Ten Keys to Coping and Recovery

1: Combine Acceptance and a Fighting Spirit

By Bruce Campbell

When I think of those patients who have improved the most, I am struck by how many adopted an attitude that combines two apparently contradictory 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 the “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. Let me explain 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 in an article in the Winter, 1996 issue of the CFIDS Chronicle.  We have posted this article as "Acceptance, Discipline and Hope: A Story of Recovery from CFIDS."  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 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 remission and what triggered relapse.

He summarizes his approach in the three terms acceptance, discipline and hope. He believes that CFIDS patients need the strength to accept their condition even if others refuse to, the discipline to do consistently the things that promote improvement, and an attitude of hope.

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 as "Living Within My Envelope: A How-To Story".  She reports that she spent her first several years with CFIDS trying to ignore the illness, then several more trying a variety of approaches that proved ineffective. The turning point occurred when 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.

The trigger for the change was her 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 what helped her feel better: getting good sleep, restricting her activity and limiting stressful contact with other people. After using this approach for two years, she reported “I wish I could convey to other patients what my experience has been. I am feeling so much better than I was last year and much, much better than two years ago.”

JoWynn and Dean used similar strategies in responding to CFIDS. 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.

Ten Keys Series