MedHums 101: Tom Hey explores the role of illness narrative in the medical humanities, from its importance in cementing the field to crucial questions about what lies beyond.
Once upon a time in the medical humanities, narrative seemed poised to solve all of medicine’s problems. From the 1950s onwards, there was mounting scepticism towards the ability of an increasingly scientific medicine to properly pay attention to patients’ experiences of illness. Medicine and healthcare made rapid advancements during the 20thCentury, meaning more diseases could be treated than ever before. However, many patients, technically cured from disease, were left unsatisfied. They wondered: What about me? What about my experiences? Medicine could do remarkable things to bodies, but had little to say about the people living in and through those bodies (Jurecic 2012).
Patients, often left feeling silenced and objectified by health care services, responded by writing. Stories of illness expressed everything missing from the medical case history: how illness bled into other areas of life; what it felt like to be subjected to medical scrutiny; how medical settings could inspire stress and anxiety; and what happened when the medical gaze withdrew. The illness memoir genre exploded in the 1980s and 1990s, following the proliferation of memoirs of HIV and AIDS, and was immensely popular. It seemed as though a new era had begun, one in which patients felt empowered to tell their versions of events and challenge the tyranny of the medical establishment over their illnesses.
The medical humanities grew out of and seized upon the growing popularity of the illness memoir. Arthur Kleinman’sThe Illness Narratives (1988), which incorporates the stories patients tell about their lives beyond the four walls of the clinic into practice, has been incredibly influential in emphasising the overlaps between medicine and literary criticism. Scholars across disciplines have taken up Kleinman’s torch and contributed to a new critical field which takes seriously the mutual advantages to be gleaned from understanding medicine as a narrative practice. Narrative has been championed for bridging divides between patients and practitioners, allowing patients insight into their own disorienting experiences, and fostering a tolerance for ambiguity often missing from an increasingly bureaucratic biomedicine. Stories breathed new life into an often dehumanising and traumatising medical institution. Patients were reclaiming their voices and producing their own knowledges about the illnesses they lived with (Frank 2010).
Interrogating the narrative turn
However, by the end of the first decade of the 21st Century – the medical humanities now a distinct field and entering its ‘critical’ phase – academics began to pause and reconsider what exactly narrative was doing for the medical humanities. Sure, narrative had helped to cement the field and provided invaluable insight into medicine and illness. But scholars started to interrogate the baggage which narrative dragged along with itself. They asked: What kinds of narratives are we appraising? Who are we reading? And, crucially: What lies beyond narrative? Such questions continue to haunt the field.
At the fulcrum of this critical reflective pivoting was Angela Woods. Woods (2011) uses the philosophical argument that not everyone experiences their lives as a linear narrative to suggest that the medical humanities’ reliance on narrative is at best misguided, at worst damaging. She argues that the belief that narrative provides direct access to experience reflects biases towards certain kinds of embodiment – narrative favours the normative – and that ‘narrative’ has become a catch-all for any and all forms of expressive writing, erasing intricacies of form and genre. “Narrative does not have a monopoly on expressivity,” Woods proclaims (2014), and calls not for abandoning narrative, but denaturalising it: scholars should recognise that stories emerge under specific historical, cultural, and personal conditions, and that different people find meaning through different media.
This scepticism towards narrative gained traction throughout the 2010s and into the 2020s. Scholars have continued to explore the limitations of narrative when it becomes a standard that creative outputs must meet to be deemed valuable. James Overboe, for example, describes diseased, disabled, and traumatised people as being ‘trapped in a glass prison’ (Overboe 2007) by social scientists and literary critics, who transform their stories into metaphors and tropes to make sense of and find meaning within, according to pre-determined frameworks. Overboe is concerned that suffering cannot be listened to on its own terms due to a preference for linear written narrative. There is also hesitation about the assumption that a healthy body equals a healthy, coherent narrative. Such a prescriptive approach stifles rather than encourages creativity, which contradicts the incentive to write in the first place. Further, some illnesses are harder to present narratively than others, such as chronic conditions and mental illnesses, and so an exclusively narrative focus ignores a broad swathe of conditions which are often already marginalised within society. It is clear, then, that drawing the line at narrative is not enough. To gain a more well-rounded understanding of illness, medical humanities scholars must be willing to venture over their disciplinary parapets and incorporate what lies beyond their comfort zones.
