I have been drawn to Toni Bernhard’s work because of the history of chronic illness in my family and because of the Eastern tradition she brings. This time, in her third book, How to Live Well with Chronic Pain and Illness, “mindful guide” has replaced “Buddhist-inspired” in the subtitle, but much of the techniques and flow recall her previous publications. Still, although this newest book does go over some territory she has covered before, it is also in many ways more personal than the first two books in the trilogy, so makes a good addition for those who have been following her work. How to Live Well can also stand on its own.
Filled with experiences from Bernhard’s own life and the lives of those who have contacted her since her first book, this latest text offers a broad range of solid practical advice.
Bernhard has talked about her frustration with the medical system before, and how those with Chronic Fatigue Syndrome (CFS) are too often not taken seriously. She wishes for a better label, one that is a more fitting description of the illness. There is a proposal to change the name to systemic exertion intolerance disease — and CFS is sometimes now referred to as myalgic encephalomyelitis. But those names don’t solve everything, because labels don’t capture suffering well.
Plus, as Bernhard writes, many of us are quick to judge. Those with chronic illness too often have to put up with well meaning comments that totally miss the mark. People say things like, “I get fatigued, too. Wish I could stay home all day!” Even comments like, “You look great, how could you be sick,” can sting hard.
Meanwhile, when it comes to doctors, other issues arise. Physicians are trained to heal, but chronic disease is often about maintenance — no big change for the better. A victory is holding your own. Some doctors can’t handle the fact that there is no quick fix for their patients.
Bernhard and those who have shared their stories with her call for empathy. It is extremely difficult for folks to feel helpless, both those who are ill and those who want to help. You do not know what to say or do. The stories here give a guide to what to say and do or not say and not do, and how we can help — but Bernhard acknowledges that it can be a balancing act that takes practice and adaptation to change. Even she has times when she doesn’t remember “how to be sick.” Two feelings that come through again and again in her work, then, are compassion and respect for yourself and others.
And there is wisdom in this book for everyone, even apart from those dealing with illness at the moment. For instance, it is easy to get wrapped up in regret and guilt about the past or worry about the future. Bernhard provides an exercise inspired by Thich Nhat Hanh that she calls “drop it.” If you find yourself presently stuck in regret about the past or worry about the future, you tell yourself, “Drop it.” But you don’t stop there. If you did, those worries and regrets would try harder to come back.
Once you drop it, she writes, you can immediately begin to ground yourself in the present by paying attention to what you are currently seeing, hearing, feeling, and to whatever else is in your awareness. It is a simple exercise that is quite powerful, but it does take practice. I have already recommended it to clients I work with, and I use it myself.
Other areas Bernhard covers include longing for the good old days, loneliness, issues faced by young people with chronic illness, complaining, embarrassment, dealing with the change in your identity, and setting limits. She gives extensive resources and guidance for caregivers as well.
She also mentions a couple of Buddhist practices by name. Tonglen is the breathing in of suffering and breathing out of compassion. If the former is difficult, you can focus on breathing out compassion. Mudita is taking joy in the happiness and success of others — as opposed to feeling envy and resentment. Both are powerful meditation and mindfulness practices that anyone can use to bring more serenity into their lives and increase their feeling of connectedness in this world.
Bernard has a friendly writing style. The chapters are short and focused, and she speaks to you almost as if you are sitting across the table from her. She talks about living skillfully, and her writing is skillful. I appreciate her work very much and her courage to share her struggle with the rest of us.
How to Live Well with Chronic Pain and Illness: A Mindful Guide
Wisdom Publications, October 2015
Paperback, 352 pages