How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  This is an excerpt from one of dozens of emails I’ve received from people trying to diagnose or cure me. I must admit that I have no idea what the sentence means. Are the soul and the True Self different entities, and the one that is okay is sending a message to the other one saying that something’s wrong with it? Bottom line: This is not helpful. And while we’re on the subject of “not helpful,” another person said she’d help me get my health back — free of charge — by showing me how to perform a “soul retrieval.” Sigh.

  “My sister-in-law’s best friend had what you have and said she got better by drinking bottled water.”

  Little did this speaker realize that it’s just as likely that my own sister-in-law’s best friend had what I have and told me that I could get better if I stopped drinking bottled water! It would be such a relief if people understood that, despite their best intentions, we’re unlikely to want advice on treatments — unless we ask for it, of course. Most of us have spent hours on the internet, researching possible treatments. We know what’s available, and we know what we’re considering. When people offer treatments, especially based on anecdotal evidence, it puts us in a position of having to defend our treatment decisions.

  Another piece of treatment advice that many of us have heard multiple times: “Have you tried sleeping pills?” Sleeping pills? Who hasn’t tried sleeping pills? Even healthy people do. Sleeping pills may be helpful for some people, but they are not a cure for chronic illness. Regarding any comment that starts with the phrase “Have you tried… ”: If it’s available by prescription or as a supplement or even as a Chinese herb, the odds are very high that I know about it and that I’ve tried it!

  “Do you meditate?”

  Yes, I meditate — although, depending on our relationship, this may be an intrusive question. Meditation and other stress-reduction techniques (some of which you’ll find in this book) can help with symptom relief and with the mental stress that often accompanies ongoing pain and illness. However, they are not a cure for a physically based chronic illness.

  “Aren’t you worried that you’re getting out of shape from living such a sedentary lifestyle?”

  Uh… yes. Thanks for reminding me.

  “Just don’t think about it.”

  This comment left me speechless… but still thinking about “it.”

  “Are you eating enough fruits and vegetables?”

  As many as this one body can hold!

  “Have you Googled your symptoms?”

  Let me count the ways.

  “At least you still have your sense of humor.”

  Thanks. Truth be told, however, I’d rather be a humorless healthy person.

  Here are comments that others have written to me about. Many of them were passed on to me by multiple people. I’ve divided them into five categories: Change Your Lifestyle, Such an Easy Life, Chronic Means Chronic, It’s Your Fault, and Religion and other Spiritual Matters.

  Change Your Lifestyle

  1. “Do you take vitamins?” Who hasn’t tried vitamins?

  2. “Just eat more.”

  3. “Just eat less.”

  4. “Are you drinking water?”

  5. “All you need is some fresh air and exercise.”

  6. “Why don’t you go to bed earlier?”

  7. “Why don’t you take a shower? You’ll feel better.” This one hit home for me because I have days when taking a shower has the opposite effect: this simple task uses up all my energy stores for the day.

  Such an Easy Life

  1. “You have such an easy life!” Several people have told me how hurtful this comment is — and how hard it is to respond to without getting angry.

  2. “You’re lucky to have so much leisure time!” Wrote another woman: “Yeah, it’s great to have so much time, but I’m unable to work. This puts me so far below the poverty line that homeless people begging for change probably have more money at their disposal than I do.” Many people who are chronically ill are living below the poverty line. A combination of causes is at work here. They may have been abandoned by their partners; they may no longer be able to hold down a job. Or both. In addition, the chronically ill often have to spend what money they do have on medications and other treatments that health insurance doesn’t cover. Tragically, poverty and chronic illness too often go hand-in-hand.

  3. “I wish I didn’t have to work!” One woman wrote, “It’s like telling someone without legs they’re lucky they don’t have to take the stairs.”

  Chronic Means Chronic

  1. “You’re STILL in pain?” or “You’re STILL sick?” Yes, we’re still in pain and we’re still sick — chronic means chronic!

  2. “Don’t worry, you’ll be able to go hiking again soon.” I’ve had people make similar remarks to me about various activities — from traveling to resuming my teaching career. If you’re not sure what your friend might or might not be able to do in the future, it’s better not to raise it.

  3. “Call me when you feel better, and we’ll go to lunch or do something fun.” Again, chronic means chronic.

  4. “My mother-in-law had that and all she did was take a little Tylenol.” Ah, yes. Tylenol — that well-known cure for chronic illness.

  It’s Your Fault

  1. “You’re too young to be sick.” So many people reported being told this that I’ve devoted a chapter in this book to the difficulties faced by young people who are chronically ill. A young woman went on to tell me: “Oh, how wish I were too young. Maybe by the time I’m in my eighties, people will stop saying it.”

  2. “Get a job, mingle with people, and engage your brain.” A young woman wrote to me, saying: “I’m sensitive about being perceived as lazy. I’m hurt whenever this comment is made to me. I’d love to be able to will myself to do whatever I’d like.” This resonated strongly with me because I spent years trying to will my body back into good health. All I got for my effort was a dose of mental suffering on top of my physical suffering.

