The story of medicine is commonly framed as a steady accumulation of life-prolonging discoveries, inventions and practices. But seen through another lens, it is a story of competition for the title of “expert” in matters of healing – a tug-of-war over whose knowledge is valuable, who should make decisions, who achieves better results, who deserves resources. Was it the āšipu (“sorcerer”) or asu (“physician”) in ancient Mesopotamia? The mother, the midwife or the physician during modern childbirth?
Neurologist Oliver Sacks was often credited with creating the template for the modern medical memoir in the 1970s. More recently it has been enriched by the likes of Atul Gawande, Gavin Francis, and Gabriel Weston, gifted physicians and writers who use patient case studies as a springboard to explore illness, the science behind it, and the existential dilemmas it gives rise to. The science in these books is not incidental; it thrusts pathology into the pages as a central character, variously demanding the physician’s and patient’s understanding, negotiation, appeasement and reconciliation.
But as any of today’s doctor-authors would acknowledge, practitioners are not the only experts in the stories they live and tell: Patients (which is to say everyone, at some point) possess knowledge of their unique identities, bodies and lives that is crucial to the processes and stories of healing, and voices that may be more broadly relatable. Now they’re forging a new type of medical memoir, in which they, too, examine the science underpinning their conditions, while contextualising it with lived experience, and expressing it with a fresh creative vision. Comprising both patient and practitioner stories, the expanded genre illuminates more of the innumerable, interconnected factors driving human health, and increases the possibility of empathy for all who strive to influence them.
In 2006, my hand was partially amputated in an explosion in my Brooklyn apartment. In my book Beautiful Trauma, I write about that experience, as well as the science behind it – from the development of modern reconstructive surgery over thousands of years of war, to the psychology of resilience and how neuroplasticity enabled me to regain use of my “replanted” hand. I chose to include the science because studying it during recovery had given me a crucial sense of purpose and progress, and I wanted readers to experience the same joy of discovery in learning it that I did. I also wanted the challenge of expressing the science in the way that only I, the owner of the traumatised body in my book, could. And I hoped to chip away at the gap in understanding that exists between the caring and the cared-for, so that whichever side we’re on at a given moment, we can do better.
Here are 10 books written by patients who, for their own unique and fascinating reasons, also chose to incorporate the science underlying their experiences of illness:
1. Brain on Fire: My Month of Madness by Susannah Cahalan
Twenty-four-year-old journalist Cahalan’s ordeal begins with uncharacteristic forgetfulness, paranoia and mood swings. Soon she’s hospitalised, lost to violent seizures, hallucinations and blackouts while her loved ones pursue diagnosis. Following life-saving treatment for a rare form of encephalitis, she turns her investigative eye to the episode, searching for the events and medical facts comprising her missing month of life, and answers about how one’s identity can be lost, and found.
2. The Noonday Demon: An Atlas of Depression by Andrew Solomon
Solomon had not yet embarked on a PhD in psychology when he wrote this sweeping exploration of clinical depression. His rigorous insights into the biological, medical, cultural and political factors that shape people’s experience of the disease would stand on its own. But it’s the searing anecdotes from Solomon’s own experience with it, and that of many others he interviewed, that provide both a visceral understanding of its human toll, and cause for compassion and hope.
3. The Pain Chronicles by Melanie Thernstrom
Striving to find relief from, and meaning in, her chronic pain, journalist Thernstrom examines the phenomenon in terms of science, the humanities and religion. Her findings of “Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing and the Science of Suffering”, interspersed with expert interviews and personal journal entries, underscore the difficulty of treating chronic pain, due to the subjectivity of the experience, and its often mysterious causes.
4. The Invisible Kingdom: Reimagining Chronic Illness by Megan O’Rourke
O’Rourke recounts her slow descent from health into chronic disease, and her quest for answers and relief from a siloed, often-dismissive American healthcare system. Investigating her diagnoses, she learns that chronic disease can arise from complex interactions between infections, environmental stressors and our unique genes and immune systems; and she reflects on the loneliness of living with profound illness that others cannot see.
5. Heartbreak: A Personal and Scientific Journey by Florence Williams
Williams doesn’t believe it’s a coincidence when she begins experiencing serious health issues, including Type 1 diabetes after the unexpected breakup of her 25-year marriage. So she plunges into the neuroscience of heartbreak, in search of strategies for rebuilding her life and health. Through expert interviews, conversations with friends, and reflections on her experience, Williams articulates how the brain and body register loneliness, possibly contributing to ill health; and how connection, purpose, and nature can heal.
6. The Collected Schizophrenias by Esmé Weijun Wang
With keen insight and devastating clarity, Esmé Weijun Wang describes the delusions, hallucinations and panic attacks that characterise her experience of schizoaffective disorder; the disease’s influence on her identity and ambitions; and the medical establishment’s struggles to define, diagnose and treat the different kinds of schizophrenia. Eschewing a comfortingly false recovery arc, she instead meditates on what it means to live with our limitations, not despite them.
7. The Tiger and the Cage: A Memoir of a Body in Crisis by Emma Bolden
Bolden’s debilitating physical pain began with menstruation and persisted beyond her hysterectomy – which was supposed to relieve it. Interweaving vivid glimpses of her life from puberty to present day with medical-history vignettes, she examines the nature of her aggressive endometriosis, the dire side effects of prescribed treatments, and the roots of institutional misogyny in western medicine that still hamper diagnosis and treatment today.
8. What My Bones Know: A Memoir of Healing from Complex Trauma by Stephanie Foo
Foo thought she’d left her childhood of abuse, neglect and abandonment behind, until she was diagnosed with complex PTSD ageed 30. The diagnosis explained why she lived gripped by panic, self-loathing and dread, but suggested no path to recovery. So Foo embarks on a journey to understand the scientific and autobiographical roots of her suffering, and find treatments from the clinical to the spiritual to assuage it.
9. My Age of Anxiety: Fear, Hope, Dread and the Search for Peace of Mind by Scott Stossel
When Stossel isn’t suffering paralysing anxiety attacks, he’s consumed by worry that often finds expression in physical symptoms, or grappling with myriad phobias. Mining his lifelong experience, and disciplines from literature and philosophy to neuropsychiatry and sports, he offers a rigorous and moving exploration of how anxiety has been felt, described, perceived and treated over the ages; and how those who live with the condition manage it.
10. Account from Paris of a Terrible Operation by Francis Burney
In 1812, English novelist Francis “Fanny” Burney underwent a mastectomy without anaesthesia. In this 12-page letter to her sister, she delivers a succinct yet thorough memoir of the harrowing experience, from diagnosis and treatment decision; to a cut-by-cut description of the surgery; pain so excruciating that she twice lost consciousness; and the psychological distress she, her husband and her surgeons experienced as a result. While unlike the other authors on this list, she does not examine the scientific theories of her time, she similarly provides a valuable snapshot of its medical attitudes, practices and impact.
• Beautiful Trauma by Rebecca Fogg is published by Granta. To help the Guardian and Observer, order your copy from guardianbookshop.com.
