I struggled for several years with the question of whether I should aim for recovery. Even though I knew that recovery was unusual for people with CFS, I had trouble letting go of the hope that my old life would return. But aiming for recovery created problems, too. By having recovery as my goal, I lived on an emotional roller coaster, buoyed by signs of progress but devastated by my setbacks. I asked myself what was the alternative to hoping for recovery, accepting a lifetime of suffering?
Wrestling with these issues helped me to understand the distinction between those things I could control and those 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 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, provided both insight and inspiration as I was struggling with this issue. 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 focused on figuring out what he could do to make himself better through changing his attitudes and behaviors.
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." By discipline, he meant the ability "to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing."
I found inspiration in his ability to combine acceptance of being ill with hope for a better life. That seemed the right balance. On the one hand, I felt I had to accept that my life had changed and that my old life might never return. 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. (Note: I don't think the recovery rate for CFS has been determined scientifically, but from knowing several thousand patients, I now believe only a small number return to their previous level of health but many improve in varying degrees.) 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, too, 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, as you'll see in Chapter 12.
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, at best perhaps two percent a month 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 person controlling his weight 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.
The combination of acceptance and hope was the solution to another problem as well, the grief brought by CFS, as described in the next chapter.