6 Guidelines to Live by if You’re Chronically Ill or in Pain

A Personal Perspective: Setting rules helps one cope with chronic pain and illness.

Reviewed by Michelle Quirk

Key points

• Painful emotions inevitably arise at times. Remind yourself that “no feeling is final.”
• Never take another person’s side against yourself.
• Learn which self-care measures you can always count on for help.

I became chronically ill in 2001 when I didn’t recover from what appeared to be a routine viral infection. In the age of COVID-19, my doctor says we should think of me as a “long hauler” from that virus.

At first, I didn’t set any guidelines. I was in denial that I might have to change my entire lifestyle. I couldn’t believe that the pain and illness might be chronic. I thought, “You get sick and then you get better.”

And, so, I returned to work part-time after six months, even though I was too sick to do so. During that period, I was either in bed or lying on a couch in my office or sitting in a chair to teach. My husband would drive from his workplace in another town, take me to the law school to teach my class, and then pick me up afterward.

It's highly possible that this failure to admit to myself that I was too sick to work is one reason I’m still so sick today. Going back to my job put a stop to any healing that might have been taking place from that initial virus.

Even after I stopped working, I didn’t set guidelines

After I stopped working, I fell into a dark place of guilt and self-blame. I thought, “What’s wrong with me that I can’t get better? it must be some mental defect.” Yes, I really thought that.

My husband and I always went to my daughter-in-law’s parents’ house for Thanksgiving. The first Thanksgiving I was sick, I insisted we go, even though they live 550 miles away. Looking forward to it, we rented a hotel room nearby.

The trip was a disaster. I spent the whole time on my hosts’ bed. That may have been my lowest point. Their bedroom had a big window that enabled me to look through the backyard and into the family room. I can still see my family there, along with some visitors I’d come to love. I watched through those windows and wept.

How I changed

With a lot of help, I gradually changed. My background in Buddhism was helpful. It had taught me that life could be tough and the only path to peace was to work on gracefully accepting my life, however it was unfolding.

I was also helped by other people who were chronically ill. I’d met them online. Our stories were strikingly similar, even though we often had different diagnoses. I realized that what happened to me was a normal part of the life cycle. One of the conditions of being alive is that I might get injured or sick and have to change the way I was living. There was no reason to blame myself or feel guilty.

At times, I still struggle to stick to the guidelines I’ve finally set, but if I blow it, I simply acknowledge it, pick up the pieces, and start again. Here are those guidelines:

1. Remember, “No feeling is final.” I can’t take credit for this quotation. It’s from the poet Rilke. His reflection on impermanence has been incredibly helpful to me. For example, if hear about a trip I wish I could take, and that painful emotion envy arises, I take it as a signal to be extra kind to myself while I wait for the emotion to pass. And it always does.

2. Never take another person’s side against yourself. I consider this nonnegotiable. It could be a friend or a relative challenging you about how much pain you’re really in—physically or mentally. Trust your own judgment. You are the expert on you, so never take sides against yourself.

3. Don’t do things that exacerbate your symptoms. I recognize that sometimes you can’t control this. In addition, you might make the choice to do something that you know will exacerbate your symptoms, but it’s really special. I went to the wedding of close friends a few years ago. Even though I left before the reception, I “paid” for it with a flare in my symptoms, but it was worth the price to me.

That said, most of the time you can choose not to exacerbate your symptoms by relying on your experience of how much you can handle. This means you need to become an expert on what you can and cannot comfortably do,

4. Special occasions aside (that wedding), always be ready to say “no.” Learning to say “no” is required to keep you at what I call your “baseline.” It means that you must refuse to agree to do something out of obligation or guilt if, in your judgment, you know it will exacerbate your symptoms.

For example, it’s Thanksgiving and you know you can comfortably bake one pie to help with the food. But your cousin asks you to bake three pies (or even two). Just say no, no matter how negatively he or she reacts. To do otherwise violates my second guideline of never taking sides against yourself.

Since living day-to-day with chronic pain and illness, I’ve discovered the power and relief of saying “no” as in: “No, I can’t spend more than an hour visiting”; “No, I can’t stay for the reception.” If people can’t handle it, it’s about them, not you.

5. Come up with self-care measures you can always count on to make you feel a bit better. It could be a nap every afternoon. It could be a warm bath. It could be a favorite TV show. I recommend that you make a list. That way you’ll always have those self-care measures at hand.

6. Remind yourself that, despite your health problems, you don’t have a monopoly on suffering. No matter what their health status, everyone faces difficult challenges: a friend who’s in constant conflict with her partner; a supervisor who’s unbearable. So, one guideline I follow is this: “I’m not the only person with problems in this life.”

I hope this has been helpful. My best to everyone.