Support is another one of the key ingredients to living well with long-term illness. I think of 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.
On the self-help program website, I call this having a confidant or coach, 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. As I mentioned earlier, 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.
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.
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. As such, they were sources of inspiration and hope.
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.
He wrote that the key to his recovery was a certain kind of acceptance, which he described 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.
Dean's article validated some specific elements of my approach, as well. First, he defined his activity limits and then adjusted his life to them. Even though his limits were much less than mine (at his worst, he worked six hours a day while I had been forced to stop working), 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. 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 mine, she had greatly reduced her symptoms over a period of several years.
I was impressed by her focus on feeling better. After many unsuccessful attempts to recover, she had let go of the 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 by documenting 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, such as 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 had not improved. She was able to control symptoms, but it had not led to an expansion of her energy envelope.
The fact that both Dean and JoWynn used an approach similar to mine encouraged me in my path. Also, 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.
Even though I have 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. The conclusion I drew was that the realm of ignorance in medicine 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.