How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  Do we take medication to relieve disabling pain, or do we stoically put up with it because the medication makes us groggy and less functional?

  I’ve yet to meet anyone who likes the side effects of pain medication; even so, it’s a tough choice: a body in unremitting pain or a mind like silly putty. Neither choice is satisfactory, but we still have to make it. Which choice we make on any given day may depend on several factors, such as what our “have to’s” for the day look like and whether we’ll be spending time with other people.

  Related to this tough choice is the decision of how to allocate pain medication if we’re only given a certain amount each month. Here’s what Carol, who has chronic migraines, said about this:

  Insurance companies limit the amount of pain medication they will give us per month. The problem is that if you get fifteen to eighteen migraines per month as I do, the nine pills allowed must be doled out very carefully. So not only do I have a migraine, I have to assess it: maybe it’s not so bad that I need to medicate… but what if it gets worse? And how many pills have I already taken this month? If I take more than four by mid-month, I won’t have enough to get through to the end… but if I let it get too bad, then the medication doesn’t work as well and I am down and out for a couple of days.

  I’m exhausted for Carol just reading this.

  Do we ignore a new or worsening symptom, or do we have it checked out by a doctor?

  It’s not good for us emotionally to be overly focused on every little ache and pain in our bodies. In addition, we may be concerned that if we raise a new or worsening symptom, the doctor will think we’re being oversensitive or even a hypochondriac — either of which might affect the quality of care we receive.

  But consider this. I read in one of my chronic illness books about a woman who ignored a new symptom. She decided it was best to assume it was related to her chronic illness because she didn’t want to bother her doctor. The new symptom turned out to be stomach cancer.

  An issue that can arise with a worsening symptom is the need to decide whether it’s related to our chronic illness or is a natural part of the aging process. Is that stiffness that wasn’t there a few months ago related to our illness, or is it just a sign that our bodies are aging? Is the sudden need to take a nap in the afternoon an indication that our condition is worsening, or do people simply need to nap as they age?

  The appearance of a new symptom or the recognition that an old one is worsening requires that we make another tough choice: wait or act immediately. Each of us has to listen carefully to our bodies and decide for ourselves. It isn’t easy, that’s for sure.

  Do we ask for help with anything that’s difficult for us, or do we save up our requests and use them only when there’s something we absolutely cannot do?

  On the one hand, we don’t want to overburden family and friends. In addition, we treasure what independence we still have. These concerns incline us toward going ahead and doing what we can, even though there may be some payback later.

  On the other hand, if we’re stingy in asking for help, friends and family might assume we’re able to do much more than we’re capable of: “You were able to go to the store, so you must be able to go to the beach for the day.” Knowing that we might get this kind of reaction if we try to do even the smallest tasks makes us wonder if it wouldn’t be better to always ask for help.

  Do we spend what little energy we have doing necessary things like laundry or even showering, or do we use it to do something that’s nourishing and fulfilling to us?

  I remember facing this tough choice when my newborn son was napping. I’d think: “Great! Now I can do something for myself alone — a hot bath, a good book, maybe even my own nap!” Despite these appealing possibilities, invariably, I wound up doing things around the house that weren’t otherwise getting done — a sink full of dishes, a load of laundry. In the end, I never used his naps for my own enjoyment or nourishment. Now I face this same tough choice again.

  Do we use makeup and the like to cover up how sick we are or how much pain we’re in, or do we let people see how we really feel?

  I face this dilemma whenever I go out. I remember the “back and forth” that went on in my mind as I was getting dressed to go to an event at our local bookstore when my first book, How to Be Sick, was released. I thought, “If I put cover-up on the bags under my eyes and then use rouge and lipstick to hide how pale and drawn my face looks, people might think that the author of How to Be Sick isn’t sick. On the other hand, there will be so many people there whom I haven’t seen for a long time that it will make me feel good to look good for them.” This inner dialogue may sound trivial, but at the time, it was terribly stressful for me. In the end, I compromised and put on some lipstick.

  The question of how to “present” to others is especially a dilemma during the holidays and at family gatherings. If we try to look our best for everyone, we may look so good that we’ll be criticized for not pitching in more with the preparations and the cleanup. The alternative is to stay in our sweats, but this can lead to feelings of guilt that we’re not making an effort to look good around others.

  Healthy people tend to assume it’s all or nothing: people are either sick or they’re not; they’re either in pain or they’re not. As a result, if they see us doing anything “normal,” they assume we’re 100 percent well. As I note in other chapters, this has happened to me many times. Someone will see me at an espresso place with a friend and assume I’ve recovered, unaware that I came from the bed and will collapse back onto it after the visit. People aren’t deliberately being insensitive. They just don’t know.

  Do we push our body to the limit, or do we always play it safe?

