When I was diagnosed with CFS in 1997, I functioned at about 25% of my pre-illness level. Over a period of four years, I gradually returned to a normal life and consider myself to be recovered. I have an activity level comparable to that of other people of my age and no longer experience CFS symptoms, except very mildly on occasion. My improvement was gradual but steady, about one or two percent a month until I got back to 90%, with further improvement since.
The path I followed was an unconventional one. Believing that there was little help available from the health care system, I adopted a self-help approach that excluded medications and instead focused changing my habits and behavior. Believing that my body wanted to get better and that it was my responsibility to create the conditions that made improvement possible, I began a process of observation and change. I studied my experience to find those things that helped me feel better and then changed my life to live more consistently in a way helpful to my body.
My approach combined two factors that might seem incompatible at first glance: acceptance and hope. By acceptance, I mean that I acknowledged that my life had changed for an extended period of time and perhaps permanently. Acceptance did not mean resignation, but rather a recognition that illness forced me to lead a different life,
At the same time I had hope. I was confident that through changing my daily habits and routines I could find things to help me feel better. I did not know whether it was possible to recover, but I believed that I could reduce my discomfort, reduce uncertainty and regain some control over my life. I did not expect a quick solution. Rather I recognized that self-management was a way of life. I believed that listening to my body and responding to its needs gave me the best chance for improvement.
My path was one of trial and error. At the beginning, I didn’t know my limits or what would help. Some things I tried worked, but others didn’t. I believed that whatever the outcome, I could learn from my experience. And I often learned more from the experiments that turned out differently than I hoped. Keeping records, which took only a few minutes a day, helped me to recognize connections between my actions and my symptoms, thus making my experiments more efficient. Once I understood my limits, my records helped me live more consistently within them by documenting the price I paid when I lived outside my “energy envelope.”
I also recognized that my approach had to address the complexity of my illness. Not only did I have several symptoms, those symptoms each had multiple causes. Also, my illness affected, and was affected by, many other parts of my life. For example, my illness created more stress, and stressful situations worsened my symptoms. Becoming aware of these interactions showed me that I would have to think comprehensively about my life and use many strategies.
I offer this account of my use of self-help and lifestyle change in the hope that others might find both encouragement and practical strategies in this description of how I used behavioral change to recover from serious illness.