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"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, **** 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.