Sunday, March 14, 2021

Weekly Inspiration: 5 Inspiring Books for Chronic Illness

It's been a while since my last Weekly Inspiration (more like Monthly Inspiration lately), in part because I have been hard at work setting up my YouTube channel! It includes videos about living with chronic illness and about books and reading. In fact, if you prefer to watch/listen, there is a video for today's post

I've been meaning to write this post for a long time now, to share with you some of the wonderful books that have inspired me and helped me during my 19-year journey with chronic illness. (Note that the titles below link to my full-length reviews on my book blog (including samples of the audio books) if you want to read more, and at the end of each book's description, I link to both Amazon and Bookshop pages, in case you want to order one of these books).

First, the book that has had the biggest impact on my life: The Anatomy of Hope by Dr. Jerome Groopman. This book came into my life at just the right time, in the early years of my illness, during a severe relapse when I was feeling full of despair. The author shares many personal stories from his patients, as well as his own decades-long battle with chronic back pain. The stories show his own gradual understanding of the role that hope plays in illness and recovery, which is not something taught in medical schools. To be clear, this is not a “positive thinking will make you well” kind of book. All of us with chronic illness have experienced the backlash of that kind of thinking; the implication is that if you’re not well, then it must be your own fault. This is not that. Instead, he presents both anecdotal stories and scientific evidence of the role that hope, joy, and attitude play in healing. He combines compassion and science, and reading this book at that low point in my life made me feel more in control of my life and provided me with some much-needed hope for my future. In fact, when my father was diagnosed with stage 4 melanoma 6 years ago, I gave him this book, along with some of my favorite quotes from it. It affected him the same way. He was something of a pessimist normally, but I think the book helped him to retain some hope, which in turn helped him to fight the cancer and continuing living his life for the next year. I do think hope played a role in helping him last that long and in giving us, his family, one last, precious year to spend with him, experience joy, and create memories. This book is very special to me. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.


The next three books I want to share with you are all from the same author, Toni Bernhard, but she’s a very special person, and all three books are inspiring and helpful. Toni has ME/CFS and got sick about the same time I did, so we met online and have been friends for almost 20 years now.


Her first book was How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.  This one, as the name implies, is specifically for those with chronic illness, though the title is a bit misleading because it’s really bout how to be well, emotionally and mentally, when your body is sick. And, in fact, anyone dealing with challenges in their lives will find this book helpful. In it, she applies Buddhist principles to life with chronic illness and explains in simple terms how to use these principles in everyday life. For instance, one Buddhist principle is that every life contains challenges, suffering is a normal part of life, and accepting this can ease your suffering. She also covers topics like finding joy in the midst of suffering, healing the mind by living in the present moment, learning to stop destructive thoughts, and much more. She even outlines some simple practices you can use in everyday life. When I first reviewed this book, my copy was filled with dog-eared pages, tabs, and Post-It notes because there was just so much packed into it. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.


Toni’s second book, How to Wake Up: A Buddhist Inspired Guide to Navigating Joy and Sorrow, took these concepts and applied them more broadly to any person, not just those living with chronic illness. Once again, Toni applies the tenets of Buddhism to modern life in an accessible way so that anyone can live a life more filled with peace and acceptance. She describes in detail just how to go about “waking up” to a more resilient, peaceful life. In separate chapters, she covers topics like mindfulness, kindness, compassion, and more, as well as obstacles to wellness, like dissatisfaction, anger, and worry. In this brief passage, Toni introduces the concept of judging and why it hampers a life of peace:


“Judging is an obstacle to waking up because it’s hard to engage life as an awakened being – with kindness and friendliness, compassion, appreciative joy, and equanimity – if we’re always adding likes and dislikes, shoulds and shouldn’ts to our bare experience.”


This book feels like having a good friend by your side, encouraging you, helping you to deal with your challenges and appreciate the joys in your life. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.


