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When Someone You Love Has A Chronic Illness

Hope and Help For Those Providing Support

My plane sunk among layers of grey clouds in the Minnesota sky. I was descending into the land where I was raised, where I went to college and graduate school. It was colder than I remembered and my insufficient California jacket struggled to keep me warm. Six weeks previously, I had turned in the manuscript for my new book, When Someone You Love Has a Chronic Illness. While I was in New York for work-related meetings, I received a call that my mother was dying.

Suddenly, I was now the subject, and not just an observer, of what I had been writing about for nearly a decade. The details are unimportant. My mother's illness was quick and lethal. Fortunately, her suffering was limited. But for the first time in my life, I was a loved one watching my mother struggle, as she had no choice about how her life would end.

We are living in an unprecedented time in the worlds of medicine and longevity. At least that is what I say in my new book. People live longer than ever before. And though they do, my mother was not part of these statistics. She was a young and vital 67 when she died. So much for actuarial data.

When Someone You Love Has a Chronic Illness is designed to help loved ones who know first-hand about the realities of illness. When my mother was ill, I had a great deal of contact with hospice staff, religious friends of my mother's, as well as a number of family members. And though we all struggled to make meaning of what was happening (and we tried to wrap our minds around how could this really be happening?), there were few words that any of us could muster to convey what we were feeling.

The topic of illness makes most of us feel anxious and helpless. Because of the fear and anxiety associated with the topic of illness, many people avoid conversations about the all-too-present reality of how physically vulnerable we are. Avoidance regarding talking about illness was a familiar, yet still surprising aspect of my experience. At one point, when I became tearful about my mom's condition, one of her friends insisted that she should get me some soup. I told her I was not hungry, yet she was out the door to the local supermarket. I did not want food, just someone to talk with. It was avoidance, live and in real time, just like I have written about. Unfortunately, evasion makes both patients and loved ones feel more distant and isolated.

If there is nothing else that I have learned in my work, it is that loved ones of patients need support and the space to talk. I have understood from patients and loved ones over the last several years that such space is hard to find.

Yet, I am convinced that it need not be so hard. In my book I explain why dealing with illness and death is so painful and complicated. Overcoming feelings of helplessness and anxiety goes a long way in helping people we care about who are ill or affected by illness.