A NOT-To-Do List for the chronically ill

~ Carolyn Thomas

Today’s guest post comes from the wisdom of Toni Bernhard, a former law professor who, one fine day many years ago, went to Paris for a holiday with her husband, got sick, and didn’t ever get better. As such, Toni’s had to learn a lot about being a patient, as she described in her wonderful award-winning book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. 

In this guest post, Toni lists items that belong on a NOT-To-Do list for all those living with chronic pain or illness.

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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 illness or pain (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 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.

©2013 Toni Bernhard www.tonibernhard.com

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This Toni Bernhard article was originally published in Psychology Today.  Thanks so much for your kind permission to repost it here for Heart Sisters readers, Toni.

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toni490Toni Bernhard’s new book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Until forced to retire due to illness, Toni was on the faculty of the University of California – Davis School of Law, serving six years as the dean of students. Her blog, “Turning Straw Into Gold” is hosted by the website of Psychology Today. She can be found online at www.tonibernhard.com; you can also follower her on Twitter or Facebook.

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NOTE FROM CAROLYN:    In my book A Woman’s Guide to Living with Heart Disease, (Johns Hopkins University Press).I wrote more about how “NO” is a complete sentence for heart patients – You can save 30% off the book’s cover price if you order it directly from Johns Hopkins University Press (use their code HTWN)  – Or ask for it at your local library, your favourite independent bookshop, or order it online (paperback, hardcover or e-book) at Amazon.

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Q: What would you include on your own NOT-To-Do list?

See also:

Top 10 tips from the author of ‘How To Be Sick’

Should heart patients make a ‘Bucket List’?

How working – and not working – affects heart disease risk

“Welcome to Holland!”

Are you too hard on yourself?

The new country called Heart Disease

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Published by Carolyn Thomas

25 thoughts on “A NOT-To-Do List for the chronically ill”

  2. Excellent reading and advice. I have been living for years with chronic pain from Fibromyalgia, Osteoarthritis and Hip Impingement with a large helping of Chronic Fatigue on top. One thing I would add is this:

    Do not keep everything to yourself. Find a trusted partner whom you can vent to without recrimination. It might be your spouse, a sibling, a friend, a therapist…it doesn’t matter “who”…it just matters that you have someone in your life you can trust to share your heart with.

    I’ve always been the strong one…the “mom”…the one my friends come to for advice. It never occurred to me that I was allowed to do the same. I viewed it at first as being weak. After time though, I realized that when people trust their hearts with me, I never viewed them as weak…so why was I being so harsh on myself?

    It took a long time to learn that lesson, but it was a valuable one to remember.

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  3. Spot on. Love her writings! In my soul searching and work I did before illness I was already gravitating to many Buddhist thought realms, Thomas Moore and others. The forgiveness and presence in the moments instead of living merely by expectations, is definitely what helped me then and now.

    A great share Carolyn!!!

    Annette

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  4. Thank you Carolyn for your post. This all rings true for me. When I am feeling good I want to keep on going, just like before. Then I pay the price. It is very hard for me to stop. Yet, stopping is what I need to do if I want to have another good day. Easier said than done. So I need to constantly remind myself to stop while I am ahead, say no, take a rain check, and enjoy the good moments.

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  5. Kira, we know what you mean. It is a terrible place to be in, chronic or terminal illness. Fact is no healthy person is going to ever know quite what to do with you. You are different and different makes people uncomfortable. It always has, the retarded, the dismembered, the blind, the deaf, the diseased, the too short, the too tall, the too skinny, the too fat.. Different people make normal people uncomfortable. It makes them say things like “Well, Bless your Heart” or “Good Grief!” or “Oh My Goodness!”.

    Sometimes it makes people roll their eyes (like you made this stuff up), some will even snicker and laugh at your misfortune. In others it makes them automatically speak in a whisper… like at a funeral. Yet others, Just get the heck away from you as fast as they can… like you might possibly be seriously contagious.

    You must know, it is not how they react that is important, It is how you react. If you need help, ask for it. If you are too tired to do something, don’t do it. NO is a very important word to learn to say and mean it.

    My source will appear comical at first, BUT, I read the “Sweet Potato Queens Book of Love” many years back. I can’t remember everything in the book, but she made a statement that I have always remembered and live by. She claimed to know the secret to happiness and here it is: BE PARTICULAR.

    What!? That’s it? in two words? YES. Be particular of what you put in your body, who your friends are, how you spend your time,how you see yourself and how you see others. Act accordingly.

    Try it, It works!

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    1. Hi Rachel – love that “Be Particular!” secret to happiness – so true on so many levels. I happened to see Jill Conner Browne interviewed at the taping of an L.A. talk show years ago, where I picked up a free (and autographed) copy of her fabulous book “The Sweet Potato Queens Book of Love”. She was hilarious! And wise!

