Three
Forms of Support
By Bruce Campbell
(Note: This
article is adapted from the online booklet Recovery
from Chronic Fatigue Syndrome: One Person’s Story.)
My experience with Chronic Fatigue
Syndrome taught me that support can come in many different forms, each
of them helpful.
One type is practical help, such as
grocery shopping, housecleaning or driving. Since I had a moderate case
of CFS, I did not need help of this kind very often. Even though there
were times when I was so sick I could not go out of the house, for the
most part I could provide for myself. But my sickest days made me
sympathetic to those patients whose severe long-term limitations make
them dependent on others for day-to-day practical assistance.
Acceptance from Family and Friends
Another kind of support is acceptance.
My family and closest friends believed that I had a serious medical
condition and approved my decision to treat CFS using self-management. Since I lived alone and was financially responsible only
for myself, family and friends were not affected directly by my decision, but
I still appreciated their acknowledgment that I was seriously
ill and their agreement with my approach.
I was especially fortunate to have a
good friend who was concerned about me and willing to offer both
emotional support and an objective view of my situation. We talked about
my illness often and set aside some time at the first of each month to
discuss how I was doing. We each assessed my status using the CFS/FM
Rating Scale, then reviewed my logs for the previous month. I
learned much from the discussions, recognizing patterns I wasn’t able
to spot on my own. Just as important, the meetings communicated that I
was not struggling alone with my illness, but rather that there was
somebody who cared about me and wanted to help me get better. I think
the sessions also helped reduce the sense of helplessness often
experienced by people close to those who are seriously ill.
Support from Fellow Patients
A third kind of support was provided
by fellow patients. Shortly after receiving my diagnosis, I joined two
local CFS support groups. I believed that fellow patients would be great
resources for understanding my illness, since they live with it on a
24/7 basis. I made two good friends, one from each support group. They
were very generous with their time, spending many hours talking with me
on the phone in the first few months I was ill. Talking with them helped
me to understand how serious and debilitating an illness I had.
The support
groups gave me a sense of belonging, a feeling of being connected to
others at a time of confusion and isolation. I found there is something
powerfully healing about feeling understood, all the more so for a
stigmatized disease that many don’t believe is real. Also, fellow
patients were tremendous sources of information and perspective, helping
me to understand CFS much more quickly than I could have on my own.
Models
I experienced a powerful and
unexpected type of support from two fellow patients, neither of whom I
met. Both provided powerful models of living successfully with CFS.
The first was Dean Anderson, who
described his successful eight-year struggle to recover from CFS in an article
in the CFIDS Chronicle. I was inspired by the article the first
time I read it and I returned to it often both for practical strategies
and for encouragement. Dean had
adopted an approach similar to mine. Turning away from medical
treatments, he instead focused on figuring out what he could do to make
himself better through changing his attitudes and behaviors. His
improvement was a symbol of hope to me.
In reading and re-reading his article,
I focused especially on some memorable passages, which I memorized. He
wrote that after trying various approaches, he had come to believe that
recovery might depend solely on his own efforts and 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.”
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. For me, acceptance meant
acknowledging that my life had changed and that my old life might not
return. To live as well as possible, I had to live differently than
before. On the other hand, however, I wished to live in hope of better
days and assume that there were things I could do that would bring
improvement.
The other CFS patient who influenced
and inspired me was JoWynn Johns. JoWynn
contacted me after the CFIDS Chronicle had
published an article
about our first self-help groups. Over the following months, we
exchanged many emails about our parallel approaches to living with CFS.
Like Dean, she had an inspiring story to tell, which she also shared
with the readers of the Chronicle in an article titled
Living Within My Envelope: A How-To Story. Following an approach
similar to Dean’s, she had greatly reduced her symptoms over a period
of several years.
JoWynn taught me a lot about
successful adaptation to CFS. She likened living with CFS to adjusting
to other chronic medical conditions, such as diabetes. She believed
successful adaptation meant changing one’s daily habits and routines.
JoWynn also taught me many specific points about CFS that I used in my
own life, such as the toll taken by mental and emotional events.
My Doctor
My doctor played an important role in
my recovery, even though I never had another medical appointment for CFS
after getting my diagnosis. For some period of time, I checked in with
him monthly by phone, keeping him apprised of my progress, and I
continued to see him for other medical problems. He was supportive of my
approach to CFS.
His attitude was consistent with his
treatment of me before I became ill. In my appointments with him prior
to CFS, he communicated his belief in a partnership between physician
and patient. This relation was expressed in his practice of offering
various treatment options and then letting me decide. That background
may have made it easier for him to accept that I would try behavior
change as my treatment for CFS.
In the time before CFS, he had also
communicated to me a view of the limitations of modern medicine. He said
that there were many more illnesses than medicine had names for and not
all those with names had treatments. I concluded that, in the field of
medicine, the realm of ignorance is probably much greater than the realm
of knowledge. His honesty about the limited powers of medicine helped me
to decide that behavior change offered me the best chance for
improvement from CFS. I welcomed his support of that decision.
Related Articles
