Key 1: Combine Acceptance and a Fighting Spirit

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

By Bruce Campbell

I believe that the approach a person adopts toward ME/CFS and fibromyalgia is crucial to their efforts to live well with long-term illness. Of the patients I know who have improved the most, many adopted an attitude that combines two apparently conflicting ideas.

On the one hand, these people accepted their illness as a long-term condition. Instead of living as if they were well or searching for a miracle cure to restore them to health, they acknowledged that their lives had changed, possibly forever.

At the same time, these people also had a fierce determination to improve and the conviction that they could find ways to get better through their own efforts.

I call this two-part approach acceptance with a fighting spirit. Let me explain what I mean by describing two people who had great success using this approach.

Living a Different Kind of Life

Dean Anderson provides a good example of the paradoxical combination of acceptance and hope in describing his recovery from CFIDS, as he called ME/CFS, in an article in the Winter, 1996 issue of the CFIDS Chronicle. We have posted this article in our Success Stories archive. He didn't start with the attitude of acceptance.

Rather, when he first became ill he aimed for recovery, which he thought he could achieve through determination and hard work. He was successful at times, but devastated by relapses. Over time he came to a different view of how to live, he writes, a belief in the power of a certain kind of acceptance.

He describes this acceptance as not 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."

He goes on to say that "the ‘effort' required to recover from CFIDS is an exercise in discipline and hopefulness, not determination and striving." The discipline required is the discipline "to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing."

Dean did not adopt an attitude of conquering illness, but rather one of listening, understanding and adapting to it. He emphasized living within limits in a disciplined and consistent way, staying true to what his body required, and looking for ways to find meaning in a different kind of life.

Dean used several strategies that will be discussed in this series. First, he defined his limits, finding what he could do safely every day without intensifying his symptoms. Second, he learned to stay within his limits by using pacing, alternating periods of activity with times of rest. And third, he kept detailed records of everything in order to find what promoted improvement and what triggered relapse.

Doing More of What Works

JoWynn Johns, a graduate of our program, describes a similar approach in an article in the March, 1999 issue of the CFIDS Chronicle. We have posted this article, too, in our Success Stories archive.

She reports that she spent her first several years with CFS trying to ignore the illness, then several more trying a variety of approaches that proved ineffective, including exercise, homeopathy, special diets, medications and supplements.

The turning point occurred when she made two changes. First, she began to listen to her body, asking what it needed to feel better. This was a contrast to her previous approaches of ignoring her body or trying to bend to her will. Second, she changed her goal. Letting go of the idea of recovery, she decided to focus on determining what she had to do to feel better.

A key insight was the recognition that she did not always feel the same. If some days were better than others, she reasoned, she ought to be able to discover the conditions that made her feel better.

Like Dean Anderson, she kept detailed records that revealed the connections between her symptoms and other aspects of her life. And, over time, she found how to control her symptoms: by getting good sleep, restricting her activity and limiting stressful contact with other people.

Living within her limits, JoWynn was able to greatly reduce her fatigue and other symptoms. Over time, she significantly increased the percentage of low symptom and no symptom days in each month from about 35% in 1996 to 80% and more in 1999.

Updating her story at the end of 2002, she wrote, "I now have nearly 100% symptom-free good days. What a difference that makes! For me, having CFS is like having diabetes: it's a chronic condition that can be managed and that requires lifestyle adaptations."

JoWynn and Dean used similar strategies in responding to ME/CFS. After striving unsuccessfully for recovery, both came to an acceptance of the reality of the illness and the need to lead a different kind of life. They found their limits by listening to their bodies, by keeping detailed records, and by experimenting with different activity levels.

Both found the key to improvement lay in the combination of accepting the illness and disciplining themselves to live with hope within the limits it imposed. And both were rewarded. Dean reported a nearly-complete recovery. JoWynn experienced a substantial reduction in symptoms and greatly improved quality of life.