How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  I’ve worked hard to find a measure of peace in the midst of feeling misunderstood. On the one hand, I’ve learned that expecting everyone to understand what my life is like sets me up for disappointment and unhappiness. On the other hand, I’m not content to always be a passive onlooker, letting misconception after misconception go unchallenged.

  And so I’ve tried to find a middle ground. I take action to educate people about what life is like for the chronically ill and for me personally; at the same time, I work on not being attached to the results of those actions. I keep in mind that sometimes I’ll succeed and sometimes I won’t. This is an equanimity practice. In the context of misconceptions and misunderstandings about chronic illness, equanimity refers to being aware that not everyone will understand what life for us is like. In fact, not everyone will even be willing to make the effort to understand.

  This is the way people are and always have been. It doesn’t mean we should abandon our attempts to dispel the many misconceptions about life with chronic illness, and yet, even as we do that, we can work on acknowledging without bitterness that we won’t always succeed. The more we can ride our disappointments with an even-tempered acceptance, the better chance we have of finding peace of mind with our circumstances.

  Groucho Marx famously said that he wouldn’t want to belong to a club that would have him as a member. Well, membership in the club of the chronically ill is neither voluntary nor planned. One day I wasn’t a member; the next day I was. My task is to make the best of the life I’ve been given, while at the same time doing what I can to turn these common misconceptions into uncommon ones.

  35

  What the Chronically Ill Hope Others Will Understand

  One of the most beautiful qualities of true friendship is to understand and to be understood.

  — SENECA

  I KNOW WHAT I hope the people in my life will understand about me. What has surprised me is that, of the thousands of people who’ve written to me about living with chronic illness, almost every one of them has the very same wishes.

  This chapter is written out of love for my family and friends, and with deep appreciation for everyone who cares about those who suffer from chronic illness.

  We can feel as if we’re letting you down even though you’ve repeatedly assured us that we’re not.

  I could fill a notebook with examples from my own life, but I’ll restrict myself to one. I have a weekly commitment so see my friend Richard for a short visit at a local café. I go there instead of inviting him over because I think it’s good for me to get out of the house. He’s assured me many times that any day I’m too sick, I should cancel — even at the last minute — and he won’t feel let down. I believe him. He’s the type of person who wouldn’t say it if he didn’t mean it. Despite this, I always feel as if I’m failing him or disappointing him when I cancel. This is completely irrational on my part; even so, it’s how I feel.

  A few months ago, I woke up one day and knew immediately that I’d have to cancel our visit. I dashed off an email to him, and we rescheduled for the next day. But the next day, I was no better. He would have wanted me to cancel again, but I didn’t. Instead, I dragged myself to our usual meeting place because I couldn’t shake the feeling that I’d be letting him down if I cancelled again, even though, as I’ve said, I believe him when he says that I would not be.

  On my way home from our visit, I realized that I was holding myself to a higher standard than I’d impose on any of my friends who were chronically ill. If I had a date with a friend who was sick or in pain, I’d feel the same way Richard feels about me — I’d want that friend to cancel. And yet I had insisted on pushing myself beyond what my body could handle. It would have been an act of self-compassion to have cancelled that day. I’m aware of that now, and I’m trying to change.

  We may apologize for being sick and for being in pain even though you don’t want us to.

  I’m surprised that after so many years of being sick, I can still find myself apologizing to people for not being able to do things and for the ways my illness has affected our relationship. I apologize even though they’re not expecting me to and even though they don’t want me to. Again, this is irrational, but I still do it.

  In 2013, our friend Nhi drove two hours from San Francisco to go out to lunch with my husband and me. When she arrived, I was too sick to go. I told her that she and my husband would have to go to lunch on their own and that I’d visit with her for a bit when they returned. I told her this — but not before profusely apologizing for not being able to go to lunch.

  Nhi knew when we made the plans that I might not be able to go, but she was willing to take the risk anyway. She used to be our neighbor, so she’s seen me at my worst. In fact, she’s only known me as a person who struggles every day with chronic illness. She didn’t expect or want an apology, but I issued one anyway.

  When my son Jamal and his family come to spend the day with us, there’s no need for me to apologize when I have to retire to the bedroom. But I do anyway. My husband is so used to my unnecessary apologies that he can look at my face and sense that one is on the way. More than once, before I’ve been able to get the words “I’m sorry I got sick” out of my mouth, he’s already saying, “You don’t need to apologize. It’s not your fault that you’re sick.”

  I’ve decided that it makes me feel better to apologize. It’s my way of saying, “I know that the effect of this illness on our relationship and on my inability to participate fully in whatever you’re doing is no fun for you either.” So to those who care about us: please forgive us for apologizing so much (there I go, apologizing for apologizing!).

  Talking about our health can be uncomfortable for us.

