How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  In addition, educating those I’m closest to eases the emotional distress that accompanies feeling misunderstood. In the middle of Thanksgiving dinner in 2013, I had to get up from the table mid-meal because I was too sick and in too much pain to continue to sit upright. Despite this, I felt okay about leaving without explanation (which meant I didn’t interrupt the ongoing conversation), because I knew that my husband, my son, and my daughter-in-law would know exactly what was going on with me. Although there were others at the table who may have thought it odd that I suddenly disappeared, knowing that these three understood gave me the courage to get up and take proper care of myself — and allowed me to do so without adding mental suffering to the physical suffering I was already experiencing.

  Here are several suggestions for helping family and friends understand what your life is like. If you’re reluctant to try talking with them, I recommend following Alan Watts’s suggestion from the epigraph that begins this chapter: plunge into it. The changes in your life have already taken place, so you might as well do what you can to help those you love “join the dance.”

  Share information with them from the internet or other sources.

  A good way to educate family and friends about chronic illness is to use a third-party source, such as the internet or a book. If you and a particular friend or family member have unresolved emotional issues or conflicts, using a neutral third party to convey important information keeps the focus on the issue at hand — educating the other person about your chronic illness and its effect on your life.

  A quick search of the internet will yield a host of associations and organizations devoted to every conceivable medical condition. Select a few pages to print out, or forward a few links to family and friends. If you have a book that contains information you’d like them to know, buy them a copy or, alternatively, photocopy relevant pages. When you send them what you’ve chosen, I suggest enclosing a short note that’s light in tone but also lets them know it’s important to you for them to read what you’re sharing. To keep it light, you could joke that “there won’t be a test!”

  Communicate in writing.

  Many years ago, two friends of mine were in couples therapy. They were unable to talk to each other about their marital problems without one of them shouting recriminations and the other shutting down emotionally. The therapist told them that, instead of trying to speak to each other about the conflicts in their marriage, they should try to communicate by writing letters to each other. It turned out to be a major first step in healing their relationship.

  If you feel at an impasse with a friend or family member, or simply feel uncomfortable talking to the person in question, consider writing a letter or sending an email. Be sure it’s not accusatory. In composing it, use the word “I” more than the word “you.” Describe your day-to-day life with chronic illness, explain what a difficult adjustment it’s been for you, and convey how much you wish you could be as active as you once were.

  You might also explain that the way you’re going to feel on any given day is unpredictable, and that this means you can’t be sure if you’ll feel okay on a day when you’ve made plans to see other people, no matter how much you’ve rested in advance. In chapter 34 on setting the record straight, I write in detail about this particular misconception: people assume that with enough rest, we can always keep our commitments. In my experience, the hardest concept for most family and friends to comprehend is that we can spend weeks in “full rest mode” before a visit or a gathering but still be virtually nonfunctional when the day arrives.

  I suggest concluding by going over what your friend or family member might expect when the two of you are together. For example, you could say that, as much as you wish you weren’t limited in what you can do, you may not be able to visit for as long as you’d like. In my experience, spelling out my limitations ahead of time is helpful, not just to others, but to me, because it’s much easier for me to exercise the self-control it takes to bring a visit to an end if I’m aware that the person I’m with already knows this is a very real possibility.

  A final point. If you decide to communicate by email, be sure not to click “send” in haste. I recommend that you print out what you’ve written and review and edit it before sending it off. When I read over a hard copy of what I’ve drafted on the computer, I almost always find that the tone isn’t quite right or that it lacks one or more subtle distinctions I was trying to convey.

  Ask an ally to help you educate others.

  If you find it too hard to talk to family and friends about your medical condition, think about whether there’s someone in your life who truly understands what you’re going through. Then ask that person to help you explain to others what life is like for you. Think long and hard before you conclude that there’s no such person in your life. Your ally might be a friend or family member who’s just waiting for you to enlist his or her help.

  Once you’ve found your ally, you could ask him or her to talk with others on your behalf or to be present with you when you talk with them. Having a third party involved like this facilitates good communication; it can magically turn family and friends into careful and compassionate listeners.

  If your ally is present at a gathering with you, ask him or her to be supportive if you have to leave early or go lie down. You could even ask your ally to let you know if you’re “wilting,” as my husband calls it when he sees that I’m pressing on even though my energy stores are depleted. It’s so helpful for me to be prompted by him because going beyond my limitations causes adrenaline to kick in. This fools me into thinking I’m doing fine, but using adrenaline to get by sets me up for a bad crash later on.

  Work on accepting that some people you’re close to may never treat you the way you’d like.

  I used to spend my limited energy going over and over my grievances about how some of the people in my life treated me. “She never asks how I’m doing.” “He never acknowledges my limitations.” “She’s never asked me to explain my illness.” Then one day I realized that the true source of my unhappiness wasn’t what they were saying or not saying; it was my intense desire for them to behave the way I wanted them to. I had thought that the suffering I was experiencing was caused by them, but it wasn’t. It was coming from my own mind.

