Introduction: The Power of Self-Help

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By Bruce Campbell

(Note: First in the series Ten Keys to Successful Coping: 2005.)

This series offers a message of hope to people with ME/CFS and fibromyalgia: even though you have an illness for which there is so far no cure, there are many things you can do to improve your quality of life.

Through using the ideas in this series, you can take an active role in improving your well-being. You will find in these articles tools for reducing symptoms and strategies for creating a more stable and predictable life.

The series offers a kind of treatment for ME/CFS and fibromyalgia, but one that differs from other treatments you may have tried. In contrast to ones you receive from others, this one you administer to yourself. Self-help is based on the belief that you are the most important person on your treatment team and that you can change the effects of your illness, and possibly even its course, through your efforts.

The series offers you ideas to help you understand your illness better, as well as tools to improve your quality of life. The approach you will find here is based on accepting ME/CFS and fibromyalgia as long-term illnesses. Chronic illness is different from acute illness. Instead of being a brief interruption of your life, long-term illness is a powerful force to which you have to adjust.

Rather than being limited in its effects, it touches almost all parts of your life: your ability to work, your relationships, your emotions, your dreams for the future and your sense of who you are. This series offers you resources to help you manage your symptoms and also presents ideas for dealing with other aspects of your situation, such as stress, emotions and relationships.

Two Questions About Illness

Whenever you become ill, it is useful to ask two questions:

1. What help can I expect from the health care system?
    
2. How can I help myself?

With many illnesses, it is appropriate to focus on the first question. Many health issues are self-limiting problems or conditions for which there are well-established, effective treatments. But ME/CFS and fibromyalgia are different. So far neither illness has a cure or even a standard treatment. Because the health care system offers limited help, patients are challenged to assume responsibility for learning to live well with their condition.

Even if there were consistently effective treatments to ameliorate symptoms, there would still be a big role for patients. ME/CFS and fibromyalgia are more than medical conditions; they affect your whole life. Because you know your situation better than anyone else, you are the day-to-day manager of your condition. The daily decisions you make have a big effect on your quality of life.

Self-Help Programs for Chronic Illness

Several educational programs for people with chronic illness illustrate the power of self-management. One such program is the Arthritis Self-Help course, which was developed at Stanford University in the late 1970's and has now been taken by over 300,000 people.

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.

Research has shown that the patients who improve the most through the class are those who believe 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 to make their lives better.

The course shows that it is possible for patients to learn new attitudes and skills, and that a brief, volunteer-led class can produce significant change. (We modeled our volunteer-run program in part on this course.)

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.

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.

A second form of self-help, the 12-Step movement that began with Alcoholics Anonymous, offers further evidence of the power of self-help. Groups in this tradition are based on the idea that people who share a common condition can band together to help one another. Typically, groups of this type provide tools and structure. Tools means a set of ideas that can help people improve their lives. Structure means that the group provides support, encouragement and inspiration.

The principles of this approach can be helpful for people with ME/CFS and fibromyalgia. As with other life problems, learning to manage chronic illness involves adapting to new circumstances by making adjustments to daily habits and routines. Mutual support can be very useful, even essential, in this process.

The ME/CFS & Fibromyalgia Self-Help Program

This series of articles summarizes our self-help course, the first version of which was offered in 1998, shortly after I was diagnosed with ME/CFS. The idea of a self-help course for people with ME/CFS occurred to me because of work I had done at the Stanford University Medical School prior to becoming ill.

Working as a consultant to medical self-help programs, I saw people gain some control over chronic illnesses by using self-help strategies such as those you'll read about in this series. Self-help was not presented as a cure, but rather as a way to live better with a long-term condition. I saw many people improve their quality of life and sometimes even change the course of their illness by taking responsibility for those things under their control.

Self-help for CFS came to mind as soon as I was diagnosed. I thought that if self-help could be useful for illnesses with well-established treatments, it should be even more crucial for a condition with no standard or widely effective treatment. Not finding a self-help program for my illness, I decided to create one.

Our course went through many versions during the first few years, eventually becoming the CFIDS and Fibromyalgia Self-Help Program and later ME/CFS and Fibromyalgia Self-Help Program, but the focus was always the same: patients sharing what worked to help them feel better and improve their quality of life.

In Summary

All the keys you will read about in this series are based in belief in the power of self-help, the conviction that you can change the effects of your illness through your efforts. The upcoming articles contain many ideas for things you can do to feel better.

These strategies are not aimed at curing ME/CFS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering. Self-management is a way of life, offering you tools to feel better through changing your daily habits and routines.