What do you read when you're sick?




I sometimes still joke that Gerald Durrell’s My Family and other Animals saved my life.


In 2013 — a year in which I bounced in and out of psychiatric care multiple times, including a stint of intensive electro-convulsive therapy — the task of reading, usually a pleasure, had become something of a chore.


When a family friend lent me a Coles green bag stuffed to the seams with self-help books, I vaguely remember sorting through the titles and reading some of the blurbs, only to slot them back into the bag unread, despite their optimistic promises of revelation and relief.


Instead, I passed the time by binge-watching Breaking Bad on my laptop and attempting to perfect fiddly recipes such as traditional Victoria sponge cake. Sometimes I’d bomb myself out on Seroquel and spend half the day on the couch, staring at the ceiling and listlessly stroking whichever cat or dog had decided to keep me company.


‘I was heartbroken once,’ my mother explained one day, ‘and my grandma lent me a copy of Soothing Syrup, which ended up being just the right medicine.’


Feverish in her pursuit to keep me afloat in any way she could, Mum went riffling through her bookcase to find me something fun to read.


On some of the bleakest nights, I’d crawl into her bed and read a few pages by the light of one of those clip-on lamps, fastened to the headboard.


In My Family and other Animals, the first book in an autobiographical trilogy, Durrell shares stories from the years he spent on the Greek island of Corfu with his siblings and widowed mother. A budding zoologist, he describes (in often hilarious detail) the escapades of his unusual family and the fascinating species he encounters in the island’s lush natural environment.


Although his older brother Lawrence (‘Larry’) Durrell went on to achieve greater success as a writer, Gerald is inimitably adorable in this well-loved classic: the pages of my mother’s yellowed copy seemed to thrum with the Corfu sun, and each ridiculous anecdote, rendered with so much wit and affection, pulled me out of myself for just long enough to experience some healthy distraction and release.


However, this experience left me with a pesky question I couldn’t stop pondering: What should we read when we’re sick? Why was it, I wondered, that a book specifically designed to help me felt so characteristically unreadable, while a book intended primarily to entertain was ultimately so therapeutic?


The years I spent researching this topic sent me in myriad unexpected directions, but I did eventually find some answers — or at least discover some patterns among the experiences of other readers grappling with acute or ongoing illness.


For one, it’s perfectly natural and even typical that reading becomes difficult during episodes of either physical or mental illness (though I make no distinction between the two). From simple decoding to assimilating information and narratives, reading is a demanding exercise that requires motivation, concentration, and energy.


This is partly why informational and instructional reading can be such a hard slog when you're not feeling your best. Knowledge can indeed be power when you’re struggling with infirmity and/or disability, so if you’re reading to learn or develop some coping strategies, you might benefit from limiting your reading to shorter bursts and more achievable goals: a couple of pages, for example, or one brief chapter. But you might also find that this kind of reading simply needs to wait. The readers I interviewed as part of my project often described how they had to postpone their reading until they were physically able to try again — and were in the right frame of mind to engage actively with texts and take their messages and advice with a grain of salt.


Perhaps more interesting to me was the reality that many of the readers I spoke to had eventually abandoned self-help reading — in part or altogether — to focus on fiction and memoir. Other people’s stories, they maintained, reinforced the validity of their own experiences and offered sometimes surprising forms of inspiration and guidance. Rather than seeing illness as a problem to be solved or eliminated, they were able to approach it instead with a sense of curiosity and acceptance.


When people ask me for book recommendations, I usually suggest reaching for something entertaining or compelling, a book in which you can lose yourself — or something so interesting and enjoyable that the act of reading itself doesn’t feel onerous or discouraging. It doesn’t matter whether it’s a poem or a crime thriller; if reading is gratifying, it’s often a welcome diversion from pain and lethargy.

Beyond that, however, texts that approach illness in a more nuanced way, refracted through lived experience, can soothe, inform, and inspire just as — if not more — readily than texts with an explicitly therapeutic function; in fact, there’s a branch of research and treatment devoted to exactly this phenomenon: bibliotherapy. If we read to know we're not alone, as C. S. Lewis once said, then texts of all kinds can forge the kinds of meaningful connections that bring hope, consolation, and escapism on even the darkest days.


Can I recommend some specific titles?


Well, yes, sort of, but with one big caveat: every reader is different, and what I find helpful may vary dramatically from what another reader might enjoy and endorse.


That being said, a book I would recommend without hesitation to any reader experiencing depression or anxiety is Matt Haig’s Reasons to Stay Alive, which is composed of easily digestible mini-chapters that explore his own experiences of mental illness, including episodes of suicidal ideation, as well as various reminders and approaches that have helped him along the way. (He has since gone on to publish two other books in a similar self-help-slash-memoir format: Notes on a Nervous Planet and The Comfort Book.) What I like most about Reasons to Stay Alive is the way in which Haig normalises prolonged experiences of mental illness: rather than claiming he’s made a full recovery, he observes that depression and anxiety are woven into the fabric of his life. They are constant companions, and he has good days and bad days, but life is nonetheless worth living, and he’s learnt to hold his pain a little more loosely over time.


***


Perhaps it’s no coincidence that I was midway through a women's memoir bender this year when I fell mysteriously ill. I was diagnosed with ankylosing spondylitis and Crohn's disease in my mid-20s, so being unwell is not unfamiliar to me. But the sudden onset of new symptoms — and a barrage of hospitalisations and tests — has presented me with some challenges (physiological, psychological, social, professional, financial) that I doubt I could have endured were it not for the stories that other women writers have so generously and bravely shared.


