For Many, Chronic Illness Gives Life a Sharper Focus
At 68, Helen Freeman 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 show 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 with a serious lung problem was, “to put it mildly, very difficult,” she said 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 any more than necessary.
More and more Americans are finding that, like Freeman, they must learn to cope with chronic illness. Half of all Americans today (20 million more than researchers had anticipated) 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 in Baltimore.
Granted, for some of the 125 million people with chronic illnesses, the problems are minor, such as allergies that can be stabilized with medications. Still, 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. Indeed, chronic illness accounts for 77% of direct medical expenditures in the United States, he says. And it leads to 70% of all U.S. deaths in America, according to the federal Centers for Disease Control and Prevention.
Chronic illness exerts an emotional toll as well, and it is in that realm that researchers are looking to the hard-won wisdom of patients like 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, who is both patient and doctor. Kingsbury, 52, is an associate professor of clinical psychiatry at USC’s Keck School of Medicine. At 34, he was diagnosed with multiple sclerosis, a potentially crippling neurological disease that forces him to remain in a wheelchair much of the time.
In a recent article in the Harvard Mental Health Letter, Kingsbury explains why he believes that people with chronic illnesses should be neither pitied nor idealized, either 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. 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 take a somewhat different view. Though some people with chronic illnesses want to be seen as normal, others do seem truly heroic and may appreciate some recognition, said Ann Webster, a health psychologist at the Mind/Body Medical Clinic at Beth Israel Deaconess Medical Center in Boston. Some people, she says, “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.
Personal growth in the face of adversity, whether one considers it heroic or not, 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.
Initially, the big problem may be learning to live with the uncertainty about how disabled you may become and whether your life expectancy will be shortened. It’s a real struggle, she says, for people to figure out “how to cope, how to do everything they normally do” and yet, if the prognosis is grim, keep in the back of their minds that, no matter how well they cope, they may not be able to change the course of their disease.
Some people can throw their energies into beating their disease and return to normal activities. But others can’t beat the disease, no matter how hard they try. For them, Holland says, the challenge is: “How can you put new meaning into your life when your life got shattered?” Many people can do this on their own, she says, but many also find it helpful to join support groups or see individual counselors.
Ultimately, Holland says, the task is to “make meaning” in the face of disability or imminent death, to reassess what’s still important and what you can still do, when your old goals and dreams can no longer be met.
Like Kingsbury, she believes one key to this meaning is to not let the illness define you. Other people can help buttress this outlook by not treating you as if illness were the essence of your being and by continuing to talk to you about the things you’ve always been interested in.
Freeman would be 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.”
What works for her, she says, is to find moments of pleasure, even if they last only a few seconds, to complain a bit when necessary and then to “go on living.” And perhaps most important, be realistic. “Don’t make perfect health the measure of who you are,” she says, “because perfect health is an impossible goal.”
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Judy Foreman writes a syndicated column on health issues. She is a fellow in medical ethics at Harvard Medical School. She can be reached at foreman@bellatlantic.net. Her column will run occasionally in Health.
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Organizations That Can Help You Cope
There are numerous organizations set up to help people cope with chronic diseases. They include the National Chronic Care Consortium, (952) 858-8999, and the National Organization for Rare Disorders Inc., at https://www.rarediseases.org.
