15 Tips from 15 Years Sick

Making the best of 15 years of chronic pain and illness

Posted May 20, 2016

Public Domain
"Repose" by John White Alexander (1900)
Source: Public Domain

When I began to write for Psychology Today over five years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s five years later. A lot has happened in my life, but there’s been one constant: chronic illness (including chronic pain). And so, because 10 + 5 = 15, it’s time for “15 Tips from 15 Years Sick.”

1. Keep a “Try Mind.”

It’s not your fault that you’re sick or in pain. It’s not your fault that you can’t do all the things you used to do. It’s not your fault that you can’t pitch in and help at family gatherings the way you’d like. You’re trying the best you can.

And so, my first tip is to keep a “Try Mind.” This is a teaching from Korean Zen master Ko Bong (1890-1962). Some days I feel so sick or in pain that all I can do is try: try to get my teeth brushed; try to find something to eat; try not complain to others; try to find some joy. And when my trying falls apart, I know I can try again; that provides solace and gives me hope.

2. Remember that the future is a mystery.

Since becoming chronically ill, I’ve had to be particularly mindful of when worrying has taken hold in my mind. Of course, it makes sense to plan for various contingencies. But having done that, try not to worry about what might or might not happen. The future is unpredictable. You don’t control it. Worrying about it only makes you miserable in the present, and the present moment is the only place you are alive right now

3. Recognize that life’s other challenges don’t disappear just because you’re struggling with your health.

When I became chronically ill, I developed a plan: I’d accommodate my illness by living a quiet, hassle-free life. But John Lennon was right. Life is what happens while you’re busy making other plans.

Here’s an example from last year. Within the space of two hours, I was faced with these unexpected challenges: our electrical system developed a short and we had no light in our windowless bathroom; our microwave broke; the fence that separates our house from the park next door developed a hole so big that it no longer kept our dog in or other people out.

In the words of one of my first Buddhist teachers, Joseph Goldstein: “If it’s not one thing, it’s something else.” That may sound like a negative comment but, oddly enough, accepting the truth of his words has helped me roll with life’s punches. I’m more at peace now that I don’t expect a hassle-free life.

4. Give up your notions of how things should be.

Before I became chronically ill, I was quite opinionated, especially about myself: “I should always sound smart”; “I should exercise”; “I should always make sure the house is clean and neat.” Trust me on this one: Shoulds and shouldn’ts are the enemy of chronic illness. Just do the best you can and be nice to yourself.

5. Get outside if you can.

It’s amazing how the outdoors can change your outlook. When I’m in a blue mood, it helps to go outside, even if it’s only to sit in my backyard for ten or fifteen minutes. If you don’t have a backyard, try a front porch or a short walk up and down the block.

Even if the weather isn’t ideal, changing your surroundings in this way can change your mood. I find that going outside for a bit often gives me an idea for something enjoyable to do when I get back inside. Sometimes I have to force myself to go outside—funky moods can make me not want to move—but it’s always worth it.

6. Don’t contend with your body.

For many years, I’ve been practicing what I call “non-contention” in regard to other people (at times more successfully than at other times!). One day, it occurred to me that I could benefit from practicing this in regard to my own chronically ill body, instead of always fighting against what it’s telling me to do. And so, I suggest that if your body is telling you to stop visiting, find a way to stop visiting. If it's telling you that a slow walk around the neighborhood would feel good, take that walk.

7. Go prepared to the doctor’s office.

Even if you were prepared, you might still be disappointed with how the appointment went, but at least that disappointment won’t be because you forgot to raise a crucial issue or ask an important question. I make a list. I suggest you do, too. I wrote a piece about being prepared called “Don’t Be Intimidated in the Doctor’s Office: Six Strategies.” It might be helpful.

8. Be highly selective about what you watch on TV and where you surf on the web.

In last year’s piece, I wrote about an incident that I think it bears repeating. One day, I was feeling particularly sick physically and, as a result, vulnerable, emotionally. I turned on the television for some comfort viewing. On came a channel that was covering the 70th anniversary of the liberation of Auschwitz. There I was, face-to-face, with images of horrific cruelty.

I closed my eyes for a few moments of remembrance and said to myself, “We must never forget.” And then I changed the channel. I found a tennis match that was underway at the Australian Open and lay back to rest as I listened to the familiar voices of the commentators (I’m a tennis fan and so the commentators are like old friends). In my view, censoring what I watched on television in this fashion was the compassionate way to take care of myself.

