Chronic Illness and the Meaning of Recovery
How to “recover” from an illness that can’t be cured
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re·cov·er·y (ri-kuhv-uh-ree): noun
–regaining something lost or taken away.
The medical model of illness tends to define “recovery” in very black-and-white terms. It implies a cure, or an elimination of symptoms, in which patients return to their pre-disease (or “pre-morbid,” as it is referred to in the medical literature) state.
When it comes to a chronic illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or fibromyalgia (FM), the issue of recovery is much more complex. Patients who are diagnosed with an illness for which there is no cure may be susceptible to feelings of hopelessness or despair. How can someone recover from an incurable illness? Yet there are many ways to conceptualize recovery that don’t depend on a cure. While the search for a cure focuses on the illness, recovery focuses on the patient.
The varying perceptions and interpretations of “recovery” and the paucity of research data makes the concept a confusing one for those seeking answers to questions about their prognosis. Even the variety of terms used to denote recovery and/or symptom exacerbation, such as remission, relapse, flare, etc. — none of which are consistently defined in the literature — reflects this ambiguity. In the fibromyalgia literature, the concept of recovery is explored more in terms of function than pathology. Treatment interventions that reduce pain and enhance functioning can help patients recover important capabilities, even without being “cured.”
There is very little research data on the clinical course of these illnesses, aside from the often conflicting studies that measure efficacies of various treatments. The few studies that do exist indicate that patients seem to remain stable or improve over time. For example, a longitudinal study undertaken to explore fibromyalgia outcomes with standard medical care revealed that after 3 years, 47% of subjects reported overall moderate to marked improvement, while the other 53% reported either slight improvement, no change, or deterioration.
Researchers have noted the possibility that improvement seen over time could potentially be attributed to patients’ improved coping skills, rather than an amelioration of the symptoms themselves. For example, a six-year prospective study of a group of FM patients revealed that participants’ initial symptoms persisted six years later. Specifically, pain had actually increased, but patients’ evaluation of their overall health and other measures of quality of life had improved. The researchers concluded that while their symptoms persisted without improvement, the patients appeared better able to cope with them.
Another longitudinal study, in which participants responded to comprehensive questionnaires every 6 months for a period of nearly 8 years, revealed a similar pattern. Measures of pain, fatigue, sleep disturbance, and other indicators were markedly abnormal at the beginning of the study and remained largely unchanged over the study period. Yet it was interesting to note that while functional disability had worsened slightly over the study period, health satisfaction improved slightly. Again, this may reflect an improvement in coping skills.
Absence of Illness vs. Adaptation to Illness?
Dr. David Bell, a well-known ME/CFS clinician and researcher, speculated on this paradox between symptoms and perceived wellness in a lecture at a conference hosted by The Organization for Fatigue and Fibromyalgia Education and Research (O.F.F.E.R) in Salt Lake City. As a pediatrician he evaluated and treated a large number of children with ME/CFS following a 1985 “outbreak” of ME/CFS in Lyndonville, NY (where his practice is located). Of the 230 people who became ill in Lyndonville, 60 of them were children.
Bell conducted a 13-year follow-up study of the children he had seen in the three years surrounding the outbreak. Of the 35 who responded, 37% considered themselves resolved of illness at follow-up, 43% considered themselves well but not resolved, 11% considered themselves chronically ill, and 9% considered themselves more ill than during the early years of illness. Despite these seemingly positive outcomes, the answers to more specific questions on the assessment instruments used revealed otherwise. The majority of participants were still struggling with significant symptoms and activity limitations. In fact, four subjects stated they had experienced a “complete resolution of symptoms,” but even these individuals noted moderate to severe symptoms on their questionnaires.
How should this inconsistency be interpreted? “Is this adaptation by denial,” proposed Dr. Bell, “and is this a healthy denial?” Dr. Bell pointed out that recovery in ME/CFS might be more appropriately defined as the adaptation to a disease state, rather than the absence of a disease state. He suggested that the same might be true of fibromyalgia, since the illnesses seem to overlap in so many ways. Said Dr. Bell, “One of the central aspects of the definition of ME/CFS and possibly FM is that reduced energy levels seem to …be precipitated by [over-] exertion. It’s possible that perceived recovery occurs when patients learn not to exceed that level that causes relapse.”
In fact, the self-help literature on ME/CFS/FM abounds with strategies for managing symptoms, working within reduced energy levels, and coping with stress. 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 ME/CFS/FM can promote “recovery” certainly does not imply that it 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 these illnesses 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 ME/CFS/FM patients have experienced feelings of hopelessness and frustration with the lack of a cure, hope can flourish when you believe that there are things you can do to improve your situation.
Waiting for a cure doesn’t mean that we must wait before beginning to live meaningful and fulfilling lives.
Bruce Campbell, Ph.D., a ME/CFS patient who considers himself recovered, is the creator of the ME/CFS & 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, it is reasonable to expect that for now we must find other solutions and ways of coping. Medications and self-help strategies 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. Waiting for a cure doesn’t mean that we must wait before beginning to live meaningful and fulfilling lives.
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.
–Donna Newman
Regaining a Good Life
Unfortunately, there is no prescription or recipe for recovery that every ME/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.
Learning to live well with chronic illness 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. Respect for the journey and who we have become brings meaning to our suffering.
In her article, “What Recovery Means to Me,” 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.”
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.”
Whatever recovery means for you, may you find hope and help on your journey.
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