3. Understanding My Situation

Each person’s experience of CFS is a unique combination of factors that include the severity of CFS, the pattern of symptoms, presence or absence of other medical issues, and the person’s individual life circumstances. Each of these factors can either help promote improvement or make it more difficult. I was very fortunate; my situation was favorable in several ways, each of which supported my efforts to get better.

Illness Severity and Other Illnesses

Perhaps the most important factor affecting a person’s chances for improvement is the severity of their CFS, which varies greatly from person to person. On one end of the spectrum, there are people who have relatively light cases and are able to continue working full time; on the other end, some have very severe cases and are bedbound, with many people in between. The average (median) of people entering the self-help program has been about 25% of normal. I was fortunate to have a moderate case of CFS, one that put me right about at the median.

Another aspect of my medical situation was also favorable. I had only CFS, uncomplicated by other illnesses. Since 1997, I have known several thousand people with CFS and fibromyalgia, most of them through the self-help program. The majority have both CFS and fibromyalgia, or one of them in combination with one or more other serious medical issues, such as sleep disorders (especially apnea), chemical sensitivity, food-related issues (e.g. celiac disease, lactose intolerance) or orthostatic problems (e.g. neurally mediated hypotension).

I was lucky to have only one condition to manage.

Finances and Stability

A third significant factor is a person’s financial situation. I was in my 50’s when I got CFS, old enough to have created a financial cushion for myself. Having financial reserves allowed me to focus on getting better. Also, as a single person with no children, I was financially responsible only for myself. The result of this combination of financial and family circumstances was that I was not stressed by the money pressures that many people with CFS face. Having financial reserves made it easier to do something that my health was forcing on me, namely to quit work and focus on getting better.

Another significant factor is the degree of stability in a person’s life. And once again, I was lucky. Some people are forced to move or have other forms of instability. In contrast, my life was very stable during the first several years of my illness, helping me to avoid stresses faced by some patients whose lives are more turbulent. My financial position enabled me to continue living in my home of 20 years. My most important relationships were stable for some time.

The timing of my illness was also fortunate. In the summer of my fourth year with CFS, my mother was hospitalized twice for major surgery and my father died unexpectedly. As their only child, but having no spouse or children myself, I was their primary caregiver. I had improved enough by then that the stress from these events did not cause a relapse, as it might have a couple of years earlier.

Support

The fifth significant factor for people with CFS is support, from doctors, family, and friends. Again, I was fortunate. I received a diagnosis after having symptoms for four months and my doctor supported my approach of treating CFS using self-management. I also received understanding and support from my family and closest friends. They all accepted my illness as real and agreed with my decision to pursue self-management. Again, I was lucky. Many people with CFS struggle to find understanding and support, and it often takes years even to get a diagnosis.

My living situation also supported my efforts to improve. I lived alone. Although it could be frightening on the days when I was too sick to get to the grocery store, living alone gave me the freedom to organize my life in the way I believed would maximize my chances for improvement. I did not have to coordinate my daily life with that of others, nor did I have to balance daily responsibilities to others with my desire for improvement.

More Good Luck

Finally, I was lucky in two additional ways. First, I adopted a self-help strategy very early. I have met many people with CFS who tried to ignore their illness, sometimes struggling on with their old lives for years, until they collapsed. I took a different approach. As my symptoms worsened in the first few months I was ill, I reduced my time at work in several steps, then stopped working entirely. As I learned later, listening to my body and giving it what it needed was perhaps the most effective strategy possible for responding to CFS, but I did not know that when I made my decision.

Second, I had a case of CFS that allowed for recovery. I have known many patients since 1997 and have observed many different patterns of improvement. Some patients are able to control symptoms by making lifestyle adjustments, but don’t improve their activity level or do so only modestly. Their cases of CFS seem to place a ceiling on how much they can increase their functional level.

My situation seems to be different and reminds me of the experience of gay men in San Francisco during the 1980s. Some never became ill with HIV or AIDS, even though their sexual practices were similar to those of other gay men. After ten or fifteen years, researchers found these disease-free men had a difference in their immune systems that enabled them to avoid infection. Perhaps I had a variant of CFS that allowed for recovery.

In all these ways, my situation supported my efforts to improve. Talk about lucky. It’s as if I had flipped a coin eight times and got eight heads.