Sunday, February 15, 2004
San Francisco Chronicle
At her most worried, Melissa Woyechowsky sometimes spent four hours a day on the Internet looking up her symptoms. There was the tingling, the numbness in her limbs, insomnia, fatigue. She fretted over them all.
"Multiple sclerosis was a big one,'' she said. "And HIV and cancer. I was doing these searches, and it had almost a magical aspect to it. I was on the Internet and an MS ad popped up. I thought, 'It's a sign.' "
It turns out that Woyechowsky, an artist in the Southern California desert town of Twentynine Palms who used to live in San Francisco, had none of those maladies. What she had, she learned later, was health anxiety, a fixation that affects an estimated 2 to 3 percent of adults in America, but which often goes undiagnosed -- though not undiscussed, at least on the Internet.
Doctors used to call it by a common name -- hypochondria, a condition documented for almost 2,000 years but little studied in modern times. The name described a real illness, but carried such a negative connotation that few wanted to hear it. Today it is often referred to as health anxiety or a "somatoform disorder," where symptoms suggest a disease not explained by a medical diagnosis, or even, in the age of the Internet, "cyberchondria."
Whatever the name, those who have it face an ever-expanding vault of health information. These days, Americans are bombarded with more health news than ever -- whether it's ads for new cholesterol-lowering drugs or warnings about SARS, mad cow disease and the flu. And much of it is confusing. Turn on the television and there are commercials for irritable bowel syndrome, acid reflux disease or social anxiety. Click on the Internet and there are thousands of Web sites devoted to every major -- and esoteric -- illness.
The sheer volume of available material is enough to make even the healthiest person reach for a thermometer. But for those who suffer from health anxiety -- people who find themselves obsessed with their symptoms -- the barrage can be overwhelming.
Searching for health information is one of the most popular online activities, according to a July 2003 survey by the Pew Internet & American Life Project. The survey found that 80 percent of adult Internet users spent time looking for health information, and a small minority, about 6 percent, surfed for health information every day.
"The Internet is a great resource, but it leads people in many directions, some of which are good and some of which are bad,'' said Dr. Brian Fallon, an associate professor of psychiatry at Columbia University and a leading researcher on hypochondria. "If you suffer from health fears, it becomes a nightmare. You type in a symptom and it comes up with many disease possibilities. You learn about more subtleties and horrors. You go into a chat room and throw out your symptoms and people say you have lupus."
Take, for example, a woman, "Michelle, 73,'' who said in an e-mail conversation with The Chronicle that when her health anxiety peaked she "could spend the better part of my work day looking up symptoms ... mainly symptoms of HIV, and of course I swore I was infected."
Or a woman who calls herself "mominaz," who described via e-mail her health anxiety odyssey after she had a baby and developed a tingling sensation in her leg. Conversations she had on an online message board convinced her that she had MS, even though a doctor later said she didn't. Whenever she felt a new symptom, she'd spend all day researching it.
"I would feel shaky, as if my head was shaking or vibrating ... and look up that symptom and find horrible diseases," she said.
She panicked about a lymph node on her neck. Research in books and on the Internet led her to the conclusion that she must have cancer. She ended up going for a blood test and mammogram, both of which were normal.
The two women found their way to the Health Anxiety Support Web site that Woyechowsky started to help others suffering from the obsession that began for her when she was in grade school in San Diego. She remembers poring through medical information she found lying around her grandmother's house.
"I enjoyed grossing myself out," she said. "But then I started dwelling on it. I read about skin rashes and scarlet fever or trembling or neurological disease."
In her 20s and living in San Francisco, the worries became full-fledged. She had sporadic outbursts of anxiety, where she was convinced that she had a terminal condition. More than once she found herself at St. Luke's Hospital getting checked out for something she didn't have. Then she met her fiance and the two moved to Cincinnati to be closer to his family. She felt isolated in her new home, and her symptoms worsened. She started feeling tingling in her arms and legs and had insomnia.
The couple married and moved back to California. Though happy to be back, she felt worse physically. Her MS fears intensified. She stayed up at night anxiously reading Web sites. One had a discussion of something she hadn't considered -- anxiety.
"I started looking up anxiety on the Internet and realized others have this,'' she said. "I started feeling not so abnormal."
Eventually she went to a psychiatrist who suggested Prozac. Woyechowsky, now 35, believes that it did help her, but she also credits the support from others she found online. She now considers herself in remission: "It's a little bit like being an alcoholic. You're never really over it, but it's definitely in very serious remission," she said. Her Web site still buzzes.
Postings vary from discussion of common symptoms -- fuzzy feeling in head, headaches, tingling in limbs, exhaustion, poor memory -- to specific concerns. One woman recently worried that scalp soreness after she took out a ponytail holder might indicate an illness. Another was concerned about the frequency and color of her bowel movements. Both received ready reassurance from fellow Web site users that they weren't sick -- or alone.
But often reassurance is not enough for people who suffer from serious health anxiety. Fallon and other researchers believe that many of them have underlying conditions such as obsessive compulsive disorder or depression. Others think American culture, which convinces people they constantly have to be working and getting ahead, even when they are sick, plays a role.
Fallon said he first began studying the effectiveness of antidepressants on health anxiety in 1990, but his work got off to a slow start. After sending hundreds of letters to doctors asking for referrals, he got exactly one response. Doctors commonly complain that much of their time is spent trying to help people with hypochondria -- studies have shown that 30 to 40 percent of patients in primary care practices don't have an identifiable physical condition for their pains -- but none wanted patients "to feel dismissed or ridiculed," said Fallon.
"In our society there is so much stigma to mental illness," said UCSF psychiatrist John Chamberlain. "It's easier to accept that you have a medical diagnosis than to say I'm depressed or anxious."
And medical schools don't spend enough time teaching about hypochondria, he said, although it is included in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders.
In fact, it was recognized long before that. A Roman physician described it in A.D. 130. Later, in the 18th century, nonspecific complaints were thought to center in certain physical areas -- particularly the upper abdomen in the cartilage beneath the breastbone, which is the basis for its name: hypo for under and chondros for cartilage. In the 19th century, despite medical awareness of hypochondria as a real condition, it took on the current connotation of malingering.
Fallon said that certain strategies that have proved useful, including spending time with patients to talk over emotionally distressing events, or making regular appointments for anxious patients, are unlikely during an era when doctors feel pressure about reimbursement rates.
"People with health anxiety consume an enormous amount of health care resources," said Dr. Toni Brayer, an internist and past chief of medical staff at California Pacific Medical Center in San Francisco. "They doctor-shop, wear the doctor out and don't get what they need."
No matter how much time and how many visits a patient has with an internist, most HMOs pay a flat yearly fee -- about $115 per patient. So doctors are in a bind. What works best for anxious patients, said Brayer, is having a "continuous caregiver who understands and listens."
"Having a relationship is the only thing that saves you," she said.
Identifying the problem as anxiety, instead of hypochondria, often makes it easier for patients to realize there is a real problem that is not necessarily driven by a physical condition, said Fallon, who eventually placed a newspaper ad for his study asking for subjects who had "illness concerns."
He found several dozen for his study, whose results showed that Prozac was beneficial. Other studies have shown that antidepressants, cognitive behavioral therapy or a combination of both help most people.
Brayer believes that patient education can also help, though that doesn't mean spending hours on the Internet looking up illnesses. Many doctors find that online information, books and other health materials are useful for patients. Others flinch when a patient presents them with a thick printout of information. Fallon advises his patients with health anxiety to avoid looking at Internet information.
"Sometimes it's useful, but it's unfiltered," said one prominent San Francisco internist who did not want to be identified because he was concerned that anxious patients might think he was critical of them. "It's like cracking open a medical textbook and trying to read it."
He said he makes regular appointments for anxious patients, finding that reassurance helps. Also, he said, "even hypochondriacs get sick."
"What helps a lot of these patients is to let them know the physician
will keep working with them," said Fallon. "There are some who say the
golden age of treating hypochondria was 100 years ago, with the old style
of family doctors who used to talk to you."
Copyright © 2004, San Francisco Chronicle