12 Tips from 12 Years Sick

Making the best of twelve years of chronic illness

Posted May 09, 2013

The Window Seat by William Orpen (1901)

Two years ago, I wrote “10 Tips from 10 Years Sick.” Last year, I wrote “11 Tips from 11 Years Sick.” This year…sigh…I’m still sick. And so it’s time for “12 Tips from 12 Years Sick.” A few of them have made an appearance in different form in the earlier pieces, but that’s because some tips have a very long shelf life.

#1. Expect grieving to come and go…and come and go.

Throughout life, we experience losses that lead us to grieve, and the loss of good health is one of them. The onset of chronic pain or illness is a major life event, so it’s not surprising that it triggers the need to grieve. But as the years have gone by, I’ve changed my thinking about grief and illness.

I used to think it would be a “one-time-through-the-stages” of grief process (the stages usually broken down into denial, anger, sadness or even depression, and then…acceptance). I thought that once I passed through a stage, it wouldn’t return. But now I see that acceptance can give way at any moment to a new round of grieving, maybe with just one of those “stages” popping in for a visit, such as anger or sadness. When this happens, I’ve learned not to push the grief away in aversion because that just strengthens it. Instead, I allow it to be present, treating myself as tenderly as I can until it passes.

#2. Try not to ruminate about what others might be thinking about you.

When I first got sick, I wasted precious energy worrying about what I perceived to be other people’s opinions of why I hadn’t recovered from what appeared to be an acute viral infection. I’d lie in bed and torture myself with thoughts such as: “Do they ‘get’ how sick I am?” “Do they think I’m a malingerer, just trying to get out of doing things?” “If I’m at all animated when people see me, will they assume I’ve recovered and then judge me negatively for not resuming my former life?”

These stressful stories I kept telling myself served only to add mental suffering to the physical suffering I was already enduring. It took me many years to realize that I had to take care of myself instead of taking care of what I perceived (often erroneously) other people to be thinking about me! Finally, I’ve come to this: I know I’m sick, and that’s good enough for me.

#3. Contradictory feelings are normal.

On a retreat 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—for example, sad that I’m sick, but happy that I’m able to connect with others online who understand what this life is like. When I make room in my heart for seemingly contradictory feelings, I feel more at peace with my life. My heartfelt wish is that you’ll learn to do this too.

Working on my new book

#4. You can be working even though you’re not in the official “work force.”

A version of this tip was in the “11 Years Sick” piece, but I’m raising it again because it resonated with so many readers. People who are bedbound or housebound tend to think of themselves as not working. I’m in or on the bed a good part of the day. But, I’m working. Writing this piece is work. Answering emails from people who’ve read my book is work. Writing my new book is work. Maybe you draw or knit or embroider (not to mention taking care of other family members): that’s work. And, of course, it’s work just to stay on top of our medical conditions—keeping abreast of the latest developments, assessing doctors, evaluating the effectiveness of treatments, keeping family and friends informed about how we’re doing. Whew!

My point is that, in the same way we’ve come to think of stay-at-home moms or dads as working people, those of us who’ve had to leave the outside-the-house workforce due to chronic pain or illness—or, as is often the case, both—are often working, even if it isn’t paid work. So, when people say to us about our lives, “I wish I could lie around all day and do nothing,” we know they just don’t get it.

#5. Friendships can be dramatically affected by illness.

I’ve also written about this before, but there’s no denying it: friendships and chronic health problems often don’t mix. Some of my friends have disappeared; others have stayed around, but our relationship has been changed by my illness.

Before I got sick, I loved to share the details of my life. But now those details are not so appealing: a catalogue of symptoms or a list of side-effects from a medication; the details of a doctor's appointment. It took me several years to learn how to be a friend while sick. Now I try my best to focus on subjects other than my medical condition (some days I’m more successful than others). I’ve discovered that doing this can be a welcome respite from my illness.

As for friends who haven't stuck around, our friendship may have faded away for any number of reasons. I’ve decided it’s about them not me. Illness may raise their own fears about health and mortality. They may not have the patience to stick with a friend who’s become so unreliable (I often have to cancel at the last moment—my friends who’ve stuck around are fine with that).

I do feel certain that those who’ve gone out of my life wish the best for me, and I wish the best for them.

#6. Take comfort in the knowledge that illness is the great equalizer.

Illness as the great equalizer continues to reveal itself to me, day after day. I see it when I read about people who share the same struggles with their health, even though their other life circumstances may differ drastically—some are financially secure while others struggle to pay the rent; some have fancy degrees, others a high school diploma; some have lots of support, others are alone. But we’re all equals when we’re in terrible pain or we’re too sick to get out of bed.

#7. The internet is a rich and multi-dimensional resource.

Imagine how isolated people used to be when they became mostly housebound. We are so fortunate to have the internet. It allows us to connect with others—even to make close and cherished friends with people who live all over the world. The internet also helps us become our own experts on our chronic condition. And it offers educational possibilities, many without costing a penny—from Ted Talks, to Coursera (www.coursera.org) and Open Culture (www.openculture.com) where you can take university-level courses for free, to The Khan Academy (www.khanacademy.org) where you can take lessons on almost any subject for free.

#8. Don’t be swayed by others people’s advice if your heart, mind, and body are telling you not to follow it.

I could fill a notebook with all the advice I've received about my health. I used to feel obligated to try everything, no matter how absurd and no matter how much my heart, mind, and body were saying "no."  I've finally reached the point where I don't care if someone thinks I I’m foolish not to follow his or her advice. After 12 years, I trust my own judgment. That said, note #9.

#9. 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 requires 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 the old. Please don’t make that assumption. I’ve heard too many tales of people overlooking symptoms that turned out to be a new condition. So don’t get complacent.

#10. Watch out for "the tyranny of positive thinking."

Are we never supposed to get blue or frustrated or disappointed over our health problems? 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.

#11. Try to do a thing or two each day that you find fulfilling or that simply brings you joy.

Think of a couple of things that are fulfilling or joyful for you to do and try to engage in those activities just a bit each day. It may take time to develop this habit. Many of us have a tendency to look after ourselves last. If that’s your tendency, it may help to make a list in the evening of your plans for the next day, making sure the list includes an activity or two that brings you fulfillment or joy so it’s part of your agenda for the day ahead. And on days you don’t get to those activities (maybe you were in too much pain or maybe unexpected obligations arose), forgive yourself…and start again by making a new list that very evening.

#12. Look for ways to help others.

It's not unusual for us to turn our focus inward to our sick and pain-filled bodies. This is understandable and, at times, very skillful because we want to do everything we can to 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 mental anguish that accompanies focusing exclusively on our ailing bodies. It doesn't take much to brighten another person's day.

© 2013 Toni Bernhard. Thank you for reading my work. I'm the author of three books:

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Second Edition) 2018

How to Live Well with Chronic Pain and Illness: A Mindful Guide (2015)

How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013)

All of my books are available in audio format from Amazon, audible.com, and iTunes.

Visit www.tonibernhard.com for more information and buying options.

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