  The state of my health feels like it should be a private matter, even from those I feel close to. Most people keep the intimate details of their lives private. Why not chronic illness? The answer is that most of us don’t have the luxury of keeping our medical conditions private. We have to explain to people why we can’t do this and why we can’t do that; why we have to cancel plans at the last minute; why we have to suddenly sit down or leave a gathering early. And so, instead of keeping this intimate part of our lives private, we’re forced to talk about it.

  In addition, some chronic illnesses have symptoms that are embarrassing to talk about, such as Crohn’s disease or irritable bowel syndrome. As I mentioned in the previous chapter, I suffer from a painful bladder condition called interstitial cystitis. I try to keep it private, even from those I’m closest to. I’m not comfortable talking about how the walls of my bladder can feel as if they’re allergic to urine. And yet sometimes I have to share that I have this condition so I can explain some of my peculiar behavior, such as why my first priority upon entering a building is to figure out where the nearest restroom is.

  Finally, the economic consequences of chronic illness feel as if they should be private. I know many chronically ill people who have been forced to move back in with a parent because they’re no longer able to care for themselves, or because they can no longer afford to live independently. Sometimes a parent must move in with a child for the same reasons. These matters feel as if they should be kept between family members, but that’s often not possible. If nothing else, friends need to know where we’re living! Sharing the economic consequences of being chronically ill can be so uncomfortable for us that it can give rise to feelings of shame.

  We may at times be irrational about our health… and our lives.

  Some days, the intensity of my physical symptoms makes it hard for me to think clearly. I can get so discouraged that I blow things way out of proportion. For example, if my symptoms flare one day, instead of waiting until morning to see if I feel a bit better, I’ll panic and announce to my husband in no uncertain terms that this is my new normal. Or if a friend cancels a visit, I’ll jump to the conclusion that she no longer wants to hang out with someone who’s sick all the time.

  Sometimes this irrational behavi
or takes the form of discounting the positives in order to focus on the negatives. If my son Jamal and his family are visiting on a day when I’m particularly sick, I might dwell on how bad I feel about the things we can no longer do together, instead of paying attention to what we can do. Discounting the positives in this way detracts from the good time we could be having in each other’s company.

  I can even do more than discount the positives. I can turn them into negatives! I’m not the only chronically ill person who does this; it appears that the worse we feel physically, the more likely we are to engage in this irrational behavior. For example, I might get an email from a friend who hasn’t written to me in a long time. Instead of feeling good about her gesture, I’ll turn it into a negative experience: “She only emailed me out of obligation, not because she really wants to stay in touch.” It’s my husband who usually has to listen to me transform into a negative experience the simple fact that someone was kind enough to send me an email.

  We know how hard this irrational and distorted thinking is on those who care about us and, yup, we apologize.

  We’re grateful that you accept our chronic illness and have adjusted to it; even so, we hope you won’t forget that we can still suffer terribly, both physically and mentally.

  Several people have shared with me that a friend or relative has started to treat their chronic illness as routine and, as a result, has become desensitized to it. I’ve had this happen, and I’ve decided that it’s understandable. When those who care deeply about us must continually witness the effects of our illness on every part of our lives together, we can’t expect them to always be at their empathetic best. Nevertheless, this doesn’t lessen our concern that the people on whom we count for emotional support will become so accustomed to our being sick and to our being in pain that they’ll forget that our physical suffering and our sorrow can be as intense now as it was when we first became chronically ill.

  In June of 2014, my son’s and daughter’s families met up at Disneyland so that my two granddaughters, Cam and Malia, could spend the day together at the Park. Given where the two families live, it’s rare for all of them to be together like this — so rare that my husband drove from Northern California to Southern California so he could be part of this special day. Thankfully, many people who are chronically ill are still able to travel. Unfortunately, I am not, and so I stayed home.

  I wanted my family to have a wonderful time at Disneyland. Even so, I couldn’t help but hope that they understood how painful it was for me to miss this special occasion. I’m not alone in this wish. We who are chronically ill hope that the people in our lives won’t come to view our medical condition as such a normal state of affairs that they’ll forget to give us that extra hug or once in a while say to us, “I’m so sorry this has happened.”

  The grief we feel over the life we’ve lost may reemerge indefinitely.

  I’ve read several studies that list the most stressful events in people’s lives. Regardless of who conducted the study, certain events appear on every list. Serious illness is one of them. It’s considered a grief-producing event, just as are other major life losses, such as the loss of a relationship due to separation or death.

  Until I became chronically ill, I had no idea that the people I knew who had ongoing health struggles were grieving. Now I know that there’s a lot to mourn — the loss of the capacity to be as productive as we once were, the loss of friends, the loss of the ability to take part in cherished activities, the loss of independence.

  We hope that the people we know will understand that grief comes in waves. It can arrive unexpectedly, throwing us off guard. One moment, we can feel accepting of the changes in our lives. The next moment we can be overcome by sadness.

