Making the best of 16 years of chronic pain and illness
Reprinted with the kind permission of Toni Bernhard.
When I began to write for Psychology Today over six years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s six years later. A lot has happened in my life, but there’s been one constant: chronic illness, including chronic pain. And so, because 10 + 6 = 16, it’s time for “16 Tips from 16 Years Sick.”
1. Always try to be moving forward in some part of your life.
Moving forward may mean trying a new treatment, even if it’s only for symptom relief—a vital aid for the chronically ill! It may be pursuing a new craft or other interest. It may be returning to something you enjoyed and can still do, such as calligraphy or embroidery. A few months ago, I realized I wasn’t trying any new treatments for my body (I’d run out of options), so I decided to try something new for my mind. I bought some watercolors since many years ago I studied oil painting. I sit in our lounge chair, tilt it back, and fiddle with beautiful colors. It’s been uplifting in so many ways. That’s why I started with this tip.
2. Make a Not-To-Do List
Here’s mine from several years ago: “A Not-To-Do List for the Chronically Ill.” I’m considering compiling another one to share. It’s empowering to be able to say, “Nope, that’s something I don’t do anymore.”
One thing that belongs on that Not-To-Do List may not be obvious. It’s this: “I do not ever blame myself for being 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 your best.
3. Keep a “Try Mind.”
Trying your best means keeping a “Try Mind.” This wonderful teaching came 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.
4. With that “Try Mind,” try not to worry about the future.
Since becoming chronically ill, I’ve had to be particularly mindful of when worry has taken hold in my mind. Of course, it makes sense to plan for future 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.
5. Commit to working on the art of pacing.
As I wrote about in “Pacing: The Chronically Ill Person’s Best Friend,” pacing is the single best treatment I’ve found (as have many others), but it’s also extremely hard for me to do. I’m generally a disciplined person, but with pacing, I struggle. And so, this tip is also for me: I’m going to work on being better at pacing during this, the 17th year of being sick.
6. Be aware that even though you’re struggling with your health, life’s other hassles aren’t going to disappear.
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. I always have something I need to attend to, whether it’s a new health issue (currently it’s my right knee) or householder stuff, such as getting a leak in the roof fixed and figuring out why the sprinklers are suddenly not working.
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.
7. Try to spend some time outdoors.
It’s amazing how the outdoors can change your outlook. This past winter, I made an effort to go outside every day even if I had to bundle up to do so (yes, it does get cold in California!). When I’m in a blue mood, it definitely 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.
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.
8. Prepare ahead of time before going to a doctor’s appointment.
Even if you prepare, you might be disappointed with how the appointment goes, 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.
9. Plan ahead.
Related to #8, I suggest you plan ahead for just about everything. I used to love being spontaneous, but now, finding myself stuck in a situation because I didn’t think it through exacerbates my symptoms. As a result, I try to plan ahead for everything. 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.
10. Accept with grace that the best medical course of action may not always be clear.
Realizing that there are lots of gray areas in medical care was new territory for me when I first became chronically ill. Before that, what I should do medically was always clear to me: get a sinus infection, take an antibiotic because sinuses are close to the brain; get a bladder infection, take an antibiotic so it doesn’t go to the kidneys. Get a viral infection, wait for it to go away.
But since I began to struggle with my health, including a bout with breast cancer in 2014, I’ve had several experiences where the question of what treatment to pursue hasn’t had a “right” or “wrong” answer. This has been especially true regarding medications that might keep the breast cancer from recurring, but which also have side-effects that are hard to tolerate. I’ve had to carefully weigh the pros and cons and make what seems to be the best decision.
11. Choose wisely when deciding what to watch on TV and where to 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.
12. Remember that friends and family who are healthy have problems too.
It’s easy for us to get wrapped up in our health struggles and to assume that those who are healthy are always carefree and happy. Of course, that’s not the case. In fact, some of them may be suffering mentally more than others 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. And related to #12…
13. Don’t expect friends and family to always say or do what you want.
Of course we want the people we’re closest to to always say and do the right thing in regards to our health. But that’s not going to happen. So, instead of focusing on what they don’t get right, I suggest you appreciate 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 are not about you; they reflect 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. 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. It’s not always easy, but I’m working on it.
14. Avoid asking “Why Me?” about your health problems.
In my experience, asking “Why me?” is not only unconstructive—it’s anxiety producing. The answer to “Why me?” would only be helpful if it 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. It’s this: 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, at different times in every person’s life, bodies get sick and bodies hurt.
In other words, I’m chronically ill 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 in order to learn some cosmic or moral lesson.
15. 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 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.
And finally, an oldie but goodie:
16. When all else fails, go to bed.
This was a tip I added a few years ago, 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 fifteen years ago by Bruce Campbell of the CFS/FM Self-Help program, and it’s great advice on this very day.
© 2017 Toni Bernhard.
Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Her newest book is called How to Live Well with Chronic Pain and Illness: A Mindful Guide. Before becoming ill, she was a law professor at the University of California—Davis. Her blog, “Turning Straw Into Gold” is hosted by Psychology Today online. Visit her website at www.tonibernhard.com.