To live, “we tell ourselves stories that do not include illness”, Johanna Hedva tells us in her most recent book, How to Tell When We Will Die: On Pain, Disability, and Doom. “In the stories we tell ourselves, the stuff of life is the stuff of decision, action, determination, and grit, not the times when we had to cancel plans because pain furred around us in a cloud, when we clutched the side of the bed from nausea, when we hinged ourselves in half because our bodies were oozing gunk. What I want to know is: What happens when the stories we tell ourselves in order to live are forced to include illness and disability and all the many words that are attendant to them.”¹ It seems that there has been a constant throughout the ages, that of the pretence that to be in good health is the only way of being in the world and of existing. In Illness as Metaphor, Susan Sontag describes illness as a double nationality that will one day become our passport: “Everyone who is born holds dual citizenship. In the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”² For British photographer and activist Jo Spence, who I know best for her self-portraits about her own experience with breast cancer, she says that health is the most boring subject for those that are well.

Last week, I celebrated the anniversary of my polyarthritis. It turned nine on May 10. And, on May 12, I turned thirty-eight. We prefer to celebrate together, for logistical reasons. In 2016, I was diagnosed with an autoimmune disease, rheumatoid arthritis. It was the beginning of a long medical and artistic path, the two being, from that date, intricately linked. Through a poetic play on words, autoimmunity/authotheory, I knew then that my medical wanderings would be connected to a new lexical and visual field. I had to find new words to describe what I was struggling to comprehend as an intrusion in my life, and which would also become part of my identity, chronic illness. This chronos that frightened me, this “for life”—that left me with “What? Really? For life!?”

Then began the runway show of white coats, like a TV movie in a waiting room. I went from pill to pill, a glamorous array of substances that dissolve within an organism. Methotrexate, a little less glam than the others. That was when my seven-year struggle to get off this dangerous form of chemotherapy began. Seven years of painstaking research and departures from the medical model in search of risk-free alternatives, which also had no real effect on the deterioration of my joints.

One text that accompanied me quite a lot—Carolyn Lazard is an artist who was the same age as me when they fell ill—was “How to Be a Person in the Age of Autoimmunity.” Their research journey into the body and their understanding outside the path imposed by the medical world seemed similar to mine. They writes: “The supposedly chronic nature of the diseases got me searching for other options, and ultimately a more holistic view of the body. From my hospital bed, I would look up alternative treatments and scroll through Crohn’s forums on my smartphone… My doctors told me there is a lot of misinformation on the web. This is true, but I was willing to listen to the suggestions of people who actually lived with the disease over advice from those who merely studied it.”³

I moved forward with the idea that yes, I will have to find new stories to those written by the biomedical world, which seems intent on reducing me to just a few words, a few charts, a few MRIs. For me, this was a matter of urgency: we need to add new stories to those told by the ableist and productivist society; a normative, oppressive story of the body. Personal narratives are places of resistance, intimate and political spaces. These narratives are primarily visual, but also filled with texts from allies, autopathographies (writing the story of your own illness) and subjective narratives that I am gradually discovering along the way. I’m creating my own bibliography, and it is already providing me with complementary stories and avenues of escape.

A few days ago, I was rereading my medical file since 2016, and it seemed to me that my story was indeed written in the dialect of doctors, the white-robed disciples of Hippocrates, composed of obscure abbreviations. On one medical report was written “illness history”, followed by a kind of transcription of a conversation that I’d had with the doctor. At the end of the paragraph, the story continued: “In dietary terms, she explained that she has been following a ‘paleo’ regime for the past three years, with lots of meat and no grains.” And then the following paragraph, finally, the “clinical opinion”… Clinically, weight is… Blood pressure at… Anyway. Perhaps my story was already being written in their language and I was being dispossessed of my own. It was time to write and paint my own story. Romanian artist Alina Popa, who died in 2019 from an incurable disease, wrote, in “Disease as an Aesthetic Project”: “The body is real but what we think about it is fiction. Medical views are the fiction imposed on us by modernity and capitalism. This is a consensus fiction. How you regard the body, how you name, determines how you act upon it and how its acts back. We are free, and the body actually calls for individual fictions, or fictions that give it trust and freedom. […] The body calls for a different language. You have to enter the unknown. It cries out loud through symptoms that it needs to become poetry not theory. […] I hate that the doctors nullify my poem with their order words.”⁴ Theory fades, giving way to pure life experience. Autotheory. From the experience of an ill body and of pain. Good. Not very glamorous, but my work wraps it all in silken fabrics, purple velvets, pink satins, society organs in evening gowns, lounging on cool sofas, gentle watercolours evoking domestic scenes, exchanges of care in medieval communities, painted curtains conjuring stories of symbols of healing, cell cushions to see oneself in macro, handbag-sized organs, or ritual stuffed animals for cathartic evenings.

