Everyone is Different: The Role of Individual Circumstances in CFS and FM

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By Bruce Campbell

(Note: Each person's experience of CFS or fibromyalgia is different. The pattern and severity of symptoms vary from one person to another, and each has his own individual life circumstances. Each factor can either help promote improvement or make it more difficult.

In this article adapted from Recovery from Chronic Fatigue Syndrome: One Person's Story, Bruce Campbell describes how he came to understand his unique situation.)

As I thought about my circumstances, I came to see that I was very lucky. My situation was favorable in several different ways,all of which supported my efforts to improve.

First, I had a moderate case of CFS. I functioned at about 25% of normal when I was first ill, about average for people entering our self-help program. Because of that, I had a shorter road to recovery than those who are more severely affected.

Another aspect of my medical situation was also favorable. I had only CFS, uncomplicated by other illnesses such as fibromyalgia, orthostatic intolerance, sleep disorcers, food issues or chemical sensitivity.

I have known many patients, most of them through the self-help course. The majority have both CFS and fibromyalgia, or one of them in combination with one or more other long-term illnesses. I was lucky to have only one illness.
 

Life Circumstances

In addition to these aspects of my medical situation, several aspects of my life circumstances were favorable. The first was my finances. I was in my early 50's when I got sick, old enough to have created a financial cushion for myself. As someone who had been self-employed, I had set aside money for a "rainy day," savings I could draw on when I became ill.

Also, as a single person with no children, I was financially responsible only for myself. The result of this combination of financial circumstances was that I was not stressed by the money pressures faced by many people with CFS. Having financial reserves allowed me to quit working and focus on trying to get better. 

Third, 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. Some patients are forced to move, but 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. 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

Also, I received understanding and support from my family and closest friends. They accepted my illness as real and agreed with my decision to pursue a self-management approach. The support of a close friend was particularly helpful. We talked frequently about my illness.

Every month, both of us rated my progress on the ME/CFS & Fibromyalgia Rating Scale. The discussions helped me to be more realistic about my progress. Also, her interest in helping me communicated that I wasn't alone in my efforts to improve.

Another positive element in my life situation was that I lived alone. Although I felt frightened on the days early in my time with CFS 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 my responsibility to others with my desire for improvement.
 

Self-Help

Finally, I was lucky in two other respects. First, I adopted a self-help strategy very early. I have met many patients 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. I learned later that 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.

Lastly, I had a case of CFS that allowed for recovery. I have known many patients over the last several years 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 1980's. 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 with HIV. Perhaps there is something in my system that enabled me to bounce back from CFS.

In all the ways just described, my situation was helpful to recovery. I had only CFS, uncomplicated by other medical problems. My illness was moderate in comparison to that of some patients. My life circumstances were much less stressful than those of some patients.

By chance, I adopted an approach that was well suited to my illness. And I had a case of CFS that permitted recovery. I had no control over most of these factors, but I was grateful for them. 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..