I have been living with a chronic illness for a few years now. It’s been such a bizarre experience to feel as if my body is fighting itself. It has been so difficult to find the words to describe what it feels like to live in my body, and I have often felt isolated, confused, and tired of fighting for good medical care.
What has helped me so much throughout this experience has been finding community with others who are also going through similar experiences and finding the language to describe the type of pain I experience and access I need. I’ve felt so validated through the shared experiences of others, and I’m so grateful for that. Here are a few of my favorite books by chronically ill and disabled people.
Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong [Buy on Bookshop]
What I truly love about this collection is that the essays are from a wide range of people. There is diversity of ethnicity, sexual orientation, gender expression, and of course disability throughout this collection. So it gives a wide picture of what disability can look and feel like. My personal favorite essay is “Tired of Looking for a Cure,” because it was one of the most relatable to me, as someone who’s felt burnt out while trying to get adequate healthcare.
These essays are each unique and each share personal accounts of life with a disability. This book is great for getting multiple perspectives on varying types of disabilities. It’s a great example of how diverse the disability community truly is.
What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller [Buy on Bookshop]
In this memoir, Tessa Miller shares about what it’s been like to live with Crohn’s disease and all the ways her life had to change as her symptoms began. She shares what she wishes she knew prior to getting sick forever and what she’s learned in the last decade or so of being chronically ill, sharing tips about advocating for proper healthcare, tracking symptoms, and finding good, attentive doctors.
She talks about the medical trauma that comes from not being believed or taken seriously when seeking treatment and how vulnerable it can be to live with a chronic illness. Reading about how she navigated her own relationships, work, and healthcare gave me hope for my own life and helped me feel seen and understood. Seeing the ways in which Miller was able to thrive while living a chronically ill body helped me understand what I could justifiably expect of myself and how I could learn to talk to others about my own chronic illness.
The Lady’s Handbook for Her Mysterious Illness: A Memoir by Sarah Ramey
My favorite thing about this book is that it’s about someone dealing with the diagnostic process and seeking treatment during that time. For a large portion of the book’s timeline, she doesn’t know what’s wrong with her and therefore doesn’t know how to treat the cause behind her symptoms. Like many people who are chronically ill, though, she’s willing to give a variety of options a shot, with varying levels of success. She even has suggestions about lifestyle changes and medical care that people who are chronically ill should seek out, although there is quite a bit to that end that I don’t necessarily agree with.
The author is pretty privileged and is able to afford all kinds of treatment without much problem. She’s also able to relocate in order to see a renowned acupuncturist.Most people with chronic illnesses don’t have that ability. Despite that privilege, she still deals with doctors who assume her problems are psychiatric or doctors who don’t take her seriously enough. This further shows how much improvement could be made to our healthcare system.
While I didn’t agree with all the author’s thoughts on healthcare and lifestyle changes, this book found me during a time when I hadn’t yet heard of many other accounts of people struggling to simply be diagnosed or find pain relief. It was exactly what I needed when I read it.
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha [Buy on Bookshop]
This book gave me so much hope and made me feel so seen and valued. The author shares her experiences in disability justice spaces and what it’s like not only to be disabled but also have other marginalized identities as well. I think of all the books I’ve read, this one made me feel the most hopeful. It made me hopeful not for a cure but for the possibility of community and accessible spaces. It made me feel grateful for all the people who paved the way to create disabled art, disabled spaces, and who fought for disability rights.
Reading a book by a disabled femme of color also felt that much more valuable to me. There were terms and experiences that the author described that helped me further understand and explain the experiences I’ve been living with over the past few years. I felt less lonely just reading this book.
Overall, I definitely wish there were a lot more books by chronically ill and disabled people, but I’m so grateful for all the books I’ve been able to enjoy so far and the ones that I will read over the coming years.