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20 Tips From 21 Years Sick

A personal perspective: Making the best of 21 years of chronic pain and illness.

Tony Bernhard, used with permission
Source: Tony Bernhard, used with permission

The end of May marked 22 years since I contracted what appeared to be a routine viral infection. My symptoms are eerily similar to what some people experience for months after coming down with COVID-19. If you missed tips 1-10, they can be found by clicking here. And now, tips 11-20.

11. “Don’t let yesterday use up too much of today.” —Will Rogers

Once in a while, I wake up filled with thoughts about my “perfect” pre-illness life. There’s nothing wrong with enjoying fond memories of the past. That’s different from putting the past on a pedestal and believing that life was perfect for you then—or even near perfect. I call this “Good Old Days Syndrome,” and it’s painful. When I find myself suffering from this syndrome, I think about Will Rogers’ words and then turn my attention to what today has to offer.

12. Pacing may be the best treatment you’ll find.

I know this won’t be true for all of you, but pacing is the best treatment I’ve found. That said, I need to do a better job with it! When I do pace myself, however, I’m less likely to “crash” by evening. Resting for just 10 minutes can be incredibly helpful. (Read more about pacing in my piece, “Pacing: The Chronically Ill Person’s Best Friend.”)

13. Don’t rush to try every treatment you find on the internet.

I used to do this. Now I see that it reflected how desperate I was to find help. I’ve spent thousands of dollars on treatments that either didn’t help or made my illness worse. It’s important to realize that what works for one person doesn’t necessarily work for another. I’ve become highly selective, and I do my research before trying anything. Related to that is:

14. Don’t be swayed by other people’s advice just because they’re giving it.

People have lots of advice for me regarding my health—from the reasonable to the absurd. Like most of us, I was raised to please others, so I used to feel obligated to follow their advice just to please them.

In retrospect, that’s quite amazing: Even when my mind and body were telling me it wasn’t a good idea, I’d follow people’s advice just to please them! At last, I’ve reached the point where I don't care if someone thinks I’m foolish not to follow his or her advice. After 21 years, I trust my own judgment.

15. No, you don’t always have to “think positively.”

I’ve heard this called the “tyranny of positive thinking.” Are you never supposed to get the blues or be frustrated over the state of your health? That would be holding yourself to an impossible standard. Although the mind and the body are interconnected, I do not believe that “thinking positively” or visualizing that you’re 100 percent healthy can cure pain or illness.

As for those “not-feeling-positive” moods, people in excellent health get the blues and experience frustration, so of course we do too. Our “not-feeling-positive” moods can be particularly intense because they tend to focus on how disheartened we’re feeling about our pain and/or illness.

At least moods, like the weather, blow in and blow out. They arise in the mind, stay awhile, and then pass. I’ve learned not to try and force painful moods away because that almost always intensifies them. Instead, I like to disarm their sting by greeting them with friendliness, even though they’re uninvited guests. I’ll say something like, “I know you, blues. Come to visit again, have you?” Then I wait them out, like people wait out a rainstorm. As I wait, I’m sure to be kind to myself—maybe making my favorite hot drink or watching a movie on TV (or both!).

16. Don’t assume that every new symptom is due to your current pain or illness.

This can be dangerous. I’ve read many accounts of people ignoring a new symptom only to discover that they’d developed another condition for which treatment should not have been delayed. If a new symptom doesn’t appear to be acute, please have it checked out.

17. Count your friends by quality, not quantity.

It’s better to have two friends who understand you and believe you and support you than to have ten friends who question whether you’re as sick or in pain as you say you are.

18. Keep a “Try Mind.”

This act of self-compassion comes from Korean Zen master Ko Bong. Some days I feel so sick, all I can do is try: try to brush my teeth (due to shoulder arthritis, it can hurt to raise my arms); try not to complain; try to find some joy despite my aches and pains. And when I strike out at trying, I try again. I like to call it “Keeping a Second Chance Mind.” We can all use a second chance.

19. This is just your life.

I’ve offered this tip before. That I’m offering it again speaks to how much it’s helped me over the years. It comes from Zen teacher Charlotte Joko Beck: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.” I find solace in these words. Not everything can be fixed—perhaps not even my health.

“Just my life” has included ending my career years before I expected to, being mostly housebound, always feeling sick and in pain, and not being able to socialize for long (including on platforms such as Zoom). These are the facts that make up my days. I accept them and vow to make the best of the life I’ve been given.

20. When all else fails, go to bed.

This was helpful advice when it was first given to me almost 20 years ago by Bruce Campbell of the CFIDS and Fibromyalgia Self-Help Program, and it’s still helpful.

Those are my 20 tips. I’ve mentioned a few before because some tips have a long shelf life! My best to everyone.

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