I keep going back to this quote by Vivian Greene when it comes to learning how to live with my chronic illness: “Life isn’t about waiting for the storm to pass… It’s about learning to dance in the rain.”
In fact, every morning I drink out of a mug with that quote on it to remind myself of Vivian’s wisdom: IT’S NOT ABOUT GETTING TO THE OTHER SIDE. With chronic illness, the important exercise is to get out the rain boots and start stomping in the puddles — to not let the downpour stop you from living.
Going into the second decade of living with a host of conditions — retractable depression, inflammatory bowel disease (IBD), hypothyroidism, pituitary tumor, aortic valve regurgitation, Raynaud’s disease, and connective tissue issues — one of the bigger mistakes I keep making is hanging on to the promise that if I do everything “right,” I will be freed from all symptoms for the rest of my life. If I follow the right diet that won’t aggravate my Crohn’s disease or cause brain inflammation that makes me depressed; if I exercise in such a way that doesn’t raise my cortisol and further deplete my adrenals (like running can) or wipe out my good gut bacteria (likeswimming in chlorine can); if I practice mindfulness instead of cuss and reduce my stress…if I do all these things, I will be fixed!
One day this past summer I was especially discouraged because, having returned home from a family vacation very depressed and anxious, I realized I couldn’t practice my health regimen perfectly every day for the rest of my life. There would be times I wouldn’t be able to make it to yoga, and my sleep would be compromised. Fresh kale wouldn’t always be in the fridge. I should expect lots of more evenings out when a waiter sets a basket of hot fries or tortilla chips right in front of me, or my daughter can’t finish her hot fudge sundae and my willpower wilts.
“We won’t always get it right,” a friend reminded me when I told her I caved to the fries and was therefore depressed. “And even if we did manage to do it all perfectly, would it ‘cure’ us? We have a chronic illness that will occasionally (hopefully less and less) rear its ugly head into our lives no matter how hard we try!”
This was true. I tend to forget about the word “chronic.”
I get persuaded into thinking by the dozens of self-help books I read each year that I have the power to fix every symptom of every condition I have with the right supplement or relaxation technique or food combination. And if I can’t? Then I’m not trying hard enough and have given up.
For example, I just finished the book The Hormone Cure by Sara Gottfried, MD, an excellent resource for women who are cursed by hormonal issues in the throes of perimenopause and menopause. She promises she can boost your energy, renew your sex drive, and restore your sleep with her natural protocols. A Harvard-trained gynecologist and nationally recognized yoga teacher, she is a pioneer in treating the root causes of hormonal issues, and I admire her work very much. However, I started to feel bad about myself on page 295 of her book when she refers to the kind of “learned helplessness” that Martin Seligman, PhD, of the University of Pennsylvania writes about in his book Authentic Happiness, and other works, the tendency to “behave helplessly and fail to respond to opportunities for better circumstances.” Dr. Gottfried writes:
Here’s a secret: I observe that women in my practice with learned helplessness have a far more difficult time achieving the hormone cure. Please answer this question honestly: Do you have the pattern of learned helplessness? Do you feel you lack the power to change your eating, exercise, and other health habits? In contrast, women who understand the many positive consequences of their lifestyle reset — such as cutting out sugar and flour, and walking most days of the week — achieve the hormone cure much more rapidly and sustain it. The most successful women in my practice also recognize that the locus of control is internal — they understand they have the power to change, and cultivate hope and accountability about meeting their health challenges.
Now I’m all about finding new ways to treat various conditions, by researching and exploring and inquiring with others, and readjusting and then learning some more. That’s why I average one self-help book a week, and I’ve made a hobby out of evaluating different studies. However, I also know that therein lies my weakness, as is the case with other people I know who battle chronic illness. Because when I’ve incorporated all the data being processed by my brain, and implemented suggestions from all my doctors and literature, and am on medication combination No. 45, and making kale smoothies every morning, and going to therapy every week, and doing Bikram yoga — and I can’t get well, or don’t get well — or slip and eat a basket of fries, I beat myself up like I have just committed three of each of the seven deadly sins. Actually, four of “sloth.”
Trying too hard — perhaps the opposite of learned helplessness — is the very source of my suffering.
But it’s hard to exercise self-compassion and know when enough is enough when you have people like Arnold Schwarzenegger and other celebrity types saying things like, “Learned helplessness is the giving-up reaction, the quitting response that follows from the belief that whatever you do doesn’t matter.” In our results-oriented culture, it’s all about pushing yourself beyond your limits, because “life begins at the end of your comfort zone” (Neale Donald Walsch).
Yes, there are times to push yourself like Schwarzenegger does.
And there are times to throw out the word “cure.”
It’s the first step of all 12-step support programs, where you admit powerlessness in a gesture of exhilarated defeat.
As a result, you can experience profound peace.
I remember one such moment in the summer of 2014 when I gave up on a cure for my retractable depression. I had been experiencing loud death thoughts for about five years despite trying numerous medication combinations and sessions ofpsychotherapy. I then decided to embrace the holistic route: making profound changes to my diet, trying new supplements, and participating in a course on mindfulness meditation at the local hospital. However, four months and lots of bills later, I wasn’t any better. (The diet changes did make a difference later on, but they took a good nine months.)
One June afternoon, I panicked when I realized I might not ever experience a reprieve from the death thoughts.
A man in the depression forum I had just started suggested I read Toni Bernhard’s book, How to Be Sick — and learn how to live “around” my symptoms instead of putting so much energy into trying to make them disappear. A few paragraphs into her book, I felt profound relief. A former law professor and dean, Bernhard contracted a mysterious viral infection on a trip to Paris in 2001 and has had flu-like symptoms ever since. Many days she is confined to her bed, and yet her life is full of meaning. In her new book, How to Live Well With Chronic Pain and Illness, she writes:
Many people think it’s their fault when they become chronically ill. They see it as a personal failing on their part. We live in a culture that reinforces this view by bombarding us with messages about how, if we’d just eat this food or engage in that exercise, we need never worry about our health. For many years, I thought that the skillful response to my illness was to mount a militant battle against it. All I got for my efforts was intense mental suffering — on top of the physical suffering I was already experiencing.
The pivotal moment for me came when I realized that, although I couldn’t force my body to get better, I could heal my mind. From that moment, I began the process of learning (to reference the title of my first book), “how to be sick,” by which I mean how to develop skills for living gracefully and purposefully despite the limitations imposed by chronic illness…If there’s no escaping our measure of disappointment and sorrow, then the path to peace and well-being must lie in learning to open our hearts and minds to embrace whatever life is serving at the moment. This is a mindfulness practice — mindfulness infused with compassion for ourselves.
I consider Toni my coach and inspiration when it comes to living gracefully within my limits. From her, and from other companions with infuriating health conditions, I have learned that life isn’t about waiting for the storm to pass. It’s not about fixing every symptom so that you can go to a dinner party without anxiety or help your daughter with her homework without abdominal pain. Life with chronic illness is about dancing in the messy wetness, accepting the perspiration of the universe for what it is, and — with the right umbrella and guidance and support from others who have been there — doing an elegant jig in the moment.
Sometimes by allowing yourself to have fun catching a raindrop in your mouth, you can forget about your symptoms.
And you can be set free.