The experience of living with chronic pain or chronic illness can be an isolating one. In Canada, approximately one in five people in their lifetime will live with chronic pain (See Canadian Pain Task Force below), and approximately 40-70% of adults live with one or more chronic health conditions (though numbers are a bit harder to quantify). So while it may feel like you are alone, especially in the early days of diagnosis, chronic conditions are actually incredibly common.

That’s not to say that it isn’t difficult to explain the daily experience living with these conditions to someone who has no lived experience themselves, as is often the case with partners or family. And even if they do, every person experiences symptoms in different ways with varying levels of functionality, needs and support. This doesn’t help that feeling of being alone in your experience, and this is why it is often important to immerse yourself in the stories of others that live with chronic pain or illnesses. This can be done by joining support groups, but another great resource to access diverse experiences is simply reading about them!

So if you’re looking to learn more about the experience of chronic pain or illness because you’re newly diagnosed, struggling to navigate the necessary changes to your life, or you have a family member, friend or partner that lives with chronic pain or illness, here are five great books to start with:

Please note that many of these books go into detail about medical experiences, trauma, and sometimes suicidality or self-harm. Please assess your own capacity to take on that information.

Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Cleghorn

It is becoming more apparent the differences in the medical experience of women vs. men. In fact, research is now coming out that shows women are often diagnosed YEARS later than their male counterparts for common chronic diseases such as diabetes and cancers. Unwell Women takes a look at the history of this phenomena and what that means for women in the medical system today. Elinor Cleghorn uses her own experience with autoimmune disease and the stories of many other women with chronic and difficult-to-diagnose conditions to shed light on the various experiences of being dismissed, turned away, ignored or mistreated when seeking help in the medical system. This is a great read for women and gender minorities who have had to fight and advocate for their healthcare needs, who spent years seeking answers before getting a diagnosis, and who were gaslit into believing that everything was just “psychosomatic.” The history presented in this book shows you that you are not alone in your experience or your feelings and that the systems that are supposed to protect and care for you can sometimes be the problem, not you.

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke

For those who experience “invisible illnesses” or “invisible disabilities”Meghan O’Rouke’s part autobiography, part deep-dive into the history and research into hard-to-understand medical conditions may be an important read. The Invisible Kingdom presents a narrative that’s all too common for those living with chronic illness, bouncing between doctors, specialists, testing, just to keep getting sent back to the start with no answers. Meghan shares the vulnerable, difficult and isolating internal experiences that are not often talked about when dealing with a chronic illness and the medical system. A great read for both those living with chronic conditions and their loved ones to gain a better understanding of the lived experience of chronic illness.

Disability Visibility: 17 First-Person Stories for Today Edited by Alice Wong

The literature on disability has improved over the years, but is still lacking, especially when it comes to hearing the lived experiences of those with disabilities. This collection of stories offers great insight into the varied experiences of living with disabilities from grief and loss to joy, adaptability and thriving. The stories shared add depth to the narrative of life with disability as is often told in the media, providing validation and hope.

What Doesn’t Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Miller

Part autobiography, part investigative journalism, Tessa Miller tells her story of living with Inflammatory Bowel Disease (IBD) and the ups, downs, complications and breakthroughs that go along with having a chronic illness in a broken (and expensive) medical system. Tessa’s story is a relatable one for anyone facing any chronic condition not just IBD - the gaslighting, bureaucracy and disregard that patients can face in the quest for diagnosis, proper treatment and relief. Combined with her work as a journalist, this book is complemented by the useful history, resources, and blunt realism that Tessa brings to such a complicated topic. Another great and validating read for those with chronic conditions and their loved ones alike.

Demystifying Disability: What to Know, What to Say, and How to be an Ally by Emily Ladau

An easily accessible read focusing on helping those with disabilities and allies-alike understand and navigate the challenging and complicated world and disability experience. A great introduction to things that we need to think about more as we go through the world to create change that focuses on inclusion for the world’s largest minority population (about 15% of the global population). With topics like how to recognize and avoid ableism and how to think, talk and ask about disability this book is an important read for everyone, and could even serve to be a conversation starter for younger children.

Resources:

Canadian Pain Task Force (2021) https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force/report-2021.html https://www.cmaj.ca/content/193/8/E270

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