Key 1: Combine Acceptance and Hope
By Bruce Campbell
(Note: From the series Ten Keys to Successful Coping: 2005.)
The first key is an appropriate attitude toward your situation. The patients I have known who have done well have had a realistic, yet positive attitude that combined two apparently contradictory ideas: acceptance and hope.
Acceptance meant that they acknowledged that they had a long-term condition that was likely to be with them the rest of their lives. Instead of living as if they were well or searching for a miracle cure to restore their prior health, they acknowledged that their old life had been replaced by a more limited life.
They did not try to ignore their illness, nor did they expect it to disappear. But neither were they resigned. They had hope, meaning a determination to improve and a confidence that they could find ways to feel better, even if they were not able to restore their old life.
Hope
As explained in Dr. Jerome Groopman's book The Anatomy of Hope, realistic hope is different from two other responses to serious illness: resignation and false hope. Resignation looks at the low probability of recovery and gives up, feeling helpless and hopeless. False hope chases after a miracle cure to restore life as it was before.
True hope is different, according to Dr. Groopman. It "takes into account the real threats that exist and seeks to navigate the best path around them." Hope can flourish when you believe that your actions make a difference, that they can create "a future different from the present." To have hope is to "acquire a belief in your ability to have some control over your circumstances."
What is realistic hope for someone with ME/CFS or fibromyalgia? While it is reasonable to hope that a cure may be developed some day, at present neither illness has a cure. Some patients recover on their own, but their numbers seem small. For most people, it is prudent to assume that ME/CFS or fibromyalgia will be long-term conditions.
But it is also realistic to believe that you can find things to help you feel better. Medications and self-help strategies may not cure ME/CFS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering.
This approach requires that you assume responsibility for the day-to-day management of your illness. Realistic hope also means that even if you aren't able to restore your old life or to live the life you had expected, you can find meaning by living the best life possible under the circumstances.
Living a Different Kind of Life
To illustrate what is possible if you combine acceptance and hope, I would like to describe the experience of two ME/CFS patients. The first is Dean Anderson, whose account of a successful eight-year struggle with ME.CFS is posted on this site as Acceptance, Discipline and Hope.
Dean had a relatively mild case of ME/CFS, functioning at 60% of normal in the first few years he was sick. During this time, he believed he could recover by using determination and hard work. He was successful at times, but devastated by relapses. Over time, however, he came to a different view of how to live with ME/CFS, one rooted in 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 he replace determination and striving with discipline and hopefulness. By discipline he meant the ability "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 was successful and after eight years considered himself substantially recovered. He had returned to a full life and had an activity level similar to that of other people in their 50's.
He summarized his approach in three words: acceptance, discipline and hope. He believes that ME/CFS 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
The second patient is JoWynn Johns, who had a much more severe case of ME/CFS, having been rendered housebound after several years of ignoring her illness. (She describes her efforts to cope in the article Living Within My Envelope: A How-To Story.)
She reports that after ignoring her illness, she spent several years 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.
She found that poor sleep was associated with higher symptoms, and that more intense symptoms were also caused by mental exertion and emotional stress. Over time, she defined what helped her feel better: getting good sleep, restricting her activity and limiting stressful contact with other people.
JoWynn says that one key for her was accepting responsibility for taking care of herself. She writes: "I didn't make myself ill. I can't make myself well. But I sure can make myself feel better or much worse by the choices I make about how to live." Changes in attitude have been important to her as well.
She writes that she practices letting go: "I can make myself very unhappy by thinking about all that I've lost. But I don't want to be unhappy! So I work at letting all that go, not letting it hang around to make me blue." And, lastly, she is grateful: "I'm thankful for the time I have now. I never had enough time in my past life. Although this is not the life I wanted, it's a good life nonetheless."
Living within her limits, JoWynn reduced her fatigue and other symptoms and increased significantly the percentage of good days in each month, from about 35% in 1996 to 80% and more in 1999.
Updating her story recently, 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."
Summary
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.
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