The Radical Potential of Sickness Stories

In Part 2 of their series exploring chronic illness narratives (see Part 1 on ‘refusal of resolution’ here), Char Heather considers the radical potential of sickness stories to crip and to queer what is considered ‘credible, coherent, complete, interesting, moving, and morally sound’.

Chronic illness is an experience that does not easily fit into the conventions of narrative arc. It can ebb and flow, explode in debilitating pain or fatigue; it can feel fractious, meandering or fragmented. This unruliness can be frustrating to communicate and yet it is also a generative space for exploring different shapes of stories, with cripping and queering potential on what we expect from narrative.


The arc is a narrative template that heavily emphasises resolution and elements of causality. It is most often a teleological form. From Aristotle’s work on tragedies and the dramatic arc (Alison 2022, 10), alongside further work in the form of Freytag’s pyramid, we see events mount in tension to peak before descending again into closure. Not all arcs are neat and straightforward but they roughly follow this structure. The typical ‘whodunnit’ is a wonderful example of how the end can inform the whole in a narrative arc. The reader is presented with a mysterious series of events; the reader assumes these events are linked somehow, barring red herrings, but such causality is only clarified once we reach the end and find out whodunnit. It illuminates the whole story, putting everything into context. The chronic illness experience resists such a form as it lacks, most often, a specific endpoint and has a complex relationship with causality.


My own experience of chronic illness, and that of many others, lacks concrete causality. I do not know why I am sick and it is difficult to predict how and when my symptoms will flare up. There are patterns I can follow. I know that my hormonal cycle plays a big part, as does exercise, work and emotion. But with every flare comes many questions: did I walk too much yesterday? Has my anxiety worn me down? Am I at the beginning of a bout of cold? Did I wake up in the night a lot? Is it the changing of the seasons, barometric pressure? It is, for me, a combination of many intersecting factors that are too sticky and minute to confidently identify. This is an experience shared by many with chronic illness. Thus a story shape that relies too heavily on causality and resolution feels unfitting at best, a violence at worst, when used to communicate such an experience.

Image: Char Heather

The content of experiences helps to determine the form of their telling. Such tellings do not, of course, have to be narrative (Woods 2011). However, when one is using a narrative mode, thinking of shape can help to organise an otherwise chaotic mosaic of happenings. A narrative shape is not going to be a perfect metaphor for one’s experience, but it can be an incredibly useful tool for thinking and writing through it. If narrative shape is a tool that we use to think through the structure, form and content of a narrative text then what happens if we expand this toolkit?


Our familiarity with the arc and our habit of reading for the end of a text allows us to predict what might happen in a story. If there is a gun, as per Chekhov, we predict it will go off. If there is a romance we predict whether or not it will end happily ever after or in tragedy. Bolaki writes on how illness can bring ‘new understanding of the world as unpredictable’ (Bolaki 2018, 335), and so shapes that do not so easily encourage predictions can be useful to narratives of illness. This can perform a kind of cripping and queering of narrative, where queering is “the deliberate unstraightening and defamiliarisa[t]ion of bodies, desires and orientations” (Palmer 2020, 2) and cripping can be to queer in a way that works against neoliberal expectations of the body (McRuer 2006, 2).


As a facilitator, I run workshops that prioritise people with chronic illnesses and/or disabilities in which participants come up with different shapes to use as framing devices for writing informed by their experiences. In these workshops, there are always moments of rushing excitement: such possibilities! And of course there is friction when trying to map out how these shapes can be translated into narrative. What does it mean to write a story that is shaped like a mycorrhizal network? This is a question I have discussed with several people, and if you have suggestions I would love to hear them. Even with these frustrations, which every writer experiences regardless of how they are working with ‘shape’, it is freeing and exciting to explore these openings, dissolving some of the boundaries of what we consider a narrative must be, particularly when living in a society that pushes limitations onto what specific body/minds can access and do.


