21 Inspiring Books Worth Reading If You Have Chronic Illness
PUBLISHED 11/13/18 BY Charlotte Hilton Andersen
Nearly half of all Americans live with some type of chronic illness, according to the National Health Council. If that stat sounds bigger than you thought it’s probably because one of the worst parts of having an ongoing disease is...
Nearly half of all Americans live with some type of chronic illness, according to the National Health Council. If that stat sounds bigger than you thought it’s probably because one of the worst parts of having an ongoing disease is how isolated it can make you feel. As soon as you get your diagnosis and the reality how your life will change sets in, you may start to feel like your world is shrinking in around you. But there are more people than you know who understand very well just how you are feeling.
Finding support is key to helping you not just survive but thrive after getting a life-changing diagnosis, says Mayra Mendez, PhD, a licensed psychotherapist and program coordinator for mental health services at Providence Saint John’s in Santa Monica, California. “Whether it’s finding a group online, talking to close friends or family members, or reading about it, it’s so important to make connections with others who can sympathize and support you while you process these feelings,” she says. “This will help reduce depression and anxiety and give you hope and if there’s one thing that someone suffering needs the most, it’s hope.”
To help you find that hope and connections, we asked people living with a wide variety of chronic illnesses to share what books inspired, entertained, educated, and otherwise made dealing with life easier.
Toni has struggled for years with a chronic illness herself and has gone through a lot because of it. She’s very honest about her struggles and gives tips for both patients and their caregivers. “I love how she uses Buddhist principles to teach acceptance, being kind to yourself, and mindfulness — all crucial skills when you’re dealing with a life-changing illness,” says Jennifer A., of Gilbert, Arizona. “It really helped change how I saw myself and improved how I treated myself.”
It’s not written specifically for people living with a chronic disease but the tough-love, no-nonsense approach of this book speaks to a lot of the struggles ill people face and helps challenge negative thoughts, says Dennis L., of Columbus, Georgia. “The book came out as I was just in remission and recovering from the effects of six months of chemo. It helped me develop mental strength and resilience in my recovery,” he says. “Rather than drown in self pity, I got into a diet and exercise regimen, lost over 60 pounds, ran a half marathon, became an endurance cyclist, and started training for an ironman.”
Everything happens for a reason is one of those things people say when they have no idea what to say and while it might be comforting to some, other people find that it minimizes their pain. This memoir tells the story of Kate’s end-stage colon cancer and explores how to make sense of frustratingly non-sensical things in your life, like a chronic illness, with humor and care. “I loved this book so much that I bought a copy for everyone in my family, even though none of them are sick,” says Emily A., of Philadelphia, Pennsylvania. “I’ve spent way too much time trying to figure out the cosmic ‘reason’ for my autoimmune disorder, driving myself crazy to find that silver lining, but this book helped me to be like ‘Sometimes things just suck and that’s fine.’”
“I’m going to be honest here, I hate self-help books. I feel like I get preached to enough without reading about how I need to be better about dealing with my chronic illness,” says Abbie S., of Provo, Utah. “When my pain levels hover above the normal 6-7 range, I want something that fills me with joy and nostalgia and makes me completely forget that pain. Usually, that means I reread Harry Potter for the 50th time. I get so wrapped up in Harry’s world that everything else becomes much more manageable. J.K. Rowling honestly talks me down from getting overly worked up about my condition and the dread I feel about spending the rest of my life in pain by transporting me (or apparating, if you will!) out of my own head for a little while. When I finish and get back to my own reality, it doesn’t seem nearly so bad anymore.”
Being a man of God didn’t shield Rabbi Held from chronic disease — he has chronic fatigue syndrome — but it did give him the perspective he needed to deal with it. This book uses commentary on the Torah, literature, and other religious experts to help answer fundamental questions about God, human nature, and what it means to be a religious person in the modern world. “It’s not specifically about illness but it helped put things in perspective for me,” says Janet E., of Brooklyn, New York. “It also helps knowing that he struggles in similar ways that I do.”
Part memoir, part science text, this book details the author’s journey through chronic fatigue syndrome so severe that some days she couldn’t even turn over in bed. At her wit’s end, she moves to the middle of the desert to try an extreme experiment — getting away from everything she’s ever owned — to see if she can fix her health. “I really loved this book because as a scientist myself, I appreciated her analytical thinking, and as a person with a chronic disease, I also appreciated her honesty,” says Anna P., of San Diego, California. “It just gave me hope when I was starting to feel like that was something I’d never have.”
One day Anna was fine; the next she had a severe sensitivity to all forms of light that left her no choice but to live completely in the dark. It’s not a common chronic illness but her feelings will definitely strike a chord with anyone struggling with long-term health issues. “I found this at a really dark time in my life so it really resonated with me,” says Tatiana G., of Anaheim, California. “My favorite part is that it’s just a memoir, it doesn’t turn into a self-help book. I had tons of self-help books; what I needed was someone who really understood my pain and this book did that.”
If reading a book feels too daunting, this long-form essay ublished in The New Yorker may be exactly what you need. The author shares her journey with Hashimoto’s disease, from the first prickly rash to the complicated feelings she still has about her body. “It’s just so beautifully written,” Tatiana says. “It made me feel so much less alone in what I was going through.”
Changing your diet or tweaking your lifestyle to make healthier choices may not cure your chronic illness but a lot of people find that it helps manage them. Dr. Ballantyne shares how she uses the Paleo diet — think lots of meat and veggies but no grains — to help people deal with their autoimmune disorders. “It’s tough at first, especially if you really love bread, but this … was a game changer for me,” says Lesley B., of Brisbane, Australia.
