Is
Recovery a Realistic Goal?
By Bruce Campbell
(Note: Research suggests that only a few CFS patients recover. Recovery is also rare with fibromyalgia.
In spite of low odds, patients often ask themselves whether they will be among the lucky few.
Here’s how one person grappled with the issue and got a surprising
answer. This article is adapted from the
online book Recovery from
Chronic Fatigue Syndrome: One Person’s Story.)
For
several years after coming down with Chronic Fatigue Syndrome, I
struggled with the question of whether I should aim for recovery. Even
though I knew that recovery was unusual for CFS patients, I had trouble
letting go of the hope that my old life would return. But hoping for
recovery created problems, too. With recovery as my goal, I lived on an
emotional roller coaster, buoyed by signs of progress but devastated by
the inevitable setbacks. I asked myself what other options I had. What
was the alternative to hoping for recovery: resigning myself to a
lifetime of suffering?
Wrestling
with these questions helped me to understand the distinction between
those things I could control and those things I couldn’t. It was clear
that my actions and attitudes had an effect on my symptoms. If I did too
much one day, I suffered increased symptoms the next. If I responded to
stress with worry, that too would make my symptoms worse. I didn’t
remember having such an effect on my symptoms in previous illnesses.
When I had cancer, my recovery depended mostly on the stage of the
illness and the skill of the doctors. But with CFS, my choices and
habits were important. My attitudes and actions affected my symptoms.
But affecting symptoms is not the same as creating recovery.
Reading
an article
by Dean Anderson, a recovered CFS patient, gave me both insight and
inspiration. In an article in the CFIDS Chronicle, he described
his successful eight-year struggle with CFS. Dean had followed a path
much like the one I had adopted, turning away from medical treatments
and instead focusing on what he could do to make himself
better through changing his attitudes and daily routines.
Combining
Acceptance and Hope
He
wrote that after trying various approaches, he had come to believe that
the key to his recovery was a certain kind of acceptance. He described
it not as resignation, but rather “an acceptance of the reality of the
illness and of the need to lead a different kind of life, perhaps for
the rest of my life.” He went on to say that “the 'effort' required
to recover from CFIDS [his term for CFS] is an exercise in discipline
and hopefulness, not determination and striving.” The wrote that the
discipline he adopted was the discipline “to recognize and adhere to one's known limitations
and to follow a strict regimen without periodically lapsing.”
I
found inspiration in Dean’s description of how he combined acceptance
of being ill with hope for a better life. That seemed the right balance.
On the one hand, I felt I had to acknowledge that my life had changed
and that my old life might never return. To live as well as possible, I
had to live differently than before. On the other hand, however, I found
comfort and hope in the belief that there were things I could do that
would bring improvement.
I
finally concluded that whether I recovered was out of my hands. In
reading about CFS and meeting other patients, I decided that possibly as
few as 5% of patients recovered. I believed that there was a limit on
how much I could improve, but that it was impossible to predict what
that limit might be. To avoid likely disappointment, I decided to assume
I was part of the larger group who didn’t recover and to focus on
finding ways to control symptoms and improve my quality of life.
I
was certain that there were many things I could do to improve my
situation. At the same time, I believed that those things that helped me
feel better also could lead to recovery, if that proved possible for me.
In other words, I came to believe that recovery was out of my hands. All
I could do was to create conditions conducive to it. By suspending
expectations about recovery, I could focus on what I could do to make my
life better.
Reminding
myself periodically that I was unlikely to recover served me well.
Ironically, my symptoms seemed to decline whenever I told myself that I
had a permanent illness. So acceptance of the illness as my reality was
crucial. But, also, I believe that hope was crucial to my coping with
CFS and to the improvement I have experienced. I told myself that even
if I couldn't recover fully, there must be things I could do to improve
my life. That conviction was confirmed many times. For example, I had a
belief that I could find the cause of all my relapses and use that
knowledge to prevent future relapses. Over a period of a year and a
half, I significantly reduced and then eliminated my relapses, a process
I described in an essay Minimizing
Relapses.
So,
for me the combination of acceptance and hope was crucial. Acceptance
meant acknowledging that I had a serious illness and needed to lead a
different kind of life. But acceptance was not resignation. I also had
confidence that there would always be things I could do to improve my
situation, even if I didn't recover.
A
Realistic and Positive Goal
Combining
acceptance of CFS with hope for improvement enabled me to resolve my
dilemma of how to have a goal that was both realistic and positive. My
approach was based on a kind of faith, the belief that my body had an
innate drive to reestablish good health. I thought I had two roles in
support of my body: 1) to discover what conditions best supported my
body’s recuperative powers, and 2) to live consistently in a way that
allowed these powers to be expressed. I call this faith because I had to
proceed with little or no reinforcement that I was doing the right
thing. My progress was very slow, one or two percent a month at best,
and there were periods of several months when it was hard to see any
improvement at all.
Another
factor in my recovery strategy was discipline. Like Dean Anderson, I
taught myself to live consistently within my limits, extending my
activity level gradually as permitted by the illness. Just as an
alcoholic must learn to abstain from alcohol and a diabetic must learn
to live in a different way, I assumed that my ability to improve
depended on my changing my habits so that I lived consistently in a way
conducive to improvement. Luckily for me, I had a case of CFS that
permitted recovery.
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