18 Tips From 18 Years Sick

When I began to write for Psychology Today over eight years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s eight years later. A lot has happened in my life, but there’s been one constant: chronic illness. Because 10 + 8 = 18, it’s time for “18 Tips From 18 Years Sick.”

1: Realize that illness and pain are a natural part of the human life cycle.

It was a tremendous relief to finally realize there was nothing wrong with me just because I happened to be chronically ill (and note that chronic illness includes chronic pain). Everyone faces health challenges at some time in life. For some, it’s when they’re young. For others, it’s when they’re older. When you realize that pain and illness are natural to the human life cycle, you can stop feeling guilty about what’s happened to you.

2: You’re still a whole person.

This builds on the first tip. Because pain and illness come with the human condition, after they’ve become an ongoing part of your life, you’re still a whole person. Don’t let anybody make you feel otherwise.

3: Listen to your body.

Like many of the other tips in this piece, this one applies to both physical and mental illness. If your body is telling you to rest, find a way to rest as soon as you can. If it's telling you that a slow walk around the block would feel good, take that walk. Before I got sick, I hardly ever listened to my body. Now it has my ear all the time.

4: Question your set ways of doing things to be sure they’re still serving you well.

When chronic illness severely limited what I could do, I was forced to rethink my views on the “right” versus the “wrong" way to do things. For example, after I became chronically ill, we didn’t invite anyone to dinner because we’d need to eat at 5:00 pm to accommodate me, and I thought that 5:00 pm was too early to be serving dinner. This set view of mine not only deprived me of the company of others but was also depriving my husband of the opportunity to cook for others—and he’s a great cook.

Then two years ago, I decided to see what happened if we invited a couple over for dinner at 5 p.m. They loved getting the invitation! They didn’t care what time we ate. They were just happy to be at our house, visit with us, and eat excellent food.

So think about whether you’re depriving yourself of some of life’s joys because you think you have to go about things in a “traditional” way. You don’t!

5: Each evening, write down something enjoyable you intend to do the next day.

This suggestion was in my “17 Tips” piece, but people gave me such positive feedback on it that I’m including it again, modified a bit. This little exercise can be a challenge because many of us look after our own happiness last. Try it though. Each evening, write down something fun or fulfilling that you plan to do the next day. Putting it in writing makes it part of your agenda for the day to come, which increases the likelihood that you’ll follow-through on it.

Of course, sometimes it’s wise to change your plans after you get up the next day. If this happens and you’re not able to get to the activity on the day you planned, let it go. No blame! But, that evening, don’t forget to write down something enjoyable you plan to do the next day.

6: Don’t fool yourself into thinking that life before chronic illness was always a breeze.

Once in a while, I find myself ruminating about my “perfect” pre-illness life. What a delusion! While there’s nothing wrong with enjoying fond memories of the past, it’s not the same as convincing yourself that life was perfect then—or even near perfect. When I find myself doing this, I try to get on with the day I’m in right now. Sometimes, I need a refresher course and so I re-read my own article on this very topic: “Romanticizing the Past Makes Us Feel Bad About the Present.” You might like it.

7: It’s OK to get the blues.

Everyone gets the blues now and then, even those in perfect health, so of course, we get them too. Our blues can be particularly intense because they often center around the frustration and hopelessness we feel about our medical condition. One of the triggers for my blues is a day when I wake up feeling just plain weary of being sick. I’ve told the story before of how, one day, shortly after my first book was released, I saw my primary care physician. As usual, he asked how I was. With a sigh, I said, “I’m tired of being sick.” I half expected him to say, “What? The author of How to Be Sick is tired of being sick?” But, he didn’t. He understood.

The good thing about the blues is that, like the weather, they blow in and blow out. They arise in the mind, stay awhile, and then pass. I’ve learned not to try and force them 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 just wait them out, perhaps by cuddling my dog or making my favorite hot drink or watching a movie on TV.

8: You do not have to always “think positively.”

Watch out for what is known as the “tyranny of positive thinking.” Are we never supposed to feel disappointed or frustrated due to our health struggles? That would be holding ourselves to an impossible standard. Although the mind and the body are interconnected, I do not believe that “thinking positively” or visualizing that we’re 100% healthy can cure disease, even though I’ve received dozens of emails telling me otherwise.

9: Recognize that, despite being chronically ill, you’ll still have to deal with the hassles that life throws your way.

When I stopped working due to illness, I foolishly thought that the one positive was that I could arrange my life so I’d be hassle-free, aside from medical matters. I’d live quietly and not take on any commitments that were beyond what I could comfortably handle.

Unfortunately, sometimes commitments have a life of their own—for example, the commitment to keep the plumbing from backing up in places I do not want it to be (one of my recent hassles). Being sick and in pain hasn’t freed me from many of life’s burdensome tasks.

