5. Is Recovery a Realistic Goal?
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, of which there were many.
Wrestling with these issues helped me to understand the distinction between 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 cancer 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.
Insight and Inspiration
Reading an article by Dean Anderson, a recovered CFS patient, provided both insight and inspiration as I was struggling with this issue. Writing in the CFIDS Chronicle, he described his successful eight-year struggle with CFS. The article outlined a path much like the one I had adopted, turning away from medical treatments and instead 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” [my emphasis]. 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.”
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’m not sure anyone knows the true recovery rate for CFS, but from knowing several thousand people with CFS, I believe only a small number return to their previous level of health, but many improve to varying degrees.) I believed that there was a limit on how much I could improve, but 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.
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 the improvement I 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.
Acceptance and Hope
So for me the combination of acceptance and hope was the key. Acceptance meant acknowledging that I had a serious illness and needed to lead a different kind of life, perhaps for the rest of my 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 fully.
Combining acceptance and hope enabled me to resolve the 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 one or 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.