I was constantly pulled between waves of inflammation and hypersensibility. Inflammation wanders through the body, reaching all the way to the brain. Inflammation is a modern-day curse. Although it is a phenomenon that has always existed, the world has become a hotbed of inflammation. Inflammation is primarily a repair phenomenon, a mechanism for the body to heal itself. But in autoimmune disease, the immune system is dysfunctional, producing antibodies that attack the body itself. Rupa Marya and Raj Patel in their book Inflamed: Deep Medicine and the Anatomy of Injustice, tell us: “Your body is inflamed. If you haven’t felt it yet, you or someone close to you soon will. […] Your body is part of a society inflamed. […] The planet is inflamed. Global temperature records are being broken, forest fires are turned from annual to perennial events, oceans are rising, and storms have become bigger and stronger. This is the epoch of endless fire. Human destruction is tearing apart the web of life, shredding the network of relationships between organisms and places in which we are embedded. Inflammation is a biological, social, economic, and ecological pathway, all of which intersect, and whose contours were made by the modern world.”⁵

Inflammation is thus a state of being in the world today, from what we eat to the air that we breathe, pollution surrounds and penetrates us. To produce more, we pollute more, and we are all irrevocably inflamed more. There are not many places on Earth where we can escape inflammation, only preserved, isolated corners to which no one has access. As always with invisible chronic illnesses, appearances are deceiving; my polyarthritis, which temporarily left me for three years, is now reincarnating in other places. The inflammation takes the form of a herniated disc or much more insidious phenomena because science has not yet found names for them; they are a kind of gray area in medicine. My polyarthritis. I realise I could use the article “the”, but unconsciously I use a possessive pronoun, mine, the one that belongs to me, the one that at one point became a part of my identity, that was my companion for life. Today, I am changing pronouns; the process of dispossession has begun.

For two years, I spent most of my time in bed, unable to walk very much. Carolyn Lazard tells of the same experience, as if a mirror image: “This was my second flare, with many to come. The story continues as such: constant fatigue and discomfort punctuated by the brief, high dramas of flares and successive hospitalisations. I spent the greater part of two years lying down in a bed.”⁶ When we talk about narratives of illness, it is often from the perspective of the bed, or by considering the space of the bed as political—the only space where our resistance against capitalism rages in silence. Our silences will not protect us, according to Lorde, yet it is in silence in our beds that our bodies fight and exist.⁷ This horizontality is our condition of relating to the world. In her book Ill Feelings, Alice Hattrick talks about the sick room, the room of illness, from her bed: “Bed isn’t just the place you are confined to when you are ill, when you feel those sensations spread over your body, struck down with a series of little illnesses. Bed rest is freeing. Illness allows you time away from the army of the upright and the ideologies of the healthy.”⁸ She also evokes childhood: “Sleep is the only thing I am good at. Being ill is one of my greatness pastimes. Having a crap life is my hobby. My bed is the best place for me, not boarding school.”⁹

