How Memoir Writers are Reframing Illness

In The Undying: A Meditation on Modern Illness, Anne Boyer tells the story of living with breast cancer in the twenty-first century United States; but as the lengthy subheading (Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care) suggests, the book is as much about the specifics of breast cancer as about widening the experience to help us understand the many layers of living with illness. More commonly recognised as a poet, Boyer writes The Undying in succinct prose paragraphs, positioning herself and her cancer at the intersection of the wider cultural politics of breast cancer—a highly resonant, popularly understood and gendered disease.

In many ways, Boyer uses herself as a research device, interrogating the challenges and inequities faced as a single, working mother without traditional or state-recognised family structures to draw on for support during her treatment. She utilises her position and experience to critique the current narrow ideologies around care, and how this is reflected through policy. When told she must have a family member with her at an appointment in order to receive a diagnosis, she asks a friend who can only afford to take her lunch break off from work to join her. Departing from the anecdote, Boyer writes:

If you are loved outside the enclosure of family, the law doesn’t care how deeply—even with all the unofficialised love in the world enfolding you, if you need to be cared for by others, it must be in stolen slivers of time.

Using this moment as a springboard for a critique of US leave policies, Boyer describes how if you are not bound to someone as a parent, child or spouse, ‘no one else is guaranteed leave from work to take care of you’.

Demands to have care understood as a matter of collectivity are written about by many illness and disability writers. In Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha writes:

What does it mean to shift our ideas of access and care (whether it’s disability, childcare, economic access, or many more) from an individual chore, an unfortunate cost of having an unfortunate body, to a collective responsibility that’s maybe even deeply joyful?

The automatic assumption that caring for someone else is only ever stressful and tiresome is reductive: Firstly, it fails to value the skills and strength of care work, but also denies the possibility of caring being a mutually beneficial relationship. Illness writing can be a space for us to shift how we view care, and what kind of demands we make around access to it.

Boyer draws on the assistance she needs during her cancer treatment, writing ‘once treatment begins, my erotic longing is for assistive devices: a wheelchair and someone to push it, a bedpan and someone to empty it’. If traditional illness memoir often exists around the isolated individual on their quest to recovery, oriented towards seeing material results that signify cure, Boyer’s work instead works towards foregrounding and normalising the interdependency of our lives and the indefinite temporality of illness.

In her debut book Hysteria, the story of Katerina Bryant’s chronic seizures cannot be separated from the stories of the women who came before her. Her book therefore appears as part memoir, part historical account—making it reflective of a wider time capsule, contributing to a greater archive.

At their best, narratives such as these focus not on an individual’s experience but a more wide-reaching account of illness as an ongoing, collective matter.

Through this narrative inquiry, the book jumps between her personal experience of illness and the history of women who have lived before her with similar diagnoses, ranging from Katharina, a case study of Sigmund Freud, to Mary, a teenager in the 1600s who believed her symptoms were brought upon her as punishment for sinning. Narratives like Bryant’s perform cultural and collective significance, rather than just highlighting an individual story. They remind us that Bryant’s experiences do not begin and end with an individual experience, but are part of a long history of women not taken seriously by the medical establishment, often receiving inadequate care as a result.

These wide-ranging perspectives of illness argue for greater social understanding of how illness effects people and communities. But while these texts certainly differ from more traditional illness memoir in structure and form, it is worth noting that the vast majority are written by white women, from what we might assume are relatively similar backgrounds, highlighting the stark reality of who gets to occupy space in the realms of illness memoir, and memoir more broadly. As David B. Morris writes: ‘What literature has to tell us about suffering, in short, depends on basic decisions about what counts as literature and whose suffering matters’. As illness writing continues to boom, there are certain voices that are still not being heard.

But at their best, narratives such as these focus not on an individual’s experience but a more wide-reaching account of illness as an ongoing, collective matter. In this way illness texts are made to have an objective eventfulness for wider society, not just the ‘patient’. With more wide-ranging accounts of illness we may be able to develop and maintain stronger and longer-term care practices that don’t begin and end within the confines of diagnosis and treatment. If we understand illness as ongoing rather than linear, with ups and downs, often without a clear diagnosis and cure to mark time we can establish support that reflects that, for both patients and carers.

*

In her essay collection Show Me Where It Hurts: Living with Invisible Illness, Kylie Maslen devotes a section to what social media offers communities of those with lived experiences of illness. She writes of its importance: ‘Peer support through social media offers a source of experiential knowledge about illness. It gives us a way to normalise pain and a life lived with chronic illness’. These spaces are found in Twitter threads sharing advice, Instagram accounts devoted to chronic illness stories, online forums and chat rooms, among other virtual spaces. In many ways, the narratives told through these sites resemble illness memoir on the printed page, but uniquely they allow for voices to constantly interact with one another to create collective discussions. They are important frameworks for community building whereby individuals with shared lived experiences can reach out, listen to each other and validate one another’s stories in a place that in some ways are more removed from the structures and hierarchies of medical and health care systems.

These authors are writing their stories into existence in order to demystify and de-mythicise the experience for those refusing to hear and see them.

Incorporating new forms into the way we write illness may achieve a greater sense of accuracy in describing the experience. A photo of a pained face, a pile of mess and medication next to a bed, or a sink full of dishes unable to be attended to, make for a visceral and complex depiction of how illness might actually be felt for individuals and families on a daily basis. As Maslen suggests: ‘…building an album or stream of images draws a parallel to the time passing in a way that few other modes of expression can capture’. Digital forms of memoir make these collections an achievable possibility.

In many ways, these authors are writing their stories into existence in order to demystify and de-mythicise the experience for those refusing to hear and see them. The books seek to highlight the nuances of living with an illness, relying on episodic forms of writing to depict the often fractured and destabilising experience. They remind us that illnesses have long and deep histories that influence how we understand and respond to them now. While translating the experience of pain through writing may be difficult, the process of trying is significant in itself, opening up avenues for new ways of expression. As Boyer writes:

What is difficult is not impossible. That English lacks an adequate lexicon for all that hurts doesn’t mean it always will, just that the poets and marketplaces that have invented our dictionaries have not—when it comes to suffering—done the necessary work. ​ ​

The statement is a hopeful one, looking towards a place where pain and illness can be understood more wholly, and where individuals experiencing it are not the only ones doing the work to articulate it.

The Undying, Hysteria and Show Me Where It Hurts are available at your local independent bookseller.