At 68, Helen Freeman of Seattle has more chronic diseases than many of us will face in a lifetime. First, there’s her labored breathing 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, Freeman 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 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 Helen Freeman, they must learn to cope with chronic illness. Half of all Americans today (20 million more than researchers had previously estimated) 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 such as heart disease, Alzheimer’s disease, cancer, arthritis, epilepsy, mental illness and others that can be serious or life-threatening.
The toll of so much illness is enormous – $510 billion annually, said 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 illnesses account for 77 percent of direct medical expenditures in America, he said. It leads to 70 percent of all deaths, according to the federal Centers for Disease Control and Prevention, and it accounts for one third of the years of potential life lost before age 65.
But chronic illness exacts an emotional toll as well, and it is in that realm that researchers are increasingly looking to the hard-won wisdom of patients such as Helen Freeman to find ways to help others cope with diseases that might once have engulfed them 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. At 34, he was diagnosed with multiple sclerosis, a potentially crippling, neurological disease that now forces him to remain in a wheelchair much of the time.
In a recent article in the Harvard Mental Health Letter, Kingsbury stated 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 said. 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.”
The point, Kingsbury said, is 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, such as 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 said, but others do seem truly heroic and may appreciate some recognition of that. Some people, she said, 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, said Webster, who runs support groups for people with cancer, AIDS and other illnesses. Some people quit jobs they’ve always hated, she said. Others leave bad relationships. Others travel while they can.
“A lot of people grow and change” in profound ways, Webster said. Some long-term survivors in her AIDS group “have changed and grown and turned into some of the most evolved and spiritual people, and they never were that way before.”
That kind of growth in the face of adversity, whether one considers it heroic or not, is never easy, cautioned 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 said. 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 said, 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 returning to normal activities. But others can’t beat the disease, no matter how hard they try. For them, Holland said, 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 said, but many also find it helpful to join support groups or see individual counselors.
Ultimately, Holland said, 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, Holland saidshe believes one key to this meaning is not to 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.
Helen Freeman would be the first to acknowledge that this can be tough. “It’s not easy to stop thinking you feel rotten when you actually feel rotten,” she said. “After all, your whole body is yelling at you to pay attention.”
But what works for her, she said, is to find moments of pleasure – even if they last only a few seconds – and to complain a bit when necessary and then to go on living. Perhaps most important, she said, is to be realistic: “Don’t make perfect health the measure of who you are because perfect health is an impossible goal.”
SIDEBAR: Groups That Offer Help
There are numerous organizations to help people cope with chronic diseases. Among them are:
- The National Chronic Care Consortium, at 952-858-8999 begin_of_the_skype_highlighting 952-858-8999 end_of_the_skype_highlighting.
- The Mayo Clinic Health Oasis, at www.mayohealth.org.
- The National Organization for Rare Disorders Inc., at www.rarediseases.org.