Ten Keys to Successful Coping
Introduction: The Power of Self-Help
By Bruce Campbell
The first six months I was sick with
CFIDS, I functioned at about 20% of normal. Over the following several
years, I improved gradually and today (August 2003) consider myself to
be recovered. I no longer experience symptoms of CFIDS and have an
activity level comparable to that of other people of my age. During that
same time, I have known several hundred other patients, mostly people
who have taken our self-help course. This series of articles is an
attempt to describe what has made a difference in my life and in the
lives of other patients I have known.
Scientific
Proof for Self-Help
Before becoming
ill, I had the privilege of working at the Stanford Medical School on
several self-help programs for chronic illness. One program was the
Arthritis Self-Help course. This six-session class on coping with
problems such as pain, loss of function and depression is taught by
volunteers, many of whom are arthritis patients. Patients taking the
class have significantly reduced their pain and depression, and
increased their activity level. Who benefits from the course? Research
has shown that the patients who improve the most are those who have the
strongest belief in their ability to exercise some control over their
illness. These people do not deny they are sick or hold unrealistic
hopes for recovery, but they have confidence that they can find things
they can do to make their lives better.
Similar
programs at UCLA and Harvard for skin cancer and chronic pain have
produced comparable results. Patients who took a six-session course on
coping with skin cancer showed an increase in life expectancy in
comparison to other skin cancer patients. And patients who took a course
on combating chronic pain reduced their visits to doctors, their levels
of anxiety and depression, and their experience of pain.
A second
example from Stanford is the breast cancer support groups organized by
Dr. David Spiegel. The women who met in his weekly support groups in
addition to receiving standard medical care reduced their pain and
depression much more than women in a control group, who received
standard medical care alone. Remarkably, the women in the support groups
lived on average twice as long as members of the control group. Dr.
Spiegel's groups showed the powerful effects of group support. Meeting
with others who share a similar condition, if it occurs in an
environment of respect and understanding, can have dramatic effects on a
person's coping skills, self-confidence and quality of life.
All these
programs are based on the principle that how we live with chronic
illness can change its effects on us and may even change the course of
the disease. The three courses showed that using good coping skills
can make a significant difference to quality of life; the breast cancer
research demonstrated the powerful effects of peer support in chronic
illness.
Two
Questions About Illness
These programs
suggested to me that when I become ill, I should ask two questions:
1) what help
can I expect from the health care system?
2) how can I
help myself?
With most
illnesses before CFIDS, I had focused on the first question. They were
self-limiting problems or conditions for which there were
well-established, effective treatments. But CFIDS is different. As yet,
there is no cure or even a standard treatment. When I realized the
health care system offered limited help for CFIDS, I felt challenged to
emphasize the second of the two questions. I decided I would have to
take more responsibility by searching for those aspects of the illness
over which I could exercise control.
Our self-help
course was the result. We began with two classes composed mostly of
people I had known in two CFIDS support groups. As the class evolved, we
came to think of our program as combining two factors, which we called tools
and support. Tools means we have a problem-solving
orientation, focusing on scientifically-proven ideas and techniques that
can help reduce symptoms and improve quality of life. Support
means we attempt to create a safe and positive environment in which
people feel accepted and understood.
Everything that
follows in this series will be an amplification of the idea of accepting
responsibility. Given the fact that there is so far no cure or even
standard treatment for CFIDS or fibromyalgia, self-help
offers an alternative approach. All the keys you will read about in this
series are based in belief in the power of self-help, the conviction we
can change the effects of our illness and perhaps its course through our
efforts.
What Can You
Expect from Self-Help?
A
self-management approach of the type you'll read about in this series
can be helpful for many people with CFIDS and fibromyalgia. If you are
destined to recover (which appears to be possible for a few CFIDS and
fibromyalgia patients), self-help can speed up the process. It can also assist those
who are improving to gain more. Self-help can also help improve the
quality of life for those whose functional level does not improve.
Though still limited by their illness, they can learn to control
symptoms, to bring stability to their lives and to increase the amount
they accomplish.
Self-management is not a cure for
CFIDS or fibromyalgia. Rather, it provides tools for coping that can
also promote improvement, where that is possible. When offered through a
group, self-help also includes support, inspiration and encouragement
from fellow patients. Self-help is no magic bullet; it requires hard
work and patience. But I have found that many patients can affect their
symptom level and quality of life significantly by accepting
responsibility for those things under their control.
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