Living Mindfully With Chronic Pain and Illness
An interview with best-selling author Toni Bernhard
Posted October 13, 2016
One of the most useful applications of mindfulness is to help people accept and adapt to uncontrollable circumstances in their lives like chronic pain and illness. Toni Bernhard is an author who has used mindfulness-inspired practices to cope with a chronic illness that unexpectedly came into her life and forced her to give up a successful career as a law professor. Rather than succumbing to despair, Toni was able to use her buddhist and mindfulness knowledge and her own experiences with illness to carve out a new career path as a best-selling author of three books. Toni's books offer a compassionate, uplifting outlook and practical tools. I sat down with Toni to find out more about her latest book - How to Live Well with Chronic Pain and Illness. Below are my questions and her answers.
(1) What is new and different about your latest book, compared to your other books?
First, I want to make it clear that the words “chronic illness” include chronic pain. I’ve written three books. Two of them are about chronic illness: How to Be Sick and the new one, How to Live Well with Chronic Pain and Illness. The new book is broader in scope than How to Be Sick, and it’s organized differently. How to Be Sick is organized around mindfulness-inspired concepts and practices to help people learn to live with grace and purpose despite the limitations imposed by their health.
By contrast, the new book is organized around specific difficulties and challenges that people face, such as dealing with others who don’t (or refuse to) understand; making the best use of your short time with the doctor; facing isolation and loneliness; handling mood swings and painful emotions; and coping with your limitations during the holidays. The new book draws on the thousands of people who’ve written to me about their health struggles. This enabled me to cover topics about which I don’t have personal experience (for example, the special challenges facing young people who are chronically ill).
What the books have in common are dozens of suggestions and practices that are easy to implement, and my conversational style of writing. People tell me that when they read my books, they feel as if we’re sitting around a kitchen table, chatting over coffee or tea.
My third book, which was written in between the two on chronic illness, is called How to Wake Up. It’s being used as an introduction to Buddhism by many teachers. Because I write from personal experience, it has a lot in it about chronic pain and illness too.
(2) In the introduction, you say the path to peace begins with facing life’s stark realities. What do you mean by that?
By stark realities, I’m referring to the human condition. First, we’re in bodies and they get sick and injured and old. Living in denial about this keep us from making peace with the lives that we have. Second, life is uncertain and unpredictable. I often call these corollaries of the universal law of impermanence. Everything is in constant flux and we often have no control over what happens to us and in the world. Learning to calmly “ride the waves” of uncertainty instead of being tossed about by them brings with it equanimity—a balanced state of mind that can find a measure of peace in any circumstance.
(3) What does it mean to pay "compassionate attention” and how has that helped you cope with your illness?
In Buddhism, compassion is described as the quivering of the heart in the response to the recognition of suffering in ourselves or others. If we’re so self-absorbed that we’re not aware of what’s going on in and around us, we may not even realize that we ourselves are adding mental suffering to our lives.
For example, we may be unaware of the misery being caused by our inner critic—the voice inside that’s unrelenting in telling us that we’re not good enough or that we should have said this or should have done that. Many of us have been conditioned to be our own harshest critics; we bark orders at ourselves without realizing the suffering it’s causing us.
However, if we pay attention with compassion in our hearts, we can watch for the presence of the inner critic and take action to counter this negative voice. (In the book, I discuss several techniques for taming the inner critic.) Compassion is not a passive state. It requires that we take action to ease suffering in ourselves and others, rather than being the passive recipient of whatever happens to us in life.
(4) Why is mindfulness such an important tool when dealing with uncontrollable experiences, such as chronic illness?
I define mindfulness as paying caring attention to our present moment experience. Being mindful in this way can help ease both physical and mental suffering. In Chapter Ten, I write about how physical discomfort has three components: the unpleasant physical sensation itself; our emotional reaction to that sensation (anger, frustration); and the stressful thoughts we spin from that (“I’ll be in terrible pain the rest of my life”). This means that two of the three components of that comprise our experience of bodily discomfort are mental in origin!
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With practice, mindfulness can help us catch stressful emotions when they first arise. This keeps them from ballooning into elaborate stress-filled stories that have no basis in fact but which we believe without question. For example, If your knee is hurting (like mine is right now), you can make things worse by reacting with anger and then compounding that anger with stories, such as “This pain will never go away.” As Buddhist teachers like to say: the suffering is in the stories.
An effective way to bring your attention out of your stories and into the present moment is to take three conscious in- and out-breaths while turning your attention to the present moment. As you do this, notice what’s available to your senses right now: a sight, a sound, the sensation of your clothes on your skin. Even if it’s not a particularly pleasant moment, at least you’re present for it instead of being lost in regrets about the past or worst-case-scenarios about a future you can’t predict. And, more often than not, being mindful of your present moment experience reveals that there’s something pleasant going on right around you that you just hadn’t noticed. This can be soothing and healing.
(5) If you have a chronically ill friend or relative, what are some helpful things you can do?
First, I’d say to simply be present for them. This means being a compassionate witness to their suffering. When I don’t know what to say to someone who’s chronically ill, I start with “I’m sorry” because I truly am sorry. I don’t expect people to say “the right” thing to me about my illness; I’m content if I can sense they accept me as I am and still treat me as a whole person.
If you want to help out in a more concrete way, ask them if you can do a specific task for them. They’ll appreciate it, I guarantee. When someone says to a chronically ill friend or relative, “Call me if you need anything” that call is unlikely to be made because the friend or relative won’t want to ask you to do something that may disrupt your day. But if, instead, you call them and say, “I’m going to the hardware store. Do you need anything?” they’ll know they’re not burdening you by asking you to get them light bulbs or other basic household stuff that they may desperately need.
(6) What do you recommend doing when friends and relatives refuse to understand your illness and your limitations?
This is a such a major issue for the chronically ill that it almost always comes up no matter what the subject-matter of a chapter is. First, of course, try to educate them. The first chapter in the book has many suggestions for how to go about doing this.
Second, acknowledge with compassion for yourself how hard it can be to accept that some people in your life may never give you the support you need and want. This is both a compassion and an equanimity practice.
A mind that is equanimous stays balanced and peaceful in the face of life’s ups and downs. One of those “downs” is that some people don’t come through for us (this, of course, is true whether a person is chronically ill or not). To practice equanimity in the face of friends or relatives who don’t understand your illness and your limitations, it helps to recognize that there may be many reasons for their behavior.
They may be self-absorbed, trying to deal with their own problems. Or, illness may trigger their own fears about sickness or even mortality. Practicing equanimity also means recognizing that you can’t “fix” people to be the way you want them to be. The odds are high that they care about you and wish you well, even though they’re not lending support. In my experience, recognizing this so that you don’t take their behavior personally brings with it a tremendous sense of relief. It’s as if you’ve put down the burden of needing everyone to understand what life is like for you.
Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Her newest book is called How to Live Well with Chronic Pain and Illness: A Mindful Guide. Before becoming ill, she was a law professor at the University of California—Davis. Her blog, “Turning Straw Into Gold” is hosted by Psychology Today online. Visit her website at www.tonibernhard.com.
Melanie Greenberg, Ph.D., is a practicing psychologist in Mill Valley, California, and former Professor of Psychology at the California School of Professional Psychology. She is an expert on stress, the brain,and mindfulness. She provides workshops, speaking engagements, and psychotherapy for individuals and couples. She regularly appears on radio shows and as an expert in national media. She also does long-distance coaching via the internet. She is the author of The Stress-Proof Brain (New Harbinger, 2017).
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