http://health.medscape.com/cx/viewarticle/234086

December 2001
Judy Foreman, Medical Writer

At 68, Helen Freeman, all by herself, has more chronic diseases than many of us will face in a lifetime. First, there's the fact that she has great trouble breathing, even at sea level in Seattle, where she lives, because of extensive scarring from years of lung infections.

Then there's the diabetes, for which she needs daily medication. The glaucoma is no picnic, either: She's almost blind in one eye. She's also had melanoma and breast cancer.

Yet in 1981, she founded an organization to save the endangered snow leopards of Asia, a job that entailed frequent trips to Asia, where she gasped her way through pollution-clogged cities. She climbed mountains to study the leopards--and nearly died twice.

Mountain climbing was, "to put it mildly, very difficult," she recalls cheerfully. "I basically picked an animal that lives at 12,000 feet and I have trouble breathing at sea level." But she was determined not to let her illnesses slow her down.

Helen Freeman is a tough act to follow. But more and more Americans are finding that, like her, they must learn to cope with chronic illness. Half of all Americans today have at least one chronic illness and one in five has two or more, according to a recent analysis by researchers from the Johns Hopkins School of Public Health.

Granted, for some of the 125 million people with chronic illnesses, the problems are minor, like allergies that can be stabilized with medications. But 60 million others have multiple chronic conditions, many of which--such as heart disease, Alzheimer's disease, cancer, arthritis, epilepsy, mental illness, and others--are serious or life-threatening.

The toll of so much illness is enormous--$510 billion annually, says Jay Hedlund, deputy director of the Partnership for Solutions, a Johns Hopkins project aimed at improving the lives of people with chronic diseases.

Coping With Emotional Toll
 
But chronic illness exerts an emotional toll as well, and it is in that realm that researchers are increasingly looking to the wisdom of patients like Helen Freeman to find ways to help others cope with diseases that might once have been shrouded in shame or despair.

Take Dr. Steven J. Kingsbury, a man who is both patient and doctor. Kingsbury, 52, is an associate professor of clinical psychiatry at the Keck School of Medicine at the University of Southern California. He also holds a PhD in psychology and has MS (multiple sclerosis), a potentially crippling neurological disease.

In a recent article in the Harvard Mental Health Letter, Kingsbury, who is now in a wheelchair much of the time, explains why he believes that people with chronic illnesses should be neither pitied nor idealized by others--or themselves.

Pity can come across as condescending, Kingsbury says. Turning someone into a hero may not help, either. "I didn't get MS to prevent someone else from getting it, so it was not courageous. And when I go into a nice restaurant with my wife, that's not courageous either. It's because I like good restaurants."

To keep his disease in check, Kingsbury must take powerful drugs often used in cancer chemotherapy, drugs that cause nausea and diarrhea. Yet when these side effects struck after one recent treatment, he spent the weekend reviewing articles for publication, writing a chapter on a yearbook for mental health, and going over some statistics. And he got to work "bright and early Monday morning, though I did have to spend time in the bathroom."

Focus on Other Things
 
The point, says, Kingsbury, is not that he is some kind of hero, but that people with chronic illnesses--like anybody else--feel better if they focus on other things. "If I sit around contemplating my navel, why shouldn't I feel crappy? But if I do other things, I feel better. Anybody ... will suffer less if they have something better to do."

Other mental health specialists, like Ann Webster, a health psychologist at the Mind/Body Medical Clinic at Beth Israel Deaconess Medical Center in Boston, take a somewhat different view. Some people with chronic illnesses do want to be seen as normal, she says, but others do seem truly heroic and "make monumental changes" when serious disease strikes.

For many people with chronic illnesses, the diagnosis is a "wake-up" call to change the things that aren't working in their life, says Webster. Some people quit jobs they've always hated, she says. Others leave bad relationships. Others travel while they can.

That kind of growth is never easy, cautions Dr. Jimmie Holland, chairman of psychiatry and behavioral science at Memorial Sloan-Kettering Cancer Center in New York.

"It's really hard, having a chronic illness, and knowing it is changing your life and your future," she says. It's a real struggle for people to figure out "how to cope, how to do everything they normally do" and yet, if the prognosis is grim, to know that no matter how well they cope, they may not be able to change the course of their disease.

Like Kingsbury, she believes one key to this is to not let the illness become who you are. Other people can help by not treating you as if illness were the essence of your being.

Helen Freeman is the first to admit that this can be tough. "It's not easy to stop thinking you feel rotten when you actually feel rotten," she says. "After all, your whole body is yelling at you to pay attention." The key, she says, is this: "Don't make perfect health the measure of who you are," she says, "because perfect health is an impossible goal."

Judy Foreman is a visiting research associate in Women's Studies at Brandeis University and Fellow in Medical Ethics at Harvard Medical School. Her Health Sense column appears every other week. Past columns are available on www.myhealthsense.com.

Many organizations have been set up to help people cope with chronic diseases. Among them are
 

• The National Chronic Care Consortium, 952-858-8999.