A Disingenuous Prescription

I was first diagnosed as an illness narrative in August 2022 by an editor I met with privately after waiting to be seen for 15 months in a general submissions inbox.  


The editor listened to my author’s heartbeat and pointed to the hollow crevice between her twin absences of breast – a choice of crevice he admitted to have been arbitrary other than for its titillating potential in this recounting. He declared that I, an illness narrative as textbook as ever he’d seen, was unlikely to have many pages unless that body, though an ideal balance of disgusting and erotically compelling, wasn’t attended to at once. He did not say for sure how things would turn out. He did not wish to depreciate the artful suspense my diagnosis demanded I perfect. Instead, he sent us both on an odyssey of tightly controlled yet thrillingly experimental-sounding treatments. Through these, merely following editors’ orders, we could profitably spectacularise ourselves while circumventing charges of cynicism. 


But before I could wield my pornography of experimental treatments, I would need to do some groundwork to earn that kind of display. I would need at least to attempt to balance scene with exposition. It would help, the editor suggested, if I built towards the diagnosis with an intriguing genealogy of symptoms. There had to be mystery, he said. Think of Tolstoy. Think of the quickening pageant of not knowing that culminates in the death of Ivan Ilyich. The strange taste in the protagonist’s mouth, the mild discomfort that swells to heaviness, the heaviness that heaves into pain. The weakening of appetite, suspicion of malodour leaking from the mouth. Like Ilyich, my author would need to take stock of her dysfunction and be shaken by fear, but not certainty, of death. The ultimacy of diagnosis, the editor seemed to suggest, was the death-knell of literary tension. The author should not know, at this point, what kind of narrative I was, or am. What she needed to know, like Ilyich, was that ‘something dreadful, new and so significant that nothing more significant had ever happened in her life was being accomplished.’  


That way, the editor explained, I would have space to cycle through the various ways in which a person can respond to the abject loss of mastery over their body, to the formlessness of that body’s exegesis. He handed me what he said was an influential survey of my type. The words THE WOUNDED STORYTELLER groaned across its cover. It had been written by a man called Arthur W. Frank to make people understand how important narratives like me could be. Those who are plagued, the book suggested, are plagued by a loss of authorial authority – the words that once made up the naively plotted stories of their lives have been thrown into a bag and rattled. This lays out your four treatment options, the editor explained with a yawn – familiarise yourself with the basics of taking back narrative control. 

~

Option one: My author and I could detail the ways in which she attempted to discipline herself – dulling the teeth of her pain with Spartan exercise regimes. Alternatively, we could speak of how she sought to live as a mirror of ideal types, shaving away the blubber of a toxified lifestyle until there was nothing but gristle. And/or option  three: I could write of how, having failed in these ways to soften the gnawing sensation, she displaced her rage against her body’s own maddening contingency onto her superlatively innocent boyfriend. How she spat at him in jealous resentment at his impotence to make the pain stop. I could, in fact should, try to sow a pleasant suspicion in my readers – a sense that all this thrashing was making things worse in ways that would come to a head. 

Only then, the editor cautioned, should the thrill of a visible complication be unleashed. And only at this deliberate turning point should we grasp that it is indeed an illness narrative we are reading. You are blessed with good material, the editor reassured me – a luridly describable wasting condition secondary to chronic pain; an eminently tangible set of symptoms, promisingly prone to ‘trajectory’, elegantly, climatically shakeable out from the baggy shaggy dog story of discomfort. This genre, he patiently explained, requires detailed patient histories – ethnography as theatre, testimony as teaching. The demands of treatment, after all, are both diagnostic and therapeutic. We need data! he screeched. We need records! How can we fix the collective toilet of faulty human bodies without exposing the tubes inside the tank?

The manner of telling, I was told, would allow me to construct my author anew, while also selling this reconstruction as instruction. Here’s how I slapped the flesh back on my bones or made peace with the fact that I couldn’t. I reckon there is hope for you too if you buy my book. In the process, I would covertly be restoring her sense of agency and manifesting patient-type four – ‘the communicative body’. I could paste this body onto the page and thereby into the world – a wound-borne nativity of altruistic redemption. Here, the book suggested, I would find my life’s purpose as a kind of ethical necessity – the illness narrative as the creative product of a person who writes, not just to restore a hold on their life, but to furnish the lives of others. The single goal, the editor repeated, in deferring the grand diagnosis was to control the narrative – which was to say, to control myself. The payoff in saleability, though, would hopefully be threefold – I’d be healing, entertaining and instructive all at once – a cash-machine with tinctures and a conscience.

~

This did not go down well with my author who withered at the mercenary language of ‘engagement’. She felt very keenly, when selling her stories, the importance of hating sales. To chase her own ambulance, she sensed, was as undignified as it was urgent, an exploitation of her vanishing body as much as an attempt to resummon it. For all the editor’s talk of the ‘relatable’, his vague invocations of social good, there was, she sensed, a betrayal in submitting her illness to literary treatment. 

