How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  When I have a medical problem not related to my chronic illness, I’m likely to hide it from others.

  In chapter 7, “Dealing with Tough Choice after Tough Choice,” I raised the ongoing challenge of deciding how much to share with family and friends about our chronic conditions. We may badly be in need of their support, but at the same time we don’t want our medical struggles to negatively impact our relationships.

  So what happens when we develop a health issue that’s not related to our chronic illness? When this happens to me, I confess that, whenever possible, I keep quiet about it. The reason is simple: I’m concerned that the people I care about the most will roll their eyes and silently think, “Another medical problem?”

  I’m aware that this is probably not an accurate assessment of how my family and friends would react. Even so, because it took some of them a while to accept that I’m sick all the time, I don’t want to spring on them that I now have an unrelated issue with my health. So I leave well enough alone, but I also confess that keeping things private in this way increases my sense of isolation.

  Sometimes I envy those who are more seriously ill than I am.

  I know a woman who has a progressive disease that keeps her confined to a wheelchair and affects her ability to speak clearly. And yet she and her husband are able to travel. They visit their children who live out of town, and they go on vacations. In her immobility, in some ways, she’s more mobile than I am; her symptoms don’t keep her confined to the bed or the house. I’ve sometimes envied her even though it’s likely that I’ll outlive her. It’s hard to admit to this feeling but, after all, I am confessing.

  I love my bed.

  I know it’s better not to stay in bed or even on the bed if I don’t need to, but I confess: I love my bed. Aside from its traditional uses, I never realized what a multifunctional, versatile piece of furniture it is.

  My bed makes a great office; it’s where I do all my writing. There’s plenty of space to spread out books and notes, and a laptop fits nicely on my reclined body. In addition, none of the many expensive ergonomically designed office chairs that were provided for me at my other places of work came close to being as comfortable as the combination of my soft mattress and my customized, self-arranged, multi-pillow set-up.

  My bed is also my entertainment and my craft center. I can watch television, including movies and shows on DVD and streamed from Netflix. (And my multi-pillow arrangement is more comfortable than any theater seat I can remember, not to mention that I can take a bathroom break anytime without missing a thing.) I can listen to music and to audiobooks. I can play Scrabble on my computer. I can crochet. So many possibilities!

  And my bed makes a great dog playground: tug-of-war, tickle the tummy. My favorite game is something I call “bed rats” (I don’t know where the name comes from). I jerk my hand around under the quilt and grab at my dog’s paws and legs. She gets crazy happy — barking and wagging her tail, while playfully biting at a hand she can’t see. It’s not so good for the quilt, but it’s a cheap quilt.

  Finally, my bed also serves as the perfect intermediate stopping place for dishes that are on their way from my lap to the kitchen. Cautionary note: bed as dish depository and bed as dog playground should not be attempted simultaneously.

  I’ve become an expert eavesdropper.

  I’m rarely able to hang out in the living room for the entire time that family or friends are visiting. When I retreat to my bedroom, instead of listening to an audiobook or turning on the television, I eavesdrop on the conversation going on in the living room. I’ve even been known to lie down on the rug right inside the bedroom door so as to be able to hear more clearly. Sometimes people are even talking about me — what a bonus! I’m not proud of this new skill as an eavesdropper, but it reflects how hard it is to leave the company of others when I’m having a good time.

  I worry that I’m no longer competent out in the world.

  Sometimes I don’t know what’s appropriate to wear. I have a nightshirt that, to me, looks nice enough to wear in public. The problem is, it almost goes down to my knees, and so I’m concerned that, to others, it looks like the nightshirt that it really is. A few years ago, I bought some footwear online from L.L. Bean called “scuffs.” They sure looked like shoes to me, but the first time I wore them out, someone diplomatically pointed out that I’d left the house in slippers. I’m left wondering two things: just what are “scuffs”? And, in my isolation, has a whole new language for clothing passed me by?

  If I have to drive somewhere, I try to make sure I won’t have to fill up on gas. I don’t understand the new procedure, even though my husband has demonstrated it to me several times. The problem is, there’s always such a long interval between when he last showed me and when I’m the one who needs to put gas in the car that I forget his instructions: Do I swipe my credit card before or after I put the gas in? Which way do I hold the card so as to get a proper swipe? How do I get the nozzle to stay in the tank without holding on to it? How do I take it out without spilling gas all over the side of the car? I’m clueless.

  Then there was the time I took my friend Kari to an early dinner as a thank-you for editing the manuscript for my book How to Wake Up. The bill came, and I took it out of the folder. Looking it over, I was puzzled. I said to Kari, “I don’t see a place to add in a tip.” She politely pointed out that I was supposed to put my credit card in the folder and that, after the server swiped the card, I’d get a new bill with space for a tip. Wow. I used to know that. On a bad day, this worry can escalate into fear that I’ll be treated like a child if I’m not right on top of an interaction.

  I don’t know what groceries cost.