The cover of Tender Points
Tender Points cover. Image: Nightboat Books

In Amy Berkowitz’s lyric essay Tender Points (Berkowitz 2015) we see a fragmented shape of narrative. Though there is a point of trauma explored within the text, she queers the causality. She alludes to the site of trauma but does not fully realise it narratively. She references wanting to write like a man, an ‘écriture féminine en homme’ (Berkowitz 2015, 26), in order to be believed. This is a text of repressed memories re-emerging, and of the link between such trauma and chronic illness experiences. The cause and effect remains foggy, explored but not explicitly given. The text is fragmented because the experience is too. Fragments connect, create patterns, give understanding and voice to an experience without over determining said connections.


I keep returning to a conversation I had with chronically ill writer, designer and publisher Kaiya Wearea. We were discussing process and practice as chronically ill people for a piece in Hot Potato News. I mentioned how nervous I was about writing both a thesis and a novel while existing in the strange and unpredictable space of chronic illness. Kaiya’s response, to paraphrase, was that there’s something exciting about discovering what the shape of something will take when it comes from a particular body, the parameters it puts in place and the ways in which one must approach writing, all coming together to create a form that has come specifically from me, in my unruly chronically ill body.


The practicalities of chronic illness and writing are important when thinking on shaping a text. When one is racked with fatigue or pain, writing may often come in short bursts, as per Marion Michell’s Supinely Sublimely, a collection of textlings that were originally published on a blog when chronic illness disrupted Michell’s art practice (Michell 2016).

This piece, the one I am now writing and you are now reading, takes on fragments for similar reasons. I have been in a flare while putting this together and so my notes have kindly come together in edible bites. If one can write for long periods but irregularly, that might result in stylistic and tonal shifts that could be exciting, rather than a flaw, especially when exploring fluctuating experience. It may lead to writing the same thing over and over again, embracing repetition to create a narrative that spirals into or outside of itself, or perhaps becoming something palindromic.


“Narrative conventions serve to stabilise and authorise stories” (Kirmayer 2000, 154) and thus I think chronic illness stories have the queering and cripping power to destabilise our notions of narrative. Kirmayer goes on to state that such stories include our personal histories, with conventions affecting the social acceptance of these stories as “narrative conventions determine what is considered a credible, coherent, complete, interesting, moving, and morally sound story”. If the narrative arc is the convention, and chronically ill bodies exist so often in precarious positions on the outskirts of society, then there is so much radical potential in using chronic illness to shape our narratives. Experiences of chronic illness and the very ways in which such body/minds are able to write is rich with potential for innovative and exciting texts, and I am looking forward to reading more of them.

About the author

Char Heather is a writer, workshop facilitator and the founder of the remote body, a platform for remote DIY arts events and workshops that prioritise chronically ill and disabled people. Their PhD at the University of York, in English with Creative Writing, explores chronic illness and narrative in contemporary literature, with a focus on crip time, story resolution, shape and ideas of cripping narrative form. They would love to discuss themes of their work with researchers looking at overlapping areas and can be contacted on, or found on Twitter @lottyyy and Instagram @lottyyyy, alongside @theremotebody.


Alison, Jane. 2022. Meander, Spiral, Explode: Design and Pattern in Narrative. New York: Catapult.

Berkowitz, Amy. 2015. Tender Points. New York: Nightboat Books.

Bolaki, Stella. 2018. Illness as Many Narratives: Arts, Medicine and Culture. Edinburgh: Edinburgh University Press.

Kirmayer, Lawrence J. 2000. “Broken Narratives: Clinical Encounters and the Poetics of Illness Experience” in Narrative and the Cultural Construction of Illness and Healing edited by Cheryl Mattingly and Linda C. Garro, 153-180. Berkeley: University of California Press.

Palmer, Helen. 2020. Queer Defamiliarization. Edinburgh: Edinburgh University Press.

Mcruer, Robert. 2006. Crip Theory. New York: New York University Press.

Michell, Marion. 2016. Supinely Sublimely. London: Palewell Press.

Woods, Angela. 2011. “The Limits of Narrative: Provocations for the Medical Humanities”. Medical Humanities 37(2): 73-8.

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