After the Diagnosis

Living a rich, full life with chronic illness.

After the Diagnosis

Yes, you can.

One of the main messages we want to convey in the book After the Diagnosis is "yes you can." When illness strikes, you often come away from your doctor with a list of "don'ts" and "thou shalt nots." A diagnosis seems to constrict all the options; to paraphrase the poet John Donne, the life of the invalid "shrinks to the foot of the bed." But I believe it's possible to open up the space and reclaim some of what sickness has taken away. I recently saw a patient-I'll call him Frank-- with polycystic kidney disease, PKD, a genetic condition that causes large cysts to develop on the kidneys. A risk-taker and sportsman before he got sick, Frank asked me if he could bungee jump or skydive, given the current state of his kidneys. I said, "Well, maybe bungee jumping is out"-the sudden pressure at the bottom of the fall might cause a cyst to explode-"but skydiving might work." I told him about another patient of mine with PKD, a hockey player, who had a special girdle made out of a football shoulder pad, which he wore to protect his abdomen when he was on the ice. Frank left the office not only with instructions to mind his diet and take his meds, but permission to take flight.

Many of my patients have found their way to new and surprising adventures after the diagnosis, even if we had to negotiate exactly what, when, and how. One young man on immunosuppressive drugs had planned a camping trip on the Nile with his wife; I had to tell him that, unfortunately, every bacteria known to man was also camping on the Nile. He said, Okay, and booked a trip to the Amazon--at which point I called his travel agent and made arrangements for him to go on a walking tour of Scotland. Another patient had to give up scuba diving after he developed kidney disease but found a new life of adventure scouting for buried treasure in the Southwest, armed with a divining rod. I myself have gone into the Mexican jungle to climb a Mayan ruin, and have stood on the Great Wall of China and the top of Mt. Etna, wearing my insulin pump.

You should talk to your doctor about the terms of your adventure-you may need a hockey girdle, you may need to adjust your travel plans or find an alternative escapade-but I believe it's possible to expand life beyond the foot of the bed. Yes, you can.



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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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