Five writers – Nasim Marie Jafry, Laura Elliott, Henry Anderson, JP Seabright and Louise Kenward – discuss what it’s like to write with M.E. and how chronic illness has forced them to discover new modes of understanding, new forms of expression, new realms of imagination (as edited by author Katy Wimhurst).
Telling stories may be a basic human need, but the kind of stories we tell and how we tell them reveals something about who we are and how we experience the world. This may be especially true if our experience involves a body that has gone chronically wrong. Inhabiting the body can be a strange, unsettling thing. Chronic illness forces us to question things, to discover new modes of understanding and expression, although this isn’t to romanticize sickness or see it as ‘illuminating’. In this piece, five people who suffer from myalgic encephalomyelitis (M.E.) – a neuro-immune disease sometimes called by the inadequate term ‘CFS’ – talk about how it has affected their development as writers and their writing practice. While each individual has their personal take – and I will let their voices speak for themselves – their words reveal common themes too. (Editor Katy Wimhurst, author of Snapshots of the Apocalypse).
Nasim Marie Jafry, author of The State of Me
I am not sure I would have written had I not become ill at a young age – eighteen. I remain ill today, forty years on. The illness stills you, you become an ‘enforced’ observer. Observing is very useful for a writer. I’ve had short stories and flash fiction published over the years, been shortlisted for awards, but the work I am most proud of is my novel The State of Me (Harper Collins).
The State of Me – hard to believe it was published fourteen years ago, its message as relevant as ever – is a fictionalisation of my own diagnosis and experience of M.E. I consciously wrote my illness as fiction not memoir as I wanted to get closer to the truth. Through the main character, Helen Fleet, the novel reflects the anger and injustice that M.E. sufferers have felt for decades because of a wilful reframing and misrepresentation of the illness by a core of the medical establishment. There’s black humour and absurdity to balance the grimness of the illness.
The novel had to be written and took almost ten years. The difficulties in writing it were both physical and cognitive. I can’t write every day, it is just not possible. I write what I can when I can. Writing is more physical than you think. But writing (even as slowly as I do) sustains me. I cannot imagine not writing. I can’t do more than an hour before having to lie down. My head feels inflamed. I’d often edit the novel in bed from hard copies, getting red pen on my pillows.
I couldn’t write a whole first draft, which I imagine is how most writers write. I certainly had an outline for the novel – you need a framework – but I’d finish one chapter and polish it up as much as I could before going on to the next. I simply couldn’t have gone back over 100,000 raw words, editing from scratch. It would have been overwhelming.
The book has an episodic, filmic feel – short scenes and pauses – many asterisks between sections to pause the flow – and I think that very much reflects the illness, the essential rests in between tasks, the white space, the gaps where you go to ‘recover’. This was all unconscious, I wrote the way that I could.
Illness brings a walling off; there are aspects of being a writer that are simply impossible for me. I cannot embark upon the circuit of readings and festivals that is required of writers these days. This can feel a little hurtful. I did have a launch for The State of Me in summer 2008 in an Edinburgh Waterstone’s – now a bank. One of the happiest days of my life.
I’ve been writing for some time now a novella, which involves a fierce scraping of childhood memories in order to fictionalise events in the life of my late Pakistani doctor father. Apart from the usual writing/energy challenges, it feels like quite a brutal mining of myself.
Laura Elliott, writer, editor, journalist
I was six-years-old when I first realised that writing stories was something someone could do as their job. From that point on, I’ve written short stories, many finished and unfinished novels, plays for stage and radio, journalism articles, and a few genre-bending pieces of creative non-fiction.
The first story I wrote after my revelation at the age of six, involved a goldfish imaginatively named Goldy, who spent a single A4 page trapped and swimming between eerie stone walls. It ended with her triumphant escape from the miniature castle at the centre of her goldfish bowl, and the strangely existential realisation that she was still locked inside the glass, staring out at a child’s bedroom.
It’s possible, then, that I’ve always been attracted to the weird. To the stories that don’t quite have a simple happy ending, but instead suggest greater troubles to come, or a limit to the protagonist’s impact on the world. When I first became ill with M.E. and a number of other chronic illnesses at the age of twenty-four, this narrative instinct for the limitations of the individual didn’t serve me as well as it might have.
I wanted the hero’s story. A tale of a single individual (me) facing great odds, and eventually overcoming them to emerge victorious on the other side, with illness a mere footnote in the tale. As the years dragged on, however, and the chronic of chronic illness proved stubbornly immovable, I started to look for and write different kinds of narratives.