  The fact is, you rarely know why people behave the way they do. A friend who never shows an interest in being educated about your illness may behave that way because she assumes that if you wanted to talk about it, you’d bring it up. It’s also possible that your medical condition triggers her own fears about illness and mortality, or that she’s too caught up in problems of her own (medical or otherwise) to be able to take the time to educate herself about your health. Just as you can’t force people to love you, you can’t force people to behave the way you want them to.

  When I feel let down by a friend or family member, I cultivate equanimity, mindfulness, and compassion. These three practices stem from my years of immersion in the Buddha’s teachings, not as a religion, but as a practical path for finding peace with my life as it is.

  I recommend that you start with equanimity. With practice, cultivating the evenness of temper that characterizes equanimity can help you feel at ease in the midst of life’s inevitable ups and downs, successes and disappointments. This calm and balanced state of mind paves the way for accepting that some people will treat you the way you want and some won’t.

  I practice equanimity by recognizing that even though it can feel as if I’m suffering because of another person’s behavior, the true source of that suffering is my own wanting mind. And even though I can still feel hurt by a friend or family member’s seeming lack of understanding or interest in my health, I don’t actually know what’s going on in that person’s mind. In the end, my sense of well-being depends on my ability to accept that other people’s behavior rarely conforms to the ideal I’ve mocked up in my mind.

  Mindfulness and self-compassion are also essential tools for making
peace with family and friends whose behavior isn’t as supportive as you’d wish. If you’re angry, frustrated, or hurt — or any combination of painful emotions — first mindfully acknowledge that this is how you feel. Pretending that you’re not feeling what you’re feeling tends to intensify whatever emotions are present, so do your best to fearlessly turn your attention to what’s going on in your mind at the moment. Then allow compassion to arise for any suffering you’re experiencing due to the presence of painful emotions. In my view, there’s never a good reason not to be as kind to yourself as you’d be to a loved one in need.

  Next, reflect on how there are many possible reasons why your friend or family member is not giving you the support you’d like to have. These reasons could be related to his or her own conditioning, life history, and current concerns — and the stressful emotions that can accompany all three. It’s not about you, so remind yourself that there’s no reason to take it personally when someone resists your attempts to educate him or her about your health struggles.

  Finally, work on wishing the best for your friend or family member. More likely than not, he or she cares deeply about you but is simply unable at this point to be present for you in the way you’d like. Understanding that others have their own “demons” can lead to compassion arising for them, even though they’re letting you down. Compassion for others tends to ease your own emotional pain because it takes you out of your self-focused thinking.

  As you experiment with these practices, be patient. Don’t blame yourself if it’s too hard at this point in your life to feel compassion for a friend or family member who is disappointing you. Instead, give yourself credit for having had the courage to plunge in and try.

  My heartfelt wish is that your family and friends will be open to understanding and accepting what life is like for you, but that if they aren’t, you’ll be able to accept them as they are without bitterness.

  2

  Letting Go: A Not-To-Do List for the Chronically Ill

  Wisdom is learning what to overlook.

  — WILLIAM JAMES

  BEFORE I GOT sick, I depended on to-do lists. Every day I’d revise and reprioritize them. Now my life is more about what not to do than what to do. Learning what not to do and then marshalling the discipline not to do it has turned out to be a far greater challenge than making my way through those old to-do lists ever was.

  It’s hard to live day in and day out with “don’t do this” and “don’t do that” directives, especially when they often entail limiting activities that were once a source of satisfaction and joy. In addition, I can feel as if I’m letting people down if I don’t follow their advice, even when I feel certain that what they’re telling me to do belongs on the not-to-do side of the ledger. However, long experience has taught me that all of us fare better mentally and physically when we’re able to muster the courage and discipline to pay careful and caring attention to what not to do.

  Do not spend your precious energy worrying about how others view your medical condition.

  When I first got sick, I wasted a lot of time and energy worrying about what I perceived to be other people’s opinions of why I hadn’t recovered. I’d lie in bed and torture myself with thoughts: “What if they don’t understand how sick I am?” “What if 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 career?”

  I replayed these and other stressful stories over and over in my mind. It took me several years to realize that I felt better mentally and physically when I kept my attention on what was going on right now in my life, instead of spending my time lost in fantasies about what other people might be thinking about me.

  Do not treat discouraging and disheartening thoughts or emotions as permanent fixtures in your mind.

  I can get discouraged at the prospect that I might feel sick every day of my life from now on. When this disheartening thought arises, it’s often accompanied by the feeling that I don’t have the mental strength to put up with one more seemingly endless day of symptoms.

