A not-to-do list for those with chronic pain or illness

I love to-do lists. I depended on them when I was working outside the home. I’ve depended 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).

1. DO NOT say “yes” to an activity if your body is saying “no.” 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:

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.”

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.

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’re not 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 with us.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and SorrowShe can be found online at her self-titled site, Toni Bernhard.

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  • http://www.howtobesick.com Toni Bernhard

    Hi Britta,

    I’m so glad to hear that you love “How to Be Sick”! It means so much to me to get this kind of feedback. I had no idea it would have the impact it has. I admit to still picking it up myself for help (and now I pick up my new book as well — it’s filled with practices too).

    I’m happy to read that you’ve found that balance of making peace with your illness, while at the same time not giving up hope for a cure. That’s what I work on in my own life every day.

    Thanks again for leaving this comment!

    Warmest wishes,

  • Pauline Lambert Reynolds

    Excellent, more than excellent, if that is possible! I must give myself permission to be who I am. Thank you.

    • http://www.howtobesick.com Toni Bernhard

      Hi Pauline,

      I’m so glad you liked my article. I hope it helps you take that big step to give yourself permission to be who you are.

      All my best to you,

      • Suzanne Gerwick

        I’m waiting for my next appt. at the Mayo Clinic (Neurology right now) for chronic, unrelenting pain. I would add: Do not let your spouse become overinvolved in your illness or care, esp. if there is really nothing he/she can do to help.

        Why allow my hideous condition to destroy TWO lives (his & mine) instead of just one. He’s off playing golf right now. If there is something he can do to help me, I ask–such as driving me to Mayo at 5:00 a.m. this morning, bringing me coffee, carrying my bags of x-rays, etc.

        Find a good therapist to talk to about disturbing thoughts (suicidal & “death wishes” or “jokes” about him needing to buy life insurance on me & then I’ll jump in front of a car & die “accidentally”) as it is unfair to scare him & burden him w/my serious depression.

        A therapist is trained to help me. My husband is not & will only become more worried & scared & stressed which is detrimental to his health.

        Please excuse typos, mistakes, etc. as I am writing w/a stylus as hand pain is one of my conditions.

        I guess it boils down to seek help from professionals who can help me. Don’t let my medical problems become the focus of our marriage.

        Hope he has a great round of golf.

        P.S. He was my high school sweetheart & we have been married for 39 years. He has put up w/a lot & I’m very grateful to him…

  • Mary Cimiluca

    I have serious lung disease and while seated, I don’t ‘look sick” yet I cannot move very far without an oxygen tank. When I bring out my oxygen, someone invariably says, WOW!!! that’s terrible, you don’t LOOK THAT sick! I could smack them. Here’s the lesson: Don’t let the ‘others’, the ‘normals’ make you feel worse, dress up smile and laugh as if you are not sick anyway and try to smile when they are shocked! Living better with oxygen and through chemistry is ok if it’s your new way to live!

  • Andrea Lewsley Mardon

    This is excellent, wish I’d known it years ago. Some I’ve learned myself, others I still struggle with. I would add don’t think too far into the future – the idea of ten, twenty more years like this is terrifying. Live for the day. Also if you have a bad spell do not continually look back to see what you did to cause it. Sometimes there’s no reason. If you can’t learn from it eg no:1 listening to your body then let it go into the past. Do not feel bad when someone says “you look so well”. Just accept that people don’t understand invisible illnesses. Thanks Toni Bernhard I shall look for your book.

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