Living with chronic illness or chronic pain means a life facing some unique challenges, not least of which is the confusion and isolation that comes with being differently-abled.
There are many different books out there for those seeking companionship, advice, and support through their own health journey, and many are excellent – offering new insights or funny anecdotes – but choosing among them can sometimes be as overwhelming and confusing as the illness itself!
You can’t read all of them, so, after twenty years of managing chronic health conditions and reading everything I can (and working as a writer myself), here are my picks of the best on the market:
Table of Contents
- 1. Living a Healthy Life with Chronic Conditions by Kate Lorig DrPH, Halsted Holman M.D., Diana Laurent MPH, Marian Minor PT Ph.D., Virginia Gonzalez MPH, and David Sobel M.D. MPH
- 2. How to Be Sick by Toni Bernhard
- 3. How to Live Well with Chronic Pain and Illness by Toni Bernhard
- 4. Critical Decisions by Peter A. Ubel, M.D.
- 5. You Are Not Your Pain by Vidyamala Burch and Danny Penman
- 6. The Mindfulness and Acceptance Workbook for Anxiety by John P. Forsyth Ph.D. and Georg H. Eifert Ph.D.
- 7. You Don’t Look Sick by Joy Selak, Ph.D. and Steven S. Overman, M.D.
- 8. Life Disrupted by Laurie Edwards
- 9. When Someone You Love Has A Chronic Illness by Tamara McClintock Greenberg
- 10. Why Does Mommy Hurt? by Elizabeth M. Christy
- 11. I’d Rather Be Working by Gayle Backstrom
This book is an outstanding beginner’s guide to living with a chronic health condition.
Covering a wide range of topics, from general information to medication management, dietary concerns, exercise, mental health management and more, this book will give you the basic tools you need to begin understanding your new normal, and covers all of those major questions your doctor did not have time to cover.
I would recommend this book as a starting point for any newly diagnosed patient who’s confused about what their diagnosis means on a day-to-day basis.
2. How to Be Sick by Toni Bernhard
3. How to Live Well with Chronic Pain and Illness by Toni Bernhard
This best-selling author writes with honesty and positivity about her own journey with chronic illness and shares with readers tools and practical guides on how to manage some of the most distressing effects of chronic illness – those on mental health.
Based on Buddhist philosophy, the books center on compassion and acceptance and are must-reads for those struggling with the issues of self-worth and identity that illness inevitably cause.
Related: Best Buddhist Books for Beginners
4. Critical Decisions by Peter A. Ubel, M.D.
Dr. Ubel is a doctor and behavioral scientist who writes with authority on the issues surrounding the relationship between physician and patient.
While many of the case studies in the book focus on patients with acute ailments, the lessons learned are applicable to all doctor-patient interactions.
Management of a chronic illness requires a series of micro-decisions, and the partnership between patient and doctor is central to ensuring the best decisions are made for each individual’s quality of life – whatever that looks like to them.
This book will help you understand your doctor better, so you can communicate more effectively and work as a team towards your personal health goals.
5. You Are Not Your Pain by Vidyamala Burch and Danny Penman
Readers are guided through an eight-week program of mindfulness, designed to help chronic pain patients alleviate their suffering.
Accompanied by a CD, each mindfulness practice is pretty much idiot-proof, so even novices can learn effective techniques for calming their minds and listening to their bodies.
Studies have shown mindfulness to be as effective as prescription painkillers for some people, so this book is a good beginner’s guide for anyone interested in trying it for themselves.
6. The Mindfulness and Acceptance Workbook for Anxiety by John P. Forsyth Ph.D. and Georg H. Eifert Ph.D.
Not everyone with a chronic illness has anxiety, but statistically, those suffering from a pre-existing condition (and their caregivers) are significantly more likely to develop anxiety, depression or other long term mental health issues.
This book is a great resource for those with anxiety, those worried about disease-induced anxiety, or even just chronic patients looking to improve their own outlook a little.
Based on acceptance and commitment therapy, readers are given simple, repeatable tools to promote calmness and peace of mind in any circumstance.
Working with your mind and body rather than fighting against it increases acceptance and body positivity, and this is a fantastic workbook for those wanting implementable, measurable steps towards taking back control.
7. You Don’t Look Sick by Joy Selak, Ph.D. and Steven S. Overman, M.D.
Centered around the “four phases” of being chronically ill (getting sick, being sick, grief, and acceptance), this collection of short stories depicts real-life situations that many in the chronic illness community will recognize.
It deals with practical, everyday issues, and directs readers to focus on how to build the lives they want with their illness, rather than fighting against it.
It’s also packed with additional resources, recommendations, examples, a bibliography, and all backed up with a solid sense of humor.
This is a great, easy read for those needing to feel they’re not alone in their experience.
8. Life Disrupted by Laurie Edwards
This is one of the best books available that discusses the chronic health journey from the perspective of a young person.
Normal challenges such as college, career and starting a family takes on a new hue when seen through the prism of a rare and serious chronic disease.
The author writes eloquently about her own health and doesn’t shrink from the harder issues those with unpredictable diseases face.
This book is also a spyglass into what patient-empowered medical care looks like, and we can all learn from the author’s determined self-care.
9. When Someone You Love Has A Chronic Illness by Tamara McClintock Greenberg
Caregivers face the brutal reality of living with a chronic illness every day and can suffer from many of the same issues as their loved ones.
Depression, anxiety, frustration, a lack of control and feelings of being overwhelmed are all a part of the caregiver’s journey but are all too often overlooked. This, then, is a fabulous read for anyone in a formal or casual caretaking role.
A clinical psychologist, Dr. Greenberg draws on her wealth of practical experience to deliver thoughtful advice on how to cope with the demands of caregiving and the knock-on psychological effects.
Related: 24 Best Books on Caregiving
There are also some pretty handy checklists to use as reference tools and to help you stay on the right track.
10. Why Does Mommy Hurt? by Elizabeth M. Christy
There isn’t a ton of books out there for kids with a chronically ill parent, so this title fills a pretty big gap in the market.
As every parent and every chronic illness warrior knows, no one in the household is immune to the effects of uncertain health. Children have an especially hard time as they lack the perspective to understand what’s really going on.
This children’s story is told from the viewpoint of a kid learning about his mother’s illness and is funny, sweet and thought-provoking.
It’ll encourage little ones to engage in meaningful, natural conversations about the effect their parent’s health struggles has on them, and it also provides resources for parents.
11. I’d Rather Be Working by Gayle Backstrom
This book is unusual in its focus: it entirely centers on the issues of supporting yourself while struggling with health issues.
The need to work is not solely financial – many people find work gives them meaning, self-worth and a sense of usefulness – but for those unable to work, the financial repercussions are critical.
This guide walks readers through the steps they can take to assess their capabilities, set reasonable goals, and find work that pays the bills and affords them some independence. It also goes in depth on long term disability support issues.
This is an extremely practical read for all those chronic illness patients who haven’t yet won the lottery!
Chronic illness cocoons people with a false sense of isolation, leading many to reinvent the wheel time and again rather than learn from the wealth of knowledge those in similar situations have shared.
Picking up a book to read about another’s journey and learn from their mistakes should be on the top of every chronic illness sufferer’s to-do list!
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