  A few years ago, my husband pointed out that these types of thoughts and emotions invariably make their appearance at nighttime when I’m physically at my worst and that, come morning, life always looks a bit brighter. This had never occurred to me; every time I’d feel discouraged and disheartened, I’d been assuming this was the “new me” — here to stay. But my husband was right, and his observation changed the way I treated these mental states. Now I acknowledge their presence, but I hold them lightly by reminding myself that they’re not permanent fixtures in my mind. They arise simply because I feel so sick at night.

  This new perspective has been tremendously helpful because it also keeps me from allowing these distressing thoughts and emotions to mushroom into full-blown “gloom and doom” stories about my life — from deciding that everyone I love is fed up with my being ill, to telling myself I should throw out all the writing I’m working on because I’m too sick to finish it. Now I’m aware that the trigger for these stressful stories is nothing more than how sick and discouraged I feel at night and that I won’t feel the same way in the morning.

  You might benefit from tracking your thoughts and emotions. Are there certain times of day when you feel discouraged and disheartened? Are there other triggers in your life for distressing thoughts or emotions? Mindful awareness of your thinking patterns is instructive because, without mindfulness, when you’re caught up in unpleasant thoughts or emotions, you’re likely to feel as if they’ll last forever. By contrast, when you’re feeling good, you tend not to notice because you’re just enjoying the moment. Thus you can sometimes feel as though stressful thoughts and emotions dominated your day when, in fact, you experienced a range of mental states.

  Discouraging and disheartening thoughts and emotions are part of the human experience, and both are impermanent. So when they come to visit, there’s no reason to worry that they’ll take up permanent residence in your mind. Like all mental phenomena, they blow in and blow out — just like the weather.

  Do not ignore your body’s pleas to say no to an activity.

  It’s hard to turn down participating in activities that make us feel more like the healthy people around us. When I break this rule, I feel like a rebellious child, shouting at my parents, “Look at me! I can ride a bike with no hands!” A rebellious activity can take many forms. It could be staying up too late. It could be doing too much housework or gardening. It could be engaging in exercise that’s too strenuous. It could be shopping with friends for too long at the mall. It’s easy to go beyond our limits when we’re chronically ill, partly because adrenaline kicks in and convinces us that we’re doing fine. Unfortunately, when that adrenaline wears off, a “crash” is invariably in sight.

  One of my most recent bouts with ignoring my body began innocently enough. Two friends were kind enough to coach me in learning qigong. I learned movements with intriguing names, such as “Against River Push Boat” and “Huge Dragon Enters Sea.” Then came “Ancient Tree Coils Root.” You are to imagine that you’re a strong tree, sending roots down into the ground. Unfortunately (for me), you execute this by pointing the tips of your fingers toward the ground, putting your weight all on one leg, and then squatting down on the knee of that leg.

  For the first few months, I put the “one leg” instruction on my not-to-do list. I stood on two legs and squatted down only partway. I was listening to my body. Then one day, I decided I wasn’t progressing fast enough, so I picked up one leg and went all the way down on the other. My knee went “crunch” and for several months afterward I was limping and had knee pain to add to the symptoms of my illness. Why did I ignore my body? I was frustrated by my limitations, and so I rebelled.

  Is it ever okay to say yes to an activity when your body is saying no? Each of us has to answer this for ourselves; for me, the answer is yes — on special occasions and with ful
l knowledge that there may be payback. This is a difficult decision to make; I’ll discuss it further in chapter 7, “Dealing with Tough Choice after Tough Choice.”

  Do not undertake a treatment just to please whoever is pressuring you to try it.

  People have lots of advice for me regarding my health — from the reasonable to the absurd. I used to feel obligated to follow their advice just to please them. In retrospect, that’s quite amazing: in order to please someone, I’d follow his or her advice even if my mind and body were telling me in no uncertain terms that it wasn’t a good idea.

  Both my body and my pocketbook have suffered as a result of having ignored this not to do directive. People can be very persuasive, especially if they claim that a treatment cured them. However, from years of hanging out on internet health sites, I’ve learned that for every prescription medication, every dietary supplement, and every alternative treatment (Western and Eastern), I can find people who say it worked, people who say it didn’t make a difference, and people who say it made them worse.

  I still experiment with new treatments and I intend to keep doing so, but I no longer try something simply to please the person who is pressuring me to try it. I do my own research and I consult with people I trust, including my primary care physician. For this reason, I’m happy to report that I did not follow the advice of someone who was sure I’d be cured if I’d only jump in a cold swimming pool of water every morning for six months!

  Do not be angry when people in your life don’t respond as you’d like.

  It took a while, but I’ve finally learned that feeling angry toward people who don’t act the way I want them to serves no constructive purpose. It doesn’t make me any less sick, nor does it change the other person’s behavior. A huge burden dropped away from me the day I stopped expecting everyone to treat me the way I wanted to be treated. And the day I stopped directing anger toward those people was the day I began to find a measure of peace in this unexpected turn my life has taken.