And yet, to refuse the dictates of the literary market was to sacrifice her ethical duty – if not to others, as the literature seemed to insist was my ultimate value – then possibly to herself. For her comrades on the self-declared and broadly abstract Left were threatening another diagnosis. To write without bounteous payment, they yelled in her ear, was wanton ‘self-exploitation’. They looked at me like if I tried to do anything other than what the editor said I would be stealing from her already vacant bank account. 

It seemed she was damned if I did and damned if I didn’t make my way onto the page. To write as prescribed to tenterhook readers was to exploit a vulnerable body, spinning a gross contortion in the name of ‘speaking truth’; to write for no-one at all, receiving nothing in compensation, was to exploit a vulnerable writer – a labourer of words as much as pain. If the editor’s advice gave her an uncomfortable feeling – repulsion, you might call it – what publishable alternative was there to write? How was she truly to speak for the benefit of others or herself if the only viable script was the one already written for her? 

~

If my life as an illness narrative has taught me anything it all, it’s that writers can’t just choose. You can no more straightforwardly rewrite me than attempt to rewrite history itself. For the writer-as-worker can no more override the conditions of her entrapment than override the fact of being ill. My author wondered what it even meant to ‘exploit’ oneself, a sole actor in whom, by definition, there cannot be a mismatch of power? Exploitation, as far as my party conversations with other literatures would have me believe, requires not just the transfer of surplus product or value to someone other than oneself, but more specifically the extraction of surplus because of your subordinate position in the market. My author was right to sense that attempting to write from any position of gross subordination was much like attempting to heal in a world that wants you to be ill. If writing an ill body is like trying to write with the wrong hand, then writing from a position of economic weakness is most often trying to write when your hands are required for other things. If someone or something outside you ensures that your hands are oversubscribed, ought you be named the exploiter, whose choices determine the rules of the game?  


I have spent enough time comparing illnesses with other narrative friends to know that beneath the symptoms themselves is a web of precisely such compromised choices. Jammed behind the screen of pain, dizziness, nausea and failure to speak, hair loss, weight loss, incontinence, arrythmias and permanent cold is a muffled conversation about how something more than these seems not to be going right. A person may want to confront this with every cell in their flesh but now they must handle being ill; they are faced with the distracting obligation to accommodate, never deconstruct. Where are the battle lines of my anguish, a sickly author might ask – psychic, somatic, social, spiritual, learned or innate? What level and nature of care am I denying myself, and what should I expect from the world? I, the illness narrative, dream of the chance to examine such questions. My authors apply for grants with which they might win me the space for critique and all of the time spent doing so steals more from their reserves.

~

I once was treated to a fancy lunch with an illness narrative more advanced than myself, already published in fact by the poet Anne Boyer. It chewed its words with the anger and crazed intention of last resort, as though, for reasons we both understood, determined to chew on wasps. Its rage was with a world in which no responsibility is shared. To tell one’s own story, according to people like Frank, was each of our ‘responsibility to the commonplace world’. This, Frank insisted, was the central moral imperative of our era. To take control of your narrative, your body, your wallet was yours and yours alone. This world, my companion retorted, made it very difficult for the sick to achieve such things, more difficult still to achieve this within a sickened economy of storytelling. In fact, if somehow you managed to achieve it, you only further fed the beast of an illness-producing social order. ‘I would rather be nothing at all’, the narrative cried, ‘than propagandise for the world as it is’. What if Frank’s parcelling of bodies into narrative types as though these were primordial facts – facts of discipline, mirroring, domination, communication and the rest – was itself a propagandistic technique?


For when we declare it the ethical responsibility of the storyteller to choose the ‘communicative’ pathway from a drop-down menu of ways of being, what becomes of the social cruelties that have made these the available choices? Self-help as an obligation is no help at all. How, then, are we to help ourselves? 

~

What might happen in a world that did not make hostages of the sick – neither to the bootstrapping of the ‘health’ regime or the demands of editorial lucre? What would happen if the sick had space, both physiological and financial, if not to surrender then to suspend psychic and narrative control? What if they had time and support to attend to the way their bodies rumble within the world – to where the limits and potential of their agency really lie? 


I do not know. I am just a story. But I suspect in a better world I might spend less time with symptoms and traumas themselves. Rather than being the point of my narrative agenda, illness might become the language through which I might say something else – something more compelling than the galloping of symptoms, something deeper than the crevice in a young woman’s chest. Perhaps I might contemplate the toxic air in which symptoms condense and collect. I might still champion the tentative exercise of self-affirming care but question, perhaps, its boundaries and broaden its demands. Perhaps I would look like something the editor has yet to read – less like a symptom all of my own. I might feel a bit less like a wasting disease, feel less like the selling of a wasting disease; might feel like taking the wastage apart and making something new from the detritus. I hesitate to venture too far into this thought with the editor’s breath on my neck. He has already filled his quota this year in the genre of ‘genre-defying’. 

Amber Husain is the author of Meat Love (2023) and Replace Me (2021). She is currently completing a PhD and working on a new nonfiction project.