The tales we tell of sickness are uniquely manufactured to appeal to a healthy audience, and while the hero’s narrative may fit acute illness, it has little application for the ongoing and the incurable. Whereas before I’d been able to churn out thousands of words a day, at the worst of my illness, I barely managed a sentence or two, and for long months at a time, was unable even to read.
My writing practice was forced to change, and rather than sitting at a desk and writing thousands of words over many hours, I now try to schedule (very) short bursts of creativity throughout a day. The bulk of my writing is done in my head first, or jotted down on the notes app on my phone. During the times when I’m well enough to sit at a desk, I transcribe what I’ve written on the phone previously, or finally pour out a huge chunk of words that have drifted through my head over the previous few days.
In a sense, it’s a more meditative practice, and often leads to unusual narrative breaks that appear more like vignettes, or even streams of consciousness. At the same time, the hero’s narrative and the ‘happily ever after’, or even the ‘comfortable resolution’ of an ending has lost its appeal to me. I find that I’m more likely to blend genres and make the story ‘weirder’; that I use unreliable or even non-human or non-sentient narrators to destabilise a narrative; that my protagonists often experience a loss of agency which often isn’t regained by fighting, but instead by giving in. I suppose, in essence, by accepting.
In real terms, this means that my current (unfinished) novel features a first-person protagonist who is regularly revealed as a liar. It means that my short stories end with women growing wings and leaping from rooftops, a question as to whether they will fall or fly. It means that a woman may fear a house and then find safety in the sinister womb of its walls. And that circular narratives, in particular, which never seem to end, are something I find myself obsessed with, in the way they accurately depict the ongoing nature of humanity’s stories.
Overall, I think when you lose control of your own body, it removes you from the simple narrative space. Stories of individual resilience might still appeal, but stories of searching, trying to understand, and ultimately perhaps failing, often feel more real. The Lone Hero is a story of a healthy body triumphing over a dangerous society. The Sick Heroine, on the other hand, must work far harder and outside of the boundaries of the three-act structure, to find a story that fits.
Henry Anderson, author of Cape Misfortune and The Mouth
It felt important to me to have got my first novel,The Mouth (Solstice Publishing), published by a small press in America without them knowing I suffered from a chronic illness.
I wanted to feel I had somehow imaginatively escaped the confines of my bed. I was determined to write about anything that was not my illness, as an act of defiance!
I failed, of course. My writing is intimately about the disease I suffer from.
Life has changed since I became ill with M.E. It is a poorly understood disease that can leave patients bed-bound and virtually housebound indefinitely.
Writing advice I read once said, ‘Tell the secrets only you can tell.’ The fantasy dystopias of imagination reflect the prejudice many patients face daily. My characters regularly encounter disbelief, rudeness and cruelty.
If you are not believed in real life, then why not fictionalise your experience into a fantasy people might actually engage with?
When you get a chronic illness, the world is turned upside down. People who you thought were friends turn out not to be. Similarly unexpected people turn up trumps.
You can go missing, as far as the outside world is concerned. But you’re not actually missing, because you know where you are.
I wrote a book (Cape Misfortune) about a police woman investigating disappearances on an island off the coast of Oregon (famous for its fog). She discovers people aren’t really going missing – they know where they are.
Some days I’m not well enough to write much, some days I am. Whichever it is, if you are spending most of your available energy on washing and eating, the word count cannot match that of a well person. I recently had a relapse in my illness which left me unable to write. When I’m too ill the physical word count is zero. In my head words swirl, ready to pop out.
But if you are able to do a little every day, it becomes a superpower eventually, even with the chronically ill.
JP Seabright, writer, experimental poet
The uncertainty and precarity of this chronic disability, the inability to plan and have control over your life, encourages becoming other – existing outside ‘normal’ society and its expectations on our bodies and minds. It requires living vicariously, within and through fantasy. Even if that fantasy is when you might be strong enough to get out of bed and leave the house, or cook a meal, or eat out at a restaurant, or visit your family. With M.E., nothing can be taken for granted, and these daily tales of the unexpected are both the story in which we inhabit ourselves, and the way in which we create.
M.E. affects what I write, when I write and how I write. I am often awake in the middle of the night, unable to sleep due to muscle pain, headaches, palpitations and other discomfort. These (t)witching hours are when my mind is often at its most lucid, the irony of being spared a few hours of the persistent drizzling rain of brain fog I have throughout the day.