  3. “You must be out of alignment with your life and looking for an excuse to make some changes.” The person who reported having had to listen to this comment said, “But some of us really loved our lives before we got ill.” To that, I say, “Absolutely!” I was never happier — personally and professionally — than when I got sick in 2001.

  4. “Maybe if you quit talking about it, you’ll get better.”

  5. “It’s all about your attitude.”

  6. “Just snap out of it.” The woman who reported this comment went on to say: “Like it’s really that simple, and I’m so totally dumb and stupid that I can’t figure it out. How silly of me after so many years.”

  7. “If you think of yourself as a cripple, you will become a cripple.” This most egregious comment was made by a doctor.

  Religion and Other Spiritual Matters

  This is a sensitive subject. We each have our particular religious and spiritual beliefs. Understandably, they may feel essential to our well-being. In my opinion, these matters are so personal that unless you know that the person you’re talking to shares your beliefs, it’s better not to raise the subject. As one person told me: “The assumption that all of us have or even should have identical spiritual beliefs is unrealistic in our pluralistic society. If you’re not sure you’re on the same track, it might best be avoided.”

  Here are some comments that have been directed at those who are struggling with their health.

  1. “God never gives you more than you can handle.” According to those who’ve been on the receiving end of this comment, it’s worse than nonconsoling; it makes them feel like failures — as if they’re not handling well what God thinks they should be handling well.

  2. “God is trying to teach you something.”

  3. “If you pray to God harder and longer, He will cure you.”

  4. “All things work for the Good for those who love God.” The woman who reported this comment to me said this about it: “There’s nothing more annoying than some rand
om Bible quote thrown into your face as a ‘reason’ for chronic pain.”

  Comments about religion, regardless of the speaker’s intent, tend to make people feel as if they’re chronically ill because they’re doing something wrong. For this reason, these comments also belong under the previous heading: It’s Your Fault.

  I recognize that this chapter contains a lot of “Don’t say this” and “Don’t say that” admonitions. My purpose in writing it is to help people understand what kinds of comments are difficult for the chronically ill to field tactfully and skillfully.

  I’ve learned not to expect people to say the perfect thing. In fact, I give them a lot of leeway because, as I indicated at the beginning of this chapter, until I became chronically ill myself, I didn’t know what to say to those who were sick and to those who were in pain. And so if someone’s comment is off the mark, instead of saying something rude in return, I ask myself: “Did they intend to be thoughtful?” “Did they intend to make me feel better?” If the answer is yes, then I try not to take the comment personally, and I respond as graciously as I can.

  If you’re wondering, “So what can I say?” have a look at the next chapter. In addition, the Buddha offered some valuable guidance on skillful speech. He said that before you speak, reflect on whether what you’re about to say is true, kind, and helpful. It’s often easy to meet two of the criteria, but not all three. If you’re in doubt as to whether what you’re about to say is true, kind, and helpful, it’s best to simply not make the comment. Silence (and a gentle hug) can be golden.

  37

  “Thank You!”: What the Chronically Ill Hope Others Will Say

  The most I can do for my friend is simply be his friend.

  — HENRY DAVID THOREAU

  AS A FOLLOW-UP to the previous chapter, I thought it would be helpful to consider what the chronically ill wish others would say to them. What follows are comments that would be music to my ears. Based on what people who are chronically ill have told me, I’m not alone in hoping to hear these words.

  “You look good, but how are you really feeling?”

  Compare this to the first example in the previous chapter: “You look fantastic!” Not only does the word “good” sound more authentic than the overblown “fantastic,” but it would be such a relief to be asked a question that goes to the heart of the matter: “How are you really feeling?”

  “I’m going to the grocery store; can I pick anything up for you?”

  This is helpful, as opposed to the more common “Call me if there’s anything I can do” mentioned in the previous chapter. As I said there, we’re unlikely to take you up on such an open-ended offer; that is, we’re not going to call and ask, “Can you go to the grocery store and get me some dish soap?” We don’t want to make people go somewhere they aren’t otherwise going. On the other hand, if they let us know that they’re already going to the store, that’s a different matter entirely!

  In fact, the more specific an offer of help is, the better. For example, we’d love to hear an offer to do one of those life tasks that backs up for us because we’re not well enough to get to it: take our car for an oil change (we’ll pay for it), rake our leaves, do a load of laundry, even clean the refrigerator.

  “It must be hard to be in pain so much of the time,” or “Not being able to work must be so frustrating,” or “I imagine it’s a daily grind to have to pace yourself so carefully.”

  These comments are examples of “active listening,” a technique I discussed in chapter 18. When you actively listen to someone, you think about how you’d feel if you were in his or her shoes. Then, using your own words, you do your best to feed those feelings back to that person.

  Speaking personally, I appreciate any attempt by another person to see my life from my point of view. For example, every December, my husband, my son, and my daughter-in-law go to a holiday party given by our friends Nhi and Greg in San Francisco. It’s a very festive occasion. I used to feel disappointed and terribly sad that I couldn’t go but, over the years, I’ve made my peace with staying home. Even so, were someone to say to me, “It must be disappointing that you can’t go to the holiday party with your family,” I’d be grateful for his or her effort to understand what life is like for me.

