"Have a positive attitude." How many times have we heard that one? While our emotions can not cause fibromyalgia or chronic fatigue syndrome, they no doubt affect our symptoms. But how can we maintain good thoughts when our bodies feel so lousy? This challenge, of course, does not pertain exclusively to chronic illness, but to any time when things do not go as we wish. But in the case of ongoing illness, seeing the positive presents a continuous struggle.
Yet our moods are not perfectly correlated with our physical state. Most likely we can all recall times that despite much pain or fatigue, we were able to cope and even achieve high spirits. Perhaps the weather was perfect, good friends visited, we just accomplished something or helped somebody, making us feel good about ourselves. Other times, depression seems to take hold even when our physical discomfort is at a manageable level. Why is this? Answering this question is the key to finding optimism.
To me, the vicissitudes of fibromyalgia feel like a swim in the turbulent sea -- sometimes it seems we have fallen and the waves continue to crash on our heads, as we fight to rise, only to be knocked down yet again. But that same ocean sometimes allows us to find a wave we can ride smoothly to the shore.
What can we do when we feel under the waves? How can we find the strength to climb back on top, and the patience to know that we will? Here are ten cognitive exercises I use to maintain the most positive attitude I can:
1. Expect bumps! It is important to acknowledge that we will sometimes feel down. Who wouldn't in our condition? But by expecting rather than dreading down time, such periods become more tolerable. In addition, recognizing that we will have blue periods helps keep them in perspective. We will be able to say to ourselves, "I was depressed before, and got out of it; this time, too, it will pass." It is easy to forget that before our illness, there were times we felt down. Now these periods are wrapped up in our medical problems; but everyone gets depressed some of the time. After accepting that we will sometimes feel sad, and even experience self pity, we can concentrate on ways to shorten these periods and make them fewer and farther between.
2. Track the changes. Keeping track of moods helps put ups and downs into perspective. During your best times, make a conscious attempt to capture the feeling. Leave notes on your wall attesting to the way you feel. Living with chronic illness easily creates a Jekyll-and-Hyde persona, where your optimistic self and your flare-up self are not sufficiently acquainted. When we feel bad, it becomes quite difficult to imagine that things can be otherwise. Similarly, during times of improvement, it's amazing how quickly we may forget how bad a previous period was, making subsequent flare-ups not only intolerable but shocking. Counting and measuring the duration of the bad times -- as well as the good ones -- can put them into perspective. It may be that over time, our worst occurs about once a month, although it feels much more frequent. This knowledge is empowering, because we can remind ourselves that a bad flare is, for example, our monthly temporary setback, and find ways to ride it out until our baseline returns.
3. Stockpile fun distractions. We all need to keep lists handy of the things that make us happy. One of the cruelties of our condition is that when we need distractions most, we are least equipped to seek them out. For this reason it is important to compile a list of our favorite activities when we are feeling optimistic to be used when we most need them. People with fibromyalgia often describe how even their worst pain can be put on a back burner, so to speak, when they become engrossed in an activity. This is not only a psychological but a physiological response: our brains can only process so much input at once. When we are engrossed in a beautiful movie, talking to a good friend on the phone, or listening to our favorite music while lying on a heating pad or in the bathtub, we can trick our pain receptors into leaving us alone! Meanwhile improvements in spirit have an added impact on our entire well-being. Laughter is good medicine; while dwelling on our troubles tends to compound them.
4. Shape your perspective. Is the glass half empty or half full? Perspective determines, quite literally, how we view the world. Having a chronic illness creates an ambiguous construction of reality for us. Am I, for example, a successful cripple or an unsuccessful professional? In American culture, much emphasis is placed on independence, individualism, and achievement. Through this lens, developing a condition that makes us feel more dependent and less productive is likely to be a huge disappointment. Yet as we get older, it becomes more likely that we, or somebody close to us, will experience debilitating problems. People are often forced to adapt to sudden, new conditions by adopting a perspective that accommodates change. Our perspectives are shaped by the comparisons we make and the expectations they create. Consider, for example, the immigrant who had been practicing medicine in his home country, but flees to the US to escape a repressive political regime. Here he works as a janitor; after years of medical study, he has lost a prestigious and rewarding occupation. Yet he is thankful for the opportunity to work and wakes each day driven by hope, perhaps, of a better future for his children. Yet his difficulties are also quite apparent. What keeps his spirits up and makes him thankful rather than bitter? His perspective.
