A Not-to-do List for the Chronically Ill
(or those recovering from long-term illnesses/treatments)
Today’s post comes from Toni Bernhard, a former law professor who went to Paris for a holiday with her husband, got sick, and didn’t get better. Toni’s had to learn a lot about being a patient, she describes this in her book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.
I love To-Do lists. I depended on them when I was working outside the home. I’ve depended on them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.A few weeks ago, I realized I could benefit from a NOT-To-Do list that would remind me of my limitations – limitations I often ignore either because I’m in denial or because I want to please others.
Unfortunately, I always pay the price physically, and that’s not good for me mentally either.
So here’s a NOT-To-Do list for those who live day-to-day with chronic pain or illness (or, as is often the case, both).
I’ve ignored this NOT-To-Do so many times that I’ve lost count. It can be so hard to turn down an activity that makes me feel more like a healthy person. When I break this rule, it’s as if I’m a child again, shouting at my parents: “Look at me! I can ride a bike with one hand!”
My most recent bout with ignoring my body began innocently enough about a year ago. Two friends were kind enough to coach me in learning Qigong. I learned movements with wonderful names, such as “Against River Push Boat” and “Huge Dragon Enters Sea.” Then came “Ancient Tree Coils Root.” You imagine that you’re a strong tree, sending roots down into the ground. Unfortunately (for me), you execute this by pointing the tips of your fingers toward the ground, putting your weight all on one leg, and then squatting down on the knee of that leg.
For the first few months, I ignored the “one leg” instruction. I stood on two legs and only squatted down partway. I was listening to my body. But one day, I decided I wasn’t progressing fast enough, so I picked up one leg and went all the way down on the other. My knee went “crunch” and, for several months afterwards, I was limping and had knee pain to add to my daily symptoms. Why did I ignore my body? I was frustrated by my limitations and so I rebelled. Lesson learned though: DO NOT say “yes” to an activity if your body is saying “no.”
2. DO NOT call yourself names or otherwise speak unkindly to yourself.
Here’s an anecdote from my book How to Be Sick:
At a retreat in the 1990s, teacher Mary Orr told this story:Mary’s story was a wake-up call for me. I’d never call a friend “dumb” or “stupid” or an “idiot.” But I’d called myself those names. The Buddha said: “If you search the whole world over, you will find no one dearer than yourself.” I decided to take his words to heart and so I began to treat myself as if I were a dear friend. The result? I felt so much better, as if I’d shed a tremendous burden—the burden of self-judgment.
She was in the middle of a harried day in which she had too much to do and too little time in which to do it. At one point, while in her car, she realized she was talking to herself in a way she would never talk to others. I don’t remember her exact words, but I remember their impact. They resonated with me because of their similarity to the way I often talked to myself:
“How stupid of me to take this route; it’s always full of traffic.”
“I’m so dumb, I forgot to bring my notebook.”
“You clumsy idiot—you dropped your drink again.”
A good test for whether you’re treating yourself kindly is to ask if you would speak or act that way toward a loved one in need. If not, don’t speak or act that way toward yourself. It’s hard enough being sick and in pain. There’s never a good reason to add negative self-talk into the mix.
3. DO NOT try a treatment just because someone said it cured him or her.
I have a theory about many unconventional treatments. Depending on a person’s condition, it’s possible to spontaneously recover from an ongoing illness. Some people do. When that happens, they attribute their recovery to whatever treatment they happened to be undergoing at the time, no matter how unconventional it was. The reason I think my theory is credible is that I suspect I’d do the same thing were I to wake up not sick tomorrow morning.
So don’t assume that any seemingly magic cure is for you. Do your research, consult with those whom you trust, consider your pocketbook. I like to check my tendency to jump at treatments (I get emails almost every day telling me to try this or try that), by reflecting on how, if this really were a cure for my dysfunctional immune system, it’s highly likely it would be all over the internet on sites I’ve come to trust.
4. DO NOT wait until the last minute to get ready for something.
Waiting too long is an invitation for a surge in adrenaline to get you through. If you’re like me, that draining sensation of “coming down” off adrenaline is the first sign of a crash. When getting ready (showering and dressing for an appointment, picking up the house for visitors) try doubling the amount of time you think it will take.
5. DO NOT strive for a spotless living environment.
Corollary: DO NOT feel bad or criticize yourself for not striving for spotlessness. That would be engaging in unkind self-talk and it’s already on your Not-To-Do list.
6. DO NOT “shop ‘til you drop.”
That’s for healthy people.
7. DO NOT wear uncomfortable clothes.
Your body is already struggling. Don’t subject it to restrictive panty hose, tight jeans, high heels (of if you’re a man, whatever the male equivalent would be). Exception: If there’s a special occasion that will give you a mental lift if you break this rule, break it. But remember your reasons for breaking it, so that you don’t slip into negative self-judgment if those too-tight clothes start to chafe or those fancy-looking shoes begin to hurt.
8. DO NOT think about pleasures from your pre-illness life, freeze them in time, and assume they’d be as much fun today.
Even if you aren’t sick or in pain, life is in constant flux. Among the healthy, relationships change, job conditions change, bodies change. I’m going to write about this soon in a piece I’ve tentatively titled, “Do You Suffer from ‘Good Old Days Syndrome’?”
What would you put on your Not-To-Do list? I’m looking for more items to put on mine, so please share your thoughts.