Toni’s third book, How to Live Well with Chronic Pain and Illness: A Mindful Guide, moves back to focusing in on people with chronic health conditions but in a more general sense. She adapted columns she wrote from her popular column in Psychology Today, “Turning Straw Into Gold.” I hardly know where to start because Toni covers so much ground in this incredible book, and there is so much useful information packed into it. Her short, easy-to-read chapters cover every aspect of life with chronic illness or pain, from the benefits of patience to the problems with complaining, from mindfulness techniques to dealing with doctors, and from appreciating what you have to guidelines for your friends and family. Toni’s warm, kind tone runs through it all, interweaving her own experiences with advice for others. Her approach is always calm and compassionate. As she herself states, “I’ve worked hard to find a measure of peace in the midst of feeling misunderstood,” and she takes that hard-won experience and helps boil it down to basic, simple steps that we can all take to improve our lives and cope better with chronic illness.
Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.


My final choice is a beautiful and inspiring little memoir, The Sound of a Wild Snail Eating by Elisabeth Tova Bailey. The author also has ME/CFS, and at the time she wrote this book, she was completely bedridden. A friend discovers a small snail on a walk in the woods and brings it to Elisabeth, setting it down in a pot of violets on her nightstand. At first, she can’t imagine what her friend was thinking or why she’d want a snail! But the snail gradually wins her over, providing a tiny slice of living nature right at her bedside, engaging her mind and, as strange as it may sound, providing companionship.  She writes of the snail’s fascinating habits and compares its life with her own. Her observations of the snail, fortified with facts she learned during later research, are presented in beautiful, poetic language alongside observations of her own restricted life.  It’s hard to describe, but the effect is fascinating and lyrical. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.


And last but not least, as a bonus 6th book, let’s not forget my own book, published in 2020, Finding a New Normal: Living Your Best Life with Chronic Illness. The focus of my book is on sharing our own experiences and providing practical tips you can use to improve your own life, bit by tiny bit. It covers daily living, emotional coping, relationships, and improvements, in short, easy to read chapters so you can dip in and out of it as needed. Each chapter provides helpful advice to making every day less stressful, more joyful, and more peaceful. This page provides more information, a few reviews, and links to both paperback and all types of e-book formats.


And that’s it! These are some of the books I have found most inspirational in living with chronic illness. I hope that you find some inspiration within these pages, as well.


In the comments (here or on YouTube), please share which books have inspired YOU!

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.



Claire(PainPalsBlog) said...

Thank you for this great list - I have just ordered a copy of The sound of a Wild Snail Eating as your review sounds fascinating. My daughter has also found a Finnish showing of the film which she has signed up to watch! Claire (PainPalsBlog)

Sue Jackson said...

Glad you found this post helpful, Claire! I had no idea there was a film version of Sound of a Wild Snail Eating! I'll have to look for that - thanks for the tip!


Billie said...

Dear Sue,
Just wondering if you have any more information to hand about high levels of B12 in blood tests.....
I talked to you years ago about this...... my doctor refuses to give me B12 injections now, and in
Australia they are not available without prescription.......
Thought you may have gleaned more info on why CFS/ME people often have this high reading.

Thanks, Billie Abbott

Sue Jackson said...

Hi, Billie -

Your doctor is wrong on this one. Blood tests for B12 only show how much is in the bloodstream, NOT how much is getting into the cells, where it can be used. And that kind of absorption of vitamins is a real problem for those with ME/CFS - we just don't do that well. So, blood levels of B12 are really pretty irrelevant for us. I also have high levels of B12 in blood tests but continue to take it every other day (prescribed by my doctor).

How do you feel since you stopped the injections? That is the real test - was it helping?

So, if your doctor refuses to prescribe injections, then you might consider other forms of B12. Swallowing pills of B12 is not very effective because it goes into your stomach, not into the bloodstream where it is available to your cells. Sublingual tablets can be quite effective, though, as long as you get the right type(s) of B12.

Here's more info on that and some links: