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HEALTH SENSE Boston Globe Tuesday, February
Strive To Live With Chronic Illnesses:
Judy Foreman, Globe Staff
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
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
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
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
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
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 said she
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.''
Foreman's column appears every other week in Health & Science. Her past
columns are available on Boston.com and www.myhealthsense.com. Her e-mail
story ran on page E1 of the Boston Globe on 2/13/2001.
© Copyright 2001 Globe