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21 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

Eleven years ago, I wrote “10 Tips from 10 Years Sick.” I assumed that, by now, I’d have recovered from the virus I contracted in 2001. Today, people with Long Covid are struggling with many of the symptoms I’ve had to learn to cope with, from physical pain to terrible fatigue to brain fog. My heart goes out to them.

In the 21 years since I got sick, much has changed in my life. The one constant, however, has been chronic illness (which includes chronic pain). So, it’s time for “21 Tips from 21 Years Sick.” I’m dividing this piece into two parts. Here are the first 10 tips.

1. Try “preemptive resting.”

This means resting before you think you need to. I’ll say to myself: “I can do just one more thing,” but that one more thing is often one too many. Then, when I lie down to rest, I don’t get the bounce back I would if I’d rested before I needed to.

2. Keep a “Don’t-Know Mind.”

In the past, if someone asked me to a party and I wasn’t sure how I’d feel on that day, I’d just accept the invitation. Then, when the day arrived, even if I was in terrible pain, I’d feel I had to go. Now I’ll say something like: “Thanks so much for inviting me. I don’t know how I’ll be that day. Can we leave it as a ‘maybe’ and I’ll be in touch the morning of the party?”

It's also valuable to keep a Don’t-Know Mind about what the future holds for me medically. Perhaps research into Long COVID will lead to some treatments that will help me—maybe even a cure. Rather than assuming I’ll never get better, I keep a Don’t-Know Mind.

Finally, Don’t-Know Mind keeps me from making snap judgments about people. For example, if a friend hadn’t been in touch for a while, I’d assume she no longer cared about me. Now I know that a friend’s failure to keep in touch is almost always due to something going on in her life, not because she's forgotten me.

3. Remember that moods are impermanent.

Sometimes if I’m feeling down, it’s hard to remember this. But when I call to mind the transient nature of moods, it allows me to hold a painful mood lightly, knowing it will pass. Doing this clears the way for self-compassion to arise. (If a dark mood persists for weeks and is affecting your ability to engage in daily tasks of living, it may be time to seek help for clinical depression.)

4. Let people help.

Most people want to help, so ask for it! Be specific: “Can you go to the pharmacy for me?” “Can you help me in the yard?” People feel good about helping in this way because, although they can’t cure you, this is something they can do to make your life easier.

5. Create a new life that’s within your limitations.

Your new life may be found in arts and crafts, writing, or helping others from your computer. Think outside the box! In the first few years after I got sick, if someone had told me I’d write a book from the bed, I would have said, “Not possible.” But I did, and now I’ve written four. I hope you’ll open your heart and mind to possibilities that are within your reach.

6. Cultivate feeling joy for others when they’re happy.

When people are doing something that’s no longer within your limitations, reacting with envy and resentment only makes you feel worse. By contrast, feeling joy for others has the unexpected consequence of making you feel joy yourself. Even if it’s only a little bit of joy—joy is joy!

7. Expect grieving to come and go, come and go.

When grief over my lost health first arose, I thought I’d get over it. Now I see that acceptance can give way any moment to a new round of grieving. I’ve learned to treat it with the self-compassion it deserves.

8. Don’t worry about what others might be thinking.

When I first got sick and didn’t recover, I wasted precious energy worrying that other people might be judging me. I’d lie in bed and ruminate: “Do they think I’m a malingerer, just trying to get out of doing things?” “If I’m at all animated around them, will they assume I’ve recovered and then judge me negatively for not resuming my former life?”

These stressful stories added emotional suffering to my physical suffering. Finally, I’ve come to this: I know I’m sick and in pain, and that’s all that matters.

9. Take comfort in illness as the great equalizer.

I’m reminded of this whenever I’m in a waiting room. My health care provider serves the indigent in several counties; I share the waiting room with the affluent, the homeless, and everyone in between. People graciously give up their chairs to others in need. People engage in friendly small talk and admire each other's children. We know we're equal when it comes to our health.

10. You can be working even if you don’t have a paid job.

People who are bedbound or housebound often think of themselves as not working. I’m in or on the bed a good part of every day, but I’m working. Preparing this piece is work. Answering emails from people who’ve read my writing is work. Maybe you are taking care of other family members; that’s work. And, of course, it’s work to stay on top of our medical conditions—watching for the latest developments, assessing doctors, evaluating treatments, keeping loved ones informed about how we’re doing. It’s exhausting work! So, when people say to us about our lives, “I wish I could lie around all day and do nothing,” we know they just don’t get it.

For the remaining tips, click here.

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