There’s an old adage that encourages us to “write about what you know.” In 1993, I was diagnosed with relapsing-remitting MS. One year later, I also began to develop classic symptoms of chronic fatigue syndrome (CFS): debilitating fatigue, non-restorative sleep, exercise intolerance, persistent low-grade fever, sore throat, and impaired concentration.
At that time, I was completing my M.A. in Behavioral Medicine, at Connecticut College. I developed severe concentration difficulties. Even though I had always been an excellent student, trying to complete statistics was proving increasingly difficult. I had studied statistics previously, at the undergraduate level; I previously encountered no difficulties with mastering the subject matter. In fact, I fell in love with research at that time.
In order to feel more in control of my symptoms, as opposed to controlled by them, I began to actively research CFS. I knew that it was an extremely controversial diagnosis. In fact, a fair number of physicians disputed its very existence as a true diagnostic entity. Many believed that patients who thought they had CFS were simply looking for a physiological explanation for their psychiatric distress.
As a graduate student in psychology, I found this of particular interest. How do patients adjust to a diagnosis that is not even considered to be a legitimate disease? I attended multiple regional conferences that were devoted to CFS, emphasizing both current research results and treatment protocols.
I also joined the board of the Connecticut Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). In 1995, a Manhattan-based neurologist would assert that I had actually been misdiagnosed with MS; she thought that I was suffering from CFIDS, with more pronounced neurological features.
I chose to write my M.A. thesis on adjustment to invisible and invalidated forms of chronic illness. I compared and contrasted MS and CFS along these dimensions. In 1996, I contributed to a book concerning pediatric CFS.
Later that year, I was a doctoral degree student at Albert Einstein College of Medicine/Yeshiva University, Ferkauf Graduate School of Psychology. I was a member of a National Institutes of Health grant, awarded to research CFS. I was cautioned that pursuing this particular area of research would be damaging to my career prospects, given the controversy surrounding this diagnosis. I asserted that this was exactly why I wanted to research this disease!