This philosophy/pop psychology book gives you permission to stop trying to please other people and to start living life in an authentic way that makes you happy. “This doesn’t have anything to do, specifically, with my disease, but having a chronic illness means I’m often in situations where I have to do things differently than other people,” Lesley says. “My issues won’t go away ever so I’ll be damned if I sit back and feel sorry for myself!”
Thanks to its six authors, all doctors in different specialties, this book is a comprehensive guide to managing a wide range of chronic diseases. It offers tips, suggestions, and strategies based on research done at Stanford. “I just wanted a practical book, not a huge dramatic thing, to help me figure out what I needed to be doing to manage my multiple sclerosis and this fit the bill exactly,” says Jim F., of Fort Lauderdale, Florida.
This memoir is written by the loving husband of a woman who has intractable depression and psychotic breaks. “As someone who also has severe depression, this book was really meaningful to me because it gave me an outside view of what the disease looks like to my loved ones,” says Jennifer E., of Dallas, Texas. “My disease makes some kind of sense to me but reading this helped me see how nonsensical it must look like to everyone else and weirdly this makes me want to fight it more.”
A mom of four, Kara’s world is shattered when she receives a diagnosis of stage IV incurable cancer. She wrote the book while in the process of dying, allowing her to give invaluable insights into what it feels like to get such a heartbreaking diagnosis and how to live your best with what time you have left. “My disease — I have rheumatoid arthritis — isn’t a death sentence, thankfully, and Kara helped me see how much I really have to be grateful for,” says Constance J., of Alberta, Canada. “This book was the reminder I needed to bring me back to God and to practice faith.”
At just 100 pages, this relatively short book packs in a lot of information. Matt uses his experience with multiple sclerosis to share what he learned about both the practical and emotional aspects of dealing with a lifelong diagnosis and a progressive illness. “Everything is laid out very clearly, it was very easy for me to read,” says Mark Y., of Denver, Colorado. “It felt like talking to a good friend who just happened to have a chronic disease too.”
Mental illness is often overlooked in discussions of chronic diseases but can be every bit as painful and life-changing as a physical diagnosis of illness. Moreover, they often come together with other diagnoses, making learning to manage them all that more important. This book gives practical tips and support for living, and even thriving, with depression and anxiety. “I don’t usually tell people I have crippling anxiety because I think it sounds dumb to a lot of people. Like, ‘Why can’t you just leave your house, it’s not that hard’,” says Angel M., of Gilbert, Arizona. “This book helped me see that these illnesses can affect your life just as much and they are real. I liked all the tips.”
A fictional tale about a teenager in a dystopian world might not be the first thing you think of when you think of dealing with a chronic illness but there’s a lot you can learn from The Hunger Games series about dealing with tough experiences that come to you through no fault of your own, says Curt A., of Raleigh, North Carolina. “It provides a much need escape from my reality plus if there’s anyone who understands going through hell with no one to depend on but yourself, it’s Katniss Everdeen,” he explains. “It really captures the feelings of frustration, anger, self-pity, isolation, and unfairness I’m experiencing.”
Minimalism is a buzzword these days but learning to declutter your home and buy less are great ideas for many people, including those suffering with a chronic illness. This book shares how to apply this movement to your life in a simple and doable way. “If there’s one thing that will make you want to simplify everything in your life, it’s getting a chronic disease. I have extreme asthma and allergies and they really limit what I can do,” says Jeff K., of Encinitas, California. “Getting rid of most of my things was very freeing, emotionally, and made me feel better physically as well.”
Thanks to Rachel’s self-deprecating humor and real-life insights, this self-help book upends the self-help stereotype to provide entertaining-yet-practical tips for ditching negative thought patterns and achieving your goals. “Ever since I was diagnosed with Crohn’s disease, I felt like I was putting my life on hold. I was always waiting to feel better before I could do what I wanted,” says Sarah M., of Seattle, Washington. “Rachel helped me see that I didn’t have to wait for the stars to perfectly align to start taking steps forward and that even little, positive changes add up.”
In this book, Milly is both therapist and patient when it comes to her lupus diagnosis. The disease almost killed her but she survived and shares her advice for dealing with a chronic diagnosis in general as well as the specifics of living with lupus symptoms. “Milly was my lifeline when I first got diagnosed with lupus. All I read was scary things and she showed that there was light at the end of the tunnel,” says Margot B., of Minneapolis, Minnesota.
Some illnesses are very apparent to the general public but many are “invisible” to everyone but the person living with them, which can make it that much harder to deal with them. This book offers real-world examples of situations people may face and offers solutions for how to resolve them. “I have a heart condition but I look young and healthy. I can’t tell you how many times I’ve been lectured or even yelled at by people for parking in the handicapped spot at the store. It’s enough to make me not park in them unless I’m having a really difficult day, even though I have a valid permit,” says Heidi B., of Salt Lake City, Utah. “This book helped me feel less alone and gave me some scripts to help me talk to people when they have questions.”
Using research and personal discoveries he gleaned from a group of experts he calls “The Stimulati,” this book offers nine tips to help people dealing with any type of chronic illness to improve their life. “I have a chronic disease and live in daily pain yet the doctors are unable to figure out what’s wrong with me so I really related to Jim’s story about dealing with the same thing and trying to get an accurate diagnosis,” says Juliette B., of Ridgecrest, California. “It was good to know I could start taking steps to get better even if I didn’t know exactly what was wrong.”
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CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We present patients through our popular social media channels, our website CreakyJoints.org, and the 50-State Network, which includes nearly 1,500 trained volunteer patient, caregiver and healthcare activists.
CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website CreakyJoints.org, and the 50-State Network, which includes nearly 1,500 trained volunteer patient, caregiver and healthcare activists.