Nor has it freed me from getting involved in the struggles of those I love. John Lennon got it right: “Life is what happens while you’re busy making other plans.” I was planning a hassle-free life to accommodate my illness. Once I realized that this would be impossible, I changed my attitude and now work on graciously accepting life’s inevitable struggles and unwelcome surprises.

10: Recognize with as much grace as you can muster that some people will understand what your life is like and some will not.

I’ve written pieces on this because it’s such a big issue for those of us who struggle with our health. I used to get upset when people didn’t understand me the way I thought they should. Then I realized that getting upset about it only made me feel worse, physically and emotionally. It took me a long time to make peace with the fact that some people—even some I’m close to—will never understand what my day-to-day life is like. When I finally did accept this, my life got so much better because I stopped striving to get people to understand. I do my best, and then let it go.

It helps to realize that people’s ability or lack thereof to understand is not about you. It reflects their own life history and perhaps their own fears about illness and even mortality. People are going to behave how they’re going to behave, regardless of my wishes.

11: Accept that being spontaneous may no longer be in the cards for you.

I hope that, despite your health struggles, you’re still able to do something fun at the last minute. I can’t. Absent an emergency, I need time to plan ahead if I have a commitment coming up. It exacerbates my symptoms (sometimes severely) to find myself stuck in a situation just because I didn’t work out the possibilities ahead of time. I don’t enjoy having to plan everything out so carefully, but it beats the alternative: a flare in symptoms that can land me in bed for days. So, for example, I’ll give a friend a set time to end a 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 trade-off and I’ve gotten used to it.

12: Recognize that you might be chronically ill for the rest of your life.

This may not be the right course for everyone to take, but I include it because, several years ago, I had a “moment of truth” when I realized that I might be chronically ill for the rest of my life. I’ve tried dozens of treatments; none of them has cleared up the flu-like symptoms I live with day in and day out. At the moment when I thought, “I might feel like this the rest of my life,” to my surprise, instead of feeling sad and depressed, I felt liberated, as if a great burden had lifted: the “command” to get better.

Without that burden, I felt free to get on with the life I have instead of fighting the exhausting battle for what, in the end, I may not be able to attain—getting my health restored. Don’t get me wrong. I’m still actively looking for new treatments, but I’m also now open to the possibility that there might not be a treatment that’s going to work for me. This openness has helped me find a measure of peace and well-being with a life that includes the limitations imposed by chronic illness.

13: Don’t jump at every treatment that you read about or that someone suggests.

I used to do this. It reflected how desperate I was before I recognized that chronic illness might be here to stay. I’ve spent thousands of dollars (I don’t even want to think about how much) on traditional and alternative treatments that either didn’t help or actually made my illness worse. I get lots of suggestions from people regarding treatments for my different health issues. I know that people are well-intentioned, but it can become overwhelming. What works for one person may not work for another. I used to jump at every suggestion. Now I’m highly selective and pay careful attention to possible side-effects and other consequences of a treatment. I think we all should be doing this.

14: Pacing pacing pacing.

Pacing is my go-to treatment. I admit that I need to do a better job of sticking to this tip myself but, when I do, I’m less likely to feel “trashed” at the end of the day. Even stopping to lie down for 10 minutes can help me make it through the day. My wish is that all of you who are reading this are better at pacing than I am!

15: Don’t ignore new symptoms under the assumption they’re related to your current diagnosis.

Just because you’ve been diagnosed with one chronic condition doesn’t mean you can’t develop a new one that calls for a different approach and treatment. Because the symptoms of chronic illness are so variable and can change unexpectedly, there’s a tendency to assume that anything new is related to what you already have. Please don’t make that assumption. I’ve read too many stories of people who ignored symptoms that turned out to indicate they had something new—sometimes something serious—that needed attention.

16: Keep a “try mind.”

I love this idea so much that I’m suggesting it again this year. It comes from Korean Zen master Ko Bong (1890-1962). It’s helpful and it’s soothing. Some days I feel so sick that all I can do is try: try to feed myself, try not to complain to others, try to find some joy in the spaces in between the pain and illness. And when my trying breaks down, I can try again. I guess I could call it “keeping a second chance mind.” We can all use second chances.

17: This is just your life.

The writings of Zen teacher Joko Beck have helped me to accept the life I have. In one of my favorite quotes, she said: “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 great solace in these words. Not everything can be fixed—perhaps not even my health.

“Just my life” has meant ending my career years before I expected to, being mostly housebound, always feeling sick, not being able to socialize for very long. These are the facts that make up my life. I accept them and vow to make the best of the life I’ve been given.

18: When all else fails, go to bed.

This was great advice when it was first given to me almost 18 years ago by Bruce Campbell of the CFIDS and Fibromyalgia Self-Help Program, and it’s great advice on this very day.

So those are my 18 tips. I’ve written about a few of them before because some tips have a long shelf life—a very long shelf life! My best to all of you.