  One item on chapter 2’s not-to-do list for the chronically ill was not to ignore your body’s pleas to say no to an activity. I also indicated that there may be exceptions to this rule. Deciding when it would be skillful and self-compassionate to make that exception is one of the toughest choices we face.

  Sometimes the desire to be like healthy people is so strong, I rebel and talk myself into pushing my body to do what it cannot reasonably do. A few years ago, my granddaughter Cam was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides and pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” Ah, the perils of pretending. What I got for my effort was three days in bed with exacerbated symptoms. In retrospect, the skillful choice would have been to listen to my body and not go to the park. Cam wouldn’t have minded. We could have played Go Fish on my bed instead.

  However, sometimes a special occasion arises, and we might decide that pushing our bodies to the limit is worth the payback. In that case, for the good of our emotional well-being, the compassionate choice may be not to play it safe. In April of 2014, I agreed to go on a short vacation to a beach cottage that’s about an hour and forty-five minutes from our home. Our son Jamal, his wife Bridgett, and our granddaughter Cam planned to join us there. This was a big trip for me; I rarely leave town because flu-like symptoms keep me from being out of bed for too long.

  The exertion it took to pack for the trip, followed by riding in the car and then unpacking once we arrived at the cottage, pushed my body way beyond its limit. As a result, I spent most of the four days of the vacation trying to recover from the activities involved in getting there and settling in. I tried to hide how sick I felt, although my family has been around me long enough that they knew anyway. Still, they sensed that I didn’t want my illness to be the focus of the trip and so, taking their cue from me, we didn’t talk about it.

  During the daytime, I let myself be guided by the caring attention of mindfulness. This meant listening to my body, and so, when the family went down to the beach, except on the last day, I stayed behind to rest in bed. Despite these precautions, after we
returned home, my body collapsed for a week, as if it had been doing its best to hold me together for the four days, but couldn’t do it for one more minute.

  The trip and the recovery afterward were a tremendous strain on my body, but I don’t regret going. It was a rare opportunity to spend extended time with my son and his family, even though I know they’d have understood if I’d said I couldn’t come.

  I made this decision freely and fully aware of what I was getting into. But it was a tough choice.

  Finally, on a lesser scale, I also think it’s skillful to gently push our limits now and then so that we don’t fall into a set pattern; our bodies can become so accustomed to a strict regime that we lose the ability to be flexible. For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully vary the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap. I find this constant assessing and adjusting of my schedule to be mentally exhausting. I do it anyway, because I believe it’s beneficial to my overall health.

  What kind of end-of-life choices should we make?

  Many people have written to me about this dilemma. Like me, they worry about finding themselves in a hospital with doctors and staff who don’t understand — or don’t believe — how chronically ill they are. How should we plan for the tough choices we may have to face regarding end-of-life treatment? We’d do well to plan ahead — talk to family, talk to our doctors, draw up an advance directive and have it made into a medical order signed by a doctor — so that as little as possible is left to chance.

  I’ve used the word “exhausting” multiple times in this chapter. It’s no surprise that physical and mental exhaustion are consequences of having to continually assess, evaluate, and choose a course of action while already struggling with chronic illness. Mindfulness can help here. We can remind ourselves to pay attention with care to the pros and cons of each choice. That will slow us down, making it more likely that we’ll choose the alternative that’s most beneficial and compassionate for us at the moment.

  8

  The Many Benefits of Patience

  When we develop patience, we find that we develop a reserve of calm and tranquility.

  — THE DALAI LAMA

  BEING CHRONICALLY ILL involves being a patient. In my experience, one of the essential mental qualities for finding a measure of peace with being a patient is being patient.

  After I became ill, my life-long habitual reaction to delay, difficulty, or annoyance did not serve me well. I’d get angry, or at least irritated — two distinctive features of impatience. My inability to tolerate delay at the doctor’s office, my difficulty coping with unpleasant bodily symptoms, and my annoyance at not being able to regain my health made my new life harder to bear. I found myself face to face with that stark reality: a lot of the time, we simply do not get our way. And yet it’s not the fact that we don’t get our way that makes us miserable; it’s how we respond to that fact. The question becomes, do we get angry and upset, or do we tolerate and accept whatever’s happening that we don’t like?

  Several years ago, I began to make a conscious effort to tolerate and accept delay, difficulty, and annoyance. In other words, I began to practice being patient. I immediately noticed two things. First, being patient was a way of treating myself with compassion. Compassion is an act of reaching out to those who are suffering — including ourselves. I definitely suffer when I’m impatient. I can feel the stress in both my mind and my body. And so learning to be patient is a way of taking care of myself, which is the essence of self-compassion. Second, I noticed that being patient gave rise to equanimity — the even-tempered, peaceful state of mind that accepts with kind understanding that our lives will not always conform to our preferences.

