Saturday 28 June 2014

Marty's experience of illness

This article is excerpted from chapter 2, “The Illness Experience: Understanding Your Friend’s Diagnosis and Symptoms,” of our book High Tide, Low Tide: The Caring Friend’s Guide to Bipolar Disorder.

My father had chronic rheumatoid arthritis throughout his adult life. My memories are of a man progressively crippled by disease who refused to let it affect him more than absolutely necessary. He died when I was eighteen years old from infections his body was unable to fight after decades on oral steroids. My mother once asked me if I had resented the limitations his disability imposed on our family. The question astounded me. It had never occurred to me to think like that.

In my early twenties, I developed dermatitis on my hands and arms. It was painful and inconvenient, but I accepted it as something over which I had little control. It eventually cleared and has not returned.

A few years later, I was hospitalized following an episode of acute abdominal pain and bleeding. The condition responded to anti-inflammatory medication, which I took preventatively for two years afterwards. I recall attending an outpatient appointment to learn the results of some diagnostic tests. I was prepared to discover I had experienced either a nasty but limited inflammation, or the first visitation of some serious, perhaps life-threatening, condition.

The results were inconclusive, and the doctors decided further tests would not be performed unless the condition reoccurred. I remember feeling cheated. Even a serious diagnosis seemed preferable to doubt and uncertainty. Fortunately, the condition never troubled me significantly again.

Ten years later, a friend developed multiple sclerosis. I knew little of the disease, and never took the trouble to ask or research what it meant. My friend spoke pragmatically of the impact it would have on her life, imagining and planning for a gradual physical deterioration. The illness advanced far more rapidly than anyone anticipated. I watched helplessly as the woman I had known was overwhelmed by disease, despair, and grief. The depth of her need terrified me. I wrote to her every day for what turned out to be the last two years of her life, but never once picked up the telephone. I visited her home only once, after her death, to attend a memorial ceremony.

Looking back, I see I squandered many opportunities to develop a compassionate understanding of illness and its impact. My stoic attitude helped me deal with my own ill health, but left me incapable of responding with compassion to the needs of others. I mistakenly believed that caring for someone meant making their pain and hurt go away. It would be many years before I learned to open my heart and simply be there for those I care about. I am still learning.


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