Gesturing beyond narrative: three case studies
Translating Chronic Pain: Moments and Fragments, an interdisciplinary critical/creative project based at Lancaster University and led by Sara Wasson, exemplifies moving beyond narrative in literature. The online anthology invites submissions of ‘flash’ illness writing, between five and 150 words, which express ‘a moment or fragment of experience of persistent pain’ (Wasson 2017) from a range of perspectives, dimensions, and emotional registers. Pain is characterised by invisibilities, gaps, and intersections, and yet “may not lend itself to established forms of either illness narration or survivorship story” (Wasson 2017). The call for flash writing liberates writers from the shackles of extended narrative, and leads readers towards aspects of experience easily overlooked within longer stories. Translating Chronic Pain lends a mouthpiece to a diversity of experiences and removes literary barriers which obstruct understandings of living with chronic pain. The project is an inspiring example of work being done within the field of literature to erode a dependency upon narrative.
Moving beyond the field of literature and into graphic territory, the graphic medicine community lies at the crossroads of healthcare and comics. Coined in 2007 by Ian Williams, graphic medicine is a broad and welcoming movement which coalesces around graphic memoirs of illness, educational comics, academic papers, and therapeutic comics-making workshops. Comics are invaluable for representing illnesses since images can capture elements of bodily suffering which are difficult to articulate through language alone. Those alienated by stories might find in comics a compelling and expressive form for making their interior worlds visible and communicating their illnesses to others. The graphic medicine community encourages participation regardless of skill level or expertise, making it a democratising and inclusive field which has allowed people across healthcare contexts to gain insight into experiences of suffering, and fosters an atmosphere of community, sharing, and discussion across disciplinary backgrounds.
A third example comes from Arifa Akbar’s Consumed (2021). Akbar’s memoir explores her difficult relationship with her elder sister Fauzia, who suffered from depression and disordered eating throughout her life and died suddenly from tuberculosis in 2016. While Akbar’s narrative outlines her sister’s life and provides a history of tuberculosis – the stuff of the typical illness narrative – it is accompanied by reproductions of Fauzia’s own artworks. These images, which incorporate watercolour, embroidery, and paper collage, stand in for lacunae within Akbar’s story and gesture towards the limitations of written narrative. Humorous, vibrant, and expressive, the artworks tell a story of their own and guide readers beyond the safety zone of the written towards the openness and fluidity of the graphic. It’s difficult to know exactly what to do with these images for those (like myself) with no background in visual art, but that is exactly the point. To be comfortable with the medium of representation leads to complacency; being confronted with an unfamiliar form is a necessary reminder that experiences are not transparent and that there are always obstacles to understanding someone else’s reality.
The future of narrative in the critical medical humanities
Where, then, does all this leave us? Should we leave narrative in our dust, having rinsed it for all it is worth, and chase the fragmented, the comic, and the visual? Should literary critics pack away their tomes for good? Of course not. Narrative still has much to teach us about illness, and it would be foolish to treat it as yesterday’s news. Nevertheless, it’s important to approach narrative whilst bearing in mind its limitations, and always keep an eye out for what lies over the narrative horizon. If we all start to broaden our critical purviews and draw more types of creative output into the smorgasbord that is the critical medical humanities, then the field might just take some radical and necessary new directions.
Akbar, Arifa. 2021. Consumed. London: Sceptre.
Frank, Arthur. 2010. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: Chicago University Press.
Jurecic, Ann. 2012. Illness as Narrative. Pitsburgh: University of Pittsburgh Press.
Kleinman, Arthur. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
Overboe, James. 2007. ‘Ableist Limits on Self-narration: The Concept of Post-personhood’, In Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma, edited by Valerie, Raoul, 275-82. Waterloo, Ont.: Wilfrid Laurier University Press.
Wasson, Sara. 2017. ‘Translating Chronic Pain: Creative Manifesto’. Accessed August 24, 2022. http://wp.lancs.ac.uk/translatingpain/creative-manifesto/
Woods, Angela. 2011. ‘The Limits of Narrative: Provocations for the Medical Humanities’. In Medical Humanities 37: 73-78.
Woods, Angela. 2014. ‘Beyond the Wounded Storyteller: Rethinking Narrativity, Illness and Embodied Self-Experience’. In Health, Illness and Disease: Philosophical Essays, edited by Havi Carel and Rachel Cooper, 113-28. London: Taylor & Francis Group.
About the author
Tom Hey is an AHRC-funded PhD student at Lancaster University, researching representations of eating disorders in contemporary literature through the lenses of the medical humanities, postcolonial theories, and affect theories. He graduated from the University of St Andrews with a Bachelor’s degree in English in 2019, before completing a Master’s degree at Lancaster University in 2020. He can be found on Twitter @Tom_Hey_ or contacted via email at email@example.com.