For Anne Boyer, the bed is a tragic space, because it is a place of love and of death: “There is no more tragic piece of furniture than a bed, how it falls so quickly from the place we make love to the place we might die in… In vertical life, when you are well or mostly and walking around, pretending to be, the top of your head is the place the heavens touch.”¹⁰ Vertical life is thus that which is addressed to those in good health and horizontal life to the others, to the deviants, the sick, those who fall outside the norm. Johanna Hedva, in their essay “Sick Woman Theory,” which has become a reference in the genre of “illness narratives,” asks the question about activism from bed, how to participate in protests while confined to bed. “I listened to the sounds of the marches as they drifted up to my window. Attached to the bed, I raised my sick woman fist, in solidarity… started to think about what modes of protest are afforded to sick and disabled people at all… It seemed to me that many would be the people for whom Black Lives Matter is especially in service. I thought of how they might not be able to be present for the marches because they had to go to work, or because they lived under the threat of being fired from their job if they marched, or because they were literally incarcerated. They might not be able to go to the march because of the threat of violence and police brutality that exists at any protest. They might not be able to go because their bodies were this peculiar convergence of hyper-visible and invisible, marked and unmarked, which instantiated a dangerous vulnerability around them. They might not be able to go because of their own illness or disability, or because they were caring for someone with an illness or disability.”¹¹

Bed is also where our bodies become geographies to mentally explore, the anatomical dissection that we perform in our mind as it wanders over our reclining bodies. For me, it is an interior exploration of my own body. I stroll through my veins, visiting my organs as if an amusement park, this journey through my body is a new feeling since my body has changed. Everything is perceptible, present. As if I’d never paid attention to this vital interior machine that could, at any moment, shut down. When you think about it, it’s dizzying, anxiety inducing, because the sick body reminds us of the death already present within us, waiting for the right moment to manifest. About this, Anne Boyer said: “In the sickbed, the sick disassemble and this disassembly crowds a cosmos, organs and nerves and parts and aspects announcing themselves as unfurling particulars: a malfunctioning left tear duct—a new universe; a dying hair follicle—a solar system; that nerve ending in the fourth toe of the right foot—now eviscerating under chemotherapy drugs—a star about to collapse.”¹²

In her book When the Sick Rule the World, Dodie Bellamy imagines the meetings of a group of people who are ill, allergic to the multitude of poisons produced by the industrial world in which we live, especially in big cities. She writes: “I join a listserve for the sick and learn that the monthly meeting of the sick is happening the following weekend. It takes place in a non-toxic apartment building in San Rafael; built especially for the sick. No fragrances are allowed in the building. Those attending the meeting must use fragrance-free soap, lotion, shampoo, hair conditioner, gel, deodorant, laundry detergent. No fabric softener, no clothes that have been dry cleaned. I already do most of this, but my hair products and my body lotion have herbal oils in them, so I spend $30 on fragrance free versions. I enjoy the ritual of carefully bathing and dressing myself in preparation for my entry into the realm of the sick.”¹³

Club Chronos. That’s what I’d call my monthly club formed around a community of people all suffering from various chronic and invisible illnesses.¹⁴ We would meet one Sunday a month on large cushions with imprints of shapes to try together to tell our stories, to find the words, to invent them.

Club Chronos would not be financed by a pharmaceutical company. Club Chronos would be self-financed by its members. Club Chronos would be a medicated club based on our grandmothers’ recipes, but it would not be limited to venerating the goddesses of plants and of nature because sometimes a good little chemical pill has advantages. Club Chronos evokes time, the time of the illness outside the clock that makes it a unique experience in a parallel sphere.

At the moment, I’m writing from my bed because I’m too tired to sit on a chair. Ten years ago, I lived in a big share house on QuaI des Charbonnages in Brussels. I’ve always been tired, even before I had a chronic illness. One day, an energy therapist who waved her pendulums over my chest, and whose methods I still doubt, told me that I give off very little energy. Bed was always a very important place where I spent time stretching out my body. It was free, however, of the dramatic overtones it would later take on, when it became my sickbed. At that time, life was a party: I loved the social life of the art world and I went out a lot. One day, when I was supposed to be going out with my roommates, I was taking a nap, as I normally did. When they came to get me, I pulled the covers back to get out of bed. I was literally dressed to go out, dress, coat, and heels of an eccentric volume and excessive height, and too much makeup. Like a Hollywood film, I was impeccably ready, no trace of sleep. I don’t remember any impeccably made-up woman waking up on screen getting up with her shoes already on. This anecdote has haunted me for a long time. Secretly, I still love the idea of getting dressed up for bed.

