolving

To turn my face to the sun at every opportunity.
To wash in its gold like the cat does. To choose
light over productivity. Comfort
over productivity. To be kindly with myself.
To break into simpler parts. To loosen.
The moth-holed clouds of the old year blown open
to let the moon shine through. To vanquish
abstemiousness. Against deprivation.

I will weather these months as the deer do, eating
and resting when I will. Putting all of my store
into personal growth, turning the winter
into velvet and bone, and my own survival.

I will practice my big antler energy. Towards
resting red deer face, the furrow in my brow
less of a comment than a natural phenomenon
and when I am threatened I will leap free and vanish
and when I am threatened I will leap free and vanish
and the space I abandon will be less-than without me.

I am filling my pockets with all the sun I can carry
and turning them out in the burrow of the house
at twilight. I am being lavish with my logs
even before dark, if the day is too dark
though there’s so much winter to burn through.

I am taking it one fire at a time
against the daily emergency of this endless
heedless season of gloom. I am cleaning
my bones. I am lighting all my candles.
I have given up giving up.