How to Live with Chronic Illness and Turn Straw into Gold

A deeply personal interview with author Toni Bernhard, author of the award-winning How to Be Sick, How to Wake Up, and, most recently, How to Live Well with Chronic Pain and Illness: A Mindful Guide. Huffington Post, October 8, 2015

Michaela Haas: You quote Marie Curie, “Nothing in life is to be feared. It is only to be understood.” How does this apply to chronic illness?

Toni Bernhard: It’s understandable that people get scared when their health falters. First of all, it triggers their fear about life’s uncertainty. I refer to uncertainty throughout the book as one of life’s stark realities: we simply don’t control a lot of what happens to us; life is uncertain and unpredictable.

Because this can generate fear, we’d do well to come to terms with this fact of life. When faced with something that we don’t control (for example, the onset of chronic illness), instead of being afraid, as Marie Curie points out, we can work on understanding it. In this case, I’d say we can work on understanding that illness is an inevitable part of the life experience. We’re in bodies and they get sick and injured and old. Once we understand that at a deep level, we can begin to accept it and that’s the first step in appreciating the life we do have, even if it’s limited by illness (or any other number of factors—where we live, where we work, our relationships).

Could you tell us a little about your own journey with chronic illness?

In 2001, my husband and I took a much-anticipated trip to Paris. Our plan was to immerse ourselves in Parisian life for three weeks. Instead, on the second day there, I got sick and spent those three weeks in bed. Everyone thought it was an acute virus, but it compromised my immune system in some way, and I never recovered. It has left me mostly housebound, often bedbound. I had no choice but to give up my career as a law professor. After several years of despair, I began to write from my bed—and a new world opened to me.

What’s your biggest challenge, and how do you work with it?

My biggest challenge is accepting without bitterness that I can’t be active with my family and friends. A few weeks ago, my husband, our two children, their spouses, our two grandchildren, and two of our best friends gathered in Reno for its annual Rib Fest. They spent three days together, visiting, eating (of course!), and having a great time together. Reno is only two hours from where I live, but I couldn’t go because this illness keeps me from traveling.

I work with this challenge, first, by recognizing how emotionally painful it is for me to have to miss out on so much. Then I cultivate self-compassion, often talking silently to myself, using soothing words such as “It’s so hard to be at home when I want so badly to be with everyone.”

Finally, I work on cultivating joy for them. All of us wish I could be there too, but no amount of wishing will change how my life is, so I work on feeling happy about the fun they’re having. Sometimes I have to “fake it ‘til I make it.” I picture the good time they’re having until, slowly but surely, I feel genuine happiness for them. That happiness may be tinged with sadness at times, but that’s okay. We can be happy and sad at the same time.

You write that our culture bombards us with arguments that if we just eat the right food and do the right exercises, we will never fall ill. You then mounted a militant battle against your chronic illness, only to give yourself mental suffering on top of the physical suffering. How can we avoid these pitfalls and find a more helpful attitude?

We need to be on guard against distorted messages about the nature of the human experience. These messages can easily become a source of self-blame when we’re not able to live up to the cultural ideal. Mindfulness is helpful here—being aware of our present moment experience. For me, the most valuable aspect of mindfulness is becoming aware of what’s going on in my mind. Am I believing these cultural messages simply because I’ve been hearing them for dozens of years? If so, it’s time to start questioning their validity.

Neuroscientists are finding that the mind is flexible and malleable, meaning that there’s no reason to fear that our mental habits are set in stone. We can learn to question our conditioning, our beliefs, and our assumptions about life…and we can change! This questioning leads to a more realistic view of the human condition. One of those realities is that not everyone will enjoy good health throughout his or her life. Coming to terms with this brings with it a measure of peace and well-being. The alternative—fighting a militant battle against this reality—only adds mental suffering to our physical suffering.

Rather than hit our heads against the wall in denial of what life is like, we can take our difficulties—whether they be illness, or conflict in a relationship, or problems on the job—as our starting point and, from there, see what we can do to make our lives as joyful as possible.

Why do you refer to positive thinking as “the tyranny of positive thinking?”

When people are told to always think positively, it sets them up for negative self-judgment when they don’t feel upbeat 100 percent of the time. Everyone should feel free to be down once in a while. Even the Dalai Lama admitted that he still gets angry at times!

Unfortunately, positive thinking is often pushed on people as a cure for all life’s problems. The effect of this on the chronically ill is that it leaves them feeling as if they’re to blame for their illness or pain because they just don’t have a positive enough attitude. To set the record straight: Positive thinking is not a cure for chronic pain and illness.

In my book Bouncing Forward I describe the new science of posttraumatic growth and I spoke with several people who took a severe crisis as a turning point in their lives to find more meaning, but this is not easy. How do we turn “straw into gold”, as you call your blog on Psychology Today?

