17 Tips From 17 Years Sick

Making the best of 17 years of chronic pain and illness

Posted May 15, 2018

Public Domain
Painting by Carl Holsøe (1863-1935)
Source: Public Domain

When I began to write for Psychology Today over seven years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s seven years later. A lot has happened in my life, but there’s been one constant: chronic illness, including chronic pain. Since 10 + 7 = 17, it’s time for “17 Tips from 17 Years Sick.” 

1. Grief is a natural reaction to chronic illness.

My online dictionary provides a short and succinct definition of grief: “deep sorrow.” Most people don’t associate grief with illness. In my experience and in the experience of countless people who have written to me, grief is not just present when chronic illness first settles in, but comes and goes, comes and goes. The first few years of chronic illness wouldn’t have been as hard for me had I known that grief is a natural response to any sudden, unexpected loss in life. 

Looking back on the past 17 years, it now seems obvious that losing my ability to freely function would trigger grief at times, yet it took me many years to understand and accept this. When I finally did, it was emotionally healing.

2. Listen to what your body is telling you.

This tip, like many of the others in this piece, 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.

3. Re-evaluate your set views on “right” and “wrong.”

When chronic illness severely limited what I could do, I was forced to rethink many of my firm beliefs about the right versus the wrong way to do things. For example, my husband is a great cook, but for years after I became ill, we didn’t have anyone over to dinner because we’d have to eat at 5:00 to accommodate me.

Then, about a year ago, I realized there was no reason not to ask a friend or two for dinner and tell them we’ll be eating at 5:00 and it will have to be a short evening. It’s worked out well. People are glad that they can see me at all, and they’re happy to eat early. Best of all, my husband gets to cook and have guests in the house.

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

This can be a challenge because many of us look after our own happiness last. This is why I suggest that, before you go to bed, you write down something fun or nourishing 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.

That said, sometimes it’s wise to change your plans. And so, on days you’re not able to get to that activity (maybe an unexpected obligation arose), let it go for the day…and start planning again that evening.

5. Finding beauty in ordinary things can be an 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 my house. The four seasons have become distinct—summer birds versus winter birds; 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.

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

I’ve used this quotation before because it’s been so helpful to me. Once in a while, I wake up and 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 think about this quotation and then 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.”

7. It’s okay to feel two ways 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 my ability to do things outside the house is severely limited but happy about all the things outside the house that I don’t have to do!

When I make room in my heart for seemingly contradictory feelings, I’m more at peace with my life. 

8. Accept that life’s little hassles won’t disappear just because you’re struggling with your health.

When I had to stop working due to chronic illness, I thought I could arrange my life so there’d be few aggravations. This would ensure that I’d always feel as well as was possible. 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 latest little hassles); or the commitment to keep my roof from leaking (another recent hassle). 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. As John Lennon said: “Life is what happens while you’re busy making other plans.” I was planning a hassle-free life to accommodate my illness. Now I realize that will not come to pass, and so my only choice is to work on accepting without bitterness life’s inevitable struggles and unwelcomed surprises. 

9. Reach out and help someone.

It's not unusual for those of us who are chronically ill to turn our focus inward to our sick and pain-filled bodies (or minds if we suffer from mental illness). This is understandable and, at times, the smart thing to do so we can find the most beneficial treatments and maximize our functionality. But turning our attention away from our health concerns and reaching out to others can relieve some of the anguish that accompanies focusing exclusively on our illness.

Helping others can take the simplest form—even just a short email “hello.” I’ve discovered that people appreciate the smallest gesture of kindness. Try it.

10. Accept that some people will understand what your life is like and some will not.

It took me a long time to make peace with this fact but, when I did, my life as a chronically ill person got so much better. It helps to realize that people’s ability or lack thereof to understand you is not about you; it reflects their own life history and perhaps their own fears about illness and even mortality. 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. People are going to behave how they’re going to behave, regardless of my wishes. 

I feel more at peace with life when I graciously accept whatever people have to offer and let the rest go.

11. Plan Plan Plan.

I’ve become a planner. Here’s why. It’s a huge strain on my illness to find myself stuck in a situation just because I didn’t work out the possibilities ahead of time. I know that our best plans sometimes fall through—that’s part of life—but it doesn’t keep me from planning ahead for just about everything . I don’t enjoy it, but it can keep my symptoms from flaring. I’ll take a pillow for my back in case I get stuck in the waiting room at the doctor's office. I’ll give a friend a set time to end our visit so it doesn't go on longer than I can handle. Obviously, this means that I've lost a lot of spontaneity in my life, but it’s a necessary trade off for me.

12. Make a commitment to throw in an extra rest whenever possible.

I need to do a better job of sticking to this tip myself but, when I do, I feel much less “trashed” at the end of the day. Even lying down for ten minutes can make a difference. Before I got sick, I thought that during the daytime you were either up or you were taking a two hour nap. Now I know the value of the five, ten, fifteen, twenty minute rest. I can’t think of any time during the day when I wouldn’t benefit from resting.

And finally, five “tips” as they appeared in earlier pieces. They’re here because they have a very long shelf life!

13. Be highly selective about what treatments you try.

I receive lots of suggestions about treatments for my various health issues. I know people are well-intentioned, but it can become overwhelming. What works for one person may not work for another. In addition, alternative treatments are extremely expensive and not covered by insurance. I used to jump at every suggested treatment. Now I’m highly selective. 

14. Don’t ignore new symptoms by assuming they’re related to your current diagnosis.

People can have a diagnosed chronic condition and still develop a new condition that calls for a different treatment. Because the symptoms of chronic illness can be so varied, there’s a tendency to assume that anything new is related to what you already have. Please don’t make that assumption. I’ve heard too many tales of people overlooking symptoms that turned out to be a new condition. 

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. Keep a “Try Mind.”

This is a teaching 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 plenty of second chances!

17. When all else fails, go to bed.

This was great advice when it was first given to me almost 17 years ago by Bruce Campbell of the CFIDS and Fibromyalgia Self-Help Program, and it’s great advice on this very day.

© 2018 Toni Bernhard. Thank you so much for reading my article.