In The Lady’s Handbook for her Mysterious Illness, American author Sarah Ramey chronicles a significant period in her life in which diagnosis eluded her, despite debilitating signs and symptoms of something very wrong. Originally, I was drawn simply to the technicolour dream cover, but Sarah’s account of interacting with a healthcare system often hostile to the bodies of women and marginalised folk was so poignant (and fizzy with a simmering rage) that I couldn’t put it down.


'There is a secret society of sorts that no one — not even the members — has heard of,' Sarah writes. 'We don’t look alike, we don’t dress alike, and we’re from all over. There is no secret handshake, no meeting place, no cipher. We are the women with mysterious illnesses, and we are everywhere.'


I've read mixed reviews of the book, and as a middle-class-ish white woman, I'm probably not the best person to address some of the ways in which Sarah supposedly fails to acknowledge her relative privilege (she is also a middle-class white woman — highly educated and the daughter of doctors who can afford to pursue testing and medical intervention in the American healthcare system). Much of the book is geared towards unpacking certain aspects of the 'feminine' that generate medical bias and dismissal, though one chapter in particular explores these aspects more philosophically, concluding that the heroine's journey (as opposed to the more familiar and masculinised hero's journey) may hold the key to living more optimistically with chronic illness. I felt this chapter could have been edited down to something more succinct and less repetitive, but I didn't respond as negatively as some readers who felt the premise itself was exclusionary towards gender-diverse readers. (My sense was that Sarah was describing some of the ways in which typically 'feminine' traits and behaviours, no matter who's expressing them, tend to attract censure and ridicule, though I thought other readers' impressions were worth flagging; perhaps the book would have been stronger without this considerable diversion.)


Even if some of the content didn't sit well with me (i.e. offering restrictive dietary advice), I'm glad I persevered with this book and read to the last page, if only to revel in some kind of resolution. After many years and repeated instances of medical apathy and trauma, Sarah eventually makes sense of her cryptic symptom profile — but it's a long and arduous journey to get there. If you're a WOMI (Woman of Mysterious Illness), you might also find this book an engaging and courage-bolstering read.


In Hysteria: A Memoir of Illness, Strength and Women's Stories throughout History, South Australian writer Katerina Bryant likewise addresses women's experiences of diagnosis and medical treatment by blending memoir with historical analysis.


The book opens with Katerina wandering the supermarket in a daze of depersonalisation — an unsettling account that introduces the psychogenic non-epileptic seizures (PNES) Katerina suddenly begins to experience in her early 20s, what she describes as a 'modern incarnation of hysteria'.


A functional neurological condition, PNES occupies a puzzling position where psychiatry and neurology overlap, and Katerina's engagements with medical practitioners reflect this ambiguity. Interwoven with her own observations about chronic illness and clinical interventions are stories of various women pulled from historical archives, such as the ‘Queen of Hysterics’ Blanche Wittmann. The resulting work is a tapestry of rich narratives and startling questions about the mind–body connection and the limits of a medical model that continues to characterise women's illness as imagined, exaggerated, or inexplicable.


Kylie Maslen takes a similarly kaleidoscopic perspective in her recent memoir, Show Me Where It Hurts: Living with Invisible Illness. Structured as a series of interrelated essays, the book provides incisive commentary on, and insight into, the reality of suffering in ways that are not immediately obvious to the people around us. Having borne more than 20 years of chronic pain and illness, Kylie is attuned to the tedium of getting by in a world that typically fails to accommodate — or even notice — the plight of the chronically sick.


One chapter, for example, catalogues the complex problems that chronically ill women face as they age, especially when living and medical expenses, coupled with reduced capacity to work, undermine long-term security and quality of life. Another chapter details Kylie's history of alcoholism as a means of coping with unrelenting pain. 'I didn't see my drinking as important,' she explains. 'I saw it as necessary.'


But Show Me Where It Hurts also offers generous glimpses of hope and humour. The first chapter, titled 'I'm Trying to Tell You I'm Not Okay', describes some of the flaws associated with standardised pain assessments while also considering the potential of memes and other visual representations to fill gaps in communicating the severity of our symptoms; in 'Scar Tissue', Kylie talks about the way in which tattoos have helped her reclaim a sense of ownership over a body that's been scarred by a host of other procedures and intrusions.


Suffering from a chronic pain condition myself, I suspect that many other readers will easily identify with some of the frustrations Kylie shares: craving validation from doctors who are preoccupied only with lab results rather than what patients themselves know and describe, rationing medications when prescriptions are only begrudgingly given, finding solace in cosily repetitive activities such as re-watching your favourite TV shows. (Nigella Bites, I'm looking at you.)


But what I feel this book does best is demonstrate that experiences of pain and illness, no matter how pervasive, ultimately remain highly personal — that every individual who endures suffering does so in sometimes unpredictable ways, and on their own terms. Show Me Where It Hurts reminds us that true empathy is not about saying 'I know how you feel', but in acknowledging that we cannot always access or understand another's pain. We need to make space for these idiosyncratic experiences and develop new languages through which to communicate with one another.


'It is not my body that is at fault,' Kylie insists, 'but society’s failure to deal with bodies like mine. I might be in pain, but I am whole. I refuse to have the difficult parts cropped out.'


I've taken a little break from memoir-reading at the moment (I just finished Emily Maguire's latest novel, Love Objects), but I'm keen to dip into some more non-fiction as I continue to navigate this fully sick year.


What do you read when you're sick?


Please let me know if you can recommend any specific titles.


*If you're interested in finding out more about Katerina's and Kylie's books, this review, penned by the wonderful Jessica White, offers a much more comprehensive summary of their themes and accomplishments.


0 comments