Spoonie Reads: Toni Bernhard's "How to Be Sick"

I’m excited to start this new section on the blog today. I have wanted to start it for some time. Like many of you, I find the best way to understand anything that is nebulous is to read about it. What could be more absurd and confusing than illness, right? As an academic, the first place I always turn when I have questions or need context is a book. So as I read more books that relate to illness, I’ll write a post about them and try to explain how they are useful if you would like to read them. 

Many who have chronic illness—those who are newly diagnosed, undiagnosed, or diagnosed many years—have turned to Toni Bernhard’s How to be Sick: A Buddhist-Inspired GuideFor the Chronically Ill and Their Caregivers. It’s a great starting place for understanding what life with chronic illness entails and how to navigate the treacherous waters that come with it. Although Bernhard uses Buddhism as a framework for understanding illness, the text does not cover the tenets or history of Buddhism nor is it designed to convert. Buddhism is discussed as a tool for coping with illness, but it is not the focus of the book.

The book is geared specifically to those with illness and those who care for or care about anyone with an illness. You won’t find medical research or specific information about disease. The author does have Chronic Fatigue Syndrome (ME) and POTS, which I hadn’t realized until I started reading it. Yet, she makes this book accessible no matter what illness the reader may be coping with. You won’t find information about the practical, gritty concerns of illness in this book such as navigating the medical system, applying for benefits, managing specific conditions, etc. This is essentially a self-help book that borders on psychological cognitive therapy. Bernhard's intention is to help those who suffer with illness work toward acceptance and make peace with their irrevocably altered life. Using Buddhist teachings and the concept of mindfulness, she offers cognitive pathways throughout the book that are designed to help those with illness be mindful of destructive thought processes and re-orient them instead to be productive and positive.

The strength of this book is its accuracy in representing the universal experience of illness. She touches on all of the cardinal obstacles many with chronic illness will at some point face: doubt and insensitive comments from doctors and friends and family, grieving a former life, self-blame, confusion and frustration, the long road to acceptance, seeking answers when none may exist, and courageously rebuilding a life despite illness. It is the last point that is the overlaying theme of the book. No matter how resilient you are, that resilience will be tested after illness and Bernhard offers suggestions for reclaiming that resilience. 

She begins the book by stating that a basic tenet of Buddhism is that “life is suffering,” explaining that this is not a gesture toward resignation but instead acceptance that life is in constant flux. She mentions that this should be a source of strength. To understand this, she says she repeats to herself “You know this is the way it is. You were born and so are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the ways it’s happening to you.” Suffering can be used as an emancipatory concept to accept what you are experiencing and find a way to thrive and let go of the self-blame that is so common with chronic illness. Suffering as a form of strength and perseverance underpins many of her points throughout the text. 

There are a few points throughout the book that were memorable to me that I will mention, and even though I read this book a year ago, they have continued to help me with the tough emotional work of managing illness. She discusses the Buddhist idea that there is “no fixed self,” meaning that the “I” we use to understand ourselves and the world, is constantly changing. Thinking of ourselves and our bodies this way is useful for seeing our experience of illness objectively. She states, “contemplating the truth of no-fixed-self has helped me tremendously since I became chronically ill” because “what happens in life arises out of conditions, not from a ‘me’ in control.” Relinquishing this sense of control or the idea of any fixed state of being is useful on the really bad days. It can be a source of hope. She has a mantra to remind herself of this: “there is sickness here, but I am not sick.” I have repeated this on my bed-ridden days. It’s useful to remember that illness is not my identity and the experience of illness and life in general is constantly changing. The bad days and moments are transient.

Sometimes it feels like illness washes the entire world in a grey haze, but maintaining our humanity and remembering to feel joy is still essential. When I can’t do the things I want to do or be with my friends and family, I think about what Bernhard said about “cultivating joy in the joy of others.” This is a good antidote to the inevitable envy of those who are well that so many of us experience. When I can’t go to an event or leave the house, I try to feel joy that my friends are spending time with each and they are having fun. It’s difficult to do, but it always helps me get around the disappointment.

For me, the most useful point she makes is learning how to feel compassion for ourselves and our bodies. I have spent most of the years I’ve been ill punishing my body for being ill and forcing it to do things it is incapable of doing because I refused to accept my limitations. This obviously led to enormous frustration. It’s a product of guilt and self-blame. But Bernhard mentions that feeling compassion toward our own suffering is a way to surrender, accept, and cope: “When cultivating a compassionate mental state, sometimes I look for words that address the source of the suffering … I might silently say ‘It’s so hard to want to so badly not to be sick … my poor body, working so hard to feel better.” On the really bad days or when I feel like giving up, I think of these words and feel some compassion for myself instead of blaming myself for struggling to endure.

There is much more in this book that offers useful cognitive re-framing to understand and manage illness than what I mentioned here. After reading it, I did wish for more depth in terms of narrative and the application of these points, but perhaps that’s more a matter of personal taste than a deficiency in the book. I have some parallel experiences to hers, which I found so amusing that I talked to her on Twitter about it. We’re both academics, have POTS, and live in California’s Central Valley. When she mentions the embarrassing lengths she had to go to while teaching and being severely ill, I had a visceral connection with her. I had to do the same thing.

This book is educational in learning how to do more than just exist and survive with illness. It can help you on your path of learning to live well and fully while ill.

This book has been so successful that she has written multiple sequels to it that focus on other topics. I recommend this text in your studies of chronic illness and managing your condition or even understanding how a loved one lives with illness. You can find her website with a list of her books at www.tonibernhard.com.

Cheers and happy reading!