In my experience, the way to turn straw into gold is to take our life as it is today as our starting point. We have the life we’ve been given, with its problems and its challenges. The only way to live a life of purpose and to find a measure of peace and joy is to work within our limitations to do the best we can to alleviate suffering in ourselves and others.

I had a very similar aha-moment you did, when you describe that you realized you couldn’t force your body to get better, but you could heal your mind. What is your advice for moving from responding with aversion to our illness to responding with acceptance?

The first step is to stop being averse to your aversion! When you try to push away how you’re feeling, it tends to only strengthen the emotion. It’s amazing how, when you acknowledge how you’re feeling, even if it’s a painful emotion, it loses its tight-fisted grip on you. And so, I recommend acknowledging with compassion for yourself that you wish you weren’t sick or in pain, and then taking a realistic look at what you can and what you can’t do about it. Once you accept your life as it is, something magical happens: you suddenly see new possibilities—things you can do despite your limitations—and a whole new life can open up for you.

What’s number 1 on your not-to-do-list for the chronically ill?

Number 1 is not to blame yourself for being chronically ill. Everyone struggles with his or her health at some point in life. This is just how it’s happening to you. You deserve your compassion not your blame.

How can mindfulness ease physical suffering?

Mindfulness can ease physical suffering in a number of ways. First, it can help you become aware of how your stressful thinking may be contributing to your physical suffering. Emotions are felt in the body. When you’re engaged in stressful thinking, such as worrying about how long a particular unpleasant physical sensation will last, you tend to tighten muscles in your body and that can add to your pain load.

Becoming aware of your stressful thinking patterns and learning to skillfully question their validity (which is covered in detail in the book), can also ease your physical symptoms. Finally, the book contains several mindfulness practices that focus directly on physical discomfort, such as easing it through a technique called sensory splitting or by doing a body scan.

Can people practice mindfulness and meditation if they have no teacher and no experience? And what’s your advice for someone who feels too ill to meditate and does not know where to start?

There’s no shortage of books today that teach meditation and also mindfulness outside of meditation. My books do. That said, if you’re struggling with a practice, it’s best to seek in-person help from an experienced teacher.

If you feel too sick to meditate, I say: don’t meditate! There are lots of other mindfulness practices outside of meditation that can be a tremendous help in soothing physical symptoms and in alleviating mental suffering. I write about this in my first book, How to Be Sick—how I gave up a ten-year meditation practice when I became chronically ill, but replaced it with several mindfulness practices.

I have started meditating again, but differently than before. I meditate lying down and sometimes for only 15 to 20 minutes. If you’re rigid about a schedule, including what position you’ll be in and how long you’ll meditate, your health problems may make it impossible to meditate. So, if you want to try it, be flexible and do what works for your body.

What advice would you give to friends and family who are often at a loss what to say and what to do when we don’t recover?

Simply be present for us—be a compassionate witness to our 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.

We both share a condition the medical community has inadequately termed "chronic fatigue". What would be a better description and term for this varied condition?

From my personal experience, my research, and my discussions with experts in this field, I’m convinced that Chronic Fatigue Syndrome is not one discrete illness. In fact, I’ve yet to find a single person with a CFS diagnosis whose symptoms are the same as mine. The diagnosis “Chronic Fatigue Syndrome” encompasses several subsets of illnesses that have yet to be isolated. They haven’t been isolated because the research money isn’t there, and that’s in large part due to the ridiculous name “chronic fatigue.”

As I write about in a chapter in the book about the harm that can come from mislabeling medical conditions, I’m not tired. I don’t fall asleep while watching television or reading. I feel sick, as if I have the flu without the fever. It appears that several bodily systems are involved in Chronic Fatigue Syndrome: the immune system, the neurological system, the hormonal system. We need money to be allocated for researching the cause of this devastating illness.

How did you manage to write three books despite your illness?

Sometimes I ask myself the same question! On days when I was able, I’d pull my laptop over from my desk to my bed and just start writing. It may have been only a few sentences; I didn’t rush myself. I write because it’s a way that I can contribute to the well-being of others even though I can’t be out in the world. Never in my wildest dreams did I think I’d become a successful author. Life can certainly take strange and unexpected turns.

How would you describe the succession of your three books, How to be Sick, How to Wake Up, and How to Live Well with Chronic Pain and Illness?

Truth be told, How to Be Sick began as a manual I was writing for myself. I called on some of the wisdom I’d learned from the Buddha to teach me “how to be sick.” Writing it immersed me in his teachings to the extent that it became natural for my next book, How to Wake Up, to set forth my understanding of his path to peace and contentment.

In my view, this is a path available to all of us no matter what our circumstances and no matter what our religion (or lack thereof). I thought I was done writing books after the second one, but it turned out that I had a lot more to say on the subject of chronic pain and illness. I wanted to explore a broad range of subjects, such as the effect of chronic illness on friends and family, how to skillfully handle doctor’s appointments, the special challenges faced by young people…and much much more. And so, I wrote my new book.

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.