  It’s okay if a person’s words aren’t right on the mark. It’s the intention that matters. All of us — chronically ill or not — want to know that others are trying to understand our lives. I hope that everyone has experienced the sweet relief that comes from feeling heard and validated.

  “How are you holding up? Do we need to stop visiting so you can rest?”

  It would be a blessing to hear someone offer this “prompt.” I’ve lost count of the number of times my body was telling me to lie down, but I didn’t excuse myself. Even if we’re wilting from fatigue or are in bad pain, many of us will try to conceal it because we don’t want to let others down. But an inquiry like the one above lets us know that the person is aware of and sensitive to our limitations. That makes us feel comfortable enough to respond honestly.

  “I miss going out to lunch together,” or “I miss going to the movies with you,” or “I miss going to the mall together.”

  I definitely want to hear a heartfelt expression of how my family and friends feel impacted by this drastic change in our lives together. It lets me know that they value our relationship.

  “Don’t feel bad if you have to cancel our plans at the last minute. I’ll understand.”

  What a relief this would be to hear. I still sometimes force myself to keep commitments even though I’m too sick to do so. Invariably, it leads to a flare-up of symptoms, known in the chronic illness community as a “crash.” I’m better than I used to be about cancelling plans if I’m having a particularly rough day. When I do cancel, I feel less bad about it if those plans were made with one of my “it’s okay to cancel” friends. I treasure them.

  “Would you like to hear about this crazy adventure I had yesterday?”

  Indeed I would! Some people don’t want to tell me about what they’re up to, especially if it’s something exciting. They think that talking about their lives will make me feel bad since I’m so limited in what I can do. Perhaps not everyone who is chronically ill would welcome this type of comment. For me, however, hearing about a friend’s adventure makes me feel connected to the world and adds real-life experiences to what I mostly have to get off the television.

  “I hope you’re as well as possible.”

  This comment is so spot-on to those of us living day-to-day with chronic illness that we just use the initials AWAP when communicating with each other, as in, “I hope you’re AWAP.” Reflecting on this, wouldn’t it be a compassionate comment to make to anyone? Everybody has his or her share of stresses and sorrows — in sickness and in health. And so my wish for all of you is that you be AWAP.

  I hope that if you have a friend or family member who is chronically ill, you’ll take your cue from these suggested comments when speaking to them. And please don’t judge yourself negatively if you feel uncomfortable around those who are sick and those who are in pain. In this culture, most of us have never learned to treat illness as a natural and normal part of the life cycle. I hope that, instead of blaming yourself, you’ll cultivate compassion for yourself over any unease or fear you’re experiencing. With compassion for your discomfort as your companion, set the intention to speak in a kind and helpful way. Then muster all the courage you can and dive on in.

  When I’m not sure what to say to someone who is chronically ill, I start with “I’m sorry” — because I truly am sorry. “I’m sorry that you’re in pain” or “I’m sorry that you’ve been so sick lately.” This is not an “I pity you” sorry. It’s a compassionate sorry. Compassion means “to suffer with.” And so speak in such a way that those you care about feel as if you’re in this together.

  38

  What’s in a Name? The Harm Caused by Mislabeling Medical Conditions

  It’s better
to understand a little than to misunderstand a lot.

  — ANATOLE FRANCE

  LABELS MATTER. We quickly form judgments based on them. If we hear someone described as lazy, the label “lazy person” attaches in our minds even though we may not even have met the person. The same is true for labels given to medical conditions. For example, if the label for an illness includes the word “fatigue,” we abstract from our personal experience and assume we understand how a person with that illness feels.

  Some medical conditions have been named after the researcher who discovered or described them in the medical literature (Alzheimer’s and Crohn’s). Others are named after a famous patient (Lou Gehrig’s disease). The result: instant legitimacy.

  The trend, however, is to name disorders by describing their signs or symptoms. Although this may make sense in some contexts, it can also lead to inaccurate labeling — which, in turn, can lead to harmful consequences. If an illness or pain condition has a trivial-sounding name, people may have their medical problems disregarded by others, including the medical establishment. In addition to the damaging emotional effect of being stigmatized in this way, the trivialization of a medical condition affects the crucial issue of how much research money will be allocated for finding effective treatments and for figuring out the causes of chronic illnesses that remain little understood.

  Rheumatoid Arthritis

  Rheumatoid arthritis is a good example of a medical condition in which a misleading name can lead to negative consequences for its sufferers. People with rheumatoid arthritis are often erroneously lumped together with those who have osteoarthritis. As soon as people hear the term “arthritis” they automatically think of joints that have become painful and stiff due to aging. But those symptoms describe osteoarthritis, a nagging but, for the most part, benign condition that affects almost everyone to some extent as he or she gets old. By contrast, rheumatoid arthritis is a serious systemic autoimmune disease that can occur at any age. Joint pain and stiffness are but two of its many symptoms.