Is Recovery a Realistic Goal?
By Bruce Campbell
Note: Research suggests that only a few CFS patients recover. Recovery is also rare with fibromyalgia. In spite of low odds, patients often ask themselves whether they will be among the lucky few. Here's how one person grappled with the issue and got a surprising answer. This article is adapted from the online book Recovery from Chronic Fatigue Syndrome: One Person's Story.
For several years after coming down with Chronic Fatigue Syndrome, I struggled with the question of whether I should aim for recovery. Even though I knew that recovery was unusual for CFS patients, I had trouble letting go of the hope that my old life would return. But hoping for recovery created problems, too. With recovery as my goal, I lived on an emotional roller coaster, buoyed by signs of progress but devastated by the inevitable setbacks. I asked myself what other options I had. What was the alternative to hoping for recovery: resigning myself to a lifetime of suffering?
Wrestling with these questions helped me to understand the distinction between those things I could control and those things I couldn't. It was clear that my actions and attitudes had an effect on my symptoms. If I did too much one day, I suffered increased symptoms the next. If I responded to stress with worry, that too would make my symptoms worse. I didn't remember having such an effect on my symptoms in previous illnesses. When I had cancer, my recovery depended mostly on the stage of the illness and the skill of the doctors. But with CFS, my choices and habits were important. My attitudes and actions affected my symptoms. But affecting symptoms is not the same as creating recovery.
Reading an article by Dean Anderson, a recovered CFS patient, gave me both insight and inspiration. In an article in the CFIDS Chronicle, he described his successful eight-year struggle with CFS. Dean had followed a path much like the one I had adopted, turning away from medical treatments and instead focusing on what he could do to make himself better through changing his attitudes and daily routines.
Combining Acceptance and Hope
He wrote that after trying various approaches, he had come to believe that the key to his recovery was a certain kind of acceptance. He described it not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life." He went on to say that "the 'effort' required to recover from CFIDS [his term for CFS] is an exercise in discipline and hopefulness, not determination and striving." He wrote that the discipline he adopted was the discipline "to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing."
I found inspiration in Dean's description of how he combined acceptance of being ill with hope for a better life. That seemed the right balance. On the one hand, I felt I had to acknowledge that my life had changed and that my old life might never return. To live as well as possible, I had to live differently than before. On the other hand, however, I found comfort and hope in the belief that there were things I could do that would bring improvement.
I finally concluded that whether I recovered was out of my hands. In reading about CFS and meeting other patients, I decided that possibly as few as 5% of patients recovered. I believed that there was a limit on how much I could improve, but that it was impossible to predict what that limit might be. To avoid likely disappointment, I decided to assume I was part of the larger group who didn't recover and to focus on finding ways to control symptoms and improve my quality of life.
I was certain that there were many things I could do to improve my situation. At the same time, I believed that those things that helped me feel better also could lead to recovery, if that proved possible for me. In other words, I came to believe that recovery was out of my hands. All I could do was to create conditions conducive to it. By suspending expectations about recovery, I could focus on what I could do to make my life better.
Reminding myself periodically that I was unlikely to recover served me well. Ironically, my symptoms seemed to decline whenever I told myself that I had a permanent illness. So acceptance of the illness as my reality was crucial. But, also, I believe that hope was crucial to my coping with CFS and to the improvement I have experienced. I told myself that even if I couldn't recover fully, there must be things I could do to improve my life. That conviction was confirmed many times. For example, I had a belief that I could find the cause of all my relapses and use that knowledge to prevent future relapses. Over a period of a year and a half, I significantly reduced and then eliminated my relapses.
So, for me the combination of acceptance and hope was crucial. Acceptance meant acknowledging that I had a serious illness and needed to lead a different kind of life. But acceptance was not resignation. I also had confidence that there would always be things I could do to improve my situation, even if I didn't recover.
A Realistic and Positive Goal
Combining acceptance of CFS with hope for improvement enabled me to resolve my dilemma of how to have a goal that was both realistic and positive. My approach was based on a kind of faith, the belief that my body had an innate drive to reestablish good health. I thought I had two roles in support of my body: 1) to discover what conditions best supported my body's recuperative powers, and 2) to live consistently in a way that allowed these powers to be expressed. I call this faith because I had to proceed with little or no reinforcement that I was doing the right thing. My progress was very slow, one or two percent a month at best, and there were periods of several months when it was hard to see any improvement at all.
Another factor in my recovery strategy was discipline. Like Dean Anderson, I taught myself to live consistently within my limits, extending my activity level gradually as permitted by the illness. Just as an alcoholic must learn to abstain from alcohol and a diabetic must learn to live in a different way, I assumed that my ability to improve depended on my changing my habits so that I lived consistently in a way conducive to improvement. Luckily for me, I had a case of CFS that permitted recovery.