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  6. I love this too. Thank you.

    The “Not to do list” Brilliant!

    You want us add to this? OK…

    First, I would NOT get caught up in the “I don’t look 20 any more” No, We don’t. But you are beautiful. You are a member of an elite group. You know what is important and what is not. You find humor in places and situations that use to bring you great stress. You are wise beyond your years. Somewhat of a “tweeny”… Somewhere between mortal and angel.

    Second, You are incapable of being used, conned or lied too. You see things as they are and act accordingly. You are wise about all things. Why? Because you finally started listening to your inner self and that inner self has always been wise.

    Third, You don’t spend a lot of time or money on aging creams, spanx, retirement policies or plastic surgery.

    Fourth, You know who to love and who loves you back.. unconditionally.

    Fifth and final, you have discovered who you are. What you are about. Your real needs. Your real desires and the very thing that makes you tick. You have discovered yourself and within that gift, you are complete.

    That is what life is about.

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  7. This was an excellent post. I’m getting older and I’m not the athlete I used to be. Your article has pointed out to me that I should quit comparing today’s ability level to that of 20 years ago. Talk about negative thinking! I’m going to work on enjoying what I am doing and not thinking about what I was doing. Thanks for writing.

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  8. Carolyn, thanks once again for posting this important article and introducing more people to Toni. I read this back in August and forwarded it to a dear friend who now subscribes to both Toni’s and your blogs. We discuss together the articles and learn from each other and thus have drawn closer in friendship.

    I needed this reminder so badly! I was doing that reminiscing bit about the “good old days” that frankly weren’t all that good at all!!

    I was feeling such grief about all I have lost, and completely ignoring all the wisdom I have gained and particularly my new wonderful friend who suffers also from lost health.

    This re-post “sunnied” up my morning!!

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    1. Everybody living with a chronic illness (or anybody who cares about a person living with a chronic illness) should read Toni’s book How To Be Sick.

      JG, have you read her new book yet: How To Wake Up?

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  10. My 3 personal favourites are the judgement from friends when you cancel at the last minute (for example cancelling meeting for lunch with a phone call @8am). To healthy people this is the last minute, to you this is the best you can do based on how you feel that day.

    My second favourite is the ‘if you only lost weight you would alleviate most, if not all your problems’. Suddenly I wouldn’t have osteoarthritis, hypermobility & neuropathic damage, with joints breaking down at light speed. Aside from the insulting implications that I’m fat because I’m lazy not because I’m in excruciating pain, I also appear to have no real illnesses. Add to that this feedback regularly comes from my father, who’s most recent advice was to get my stomach stapled as a solution (though he wasn’t offering to pay for it) & you can almost see the therapy bills.

    Finally I enjoy that by being open & honest about my health, I welcome intense judgement & feedback about taking pain medication. The ‘oh my god you shouldn’t be taking that’ or the ‘how can you work while taking that?’ For those of you unaware, just because there are people misusing & abusing pain medications doesn’t mean everyone does. Would you say those things to a cancer patient?

    So why am I forced to explain that I’m hyper vigilant, that my family doctor writes all my scripts & I see her every 3 weeks? I shouldn’t have to justify my informed choices to every person who feels entitled to pass judgement, but I will not hide how I manage my health because that implies I’m ashamed of the things I need just to have some semblance of a normal life.

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      1. Thank you Carolyn, it is all exhausting & as you know there is barely enough energy to do what you need. Since you don’t have the extra energy, these responses cause you to withdraw from them, makes you afraid of what new people will say & leaves you with a running discourse in your head that rivals anything outside yourself.

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        1. And that’s why Toni’s words are such a powerful reminder: we cannot change what others will say/think, but we can certainly work on editing those internal messages in our heads!

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      1. I love this post. Had dinner with a friend of 30+ years who takes only alternative (I am refusing to call them complementary these days) concoctions.

        She keeps urging me to see a naturopath to take homeopathic ‘medicines’ (which is just water anyway) and says to look at her, she is so healthy cause she takes 40 vitamins daily (no kidding!) and only homeopathy.

        I have been that entire route many years ago, even boiling my own Chinese herbs, and I can verify that my fibromyalgia did not improve but my pocketbook suffered. I will not take dandelion root drops for my heart disease, nor homeopathy for my fibromyalgia, or other alternative ‘medicines‘ that may interfere with my medications.

        So, the point here is avoid well meaning friends who enjoy ‘healthy privilege‘ and give advice on how to improve your life as it is so degrading and self defeating.

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        1. Lovely to hear from you again, Barbara. As Toni says about these magical treatments: “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.” People are of course free to buy/take whatever they believe in, but pushing others to do likewise is SO not cool.

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