I recommend that you take the same care in deciding where to surf on the web. Bottom line: You be the compassionate judge of what to expose yourself to.

9. Be highly selective about what treatments you try.

If you’re like me, you receive a lot of suggestions about treatments to address your particular health struggles. People are well-intentioned but it can get overwhelming. What works for one person may not work for another. In addition, alternative treatments tend to be expensive and are rarely covered by insurance. I used to jump at every suggested treatment. Now I’m highly selective.

10. Cut friends and family some slack when they don’t say or do what you want them to.

Let’s face it. Most of our “wants/don’t wants” (as I like to call them) go unfulfilled in life. That includes our desire for the people we’re close to to always say and do the right thing in regards to our health. Instead of focusing on what they don’t get right, I suggest you be thankful that at least they’re present for you and at least they’re trying.

It helps to recognize that some people are natural caregivers and some are not. In addition, this culture does a poor job of preparing people for this role, even though millions find themselves unexpectedly having to help care for a relative or a friend.

Remember that people’s abilities or lack thereof to be good caregivers is not about you; it reflects their own life history and perhaps their own fears about illness. I used to get upset when people didn’t behave the way I thought they should. (There’s that should from #4 again.) Then I realized that getting upset about it only made me feel worse.

I feel better emotionally when I graciously accept whatever support is offered and let the rest go, including my views about how people should act and including my disappointments. It’s not always easy, but I’m working on it.

11. Don’t forget that your healthy loved-ones have problems too.

This is related to #10. It’s easy for us to get wrapped up in our health struggles and to assume that those who are healthy are carefree and happy. Of course, that’s not the case. In fact, some of them may be suffering mentally more than we are physically. Don’t forget to ask how your family and friends are doing. Not only will it bring you closer to them, it will give you welcome relief from always focusing on the state of your health.

12. Recognize that spontaneity may not be possible anymore and compensate for it by planning  ahead.

It exacerbates my symptoms when I find myself stuck in a situation because I didn't plan ahead. As a result, I try to plan ahead for everything now. No, it's not fun, but it can keep my symptoms from flaring: I take a pillow for my back because I may be stuck at the doctor's office for a long time; I clean the kitchen over four days, dividing up the tasks into chunks of time that my body can handle; I give a friend a set time to end our visit so it doesn't go on longer than I can handle.

Yes, I've lost a lot of spontaneity in my life, but it's a necessary "side-effect" of being sick and in pain.

13. A good deep breath can clear away stress, making it possible to start the day anew.

Sometimes we get on automatic pilot and don’t realize that we’ve tensed up all over—in both our minds and our bodies. It’s a mindfulness practice to train yourself to become aware of when this has happened and to be able to say “stop,” and then take a deep breath, relax your body, and bring yourself into the present moment. Then you can start the day anew.

14. When thinking about your chronic illness, avoid asking “Why?” or “Why me?”

In my experience, asking “Why” or “Why me?” is not only unconstructive—it’s anxiety producing. The answer to these questions would only be helpful to me if I thought the answer would shed light on a cause I could do something about. The most compassionate thing I can do for myself is to look upon my medical challenges as simply what happened to this body along the path of life.

Everyone may not agree with the opinion I’m about to express, but I include it in case it’s comforting to you. (If it’s not, ignore it.) I don’t believe that everything in life happens for a reason, in the sense that life’s challenges and obstacles are “a test” to see if we can better ourselves in some way. I believe that illness and pain happen because we’re in bodies and sometimes they get sick and sometimes they hurt.

Everyone suffers from medical problems at some time in his or her life. In my view, I got sick because it’s one of the risks of being alive. It’s one of the risks of this mysterious, unpredictable, and wondrous life I find myself in. I don’t believe that illness and pain are cryptic messages that I’m supposed to decipher so that I can learn some cosmic or moral lesson.

And finally, an oldie but goodie:

15. When all else fails, go to bed.

This was a tip I added last year, but I think it’s going to have a very long shelf life. It was great advice when it was first given to me almost fourteen years ago by Bruce Campbell of the CFS/FM Self-Help program, and it’s great advice on this very day.

© 2016 Toni Bernhard. Thank you for reading my work. I’m the author of three books:

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Second Edition) 2018

How to Live Well with Chronic Pain and Illness: A Mindful Guide (2015)

How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013)

All of my books are available in audio format from Amazon, audible.com, and iTunes.

Visit www.tonibernhard.com for more information.

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