Everyone
is Different: The Role of Individual Circumstances in CFS and FM
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 that supported my
efforts to improve.
First,
I had a moderate case of CFS. Though I functioned at about 25% of normal
when I was first ill, I was slightly better off than the average patient
I have known in the severity of my symptoms. 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, chemical
sensitivity or Irritable Bowel Syndrome (IBS). I have known many
patients, most of them through the self-help
course we offer. 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 that
many CFS patients face. Having financial reserves allowed me to quit
working and attend to the needs of my body.
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 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 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, thankful for circumstances that
allowed for recovery.
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