2. I’m Really Sick, Now What Do I Do?
My CFS began as a flu-like illness in the summer of 1997.* My doctor told me that my illness was probably caused by an unidentified virus and would run its course in a few weeks. As the weeks passed, however, my symptoms continued and I began to worry. I was puzzled by the bizarre set of symptoms I experienced: exhaustion, waking up tired after many hours of sleep, difficulty concentrating, a generalized aching throughout my whole body, tender lymph nodes in my neck and a puzzling sensitivity to noise and light.
I was confused further by the fluctuation in my symptoms. On some days, the symptoms were low, giving me hope that the illness was ending. But a day or two later, they were back in full force. The overall trend was downhill and I gradually cut back on my hours at work, eventually stopping work altogether.
For four months, I experienced symptoms without having a name for my suffering. I lived with tremendous uncertainty, wondering what was wrong with me and what my future would hold. Finally, my doctor and I came to a tentative diagnosis of Chronic Fatigue Syndrome or CFS. (The illness has also been called CFIDS [Chronic Fatigue and Immune Dysfunction Syndrome], ME [myalgic encephalomyelitis or myalgic encephalopathy] and ME/CFS.) Getting a diagnosis was both a relief and a shock. I was grateful to have a name for my strange and debilitating symptoms, but staggered by the recognition that I had a long-term illness.
To gain perspective, I spent a few hours later that day reading about CFS in the local health library. That amount of research was enough to convince me that medical resources for CFS patients were very limited. There was no medical cure for the illness and no drugs available to treat the condition.
Rather, patients were advised to try a variety of different treatments in the hope of finding something that reduced symptoms modestly. What one person found helpful might be ineffective with another. Treatment focused on partial reduction in symptoms rather than addressing the cause. It seemed that the best course the medical world had to offer was a series of experiments with different medications in the hope of finding one or more that would reduce symptoms only slightly.
Further, the likelihood that effective treatments would be developed in the near future seemed dim, because there was no agreement on the cause of CFS and very little money was being put into research. I figured it would be at least two or three decades before effective treatments for the condition were available.
Since I wanted to get my old life back, I decided to forego that approach. Rather than experimenting with many treatments in the hope of achieving minor symptom improvement, I decided my best chance for getting better was to observe myself and make changes in the way I lived, to adapt to the illness and the limits it had imposed on me. I felt confident I could find things that would help me.
Earlier Experience with Self-Help
Previous experience helped shape my decision. One important element in my past was work at the Stanford University Medical School for a program that developed self-help courses for chronic conditions. These classes were offered as supplements to regular medical care. Seeing how people had been able to help themselves when living with illnesses like arthritis, cancer, heart disease and stroke had convinced me that how one lives with chronic illness can change its effects and may even change the course of illness.
Perhaps the greatest benefit of my time at Stanford was the idea to ask two questions when faced with a medical problem:
- What help is available from the medical system?
- How can I help myself?
With CFS, the answer to the first question was “not much.” What about option #2? If a self-management approach had been proven to be useful for conditions with well-established medical treatments, it should be all the more important for a condition with no standard or widely effective medical treatment. I asked myself: “where is the self-help class for CFS?” When I couldn’t find one, I started what became the CFIDS and Fibromyalgia Self-Help Program, which was renamed in 2018 to the ME/CFS and Fibromyalgia Self-Help Program. The initial groups led over time to a set of seven different courses and three websites, and provided me with the supportive environment that led to my recovery.
The Medical System and Me
When I decided to respond to CFS by using self-help alone, forgoing experimentation with medical treatments, my decision did not imply a rejection of my doctor. I checked in with him monthly to keep him apprised of my progress and continued to see him for other medical problems. He was supportive of my approach to CFS.
My response was not a rejection of modern medicine in general. When I had cancer earlier in my life, I chose surgery and radiation, and did so for the same reason that I adopted lifestyle change as my treatment for CFS: I thought the path I chose provided the best option under the circumstances. Proven medical treatments were available in the first case, so I used them. Self-help seemed the most promising approach to CFS.
In describing my approach, I do not mean to imply that others should follow the path of exclusive reliance on self-help to treat CFS or that I would have done so in different circumstances. Had my symptoms been more severe, I might have combined a self-help approach with a medical one. In that case, the possibility of partial symptom reduction using medications might have been strong enough that I would have used them as a supplement to behavior change. But under the circumstances I found myself in, I judged that using self-help exclusively offered me the best chance to control symptoms and improve my quality of life. In the chapters that follow, you will read about the things I found that helped me.
*The picture on the home page was taken two months before the onset of CFS, at the end of a hiking trip. For a more recent photo, see the author bio page.