  I’m fortunate that my husband does our grocery shopping. The problem is, he’s been doing it for so many years that I’ve lost track of what things cost. Sometimes he playfully names an item and asks me what I think he paid for it: a quart of milk, a bunch of bananas, toilet paper. I was consistently far off the mark until I figured out a way to beat his game. I make a silent guess at what I think the item would cost, and then multiply the number by four. That almost always gets me close.

  I’m content to be a walking contradiction.

  Walt Whitman famously said, “Do I contradict myself? Very well, then I contradict myself, I am large, I contain multitudes.” 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, I’m sad that I’m sick, but I’m happy that I’m able to connect with others online who understand what this life is like.

  And I can be disappointed and, at the same time, feel okay about my life. In 2012, I was too sick to attend the thirtieth reunion of my law school class, even though it took place in the town where I live. I badly wanted to go, so I was disappointed that I had to miss it. And yet, at the same time, I felt okay about it. Yes, being sick is unpleasant, but I have a decent place to live, a caring partner, and a sweet little dog to keep me company when there’s no human around. So life is okay.

  Making room in my heart for contradictory feelings is an equanimity practice; I feel more at peace when I let them live side-by-side in harmony.

  At times I’d like to trade some of my functionality for a disability that’s visible to others.

  It’s hard to confess to this desired trade-off: less functionality in exchange for not having to respond to “But you don’t look sick.” But there you have it.

  Sometimes I park in a disabled spot as a favor to the nondisabled.

  I have a disabled parking placard. Because I’m able to walk short distances, unless I’m having a particularly bad day, I don’t park in a disabled space. That said, there’s one parking lot in town where it’s usually impossible to find a place to park unless you have that placard. Then I use a disabled space to leave one of the few “regular” spots for the nondisabled — which always makes me feel guilty and alt
ruistic at the same time.

  I listen to audiobooks the way people listen to music they love: over and over and over.

  I’m always being told that I simply must read this new book or that new book. I nod as if I’ll keep it in mind. What I don’t share is that I’m busy listening to A Room with a View for the tenth time, or to an Alexander McCall Smith book for the umpteenth time, or to a P. D. James mystery again even though I know whodunit.

  These aren’t necessarily great novels. They’re just books in which I’ve made friends with the characters. I’m pretty isolated, but these are people I can hang out with. I’d like to help Miss Lucy Honeychurch out when she’s in yet another one of her muddles. I’d like to be on detective Adam Dalgliesh’s crime-solving team. And I’d love to be in Botswana, sharing bush tea with McCall Smith’s No. 1 ladies’ detective, Mma Ramotswe. I have the same relationship to a few movies. Gosford Park comes to mind. I want Maggie Smith to come over and insult me with her acerbic wit. For the privilege, I’ll even play the role of her lady’s maid and dutifully put sliced cucumbers on her eyelids.

  I may have an unhealthy dependence on the internet… and I don’t care.

  When my internet connection goes down, I’m immediately on edge. Then a light bulb goes on in my brain and I think, “No problem. I’ll just Google ‘troubleshooting your internet connection.’” Then I realize I can’t Google anything. Next, I think, “Well, at least I can email a friend in town and see if her internet is down too.” Then I realize I can’t email anybody.

  The last time this happened, with a sigh, I said to myself, “I’ll treat this as an equanimity practice and calmly let things be until the internet comes back up. Meanwhile, I’ll relax by finishing that British TV drama I’ve been streaming on Netflix.” I turned on the television and tried to access Netflix. Nope. Turns out, Netflix only streams when my internet is working.

  These efforts on my part lead me to conclude that I may have an unhealthy dependence on the internet. This reflection is a brief one, however, as it is immediately followed by the thought, “I don’t care. Just get my internet up and running, whoever or whatever you are that’s keeping it from working. And I mean NOW!”

  I don’t shower every day.

  This would have been unimaginable to me before I got sick. But you know what? My skin seems to appreciate it.

  Dresser drawers are my chosen solution for decluttering my living space.

  Do you want less clutter but are too sick or in too much pain to wrap your mind around all those YouTube videos on how to declutter your living space? When deciding what to do with an item, we’re supposed to carefully consider three alternatives: give it away, throw it away, or keep it. And if we decide to keep it, we’re supposed to find its one and only proper place. Well, there’s a fourth alternative: shove it! Yes, out of sight in a drawer is out of mind.

  I cut my own hair.

  No, I don’t know what I’m doing, although I did find a YouTube video on cutting bangs that helped. It also helps that my hair is wavy, so mistakes don’t show unless they’re egregious. I don’t do it to save money. I started doing it because it was more taxing for me to listen to the real-life dramas of the hairstylist I was going to than it was to sit on a chair in front of a mirror and spend forty-five minutes hacking away. Funny thing is, I receive the occasional compliment on my haircut!

  When I’m alone, my eating habits are fit only for my dog to see.

  I’m not sure I want everyone to know this but, when I’m alone, I lick the bowls and plates after I’ve eaten from them. After all, there’s food to be had there, and every dish licked is a dish that’s easier to wash.

  Even when I really want to see people, I’m relieved when they have to cancel.