  In addition, grief can be triggered by a seemingly innocuous interaction. For example, I thought I was done mourning over my lost career. It’s been over a decade since I had to stop working due to illness. Then, one day, a former colleague came into the café where I was waiting to meet my friend Dawn. She sat down and began to describe all the changes that have taken place at the law school where I taught. To my surprise, a wave of grief overcame me, and I had to try hard not to break out in tears in front of her. This was particularly unexpected since, were I to recover, I wouldn’t return to my old profession.

  The words of Sameet Kumar in his book Grieving Mindfully have been comforting to me when unexpected grieving confuses and even confounds me:

  Grief is the process of finding out who you are in a world that is barely recognizable because of the tremendous change that has taken place.

  The grieving process I’ve gone through as a result of chronic illness has been intense at times. Odd as it may sound, it’s been more intense than the grief I felt when my mother died. She lived across the Atlantic from me, and we rarely saw each other. She had a long, good life. I was sad to lose her, and, yes, I grieved, yet it was not the lengthy and deep grieving I’ve gone through over the upheaval in my life due to chronic illness.

  We want to be treated as your equals on the path of life.

  The American mythologist Joseph Campbell said:

  The big question is whether you are going to be able to say a hearty yes to your adventure.

  Whether chronically ill or not, all of us face the challenge posed by his words. Everyone’s life is a series of unique adventures with ups and downs, successes and disappointments, joys and sorrows. I want the people in my life to share with me what’s going on with them — tough times included — so we can help each other say a hearty yes, and so we can say it together, as equals on the path of life.

  36

  “Oh No!”: What the Chronically Ill Hope Others Won’t Say

  One’s dignity may be assaulted, vandalized, and cruelly mocked, but it can never be taken away unless it is surrendered.

  — MICHAEL J. FOX

  THE PURPOSE of this chapter is not to make those whose comments are off the mark feel bad. Even the most well-intentioned people often don’t know how to talk to the chronically ill. This is because we live in a culture that treats illness as unnatural. As a result, people have been conditioned to turn away in aversion from those who aren’t healthy, even though it’s a fate that will befall everyone at some point in his or her life.

  The consequence of taking this unrealistic view of the realities of the human condition is that many people feel uneasy and even fearful when they encounter people who are struggling with their health. I admit that this was true of me before I became chronically ill. Now I find it as natural to talk to people who are chronically ill as I do to people who are the pinnacle of health.

  I hope this chapter encourages people who know someone who is chronically ill to become more mindful of their speech. I also hope it will help those who are sick and those who are in pain feel less alone. I expect that those of you who are chronically ill will recognize many of the comments you’re about to read.

  The first twelve comments have been made to me at least once since I became ill in 2001. They are followed by a collection of comments that other people have sent to me, comments that they said were, at best, not helpful and, at worst, extremely hurtful.

  “You look fantastic!”

  It’s a challenge to respond to comments such as “You look fantastic” or the dreaded “But you don’t look sick,” because we know that the speaker is only trying to be nice. If we respond truthfully with “Well, I don’t feel fantastic” or “Thanks, but I feel awful,” the other person might be embarrassed or think we’re being ungrateful. I admit that I’ve never come up with a satisfactory response to this comment. I usually mumble “thanks” and try to change the subject.

  “You just need to get out more often.”

  One day, my husband and I were at an espresso place and a woman who knows I’m sick stopped and said to me, “You look so good!” My husband politely responded that actually, I was quite sick. When she then said to me, “You just need to get out more often,” I was at a l
oss for words. My husband told me afterward that he wanted to say to her, “You don’t heal a broken leg by going for a hike.” He held his tongue because he thought she might take it as an insult.

  “Give me a call if there’s anything I can do.”

  I’ve been on the receiving end of this well-intentioned comment many times. Not once has it resulted in my picking up the phone. The offer is too open-ended. It puts the ball in my court and I’m not going to hit it back, either because I’m too proud, too shy, too sick — or a combination of the three. I’m not going to call and say, “Can you come over and weed my garden?” But if someone were to call and offer to come over and do it, I’ll gratefully say, “Yes!”

  “I wish I could lie around all day and do nothing.”

  I mentioned this comment in chapter 34. A friend said it to me over the phone; it’s stuck in my mind all these years because it hurt terribly at the time. It may sound as if it couldn’t possibly have been well-intentioned and yet, given the tone of voice in which it was delivered, I’ve decided it was. I’m sure that my high-powered, overworked friend was genuinely thinking, “Lucky you to have so much leisure time.”

  When she said it, I was still so sensitive about being sick — including being worried that people might think I was a malingerer — that tears came to my eyes. I wanted to scream at her, “You have no idea how it feels to be stuck in bed and have no choice but to do nothing!” Instead, I mumbled something and made an excuse to get off the phone because I could feel the sobs coming — which they did as soon as I hung up.

  “Disease is a message from your soul, telling you that something is wrong with your True Self.”