5. Create a new self. If we hang on tightly to the "old self" we were, finding the value of our "new self" becomes increasingly difficult. (We may even exaggerate how fit that person was: "I didn't need any sleep, I never felt bad, I could do anything!"). This does not mean we should totally discard our previous conception of self; rather, we need to find a way to integrate the two. In other words, we should seek to find in our new bodies new ways to enjoy and experience the things that we had done before. Consider all the aspects of yourself that you like, and the things that you most want to do; then step by step, find ways to achieve as many of these as you can. At the same time, recognize that our expectations must shift so that we can once again meet them.
6. Don't forget the good stuff. While the physical symptoms of fibromyalgia can feel all-encompassing, there are other parts of our life--our social relationships, passions, family -- that also exist. By focusing on the positive aspects of our life, we become more aware of how many there are: the friends that stuck by us, the things we still enjoy, and the accomplishments we have been able to make, however small, under very different conditions. Because each task now represents a challenge, we should celebrate whatever we manage to accomplish. As we have been told many times, if we shorten the list and pace ourselves whatever we do eventually adds up to something to be very proud of.
7. "Oy, it could be worse." (The Jewish mantra). As comparisons shape our view, it is helpful to find comparisons that will provide a fuller appreciation for what has befallen us. OK, the "eat because children are starving in (fill in the developing country)" did not work for you as a child. But try to think of it this way: Many bad things happen in the world. The odds are that some of them will happen to us. Not because of anything that we have done, but because, as the saying goes, shit happens. It takes only a short view of the evening news to remind ourselves of the horrors occurring every day. So, this is what has happened to us. We too were caught. Let us examine what we have: (a) We know our condition is not terminal, so we need not begin contemplating our pending mortality. (b) As bad as we sometimes feel, our underlying condition is not going to get worse. We have already experienced the worst, and, to our credit, have gotten through it. (c) Although few people achieve permanent remission, many improve significantly. As we understand how our actions and emotions influence our general well-being, we can find ways to partake in more and more activities.
8. Keep the hope alive! There is so much room for hope. It has only been since the 1990s that our condition has acquired any legitimacy from the medical community. We are in a far better position than the generations before us who suffered without ever receiving validation. We know much more about the important roles of exercise, medication, stretching, pacing and meditation to bring relief and a sense of control. Furthermore, as medical research increases, it is only a matter of time before better therapies (and perhaps even a cure!) are introduced.
9. Lean on me! A single most important predictor of how we do is the support network we create. We certainly appreciate what it means when someone helps us when we feel especially lousy. Make sure that, within your means, you continue to be a good friend to those you care about. We still have lots to give. During a good moment, write to a friend that you are thinking about her. Help your family and friends find ways to maintain their relationship with you. Invite them to your place to eliminate traveling (and do not worry what your place looks like! They came to see you, not your housecleaning abilities). Try to be open with family members, while at the same time supportive of their needs. Put yourself in their shoes as often as possible -- it can be scary to have someone you love be sick! Also make sure to seek help outside of your immediate circle so as not to drain your closest friends and family. There are now all sorts of support groups, both live and in virtual computer space.
10. Indulge whenever you can. We have lots of time to focus on our thoughts. Most people do not have the luxury of taking time to relax and think. OK, we did not ask for these "time outs." They are demanded by the needs of our bodies. Nevertheless, we have control over how we use this extra time. Instead of dwelling on what our bodies are not doing, give your fantasy full liberty. Turn these rest periods around to be indulgent time. In our mental playground, we can practice dance steps we used to know (for there will be some times we can dance!). We can use the time to think through problems we face and how we want to spend time when we are feeling ready, or we can analyze a movie we recently saw, say prayers, or mentally write a letter to a friend. The article you are now reading is a product of a spell in the middle of the night, when I lay in bed, unable to sleep. After taking steps to make myself more comfortable, I decided to think about what I would write next. I figured that if I fell asleep, great! But if not, I'd have thought through my next article. It was about this point when I, satisfied, went off to dreamland.
Deborah A. Barrett has a Ph.D. in Sociology from Stanford University. Since then she has worked as a postdoctoral fellow at University of North Carolina at Chapel Hill, Emory University, and Duke University.