  The reason is simple: their cancellation also cancels the payback I’ll have to go through as a result of the visit. Because there’s not a day when I’m not sick or in pain, sometimes I’m willing to pay the price that a visit will cost so that I can spend some time with other people. Nonetheless, there’s always a sense of relief when they cancel because then I know I’ve saved my body from payback.

  In the fall of 2013, I committed to a few nearby events so that I could give a short talk on How to Wake Up when it was published. One afternoon, as I was getting dressed to go to an event at my local bookstore, I found myself saying to my body, “I’m sorry for forcing you to do this.” I was taken aback by these words until I realized that, although I’d freely chosen to do this event, if the bookstore had called and cancelled, I confess I’d have been relieved.

  The author of How to Be Sick doesn’t always know how to be sick.

  In January of 2012, I found myself going rapidly downhill. I was waking up feeling more sick than usual, and all day long had intense symptoms. I thought about whether I’d made any changes in my life that might have triggered this downward spiral: a new medication, a change in diet. I couldn’t come up with anything, and so I began to get scared that my “baseline” had gone down a notch or two.

  I tried to hide what was happening from my husband because I didn’t want him to worry. One evening, I could tell that he knew what was going on. I began sobbing and shared with him my frustration and my fears. As we talked, I realized that my worsened condition had nothing to do with any external changes in my life. I had simply stopped taking good care of myself. When getting up in the morning, instead of asking “How can I take care of myself today?” I was asking “How can I push my limits today?” As a result, I was overextending myself in every way: visiting with people for too long, pushing against my naptime and my bedtime, staying on the computer for too long.

  I’d forgotten to follow my own advice on “how to be sick.” Within days of beginning to take care of myself again, I’d returned to my baseline.

  If you’re like me, some days, you’re just plain weary of being chronically ill. I remember seeing my primary care doctor a few years ago for my usual three-month follow-up (fourteen years of “follow-ups” — there’s dark humor to that notion!). As usual, he asked how I was doing. I slowly shook my head and 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 poet Carl Sandburg wrote, “Life is like an onion; you peel it off one layer at a time, and sometimes you weep.” Writing this chapter was like peeling an onion for me. A few of my confessions brought tears to my eyes. I decided to treat them as cleansing tears: this is how my life is, so I might as well face up to it by peeling off the layers and seeing what’s going on. I feel certain that those of you who are chronically ill share most of my confessions. My only regret is that I can’t hear yours.

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  My Heartfelt Wishes for the Chronically Ill

  If we cannot change the way we are, the skill of life becomes learning how to feel deep love and care for what is flowing through our fingers, even while letting it go.

  — ANDREW OLENDZKI

  OF COURSE, my first wish for those of you who are chronically ill is for your health to be restored. For some, this is a realistic possibility; for others, only a distant dream. It’s a challenge to mindfully walk that middle path between being proactive about your health — always trying to improve it — but at the same time, accepting the way you are so that you can make the best of each day.

  And so, although restored health is my number one wish, here are my other wishes for the chronically ill.

  May you accept with equanimity whatever support your family and friends are able to offer.

  When I share with family and friends what it’s like to live with chronic illness, I don’t care if they use the perfect words in response. I just hope for something like “I’m so sorry” or “It must be hard.” Then I know I’ve been heard and believed, and that goes a long way toward making me feel okay about the course my life has taken.

  My wish is that you’ll be at peace with whatever support those you feel closest to are able to
offer. This includes the possibility that some of them may never educate themselves about what you’re going through; I’ve had this happen and, at first, it hurt badly every time. It took me a while to realize that other people’s unwillingness or inability to understand my life is about them, not about me. I hope that if there are people in your life who don’t make the effort you wish they would to understand what you’re going through, you won’t blame yourself.

  A theme that has run throughout this book is that we can’t force other people to behave the way we want them to. Even though it may hurt when we feel let down by others, it helps to recognize that the suffering we’re experiencing is coming from our own wanting minds. It helps because that wanting is something we can work on overcoming.

  In the end, all we can do is put forth our best effort to educate family and friends about what life is like for us, and then, with equanimity, either let them slip out of our lives or, if that’s not possible, work on being content with what they’re able to offer.

  May you find a doctor who treats you as a partner in your health care.

  I hope you have a doctor who isn’t intimidated if you know more about your illness than he or she does. In this internet age, it’s not unusual for people who are chronically ill to become experts on their own conditions. I’m fortunate that my primary care doctor welcomes learning from me and is open to trying treatments that I suggest. In addition, when I have an appointment with another physician, my primary doctor helps me figure out how to explain my illness in a way that maximizes the chances that I’ll get the best care possible. I feel as if we’re in this together.

  I hope you’re able to find a doctor who will work with you as a partner in your health care.

  May you treat yourself with compassion over this unexpected turn your life has taken.

  Chronic pain and illness can turn your life upside down. When this happens, it’s essential to your peace of mind and sense of well-being to avoid getting trapped by self-blame. The best way to do this is to wrap yourself in a protective cloak of compassion.