15: Support
Support is another one of the key ingredients to living well with long-term illness. Again, I believe I was very fortunate.
I see support as having three elements. One is practical help, such as grocery shopping, housecleaning or driving. Luckily, 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.
Acceptance from Family and Friends
Another kind of support is acceptance and again I felt lucky. My family and closest friends believed that I had a serious medical condition and approved of my strategy of drastically reducing my activity level. Since I lived alone and was financially responsible only for myself, other people were not affected directly by my decision, but I was still appreciative others’ 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 situation 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 Rating Scale I’ve mentioned, 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.
In other places, I have called this having a confidant, a person to whom you can turn for emotional support and an objective view of your life. That person could be your spouse, a good friend, a fellow patient, a doctor or a therapist. In any case, I was fortunate to have such a friend.
Support from Fellow Patients
A third kind of support is understanding and that perhaps only fellow patients can provide. One of the first things I did after receiving my diagnosis was to join two local CFS support groups. Based on my experience at Stanford, I thought that fellow patients would be great resources for understanding my illness. Since patients live with chronic illness on a full-time basis, they are often more knowledgeable than doctors or other healthcare providers.
As I mentioned in the chapter on loss, I made two good friends, one from each support group. I remember spending many hours with each one on the phone in the first few months I was ill. They were immensely helpful, orienting me to the world of CFS. Talking with them helped me to understand how serious and debilitating an illness I had.
These two people and the CFS 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.
A few months after getting my diagnosis, I started the self-help program I described in Chapter 6. As the program developed, it provided rich contact with fellow patients and became a major source of support.
Models
I experienced a powerful type of support from two fellow patients, neither of whom I met. I knew them through their published writings and, in the second case, via email as well. They provided me with 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 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. He wrote that after trying various approaches, he had come to believe that recovery might depend solely on his own efforts (“I don’t believe any of the remedies, medicine or food supplements I tried helped me one bit”) 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.
Dean’s article validated some specific elements of my approach, as well as the general orientation. First, he defined his activity limits and then adjusted his life to them. Even though his limits were far greater than mine (at his worst, he worked six hours a day), we both believed in the idea of an activity envelope. Second, he learned to stay within his limits by alternating periods of activity with times of rest. Third, he also used record keeping to discover what helped and what hurt his recovery.
The other CFS patient who influenced and inspired me was JoWynn Johns. A CFS patient from Maryland, JoWynn contacted me late in 1998 after the publication in the CFIDS Chronicle of my article about our first self-help groups. Over the following months, we exchanged many emails about our parallel approaches to living with CFS. Her case was much more severe than Dean’s or mine. She was effectively housebound at the time we first came into contact, but she, too, had an inspiring story to tell, which she also shared with the readers of the Chronicle in an article titled "Living Within My Envelope". Following an approach similar to the one I had presented in our class, she had greatly reduced her symptoms over a period of several years.
A number of her approaches dovetailed with my own. The first was her focus on “feeling better.” After many unsuccessful attempts to recover, she let go of the frantic search for a cure and instead focused on finding things that would improve her immediate quality of life. She took a systematic approach to understanding her illness by keeping very meticulous records. Based on her records, she developed a detailed understanding of what she had to do to control her symptoms. Her records also motivated her, because they documented her improvement.
As someone who had lived with CFS four years longer than me, JoWynn taught me a lot about successful adaptation. She made Dean Anderson’s idea about long-term adaptation to illness concrete. She likened living with CFS to adjusting to other chronic medical conditions, like diabetes or to long-term struggles with weight or alcoholism. 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.
Her experience also forced me to re-evaluate my optimism about recovery and to think more about what promoted it and what made it unlikely. She had been as disciplined and consistent in living within her limits as anyone I knew, yet her functional level did not improve. She was able to control symptoms, but she did not expand her energy envelope by making lifestyle adjustments.
I learned a great deal from both JoWynn’s and Dean’s experiences with CFS. The fact that they used an approach similar to mine to control their symptoms encouraged me in my path. I found hope in Dean’s recovery and felt sobered by JoWynn’s improvement, which reinforced the idea of a ceiling or limit on the amount of improvement possible for each person.
My Doctor
Even though I never had another medical appointment for CFS after getting my diagnosis, my doctor played an important role in my recovery. For some period of time, I checked in with him monthly by phone to keep 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 before I got 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 a 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. This left me with an image of a person in a large room carrying a
single candle and the implication that the realm of ignorance is probably much
greater than the realm of knowledge. Also, as described in a previous chapter,
he had been honest with me about the limitations of lab testing when I had an
earlier episode of fatigue. So my decision to use behavior change to treat CFS was
consistent with my belief in the limitations of medicine. Remembering my
doctor's view of medicine's limits and my prior success in using self-help, I felt validated in my conclusion that
behavior change offered me the best chance for improvement from CFS.