10 inspiring self-help books about illness and disability
Books to help cope with an ableist world
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If you live with a chronic illness or disability, chances are there are times you simply can’t find the words to adequately describe your experience. We live in an ableist society—one that champions healthy people as the standard of living. We chronically ill folk often fall through the cracks of what is considered “normal.”
My favorite way to find solace in my condition is by speaking with people who understand that we may never get better. Throughout the COVID-19 pandemic, I retreated to books written by authors with similar experiences to my own. When reading, the author’s disability does not matter to me. What matters is the shared experience of feeling thrown into an ableist world and being expected to cope with the hardships that entails. Some of my favorite reads on the sick experience are below. In them, I hope you find comfort, anger, camaraderie, and whatever else you need to navigate your life through the eyes of an ill or disabled person.
These books are also great to recommend to the people in your life who just don’t get it. In no particular order… your future reading.
1. Sick: A Memoir by Porochista Khakpour
Sick, a memoir about late-stage Lyme disease, brings to the forefront feelings of frustration regarding diagnosis. Porochista Khakpour outlines the struggles she’s faced in finding comfort, a fitting name for her condition, and pain reduction after becoming addicted to the very medication she was prescribed for treatment.
2. The Collected Schizophrenias: Essays by Esmé Weijun Wang
The Collected Schizophrenias may be one of the best modern representations of where mental and physical illness meet. Battling a handful of diagnoses, including schizophrenia, Lyme disease, and PTSD, Esmé Weijun Wang lays out her inner dialogue regarding health and the many misconceptions surrounding diagnosis.
3. What Doesn’t Kill You: A Life with Chronic Illness—Lessons from a Body in Revolt by Tessa Miller
In my experience, there’s a significant lack of reading material about being diagnosed at an early age. What Doesn’t Kill You is an inspiring exception to the rule. Tessa Miller beautifully describes the 20-something experience of being diagnosed with an incurable illness and coming to terms with the many years still left to battle her condition. After a bout of sickness, Miller’s life changed forever when she was diagnosed with Chron’s disease. In sharing her journey, she questions why we treat illness as such a taboo subject while statistics surrounding adults with chronic illness and disability continue to rise.
4. In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards
In the Kingdom of the Sick shines a light on a key question many online-savvy, chronically-ill folk may grapple with: How much info is too much to share? As diagnoses continue to grow in America, advocates find themselves on many platforms (from the news to social media). Illness is something that can strike anyone at any time, so why do we hide it? Laurie Edwards explores how we should continue the chronically ill conversation in order to better educate everyone, including those who may someday join our numbers.
5. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties by Laurie Edwards
Edwards has another important book about adjusting to an incurable illness at an early age. Many readers may relate to aging out of their current social group based on their health limitations. Finding friends who understand and accommodate, bosses who allow time off for doctor’s visits, and loved ones to help create a fruitful routine through pain, limitation, and illness may feel impossible. In Life Disrupted, Edwards helps readers achieve this difficult balance.
6. Disability Visibility: First-Person Stories from the Twenty-first Century edited by Alice Wong
Edited by Alice Wong, this collection of essays is a perfect way to gain an understanding of different types of experiences you may know less about. Disability Visibility allows individual writers to share their experiences with disease and disability—as well as how it impacts their day-to-day life. If you’re not big on reading, these essays will feel approachable and easy to digest based on their brevity and constant change in subject matter.
7. On Being Ill by Virginia Woolf
If a whole book isn’t your speed, this essay published in 1930 by Virginia Woolf crafts the topic of illness into some of the most important words you may ever read. On Being Ill questions why, if we all fall ill at some point in our lives, there is such a stigma around the subject. Nearly a hundred years removed from its initial publication, it’s frustrating to feel a sense of relatability to the idea that sickness is still repressed and judged as a kind of sin.
8. How to Be Sick by Toni Bernhard
If you’re searching for a way to accept your illness and move forward mindfully, look no further than How to Be Sick. Toni Bernhard outlines a Buddhist approach to accepting any diagnosis. The book doesn’t focus on just one type of illness, so it’s relatable to readers who have a chronic diagnosis or simply something new and daunting that they’re experiencing. How to be Sick isn’t about avoiding your illness or practicing mindfulness to forget it, it’s about finding a center of stability inside your illness and inviting it into different parts of your being.
9. Girl In The Dark by Anna Lyndsey
If there’s one book on this list that emphasizes how quickly one’s life can change, it’s Girl in the Dark. Anna Lyndsey started developing a full-body sensitivity to light. Over time, it became so intense that she was forced to retreat into complete darkness—where she opted to chronicle her journey. Lyndsey’s experience is unique, but it speaks to being forced to adjust to unwelcome symptoms, even when everything else in your life seems to be going right.
10. The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke
Centered around autoimmune diseases and invisible illnesses, Meghan O’Rourke uses The Invisible Kingdom to metaphorically scream from the mountaintops. While its title may suggest otherwise, O’Rourke peels a veil off of one of America’s most hushed subjects: people who look perfectly healthy but live their lives entirely sick. In questioning why it’s so difficult to get answers and necessary support, O’Rourke spotlights minority populations, including people of color and women, who also find themselves in another minority group: the chronically ill.
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