Introduction: The Power of Self-Help

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(From the series Ten Keys to Successful Coping: 2001)

By Bruce Campbell

The first six months I was sick with ME/CFS, I functioned at about 20% of normal. Over the following several years, I improved gradually now consider myself to be recovered. I no longer experience symptoms of ME/CFS and have an activity level comparable to that of other people of my age.

During that same time, I have known hundreds of 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 people with ME/CFS 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 ME/CFS, I had focused on the first question. They were self-limiting problems or conditions for which there were well-established, effective treatments. But ME/CFS is different. As yet, there is no cure or even a standard treatment.

When I realized the health care system offered limited help for ME/CFS, 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 CFS 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 ME/CFS 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 ME/CFS and fibromyalgia. If you are destined to recover (which appears to be possible for a few ME/CFS 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 ME/CFS 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.