Wednesday, March 22, 2006

Chronic Illness and Hope

In search of comfort and inspiration today, I turned to one of my favorite books, The Anatomy of Hope by Dr. Jerome Groopman. As with earlier readings, Dr. Groopman’s stories of how hope (or its absence) deeply affected his patients’ lives pulled me right in and invited me to compare my own sense of hope with the tales in his book.

After reading about several patients who lacked hope, who gave in to despair, I thought about my own situation. I try to be optimistic (which Dr. Groopman says is different than hope), but what are my own barriers to true hope? I certainly think that my condition may improve somewhat over the years, but I realized that I don’t truly believe that I can recover.

In part, my scientific background gets in the way. I’ve read everything I can about CFS and follow all of the research closely. I know that scientists don’t yet know what causes CFS or how to cure it. I know that there are no effective treatments (yet). Worst of all, I am painfully aware that very few people ever fully recover; various studies estimate a recovery rate of somewhere between 2 and 10%. My analytical mind has absorbed those statistics and made them a part of me.

Dr. Groopman tells one story that really sticks in my mind, of a pathologist colleague of his who was diagnosed with a particularly deadly form of stomach cancer. He knew, from his own professional experience, that the recovery rate for this cancer was almost zero. Only 1-2% of people with this cancer live six months after diagnosis; less than 1% survive to nine months. Yet, this pathologist, with this scientific knowledge deeply ingrained in him, ignored the death sentence and embarked on a difficult treatment path that most of his colleagues thought to be foolish. He allowed himself to believe that he had a chance, albeit a tiny one; he beat the odds and survived.

I’ve tried to convince myself similarly that I can be among that 5% or so that recover from CFS. Sure, it’s unlikely, but why not me? Oddly enough, though, when I occasionally read of someone’s miraculous recovery from CFS, my first reaction is not inspiration but skepticism. I think they were probably misdiagnosed to begin with; they couldn’t have really had CFS because there’s no cure for it. How do I overcome this skepticism and encourage true hope in myself?

The uncertainty and supposed controversies surrounding CFS make matters worse. With the public and even some doctors doubting the severity of CFS, if not its very existence, what would it mean if I were to recover in the absence of a known medical cure? I know intellectually that this is an absurd thought, that I would welcome any relief from this devastating illness. Emotionally, though, it’s a fear lurking beneath the surface. Would recovery somehow negate the suffering I’ve endured these past four years or the plights of so many other people with CFS? I need to find a way to get past these illogical thoughts so that I can picture a better future for myself.

I certainly have no trouble picturing some improvement in my future, and I often focus on that goal: to find ways to improve my condition, a little at a time, to improve the quality of my life and my ability to do the things I enjoy. CFS requires a careful balance of hope and acceptance. Some level of acceptance is necessary in order to get through daily life and avoid crashes. To ignore my limitations would be to sentence myself to constant relapses. I am constantly searching for the right balance and for ways to keep real hope alive in my heart.

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