Introduction: The Power of Self-Management

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By Bruce Campbell

This series offers a message of hope to people with Chronic Fatigue Syndrome and fibromyalgia: even though you have an illness without a cure, there are many things you can do to improve your well being. Following the eight steps described in this series, you can create a self-management program for regaining control of your life.
 

Long-Term Illness

When you first experienced Chronic Fatigue Syndrome (CFS) or fibromyalgia (FM), you may have felt confused, because both CFS and FM are so different from short-term illnesses. Rather than creating a temporary pause in your life, as an acute illness does, CFS and fibromyalgia become a central fact around which your life revolves. Instead of resuming your previous life after a brief interruption, you are faced with having to adjust to long-term symptoms and limitations.

Long-term illness is different in a second way as well. Not only does it bring symptoms that persist, it has comprehensive effects, changing how much you can do, your moods, your relationships, your finances, your hopes for the future, and your very sense of who you are. You have to deal with many issues, including stress, fluctuating moods, financial pressures, frustration in relationships and loss. And the relation is two-way: not only does illness affect many parts of life but also it is in turn affected by those other parts. (See diagram).

Interactions of illness and other factors

In summary, CFS and fibromyalgia have comprehensive effects, touching many parts of your life. They are much more than simple medical problems, so a self-management plan has to include much more than just treating symptoms.
 

Your Role as a Self-Manager

As long-term illnesses, CFS and fibromyalgia are usually not resolved, but have to be managed. Their long-term nature requires that you adopt a different role as a patient than you have with short-term illnesses, one we call being a self-manager. With short-term illnesses, you often can rely on a doctor to provide a solution or the illness resolves itself. But CFS and fibromyalgia are different. There is no medical cure for either one. Conditions that can't be cured need to be managed. With long-term conditions, more responsibility falls on the shoulders of patients, as day-to-day managers of their illness. You know your situation better than anyone else, because you live with it on a day to day basis. You may seek help from experts, such as doctors, but, in the end, you are responsible. Your decisions and lifestyle will go a long way to determining your quality of life with long-term illness.

The good news is that there is much that patients can do to improve through their own efforts. You will learn from this series coping strategies we teach in our self-management course. Our class takes an approach similar to that used in other self-help programs for chronic illness. These programs, which include courses for people with heart disease, cancer, arthritis and chronic pain, have been proven to reduce symptoms and increase patients' level of functioning. They teach people how to improve their skills in managing chronic conditions, and are all based on the idea that how we live with chronic illness can change its effects and may even change the course of the disease.
 

The Power of Self-Help

Research on one such self-help program, the Arthritis Self-Help course, has shown that the patients who improve the most are those who believe they can exert 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. This and similar programs have documented that good coping skills, which are learnable, make a big difference to patients' level of function and quality of life.

The Twelve-Step movement 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 a set of ideas to help participants regain control of their lives through the support, encouragement and inspiration of the group. The principles of the self-help approach apply to people with 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, such as that provided in self-help courses and some support groups, can be very useful in this process.

In addition to coping skills, attitude is important to living well with long-term illness. The attitude I think is most helpful is both realistic and optimistic. I call it acceptance with a fighting spirit or realistic hope. Patients with this attitude combine two apparently contradictory ideas. On the one hand, they accept that their illness is a long-term condition. Instead of living as if they were well or searching for a miracle cure to restore them to health, they acknowledge that their lives have changed, possibly forever. At the same time, these people also have a fierce determination to improve, and the conviction that they can find ways to get better through their own efforts. Like coping skills, attitude can be learned.
 

In Conclusion

Self-management is not a cure for Chronic Fatigue Syndrome or fibromyalgia, and it is no magic bullet. It's a way of life, not a one-time treatment. Self-management requires patience and persistence. We have found that, by accepting responsibility for those things that are under their control, people with CFS and FM can affect their symptom level and quality of life significantly. This series will show you how.