Understanding is the first step to acceptance, and only with acceptance can there be recovery. –J.K. Rowling
The issue of recovery is a tricky one for an illness like Chronic Fatigue Syndrome (CFS) or Fibromyalgia (FM). The varying interpretations on the meaning of recovery in CFS/FM can be problematic, and the scientific research on the course of these illnesses is limited.
Regardless of whether a complete abatement of the illness is achieved, patients seem to report almost universally that learning to listen to their bodies and recognize their limits helps them to manage and cope with symptoms.
The Anatomy of Recovery: Hope and Acceptance
The fact that adapting to the limitations of CFS/FM can promote “recovery” certainly does not imply that FM is “all in your head” or that patients can recover simply by changing their attitudes and/or their behavior. However, patients need to know that the fact that there is currently no cure for FM doesn’t leave them completely powerless in improving their quality of life.
An essential part of any journey toward recovery is hope. According to Webster’s dictionary, to hope is “to desire with expectation or with belief in the possibility or prospect of obtaining.” While most CFS/FM patients have experienced feelings of hopelessness and frustration with the lack of a cure for CFS/FM, hope can flourish when you believe that there are things you can do to improve your situation.
Bruce Campbell, Ph.D., a CFS patient who considers himself recovered, is the creator of the CFIDS/Fibromyalgia Self-Help Program, a non-profit organization offering online self-help classes. Before becoming ill, Dr. Campbell worked on self-help programs for chronic illness at the Stanford University Medical School. His approach to his own recovery—and that taught in his program—combines two concepts he says might seem incompatible at first glance: acceptance and hope. Says Campbell, “I acknowledged that my life had changed for an extended period of time and perhaps permanently….I accepted that my focus would have to be on adapting to those limits…[but] 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.”
While we all hope for a cure for FM in the future, it is reasonable to expect that for now we must find other solutions and ways of coping. Medications and self-help strategies may not cure FM, but they can help reduce pain and discomfort, bring about greater stability and improved functionality, and decrease suffering. Knowing that we are not powerless, while maintaining a sense of acceptance and willingness to adapt—perhaps over and over again with changing circumstances—can bring empowerment and hope for the future.
Recovery is about learning that you have a choice: You can choose to be hopeful rather than hopeless: you can choose to act from faith rather than react from fear; and you can choose to enjoy life rather than merely survive it.
FM/CFS patient advocates are quick to point out that these efforts to adapt to difficult life circumstances do not negate the need for a medical solution for these illnesses. Tamara Liller, President of the National Fibromyalgia Partnership, points out that striving to make the most of our lives despite a debilitating illness does not imply that we are complacent or apathetic about the possibility of “a real cure.” Ms. Liller suggests, “Not only is there room for hope, there is also good reason to continue holding policymakers’ feet to the fire and insisting on substantive research on FM/CFS as well as adequate health and social services for patients and their families.”
In the meantime, while we all work toward a cure we can also empower ourselves on the road to our own recovery. Waiting for a cure doesn’t mean that we must wait before beginning to live meaningful and fulfilling lives.
Regaining a Good Life
Unfortunately, there is no prescription or recipe for recovery that every CFS/FM patient can follow with a guarantee of regaining quality of life. The paths to “recovery”—however one defines it—are many and varied, and they are full of bumps and pitfalls along the way. However, it is probably safe to say that anyone who has achieved some degree of recovery hasn’t done so without significant change—whether it be changes in lifestyle, diet, self-care, activity level, spiritually, or even emotional state.
The scientific literature seems to support the idea that recovery through adaptation can improve perceived quality of life. In addition to the studies cited above, which indicated that patients perceive “improvement” despite continuing symptoms, a study investigating the impact of CFS/FM on the daily lives of women in two countries–the U.S. and Sweden (Henriksson, C. & Burckhardt, C., 1996)–appears to support this idea as well. The majority of the employed patients in the Swedish group had reduced their working hours to fit their perceived capacity, while the American group continued to work primarily full-time. Those who reduced their working time were less exhausted during leisure hours and reported higher satisfaction with daily activities.
However, learning to live well with CFS/FM doesn’t just mean doing less; often it means doing it differently. It’s an essential process of developing meaning in your experience and recreating a sense of yourself and your life. Living with a chronic illness like FM allows us to clarify our priorities and redefine our values. Respect for the journey and who we have become brings meaning to our suffering. In her article, “What Recovery Means to Me,” CFS sufferer JoWynn Johns writes, “Gradually, I came to accept the idea that perhaps I never could go back to my old life. I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known before CFS.”
For those with CFS/FM, the process of recovery is, indeed, a process of regaining and restoring—not the old life, but a good life. Through this process we can discover a different kind of fulfillment in our lives, even if we are not able to do all the things we did before. Says Johns, “While it is not the life I once had, I have recovered a satisfying life, a 100% enjoyable life.”
Dr. William Anthony’s work in the mental health field crystallized a definition of recovery that seems particularly applicable to chronic physical illness as well. He describes recovery as “a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness” (Anthony 1993).
Whatever recovery means for you, may you find hope and help on your journey.