How to Live Well with Chronic Illness: An Interview with Toni Bernhard

Patient Expert

Toni Bernhard’s new book How to Live Well with Chronic Pain and Illness: a Mindful Guide is a wonderful resource for people living with any kind of chronic illness. Written with wisdom and empathy, it covers many aspects of living with an illness, showing you how to embrace your new life, and find a way to live well. I was privileged to talk to Toni about her books and her life with chronic illness.

“I might not be able to heal my body, but I can learn not to add mental suffering to the physical suffering.”

This goal forms the basis of Toni’s writing and of her three books.

Being sick

“2001 was a watershed year for me, and for the world,” Toni told me. After her two children had left home, she’d gone to law school, and was hired to the faculty after graduation. She served as the Dean of Students, but had returned to teaching. And then she and her husband went to Paris.

“The second day, I got sick. We assumed it was viral — it was a fever, cough, runny nose, but I didn’t get better.” In fact, she still feels like this. Toni describes it as being “like the flu without the fever. Near as the doctors can figure out, the acute virus compromised my immune system.” It has rendered her mostly homebound. “I can get up for a few hours, but then my body needs to lie down.” She was forced to stop working.

Toni had studied Buddhism for ten years prior to getting sick and it helped her to deal with her illness. “It’s a realistic view of life. A lot of people blame themselves when they get sick. I did — I thought it was my fault, a weakness in my character. Buddha says that illness and growing older are a natural part of the cycle of life. When we deny that, we make life harder for ourselves.” She especially likes his teachings on compassion.

“It seems to me that there is no higher calling than to be kind to ourselves, kind to others, and to make life better for each other.”** The new book**

Of the themes in the new book, the chapters on how to be kind to yourself and others stood out especially for me. “I get a lot of email,” Toni said, “more people write about their inability to be kind to themselves than anything else. They don’t feel worthy of that, the inner critic is so strong with its constant running commentary of what we did wrong. It’s just so harmful, it doesn’t make our life better.”

To make your life better, Toni advocates being kind to yourself. “When I’m kind to myself, I can ease physical symptoms,” she said. Part of this journey is to re-learn how to treat yourself, and to accept your situation. “Life is a mixture of successes and disappointments, it’s just part of being human. Rather than judge ourselves, we can learn to accept. My life got much better when I accepted my limitations.”

Asking for help is also part of being kind to yourself, but “it’s very difficult. We are taught to be self-reliant and independent. We think asking for help is a sign of weakness. It’s funny, I never thought others who were asking for my help were weak.” Toni also believes that asking for help can be a way to be kind to others. “My friends can’t cure my illness, but this is something they can do to contribute to my well-being. It’s a gift you give to others.”

“It’s hard”

Toni’s honesty about what it’s like to live with chronic illness is part of why so many love her books. Two sections in the end of the new book are especially heartfelt. The True Confessions is a list of stories about her life with illness. “I worry about not being competent in the world,” she told me, highlighting a story about not knowing new procedures to pay by credit card when out with a friend. She also admitted to being relieved when friends cancel social engagement, even if she’d very much looked forward to them. “It’s a sign of how sick I am and how hard it is to keep up appearances,” she said. “Whenever I put myself forward, there is always payback afterwards.”

Recently, life threw Toni yet another curveball when she was diagnosed with breast cancer. “It was a fluke it got caught, it showed in a CT scan for something else.” She had a lumpectomy and radiation and is now taking medication to reduce the risk of a reoccurrence. “I’m struggling, the medication increases my symptoms. It’s hard.”

During her recent illness, she found that her own writing helped her cope with the cancer. “I was in the middle of editing the book,” she told me. “I re-read a bunch of the manuscript and found that the last five or seven years have prepared me for this shocking diagnosis.”

Toni’s books are an incredible gift to the chronic illness community. You might say that they have also been a gift to herself.

How to Live Well with Chronic Pain and Illness: a Mindful Guide is available wherever books are sold. You can learn more about Toni’s other books on ToniBernhard.com, and follow her on Twitter and other social media.

See More Helpful Articles:

Using Mindfulness to Cope with Rheumatoid Arthritis

Accepting the Realities and Limitations of Rheumatoid Arthritis

I’m Fine: Learning to Ask for Help

Choosing Joy As a Coping Tool for Rheumatoid Arthritis

Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.