I write in short snatches, moments when the fog lifts for a while. My lifelong-held ambition to write a novel has been most severely impacted by this. It simply requires too much concentration, too much effort. Even on fog-free days, my eye muscles struggle to focus on a laptop screen, and my arms ache too much to hold my hands to a keypad for very long. The same with pen and paper. As my health has worsened again over the last two years, to the extent that paid employment is a huge challenge, I’ve turned to poetry and more experimental work. It was not a conscious decision, but as the snatches of time for creative thought and play become smaller and less certain, I’ve found these new forms of creative expression as a way to fulfil that need.
And it is a need. People with chronic disabilities have as much desire and potential to have wild and creative lives as anyone else. For myself, I find it gives energy rather than takes it away, although it may just prove to be ‘cost neutral’, but it undoubtedly refreshes the parts of my brain that other activities, those I can still do, cannot reach.
The subject matter of my writing has always reflected my personal interests, i.e. somewhat misanthropic tendencies – dark matter, post-apocalyptic lullabies, speculative fiction, surrealistic pillows of visual poetry or abstract art, etc – and it’s impossible to judge whether that might be different if I didn’t have M.E. It’s been a part of my life for more than half of it; I can only remember ever being ‘other’. Whether this gives me an insight into different experiences or forms or ways of seeing, I don’t know, but I do know that writing is the only thing that provides some sort of relief. On the page, I can be anyone I want to be. On the page, there are no constraints.
Louise Kenward, writer, artist, psychologist
I have always written as part of my work; appointment letters and review summaries, for GPs, keyworkers, and patients. Typing is one of the most useful skills I learned at school, if not the most important, typing and driving, crucial to me and my life. I could not have anticipated just how crucial this skill would become.
My relationship to writing remained fairly stable for the following twenty years or so: it was practical, it was functional, I had to write essays and prepare reports. At university, and qualifying as a psychologist, working in teams. It was a skill that went unacknowledged, it was a given, like speaking and breathing.
As I began my psychotherapy training, writing had a different emphasis. I learned new skills, in understanding and reframing; in contextualising information I heard in client sessions in new ways. These skills were translated into writing: reformulation letters and goodbye letters. The psychotherapy I trained in was Cognitive Analytic Therapy. A key tool in this is writing letters and reading them to the person they’re addressed to. Writing was powerful. It became a means of sharing thoughts and feelings in a new more connected way. I witnessed the power of language and the meaning that could come from a shared connection through words.
And then I got sick, initially diagnosed with post-viral fatigue, and I didn’t write for a long time. The things I took for granted were now far out of reach. I had times I had to concentrate on breathing, when talking (even listening) was just too much. The level of energy I had to survive on was just that, survival.
I may never have written creatively had I not been so ill. In attempting to put words to these experiences, everything felt lacking. Writing my piece ‘Underland’ for Disturbing the Body (an anthology of speculative memoir I co-produced in 2021), came from a sense that the only way I could give this illness words was to delve into the surreal and inexplicable. Alice in Wonderland was one of the few narratives that made sense. I had disappeared down the rabbit hole and living in Wonderland was now my reality.
Since becoming ill my writing has changed. My writing has morphed into something I now feel compelled to do. It gives voice to my illness, it gives space to what was silent.
Developing a greater understanding of the language of illness, I have found words and narratives lacking. We need alternate stories to those we are fed by society and medicine. Writing is powerful, and so are our stories. Currently drawing, instead, on narratives of the more-than-human, I am developing an anthology of nature writing by authors with chronic illness and disabled writers called Moving Mountains, a start to rewriting our tales anew. I am hopeful that writing and reading will create change. I guess I am still a psychologist after all.
Conclusion
The eloquent words of the five writers show common threads: losing control over our body profoundly affects our experience of the world, making us an ‘other’ and influencing the kinds of stories we are drawn to telling; speculative, weird, absurd or experimental forms of writing often appeal to the chronically ill; chronic illness puts restraints on the physical act of writing and typing; finding a creative voice can be an antidote to the injustice suffered by M.E. patients or the inadequacy of mainstream narratives of sickness; writing is a superpower and so is telling our stories; a rich creative life can be a source of sustenance and identity. As Don DeLillo said, ‘literature is our consolation for having lived in the world’.