In what is generally referred to as the art world, without really knowing the precise geopolitical issues attached to this world, the idea of illness has today become a popular thematic, associated with care, but it is not taken into account when exploring its maintenance system. The art world is a factory where each artist must produce quickly and at volume, and lead a life filled with portfolios and exhibitions, but without any guarantee that money will come. All artists who live with invisible illnesses and disabilities refer to this era of capitalist production. This word, which we’d like to replace, ends up creeping into all our writings, all our manifestos, all our stories of life and art. Because I’m fond of thesauruses, I take the time to look up the word capitalism. In the Larousse, the French dictionary of reference, the word “capitalism” does not exist as an entry; we find only “capitalist,” which is “a wealthy or rich person.” Cnrtl, the French lexical portal, gives three synonyms: “capital,” “finance,” and “liberalism.” On synonymes.com, we find “economic regime,” “liberalism,” and “mercantilism.” I search for more appealing possibilities but with no success. It seems to me that our personal narratives provide ample definitions and offer concrete realities.

I recently read the text Obstacle Race by Amalia Ulman, an artist about the same age as me, and who I remember as a young artist just out of school, possibly a little jealous of her meteoric rise. What I remember of her work, which I saw at an exhibition in Graz in Austria, has nothing to do with what I can see of her today and the text I read. Unravelling the myth of the artist. Her work, striking at the time, was very much “of the time”, reflecting what was happening in terms of aesthetics in the 2010s. She was among the first to use Instagram as a platform to perform herself, multiplying herself in archetypal self-portraits of young women and clichéd glossy scenes. In 2013, she had an accident that changed her way of being in the world. In the text, she confronts her disability with the art world’s expectations of optimism, and once again, the famous “C” word is used. “With disabilities came a different perception of time—which is not the most fortunate thing to deal with when you live under capitalism. Throughout the past five years there have been many times when my leg pain has gotten me bedridden at the least convenient times, during install, or the day before a show opened… I will put it this way: during the last five years I’ve had a fraction of the time and energy most of my abled peers had, without any sort of privileges to compensate for it, earning the same (if not less) and spending more on medical treatments, massages, accessible housing and taxis. This is not something only I have had to deal with. Too many people around me have gotten burnt out, not being able to cope with the pressure the art world brings with it. Whether it is due to medical issues or class issues or both, it is heartbreaking to see talented people being left behind. ‘If you are not feeling well, we will wait for you,’ said no gallery or institution ever. In the long run, I don’t think a few months or even a year really makes a difference in the course of art history, as long as the work is good. But go tell that to an institution.”¹⁵

When our tired bodies, no longer exploitable as labour force, are removed from the sphere of capital, they will freely express their anger at their precariousness and ghostly future. Our ghostly futures are our bodies wandering our apartments, our domestic spaces, our bodies leaving their social and productivist bodies. In our empty apartments, where the bedroom takes on all the functions. The rest of the rooms are stripped of their trappings; they become a backdrop where dust gradually settles. I wanted to write a story about bed and tiredness. Anne Boyer says that emancipation through writing and thinking is a collective project. I have brought together all these narratives because I also believe that it is through such writings that the body can be emancipated from medical discourse. By reclaiming our bodies through multiple writings of our stories.

I will finish with the words Johanna Hedva themself closes their essay with: “Because, once we are all ill and confined to the bed, sharing our stories of therapies and comforts, forming support groups, bearing witness to each other’s tales of trauma, prioritising the care and love of our sick, pained, expensive, sensitive, fantastic bodies, and there is no one left to go to work, perhaps then, finally, capitalism will screech to its much needed, long-overdue, and motherfucking glorious halt.”¹⁶

This text has been adapted from a version written for the reading-performance Club Chronos (May 16, 2025).

illnessnarratives.net