22 Tips From 22 Years Sick

Source: Pierre-Auguste Renoir/Public Domain

This post is part one of a two-part series.

In 2011, I wrote “10 Tips From 10 Years Sick.” I thought that, by now, I’d have recovered from the virus I contracted in 2001. Today, people with long COVID struggle with many of the symptoms I live with every day, from physical pain to bone-crushing fatigue to brain fog. My heart goes out to them.

My life has changed in many ways since 2001, but the one constant has been chronic illness (which includes chronic pain), so it’s time for “22 Tips From 22 Years Sick.” This piece is in two parts. Here are the first 10 tips:

1. Create a new life within your limitations.

In your new life, you may learn a new art or craft, write a memoir, or commit to helping others. Think outside the box. When I first got sick, if someone had told me I’d write a book from my 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.

2. Self-compassion is one of your two best friends.

Self-blame serves no useful purpose. It makes you feel worse, mentally and physically. Pain and illness come with the human condition. Everyone will experience them at some point. This is just when it happened to you.

Self-compassion simply means being nice to yourself. When I feel the need for self-compassion, I silently or softly say to myself something like: “My sweet body, working so hard to support me”; or “It’s so hard to have to miss lunch with my friends.”

There’s no end to how you can be kind to yourself. Please start right now!

3. Rest is your other best friend.

I can’t overemphasize the importance of “pre-emptive rest.” It means resting before you think you need to. I’m still working on this! I’ll tell myself: “I can do just one more thing,” but that one more thing is often one too many, and I begin to live off adrenaline. Then, when I finally lie down to rest, I’m too wired to benefit from it.

4. Keep a “try mind.”

“Try mind” is an act of self-compassion. It comes from Korean Zen master Ko Bong. Some days, I feel so sick or in pain that all I can do is try: Try to get dressed; try to make the bed. And, if the bed still looks messy after I’ve tried to make it, self-compassion dictates that it’s OK.

Other things you can try: Try not to complain because it doesn’t fix anything; try to find some joy despite how lousy you feel. If you try and it doesn’t work, try again. I like to call this “Keeping a second-chance mind.” Everyone deserves a second chance.

5. The onset of chronic illness is the beginning of a grieving process.

When I became chronically ill, I didn’t realize I was grieving. As a result, I didn’t understand why I was so down mentally. I couldn’t come close to touching what’s thought of as the fourth stage of grief: the healing balm of acceptance.

6. Don’t spend your precious energy worrying about what others might be thinking.

I used to waste so much energy worrying that people might think I was a malingerer or was just trying to get out of work. I worried that if I looked at all animated, people would think I was faking my illness and pain.

How I wish I could have all that wasted energy back! Those stressful stories I spun only added emotional suffering to my physical suffering. Finally, I’ve come to this: I know that I’m sick and in pain; that’s all that matters.

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7. Work on feeling happy for others.

When people are doing something that’s no longer within your limitations, feeling envious or resentful only makes you feel worse. By contrast, feeling joy for others when they’re happy has the unexpected effect of making you feel happy yourself. Even if it’s only a little bit of happiness—happiness is happiness!

8. Take comfort in knowing that illness is the great equalizer.

I’m reminded of this whenever I’m at the doctor’s office. My health clinic 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.

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

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.

Although I know this, sometimes I’m filled with thoughts about my so-called perfect pre-illness life. 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.

10. Contradictory feelings are normal.

On a retreat more than 30 years ago, Buddhist teacher Jack Kornfield referred to life as “happy-sad.” I’ve never forgotten that. I can be sad that I’m sick but, at the same time, happy that I can connect with others online who understand what my life is like.

I can be terribly disappointed but, at the same time, feel OK about my life. Last year, I was too sick to attend the 30th reunion of my law school class. I was very sad about it, but, at the same time, I was OK with it. Yes, I felt sad, but I have a decent place to live, a caring partner, and a faithful dog to keep me company. So, life is OK.

When I make room in my heart for seemingly contradictory feelings, I feel more at peace with my life. I hope you’ll try this.