About the Contributors and Editor
Henry Anderson is a former news reporter who has written for national UK newspapers. He studied English at Magdalen College, Oxford. He spent time as a ‘jackaroo’ (trainee farmer) working on farms in Australia before working in publishing and journalism. He has written three novels, The Mouth and Cape Misfortune I and II.
JP Seabright (she/they) is a queer writer living in London. They have three pamphlets published: Fragments from Before the Fall: An Anthology in Post-Anthropocene Poetry by Beir Bua Press; the erotic memoir NO HOLDS BARRED by Lupercalia Press, and GenderFux, a collaborative poetry pamphlet, by Nine Pens Press. More info at https://jpseabright.com and via Twitter @errormessage.
Laura Elliott is a disabled writer and journalist based in Sheffield. Her writing has been published by The Guardian, Boudicca Press, Monstrous Regiment and others, and you can find her screaming into the void on Twitter at @TinyWriterLaura.
Louise Kenward is a writer, artist and psychologist. She is currently writer in residence at Rye Harbour Nature Reserve with Sussex Wildlife Trust and is running Moving Mountains, an Arts Council England funded project developed to connect chronically ill and disabled people with nature writing. She is due to begin a practise based PhD in Creative Writing with the Centre for Place Writing at Manchester Metropolitan University in the Autumn, 2022.
Nasim Marie Jafry was born in the west of Scotland to a Scottish mother and Pakistani father. Her autobiographical novel The State of Me was published by an imprint of HarperCollins in 2008. She has had short stories in various Scottish literary magazines and has been shortlisted for the Asham Award (2001), the RLS Award (2005), the Bridport Short Story Prize (2011) and the Bridport Flash Fiction Prize (2012). At the end of 2012, she appeared in a BBC Alba documentary in which she discussed her novel and her illness, and in 2013 she read at ‘Dissecting Edinburgh’, a Medicine and Literature event at Surgeons’ Hall in Edinburgh. In 2014, she had a short story in ‘The Write Stuff’ feature in The Scotsman. More recently, she has had short non-fiction in A Book of Banished Words, edited by Nancy Campbell (2017). She is very slowly working on a novella.
Katy Wimhurst’s first collection of short stories, Snapshots of the Apocalypse, was published by Fly on the Wall Press. Her fiction has been published in numerous magazines and anthologies including The Guardian, Ouen Press, Fabula Press, Cafe Irreal, and ShooterLit. She also writes essays. She is housebound with the illness M.E.
This piece was commissioned for our latest mini-series, Our Body’s Bodies
Everything is written on the body – but what does it mean to write about our bodies in the era of Covid-19? And is it possible to write about bodily experiences in the face of such pervasive and continued violence? Using different modes of writing and art making, Lucy Writers presents a miniseries featuring creatives whose work, ideas and personal experiences explore embodiment, bodily agency, the liberties imposed on, taken with, or found in our bodies. Beginning from a position of multiplicity and intersectionality, our contributors explore their body’s bodies and the languages – visual, linguistic, aural, performance-based and otherwise – that have enabled them to express and reclaim different forms of (dis)embodiment in the last two years. Starting with the body(s), but going outwards to connect with encounters that (dis)connect us from the bodies of others – illness, accessibility, gender, race and class, work, and political and legal precedents and movements – Our Body’s Bodies seeks to shine a light on what we corporally share, as much as what we individually hold true to.
Bringing together work by artistic duo Kathryn Cutler-MacKenzie and Ben Caro, poet Emily Swettenham, writer and poet Elodie Rose Barnes, author Ayo Deforge, writer and researcher Georgia Poplett, writer and poet Rojbîn Arjen Yigit, writer and researcher Hannah Hutchings-Georgiou and many others, as well as interviews with and reviews of work by Elinor Cleghorn, Lucia Osbourne Crowley and Alice Hattrick, Lucy Writers brings together individual stories of what our bodies have endured, carried, suffered, surpassed, craved and even enjoyed, because…these bodies are my body; we are a many bodied being. Touch this one, you move them all, our bodies’ body.
We also welcome pitches and contributions from writers, artists, film-makers and researchers outside of the Lucy Writers’ community. Please inquire for book reviews too.
For submissions relating to trans and non-binary culture email dytorfrankie@gmail.com
For poetry submissions email elodierosebarnes@gmail.com
For reviews, prose submissions, artwork and general inquiries email hannah.hutchings-georgiou.16@ucl.ac.uk
