Three Forms of Support

Print

Email a Friend

By Bruce Campbell

(Note: This article is adapted from the online booklet Recovery from Chronic Fatigue Syndrome: One Person's Story.)

My experience with Chronic Fatigue Syndrome taught me that support can come in many different forms, each of them helpful.

One type is practical help, such as grocery shopping, housecleaning or driving. Since I had a moderate case of CFS, I did not need help of this kind very often. Even though there were times when I was so sick I could not go out of the house, for the most part I could provide for myself. But my sickest days made me sympathetic to those patients whose severe long-term limitations make them dependent on others for day-to-day practical assistance.
 

Acceptance from Family and Friends

Another kind of support is acceptance. My family and closest friends believed that I had a serious medical condition and approved my decision to treat CFS using self-management. Since I lived alone and was financially responsible only for myself, family and friends were not affected directly by my decision, but I still appreciated their acknowledgment that I was seriously ill and their agreement with my approach.

I was especially fortunate to have a good friend who was concerned about me and willing to offer both emotional support and an objective view of my situation. We talked about my illness often and set aside some time at the first of each month to discuss how I was doing. We each assessed my status using the CFS/FM Rating Scale, then reviewed my logs for the previous month. I learned much from the discussions, recognizing patterns I wasn't able to spot on my own. Just as important, the meetings communicated that I was not struggling alone with my illness, but rather that there was somebody who cared about me and wanted to help me get better. I think the sessions also helped reduce the sense of helplessness often experienced by people close to those who are seriously ill.
 

Support from Fellow Patients

A third kind of support was provided by fellow patients. Shortly after receiving my diagnosis, I joined two local CFS support groups. I believed that fellow patients would be great resources for understanding my illness, since they live with it on a 24/7 basis. I made two good friends, one from each support group. They were very generous with their time, spending many hours talking with me on the phone in the first few months I was ill. Talking with them helped me to understand how serious and debilitating an illness I had.

The support groups gave me a sense of belonging, a feeling of being connected to others at a time of confusion and isolation. I found there is something powerfully healing about feeling understood, all the more so for a stigmatized disease that many don't believe is real. Also, fellow patients were tremendous sources of information and perspective, helping me to understand CFS much more quickly than I could have on my own.
 

Models

I experienced a powerful and unexpected type of support from two fellow patients, neither of whom I met. Both provided powerful models of living successfully with CFS.

The first was Dean Anderson, who described his successful eight-year struggle to recover from CFS in an article in the CFIDS Chronicle. I was inspired by the article the first time I read it and I returned to it often both for practical strategies and for encouragement. Dean had adopted an approach similar to mine. Turning away from medical treatments, he instead focused on figuring out what he could do to make himself better through changing his attitudes and behaviors. His improvement was a symbol of hope to me.

In reading and re-reading his article, I focused especially on some memorable passages, which I memorized. He wrote that after trying various approaches, he had come to believe that recovery might depend solely on his own efforts and that the key to his recovery was a certain kind of acceptance. He described it not as 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."

I found inspiration in Dean's description of how he combined acceptance of being ill with hope for a better life. That seemed the right balance. For me, acceptance meant acknowledging that my life had changed and that my old life might not return. To live as well as possible, I had to live differently than before. On the other hand, however, I wished to live in hope of better days and assume that there were things I could do that would bring improvement.

The other CFS patient who influenced and inspired me was JoWynn Johns. JoWynn contacted me after the CFIDS Chronicle had published an article about our first self-help groups. Over the following months, we exchanged many emails about our parallel approaches to living with CFS. Like Dean, she had an inspiring story to tell, which she also shared with the readers of the Chronicle in an article titled Living Within My Envelope: A How-To Story. Following an approach similar to Dean's, she had greatly reduced her symptoms over a period of several years.

JoWynn taught me a lot about successful adaptation to CFS. She likened living with CFS to adjusting to other chronic medical conditions, such as diabetes. She believed successful adaptation meant changing one's daily habits and routines. JoWynn also taught me many specific points about CFS that I used in my own life, such as the toll taken by mental and emotional events.
 

My Doctor

My doctor played an important role in my recovery, even though I never had another medical appointment for CFS after getting my diagnosis. For some period of time, I checked in with him monthly by phone, keeping him apprised of my progress, and I continued to see him for other medical problems. He was supportive of my approach to CFS.

His attitude was consistent with his treatment of me before I became ill. In my appointments with him prior to CFS, he communicated his belief in a partnership between physician and patient. This relation was expressed in his practice of offering various treatment options and then letting me decide. That background may have made it easier for him to accept that I would try behavior change as my treatment for CFS.

In the time before CFS, he had also communicated to me a view of the limitations of modern medicine. He said that there were many more illnesses than medicine had names for and not all those with names had treatments. I concluded that, in the field of medicine, the realm of ignorance is probably much greater than the realm of knowledge. His honesty about the limited powers of medicine helped me to decide that behavior change offered me the best chance for improvement from CFS. I welcomed his support of that decision.