After the Diagnosis

Living a rich, full life with chronic illness.

Too Sick. Not Sick. Just Sick Enough.

Sick in the "right" way

One of the most difficult tasks that confront patients is finding the "right" way to be sick. It's easy to be too sick-to become preoccupied, frightened, and overwhelmed. It's also tempting to be not sick-to deny illness, run away from the demands of the body, and pretend that everything's fine. The trick is to be "just sick enough"-to walk the line between obsession and neglect, paying the necessary attention in order to find the space and freedom to live well, despite illness.

Cathy, a woman with chronic pain, came to my office swamped with anxious thoughts, alert to every passing sensation, and aggrieved by her previous doctor's inability to make it all go away. Though I could help with her kidney problem related to taking pain medications, I couldn't make it all go away, either. Given that no doctor was able to treat her pain successfully, Cathy inevitably became more and more focused on it, leaving her "too sick" to live fully. In contrast, Bill O'Malley, a former cop, was a textbook example of "not sick": he never acknowledged his kidney disease and brushed off my suggestions for changes-less beer, fewer Doritos-that might have slowed its progression. Instead, he'd spend office visits telling me hilarious tales of his wild days (lots of beer, many Doritos) with his buddies at the station house. When dialysis became necessary, he refused to sign on, telling me, "Never mind, doc, I'm happy with my choices. I don't need to be on the machine."

I try to help people find the middle way between Cathy's obsession and Bill's denial. A couple I know, the Farajians, seem to have it down pat: Mrs. Farajian takes notes in my office and keeps charts of diet, exercise, lab values; Mr. Farajian takes his medications faithfully and follows advice on nutrition and supplements. They both take pleasure in his good health on this regimen, which allows them to spend time with grandchildren, to travel, and to live a full and active life.

No one is "perfect" at being sick, and finding the middle way usually requires some wobbles on either side of the line. People come with different personalities and styles that tip them in one direction or another, and there's the added fact that different diseases require different levels of attention. Diabetes requires quite a lot of monitoring, and for me, that's been problematic. Temperamentally I'm inclined to be "not sick" and the demands of my profession make it easy to forget my own care. But over decades, I've learned that if I pay a little bit of attention-check blood sugars, adjust meals and insulin to the best of my ability-I'm freer to do what I most desire, which is to forget that I'm ill.

 



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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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