19 Tips From 19 Years Sick
Making the best of 19 years of chronic pain and illness.
Posted Jun 04, 2020
When I began to write for Psychology Today over nine years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s now nine years later. A lot has happened in my life, but there’s been one constant: chronic illness (which includes chronic pain). Because 10 + 9 = 19, it’s time for “19 Tips from 19 Years Sick.”
#1: Don’t underestimate the effect of sheltering-in-place on your symptoms.
I’ve read about people who are enjoying sheltering-in-place. (Mostly, these are people who are not working, either from home or otherwise; nor do they suddenly have children at home instead of in school). They love having empty calendars. They’re finishing projects they’ve been putting off. They’re catching up on sleep.
To my surprise, however, “officially” sheltering-in-place (I’ve been doing it unofficially since I got sick 19 years ago), has caused a flare in my symptoms. I’ve heard from many other chronically ill people who are having the same experience.
I think it’s partly due to stress that follows on the heels of the uncertainty about when we’ll get back to normal (or the “new abnormal” as I’ve heard it called). And, I think it’s partly due to the disruption in our routines.
That disruption is different for each of us. For me, it’s been in large part due to the outside having been brought into my quiet environment. There’s suddenly a flurry of video Zooming and FaceTiming. My quiet in-person visits with a couple of friends now take place on the phone or on the computer, both of which use up my limited energy stores fast.
Bottom line: I’m in a flare. I’m still counting my blessings because what’s happening hasn’t threatened my ability to have a roof over my head or get enough food to eat. My heart goes out to those who are struggling to get by. And yet, it’s disappointing and frustrating that I’m definitely more sick than I was before the ramifications of COVID-19 entered my life.
#2: Don’t fool yourself into thinking that life before chronic illness was always easy.
I write about this in my new book, How to Be Sick: Your Pocket Companion, under the “challenge” I call Accepting Without Bitterness How Restricted Your Life Has Become. In that section, I write: “Be careful not to look upon your life before chronic illness as always carefree and unlimited. It wasn’t. You couldn’t do whatever you wanted, whenever you wanted. No one can.”
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 stop, look around me, and then get on with the day I’m in right now, trying to make it as enjoyable and fulfilling as I can.
(Like many of the tips in this post, this one would apply to life after COVID-19 too.)
#3: Remember that chronic illness comes with the human condition.
It was a tremendous relief to finally realize there was nothing wrong with me just because I happened to be chronically ill. 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.
#4: Make it a habit to listen to your body.
Like many of the other tips here, 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 would feel good, take that walk (assuming your county allows that in this time of COVID-19). Before I got sick, I hardly ever listened to my body. Now it has my ear all the time.
#5: Don’t get down on yourself for feeling blue (or cranky).
Everyone gets the blues (and is cranky) now and then, even those in perfect health, so of course, we get them too. (I imagine, in these months of sheltering-in-place, lots of people are getting the blues and feeling cranky.)
For those with chronic illness, the 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 sick of being sick.” I half expected him to say, “What? The author of How to Be Sick is sick 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.
#6: Don’t buy into thinking that you have to always “think positively.”
Watch out for 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 private emails telling me otherwise.
#7: Be realistic: 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 there was one positive, 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.
#8: Before you go to bed, write down something enjoyable you intend to do the next day.
This suggestion was in my “18 Tips” post, 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, even though you may have to think of something that’s consistent with sheltering-in-place. Putting your plan 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 do what you thought you could the day before, let it go. No blame! But, that evening, don’t forget to write down something enjoyable you plan to do the next day.
#9: Accept 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.
#10: Recognize that being spontaneous may no longer be in the cards for you.
This, too, especially applies to sheltering-in-place. I hope that, despite your health struggles and before this quarantine, you were able to do something fun at the last minute. I wasn’t. Absent an emergency, I needed time to plan ahead if I had a commitment coming up. It exacerbated my symptoms (sometimes severely) to find myself stuck in a situation just because I didn’t work out the possibilities ahead of time. I didn’t (and 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.
#11: Finding beauty in ordinary things can be "extra-ordinary."
In a passage from Emma, Jane Austen said this about Emma as she looked out her window at the small happenings in the village street below: “A mind lively and at ease, can do with seeing nothing, and can see nothing that does not answer.”
Before my world became so limited, ordinary things rarely caught my attention. Now, I’ve learned to appreciate what goes on inside and outside where I live (even if it’s only through the window). The four seasons have become distinct—summer birds versus winter birds; the hardy dark green leaves of summer versus delicate light green leaves of spring. Small happenings inside my house are more likely to catch my interest too: the play of dust in a ray of sunlight; my dog’s wagging tail when she comes into the bedroom to greet me.
You could challenge yourself to find beauty in ordinary things, even make it a practice.
#12: Make “pacing” your mantra.
As I wrote about in my book, How to Be Sick, and also write about in the new “pocket companion,” 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! (You can read more about pacing in my post, “Pacing: The Chronically Ill Person’s Best Friend.”)
#13: Don’t jump at every treatment 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: Don’t ignore new symptoms under the assumption they’re related to your current chronic illness.
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. I’ve also read that this is becoming a serious problem with the presence of COVID-19 because people don’t want to go to the doctor, but most medical clinics are offering phone consults or video appointments.
#15: Be thankful you live in the Internet Age.
I can't imagine how much more difficult being chronically ill would be if I couldn't connect with others online who are chronically ill. Through social media and this blog, I've met people from all over the world.
If you live alone and are housebound, cyberspace friends may be your only source of support. It's so comforting to hear from another person who’s sick or in pain and be able to say, "That's exactly how I feel!" When I think of how isolated the chronically ill were just a few decades ago, I feel fortunate to be living in the Internet Age.
#16: It’s okay to have contradictory feelings at the same time.
On a retreat I attended many years ago, Buddhist teacher Jack Kornfield referred to life as “happy-sad.” Those words resonated strongly with me. I can be happy and sad at the same time—sad that I’m sick, but happy that I’m able to connect with others online who understand what this life is like; sad that COVID-19 restrictions have made my life even more limited, but happy that I live in a safe place and have enough food to eat. When I make room in my heart for seemingly contradictory feelings, I’m more at peace with my life.
#17: 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 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.
#18: 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 (even on the new video platforms we have to use these days). All of 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.
#19: When all else fails, go to bed.
This was great advice when it was first given to me almost 19 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 19 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.