Essential books about chronic illness by women

Louise Kenward on books about chronic illness that go beyond diagnostic criteria and paternalistic attitudes
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A pile of books about chronic illness by women

Words are important, the language of illness particularly so. In a world of sickness, the most familiar words are found in diagnostic categories and self-help books. They are framed in very particular ways, with particular biases, and often largely by men. 

As an antidote to this, I’ve been collecting literature written by women about their own experiences of illness and disability. I’ve also been working on a project with Boudicca Press – a new anthology of women and non-binary people’s writing about misbehaving bodies called Disturbing The Body. Our open submissions call brought an overwhelming response and we’re very excited about bringing this collection of ground-breaking speculative memoir to you in October this year. You can pre-order your copy of Disturbing The Body on Kickstarter.

Meanwhile, here are my favourite books about illness by women. These beautifully written books – all first person accounts – take me into a shared sense of unknowing about chronic illness. They breach walls of diagnostic criteria and hospital appointments and take me into a world I can connect to with greater depth. They also show a person as an entire being, not one simply made up of body parts and sickness.

Books About Chronic Illness By Women: The cover of Sound Of A Wild Snail Eating by Elisabeth Tova Bailey

1. Elisabeth Tova Bailey – The Sound of a Wild Snail Eating (Green Books, 2010)

Profound chronic fatigue is a very particular experience that is difficult to articulate. It becomes a list of the things you cannot do. Bailey expertly conveys what it’s like to experience that level of fatigue – something I am very familiar with – while telling the reader of the new awareness she developed as her life shrank to the size of a terrarium. She became an expert on wild snails precisely because her pace of life matched theirs. This beautiful book follows a year while bedbound.

 

Book About Chronic Illness By Women: The Undying by Anne Boyer

2. Anne Boyer – The Undying: A meditation on modern illness (Allen Lane, 2019)

This is my current read. Boyer is a poet and essayist. This comes through strongly as The Undying is written with beauty and clarity, charting her experience of breast cancer and all that goes with it. She broadens the perspective of illness and pulls at the threads of personal blame we are often taught to hold when illness strikes.

 

Writing About Chronic Illness By women: Pain Woman Takes Your Keys

3. Sonya Huber – Pain Woman Takes Your Keys (and other essays from a nervous system) (University of Nebraska Press, 2017)

Pain is another common experience for people with chronic illness. It is also hard to put words to it. The usual medical scale you are asked to rate it on – one to ten – does nothing to translate the experience. Sonya Huber’s Pain Woman Takes Your Keys (and other essays from a nervous system) is a collection of writing that deftly plays with metaphor around the pain experience. Written on the worst of Huber’s flare days, living with arthritis, she finds ways of coping with the pain by looking for different methods to describe it as creatively as possible.

 

The cover of 'Sanatorium' by Abi Palmer

4. Abi Palmer – Sanatorium (Penned in the Margins, 2020)

The most recent addition to my books about chronic illness that I loved is Abi Palmer’s Sanatorium. It’s an account of a month spent in a Budapest sanatorium in search of pain relief through watery immersion and physical rehabilitation. Palmer lives with Ehlers Danlos Syndrome and this is the first personal account I have found by someone with a connective tissue disorder. It is a very sensory and at times surreal entry into Palmer’s experience of pain and out of body experiences. You can read my full review of Sanatorium here.

 

Books by women about chronic illness: Constellations

5. Sinéad Gleeson – Constellations (Picador, 2019)

This was my book of the year last year. A collection of essays, Gleeson weaves personal experience through a contemplation of the political nature of women’s bodies. Chapters on blood, hair, bones and pain shed new light through the work of art and literature, reframing perspectives on the body and its component parts.

 

Books by women about chronic illness: Two Kinds Of Decay

6. Sarah Manguso – The Two Kinds of Decay (Granta, 2008)

Sarah Manguso also writes with depth and poetry. The Two Kinds of Decay is an account of her rare illness, necessitating frequent hospital admissions and puzzled doctors. Her voice is clear and her insights sharp. This book was shortlisted for the Wellcome Trust Book Prize 2011.

 

Writing by women about chronic illness: Giving Up The Ghost

7. Hilary Mantel – Giving up the Ghost (Fourth Estate, 2003)

Giving up the Ghost, Hilary Mantel’s memoir, is a wonderfully written work that pays particular attention to the workings and failings of her body and how it has been treated. It is an astute and searing commentary on recent decades which have seen the development of the politics and medical malpractice of regarding physical illness as psychiatric. Medicated for psychosis, Mantel lives with endometriosis.

 

Writing by women about illness: Cancer Journals

8. Audre Lorde – Cancer Journals (Aunt Lute Books, 1980)

There is a lot of writing that looks particularly at the experience of cancer. Audre Lorde does this with her usual experience and passion, through confrontation and challenge. It is a look at society as much as the individual as she tracks her treatment for breast cancer and its effects.

 

Women's writing about chronic illness: Illness As Metaphor

9. Susan Sontag – Illness as Metaphor (Penguin, 1977)

This timeless book started my collection of books about chronic illness. The focus of Illness as Metaphor is how metaphor and word selection is used in describing illness and the people who live with illness. It discusses this with particular attention to AIDS and cancer. It is a powerful reminder of the impact language that references responsibility and weakness has on blame, shame and isolation for patients. Sontag is perhaps most frequently quoted for the opening section:

Illness is the night-side of life, a more onerous citizenship. 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.

 

On being ill by Woolf

10. Virginia Woolf – ‘On Being Ill’ in Selected Essays (Oxford University Press, 2008)

And finally, I can’t have a list of writing on illness from women without Virginia Woolf. Written in 1926, this essay remains relevant and speaks to the universality of illness. While the essay was criticised by some for saying that no one writes about illness, when there were in fact others doing so, Woolf does show how our perception shifts when illness hits:

the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out

On Being Ill is available online to read as well.

Next in line for me is Jenn Ashworth’s book, Notes Made While Falling. It’s due for delivery any day now and I’m very much looking forward to reading it. I’ve been keeping a thread on Twitter of books about chronic illness, so I’ll update as I read.

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