CFS transformed me in a matter of days from a healthy person to someone functioning at 25%. As my symptoms persisted, I came to realize that CFS was not a temporary interruption but rather had become the central fact around which my life revolved. Much of what I considered 'me' had been taken away. The losses brought by illness created one of my greatest challenges in living with CFS: redefining myself in the face of loss.
One of my responses to the loss of my old life was denial. I told myself for more than a year that I would be the exception, one of the lucky ones who recovered. This belief enabled me to keep hope alive and to adjust to all the losses and uncertainties. Later, when I accepted that recovery was unlikely, I found hope in the progress I had made and in the conviction that, even if didn't recover, I could still find ways to bring meaning to my life. Also, gaining some control over the illness helped reduce the amount of uncertainty in my life.
When Elizabeth Kubler-Ross described responses to loss, her end stage was acceptance. I could identify with that in part, but for me the final stage was more complex. As noted in the last chapter, acceptance meant recognizing that my life had changed, perhaps permanently and certainly for an extended period of time. It meant letting go of my past life and also of the future as I had envisioned for myself. But it had another component as well, a confidence that I could find things to improve my life. I called the combination acceptance with a fighting spirit.
Moving through Grief
CFS stripped away most of what I viewed as myself. Because of my illness, I gave up work and volunteer commitments, let most relationships slide, lost my ability to be physically active, and replaced an optimistic view of my future with uncertainty.
I did two things to cope with my losses. The first was to publicly acknowledge the loss. In a Christmas letter sent a year and a half after getting CFS, I wrote to friends that I had been living with a disease for which there was no standard treatment or cure. And I concluded: "I am sobered by the realization that it is highly unlikely that I will return to the level of functioning that I had before becoming ill and so probably will have to adjust to living a life with greater limits than before." Even though I wrote to alert others to expect less of me in the future, I think the most important audience for those words were me. The public declaration helped me recognize the extent of my loss and the possibility that it was permanent.
Moving Beyond Loss
While accepting that my life had changed, I had the conviction that, whatever happened, it would still be possible to have a good life. That conviction helped me to accept the losses I had experienced. I continued to believe that even if I didn't recover, there were many things I could do improve my quality of life. This belief kept me moving forward in hope.
Within weeks of receiving my diagnosis, I joined two local CFS support groups. The experience was especially useful for the friends I made, especially one from each group. Both were very generous with their time, spending many hours talking to me about the medical, psychological and political aspects of CFS. They were tremendous sources of information and perspective, helping me to understand CFS much more quickly than I could have on my own.
Beyond these two relationships, being a part of the support groups gave me a sense of belonging, an experience of being connected to others like me. I found there is something powerfully healing about feeling understood, all the more so for a stigmatized disease that some people, even some doctors, don't believe is real.
Because I stopped working and dropped out of my volunteer commitments shortly after becoming ill, fellow patients became perhaps my most important community. I think having that source of identification served me well. I took CFS patients to be my peers, not healthy people. That meant that I measured myself in comparison to them, not to my peers from work or healthy friends. That comparison took a lot of pressure off.
I firmly believe that we all need to have meaning in our
lives. My way to bring meaning to my new situation was through relationships and
from the belief that, even though I had lost much, I could still contribute
something. Helping others through the self-help program I started, which is
described in the next chapter, both provided an
opportunity to create many new relationships and gave me a new sense of purpose
when previous sources of meaning had been lost.