Toni Bernhard: 12 Tips from 12 Years Sick

Toni Bernhard wrote one of the most useful books I’ve read yet since having M.E. – and I’ve read a lot of how-to-feel/get-better books about this disease and associated illnesses. It’s called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. I read it very quickly- in a matter of days – and then bought a copy for my mother and my therapist (in case the latter ever encountered another patient with a chronic illness – it would be a very good loaner). My sister actually wound up giving the same book to me for my birthday a few weeks ago, not knowing I already had it. She has no idea what a deeply helpful present that would have been had I not already read it. And, in fact it was a deeply wonderful gift, anyway, because it spurred me to start reading it again -revisiting some of the advice. Some of the most helpful insights are the most simple, like understanding that everyone’s bodies will break down, mine just happened a little earlier than I had been anticipating (Bernhard writes about “broken glass practice”: I will clumsily explain it as coming to see an intact glass as a broken glass that just hasn’t broken yet, so you won’t be surprised when it does. A glass will break sooner or later; that is its nature).

I have a chronic inability to accept this chronic illness. I feel like I have been deeply grieving for about a year now. The grief is suffocating. There are so many layers that it feels like you could never strong-arm your way through them to the core of peace… Or even numbness. I’d take numb exhaustion. But, instead, it’s loss of health then career then friends then mobility then independence then money then rational thought then sense of self. Each time you think you’ve dealt with one, you realise there is another one underneath. And, the whole time you are slogging through this mental morass, physical pain is torching your spine and needling you in the eyes and crushing your skull. The monster is hugging you so tightly that the room is spinning and you can’t form sentences, so you just concentrate on filling your lungs (as long as you are breathing there is more right with you than wrong with you…) and silently try to convince yourself you will live through it. And, when you do live through it, you catch your breath and think, Now, what layer was I on again? Oh yes. Grieving the loss of singing. Let me get back to trying to accept that I may not belt it out ever again – with family, in the car, definitely not at a live show.. Always a new layer you didn’t anticipate.

For me at the moment, it is grieving the loss of my happy relationship with one of my dogs. He is my best friend. He means more to me than I’d ever be able to put into words here. But the ball incident of a few weeks ago, coupled with having to be around my crying, deep breathing, gasping negative energy, seems to have triggered a constant agitated fear in my pup. It’s as if there is an imperceptible low grumble of thunder that has him permanently looking for safety – ears flattened, eyes wide, tail tucked, drooling, slinking away to the darkest closet to cower throughout the day. And that thunder is me. I am the danger. I am the storm. No matter how I try to emote calm, happy confidence when he’s around (“I’m the alpha, follow my lead. Everything is fine, I have this handled and under control.”), he hears my soul’s dark, pained rumble and, where once he was my constant companion, now he eyes me timorously if I come near with my forced chipper greeting. New layer of loss to grieve.

I really wasn’t going to write anything. I feel too dismal to justify the energy expenditure. What I really wanted to do was repost the article below written by Toni Berhard on Psychology Today and tell you that her book can help you if you’re not handling all the losses very well and/or you forget that there might be another good day ahead when you are drowning in the bad of today (and note #10 below). Thanks to Jess over at My Journey Thru ME for leading me to this article:

12 Tips from 12 Years Sick
What I have learned from 12 years of chronic illness.

Published on May 9, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

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.

And I can be terribly disappointed but, at the same time, okay with my life. A few months ago I had to skip the 30th reunion of my law school class. I was just too sick to attend. I wanted to go badly and so was very sad about it but, oddly, at the same time I was okay with it. Yes, being sick is unpleasant, but I have a decent place to live, a caring partner, and a faithful dog to keep me company when there’s no human around; so, life is okay.

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.

#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.

I’m also reminded of illness as an equalizer whenever I’m in a waiting room. My health care provider serves the indigent in several counties. I share the waiting room with the homeless and the affluent. People graciously give up their chairs to others in need. People admire each other’s children. They engage in friendly small talk. We know we’re in this together.

#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.

People have lots of advice for me regarding my health—from the reasonable to the absurd. Like most of us, I was raised to please others and so I used to feel an obligation to follow their advice just to please them. In retrospect, that’s quite amazing: I’d follow someone else’s advice just to please them even if my mind and body were telling me it wasn’t a good idea. Finally, I’ve 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. Don’t get hooked into believing you always have to “think positively.”

This is known as 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, even though I’ve received dozens of private emails telling me otherwise.

As for those “I’m-not-feeling-positive” moods, people in excellent health get blue and frustrated and disappointed, so of course we do too. Our “not-feeling-positive” moods can be particularly intense though, because they often center around the frustration and hopelessness we feel about our medical condition. One of my triggers for a down and out mood is a day when I wake up feeling just plain weary of being sick.

At least moods, like the weather, 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, like I wait out a rainstorm—perhaps by cuddling with my dog or making my favorite hot drink or watching a movie on TV (or all three at once!).

#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.

Some of you are familiar with the writings of Pema Chödrön. Many years ago, I listened to a cassette tape of one of her talks (those words “cassette tape” tell you how long ago it was!). She was discussing one of the “slogans” that are part of a well-known teaching in Tibetan Buddhism called the Seven Points of Mind Training. This is the slogan: “Give up all hope of fruition.” I have my own interpretation of what that means: “Give up striving for enlightenment” or something along those lines. But here are the very words Pema spoke to interpret the slogan:

Give up all hope of fruition.

Give up all hope.

Give up.

Give.

I’ve never forgotten her words. I certainly had no idea that this was the direction she was going in with that slogan! But that simple word “Give” takes me out of my self-focused thinking—“How can I get enlightened; How can I find unlimited peace”—and turns my attention to others. And when I do that, I feel better. My body may still be sick, but life now has purpose for me. Giving can take the simplest form: a short email to someone or a supportive comment on Facebook.

It doesn’t take much to brighten another person’s day.

© 2013 Toni Bernhard http://www.tonibernhard.com

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3 thoughts on “Toni Bernhard: 12 Tips from 12 Years Sick

  1. You have written that so well. The part about your dog really touched home. I took in my runt-of-the-litter not realising that my illness and my attitude to said illness was making her worse. It’s only since I’ve moved and now have a few good days if I’m lucky that I can see the affect that has on her. She blossoms. This life is not easy. I too have Tony’s book but am yet to finish reading it. I’ve been busy at Uni but today I’m so tired it’s tiring just to lift my arm. However reading this has lifted my spirit. Thank you 🙂

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  2. Hi Elizabeth, I read that book too and liked it a lot. I feel like she explains the emotional and coping challenges that we have to deal with better than anyone. I’ve tried to get others to read it, but some are put off by the Buddhist aspect. I kept telling them, “you don’t have to become a Buddhist to get benefit out of this book,” but alas… no dice. Their loss…

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  3. […] take my first-born pup, Bowie, for walks in the cemetery. It was our private, quiet time together. As you all know, he is very sensitive and has been severely affected by my ME. He is depressed and nervous and […]

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