  Seeing the correlations between patience and enhanced self-compassion and between patience and equanimity convinced me that this was a mental state I should cultivate. I began to practice patience by using a four-step approach from my book How to Wake Up. It’s a mindfulness practice for working with stressful and painful emotions.

  Here are the four steps:

  Recognize it.

  Label it.

  Investigate it.

  Let it be.

  Recognize that impatience has arisen.

  This may take practice. You may not recognize that you’re impatient because when things aren’t going your way, there’s a tendency to think that the cause of any anger or upset you’re feeling is external to you. While it’s true that what’s going on externally may not be to your liking — it may not even be fair — impatience as a response is not coming from “out there.” It’s coming from your own mind.

  So start by setting the intention to watch for impatience arising in your mind as a response to things not going your way. You may know some of your triggers already: being put on hold for a long time, getting stuck in a long line, struggling to figure out a computer problem, facing an extended wait at the doctor’s office, having to listen to someone take an interminably long time to explain something simple (this last one is a trait of mine that tests my own family’s patience!).

  In my life, I’ve noticed that impatience arises when people or the environment don’t conform to my expectations, even in circumstances over which I have no control (for example, how long I have to wait to see a doctor). I can think of four ways in which expectations can be out of sync with reality; all four can be triggers for impatience.

  First, we tend to think that the environment around us should conform to our expectations: no traffic jams, no absence of parking spaces near our destination, no long lines, no airport delays, no waiting too long for food to arrive at a restaurant.

  Second, we tend to think that people should conform to our expectations. They ought to behave the way we think they should behave. “That woman ahead of me in the checkout line should not be making small talk with the cashier.” “If he said he’d phone at 3:00, he should phone at 3:00.” Even if we’re “right” (it is polite, after all, to call at the time you say you will), the fact remains that people often don’t live up to our expectations.

  Third, our expectations are often unrealistic when it comes to mastering new skills, whether it’s taking up a new craft or figuring out a new computer application or learning a new language. We expect to be able to master new skills quickly, no matter how foreign or difficult they are.

  Fourth, our expectations are almost always unrealistic when it comes to what goes on in our minds. We think we should be able to control what thoughts and what emotions arise. The truth is, however, unwelcome thoughts and emotions pop up all the time. It’s the nature of the mind to think and to emote; there’s no stopping it. Certainly being impatient doesn’t put a stop to it!

  Try to come up with concrete examples from your own life that fit into these four categories of expectations. This alone can help you recognize that you’re responding to something or someone with impatience.

  Label impatience when it is present in your mind.

  The purpose of using a label is to hold impatience in your awareness so that you can investigate it. The key to successful labeling is to do it nonjudgmentally; it’s hard to investigate an emotion if you’re blaming yourself for its presence. You might say one of the following silently or softly to yourself:

  “Feeling impatient.”

  “Impatience has arisen.”

  “Mind filled with impatience.”

  Investigate how impatience feels in your mind and in your body.

  Get to know how impatience feels. Is your mind calm or agitated? Is your body relaxed or tensed? I have yet to experience impatience as pleasant, either in my mind or my body. And the realization that it feels unpleasant helps motivate me to try and change the way I respond when I’m faced with setbacks or annoyances. Allowing yourself to truly feel the impatie
nce is important because you can’t begin to transform a stressful mental state until you accept that you’re caught up in it.

  Continuing with your investigation, try some strategies for transforming impatience into patience. Start with those times when your environment or the people around you aren’t conforming to your expectations. Perhaps you’re stuck in a traffic jam or you find yourself behind that person in the checkout line who’s chatting with the cashier. Notice if you’re responding with impatience; if you are, try labeling it.

  Next, turn your attention to how impatience feels in your mind and in your body. Then ask yourself, “Is there anything I can do to change the situation that won’t make matters worse for myself or others?” If the answer is no (which it almost always will be), then see if you can find something enjoyable about it by directing your attention to something pleasant or interesting to focus on while you wait the situation out.

  This is a mindfulness practice because you’re making a conscious choice to turn your attention away from the impatience in your mind and onto something else in your field of awareness. When I feel impatience arise, I can almost always find something in my present-moment experience that arouses my curiosity or interest. This can transform impatience into patience.

  If you’re in a traffic jam, that “enjoyable something” might be looking at the different makes and models of the cars around you; it might be beginning to chat with another person in the car; it might be finding a radio station to listen to. If I’m in that checkout line, it might be noticing with amusement the ridiculous headlines on those sensational magazines that sit in racks at the cashier stand; it might be looking at the people around me — how everyone looks different and has a whole life story of his or her own that I know nothing about; it might even be eavesdropping on the content of the chatter that’s holding me up!