After the Diagnosis

Living a rich, full life with chronic illness.

The "When" Factor, Part I

The time in your life when illness strikes shapes how you cope.

Many factors affect the course of a chronic illness, but an extremely important one is the developmental moment in life when sickness strikes or when exacerbations and crises occur.  The disease has its own relentless chronology, but the ill person has a time line, too--a life story apart from the illness.   Inevitably the disease and the person are going to in some sense collide, and the "when" factor is going to be significant in how a patient copes.

In After the Diagnosis, in a chapter called "The Growing Point," the story of Anne, a young woman who became insulin-dependent at age ten, illustrates the kind of serial adjustments people make as the double narrative of the life and the disease unfold in time.   As a child Anne was notably compliant, a classic "good girl," checking blood sugars, following a strict diet, regularly injecting insulin.  When puberty arrived and her body changed, she felt suddenly confused about her food intake and her insulin requirement; by the time she hit high school, she had developed anorexia, which seemed to take care of everything at once-less food, less need for insulin, better control.  But this adjustment failed her when she went to college and had a critical episode of hypoglycemia: a friend found her lying on the floor in a pool of blood-she'd fallen out of the upper bunk and cracked her head, having taken her insulin and then fallen asleep.  After this, Anne went completely the other way; terrified of low blood sugars she became obese, gaining 80 pounds.  It was only after several years in therapy that she was able to understand her eating disorder and return to a normal weight.   Testing the extremes-wobbling between starvation and bingeing-turned out to be a means of locating the right balance for herself as she moved from adolescence into young adulthood. 

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Because Anne's disease hit in childhood, she was faced with the job of growing into herself and her body as diabetes continued to make daily metabolic demands; every meal, every bit of exercise, every cognitive task-things other people did with unconscious ease-- required a tricky balancing act.    Childhood diabetes may pose particular challenges developmentally, but all patients with chronic illness face some version of what Anne faced.  Patients have to address life tasks even as the illness goes its own way.   A young adult approaching marriage needs help to squarely discuss his Hodgkin's lymphoma with his fiancé.  A woman who is going through a much-wanted "high risk" pregnancy needs extra help with her kidney disease and extra support from her husband.  A middle-aged man with heart disease suddenly can't keep up with the demands of his job and comes up against his illness in a whole new way.   

Very often an "illness narrative"-that double-stranded story of a disease and the person who has the disease-takes the shape of a journey into knowledge, marked by critical moments when new learning occurs.  Opening oneself to one's actual experience, understanding the "when" factor and the particular demands of a given moment, can help a person find a growing point into the future. 

 

Julian Seifter, M.D., is a professor at Harvard Medical School, and the chair of the Ethics Committee on Human Research at Brigham and Women’s Hospital in Boston.

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