Dr. Bruce Campbell directs the educational CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org), and online self-help group discussion courses focused on practical ways to deal with the daily challenges of chronic illness. Register now for the Spring 2013 quarter.
The Anatomy of Hope
Bruce Campbell, PhD
If you are like most people with CFIDS and fibromyalgia, you have probably felt discouraged or even despairing at times. Perhaps it happened when you learned that you had an illness with no cure.
Or maybe it crept over you slowly as you came to suspect that you were unlikely to restore the life you had before becoming ill. In any case, you may have wondered how to keep hope alive when faced with long-term suffering.
A recent book by Dr. Jerome Groopman of Harvard offers some answers (The Anatomy of Hope: How People Prevail in the Face of Illness). Based largely on his experience with cancer patients, the book describes different approaches to living with serious illness.
Some people are passive in response to their diagnosis. Dr. Groopman describes a patient named Dan who refused treatment even though he had a curable form of cancer. Groopman eventually learned that Dan's refusal was based on the assumption that he would suffer the same fate as a friend who had died of cancer after a series of debilitating treatments. Feeling helpless and hopeless, Dan resigned himself to dying.
Dr. Groopman was able to persuade Dan to undergo treatment. By uncovering Dan's mistaken belief about his situation, the doctor was able to convince him that his situation was different than his friend's. Also, he encouraged Dan to see his treatment as a series of small steps in which his life would improve gradually. And, last, Dan was inspired to continue his treatments after meeting a woman who had recovered from the same cancer he had. Dan persisted and recovered.
Like Dan, CFIDS and fibromyalgia patients can fall into helplessness after years of suffering, but they can help themselves using some of the same strategies Dan employed.
By taking a series of small, realistic steps, most patients can help themselves to feel better.
In our self-help course, we teach how you can improve quality of life by making different choices than in the past. We also believe that the model offered by patients who have improved provides inspiration. That's why we focus in our course on what works, and why we have a series of success stories in our Library.
We don't offer a cure for CFIDS or FM, but the strategies we teach have a good chance to decrease suffering and increase quality of life.
Another response to serious illness is to hold out unrealistic hope. Groopman says he did this himself early in his career. He describes a case in which he and a colleague misled a patient named Frances, who had a colon cancer. Even though Frances' cancer was rated at Stage D, meaning rarely cured, she was given an optimistic interpretation of her situation.
The doctors used the term "remission," which meant to them a short-term reduction in tumor size, even though they knew that Frances would hear this as "cure." When, inevitably, the cancer worsened, Frances was understandably angry that the doctors had misled her and lost trust in them.
Groopman now believes that offering patients false hope was wrong and that doing so showed a lack of confidence that it is possible to have both hope and a realistic view of illness. The problem with false hope, he says, is that it does not acknowledge the risks and dangers facing a patient.
False hope can be an issue for CFIDS and fibromyalgia patients, too.
I have often seen people spend great amounts of time and money in search of a miracle cure, something that will give them their old life back. While some people are able to recover, recovery is rare and repeated failed attempts at recovery can produce the same sense of helplessness as resignation.
Groopman describes a third way to respond to illness, which he calls true hope. True hope, he says, "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."
He illustrates this approach by describing a patient named Barbara, who had an aggressive form of breast cancer. Barbara acknowledged that the cancer was likely to kill her, but she also wanted to treat it aggressively. She told Groopman: "I wish to live as long as possible, so long as there is quality to my life." And Groopman was impressed at how much quality of life she had. Barbara had a wonderful sense of humor and many good friends. She enjoyed travel, and found meaning in her faith and in working as a volunteer at her church.
Groopman was impressed with Barbara's acceptance of her situation. He found she had a calmness that was rooted not in surrender but in a "steady realism." She "set the parameters on her care with a clear-eyed vision of what was possible, what made sense to her, how she wanted to live, when it was time to die." Even with the limits imposed by her illness, Barbara was able to live her life on her own terms.
Barbara's approach is similar to what we call 'combining acceptance and hope'.
Patients with this attitude acknowledge that life has changed. Instead of living as if they were well or searching a miracle cure to restore them to health, they accept that their lives are different and, in some ways, more limited. At the same time, they have a fierce determination to improve and a conviction that they can find ways to make their lives better.
Hope for CFIDS and Fibromyalgia
What is realistic hope for someone with CFIDS or fibromyalgia? While it is realistic 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 are small. So for most people, it is prudent to assume that CFIDS 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 CFIDS 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.
Living well with long-term illness means living differently from before.
CFS patient JoWynn Johns describes her journey to a new life by saying in an article on recovery, "If recovery means returning to the way of life I had before CFS, I have not recovered. But in other and to me equally significant ways, I have recovered." She describes regaining control over her life, regaining physical comfort and learning how to control her symptoms through living within her energy envelope.
She writes, "I apply the word 'recovery' to myself because I have regained a satisfying life. It's just not the life I had before CFS."
Realistic hope can have physical effects as well as boosting your spirits. Groopman describes experimental evidence that hope can reduce symptoms. Hope appears to trigger the production of endorphins, the body's own pain killers. "Belief and expectation, cardinal components of hope, can block pain by releasing the brain's endorphins and enkephalins." Hope sets off a chain reaction.
"Hope tempers pain, and as we sense less pain, that feeling of hope expands, which further reduces pain."
Students in our program echo JoWynn's sentiment, saying that they believe it is possible to create a joyful and rewarding life while living with long-term illness. While not the life they had before becoming ill, it is a good life. They observe that, even though they would not have chosen their illness, they have learned valuable lessons from it and even, in some cases, consider themselves to be better persons now than they were before becoming ill.
I hope that, even if you have a different life than you expected, you see it as a good life.
You may also enjoy:
• "How I Gained Hope and Control: Pacing for the Bedbound Patient" - by Geraldine Blackman
• "Reframing Part 1" - Bruce Campbell's own story describing how he developed ways to improve his own ME/CFS by learning to see things from a new perspective. And "Reframing Part 2 - Not the Life I Planned But a Good Life Nonetheless"
Note: This article is reproduced with kind permission from www.cfidsselfhelp.org - which offers a large resource library on all aspects of coping with chronic illness.