Health information on the Internet is fueling the phobia
Diane Berman* started young. She remembers being at dinner when someone began talking about a man who had died from hardening of the arteries. "I realized I had all the symptoms: chest pain, trouble breathing," Berman recalls. "I remember being beside myself, going to my mother and saying, 'I think I have that!'" Berman was 4 years old at the time. This was her first brush with hypochondria, a psychological condition she has battled ever since.
Most of us have had our "I think I have that!" moments. But when a test or checkup puts us in the clear, we feel relieved and reassured. For hypochondriacs like Berman, however, this relief is brief, and the fear does not fade. The reassurance is what's fleeting -- not the worry. The worry hovers, symptoms regroup for another charge, and the conviction that one has a chronic, perhaps mortal illness flares up anew. Life goes on in a state of suspended health anxiety, as the person fears -- and believes -- the worst. For a hypochondriac, the fear of illness is the illness itself.
A misunderstood malady
Historically, it's been a long road to legitimacy for hypochondria, thanks to social stigma and its role as good material for standup comics. Who among us, for example, takes Woody Allen's classic neurotic musings seriously? In the film Hannah and Her Sisters, the character Allen plays announces he's bought a rifle to kill himself in case he finds out he has a brain tumor. To no one's surprise but his, he remains tumor-free throughout the film.
Although the possibilities for satire are obvious, the medical community has been slow to understand what makes a hypochondriac tick. When large-scale surveys were conducted in the 1950s and '60s to assess mental health in the United States, hypochondria wasn't even mentioned. "It wasn't thought to be important enough or interesting enough, and it was largely neglected by the psychiatric community," said Dr. Jerome Groopman of Harvard Medical School in an interview with The New Yorker.
The American Psychological Association did not add hypochondria (often called hypochondriasis) to its Diagnostic and Statistical Manual of Mental Disorders (DSM) until 1980. At that point, it was categorized as one of the "somatoform disorders," illnesses in which "there is no diagnosable general medical condition to fully account for the physical symptoms."
The DSM-IV (its most recent edition) defines hypochondria as a preoccupation with the belief that one has an illness, based on a misinterpretation of bodily symptoms. To qualify as hypochondria, this preoccupation must cause distress in the person's daily life and persist for at least six months -- despite medical evidence discounting the perceived illness. The immediate concern over, say, a headache, would not be how to treat it, but what underlying condition that headache suggests. This train of thought often leads the hypochondriac to a dire conclusion: This headache is the symptom of a brain tumor.
About 1 to 5 percent of the population suffers from hypochondria, and the disorder is believed to strike men and women equally. But Deirdre(she declined to give her last name), the moderator of Health Anxiety Support, an Internet bulletin board for hypochondriacs, says the vast majority of people who post on the Web site are women.
Generally, it's the gravest of conditions, such as a brain tumor, that the hypochondriac fears. Neurological disorders such as amyotrophic lateral sclerosis (ALS, or "Lou Gehrig's disease") and multiple sclerosis are also frequent targets, due to their vague, common symptoms like numbness or muscle problems. AIDS is another.
When she was 17, Berman watched one of the first "60 Minutes" features on the emerging AIDS epidemic -- and it became her biggest fear for the next 15 years. "I wasn't involved with anybody, I had almost no risk factors, but I thought 'Oh, my God, it's coming here, to Alberta, Canada,'" she explains with a laugh. "I was just convinced that every time I got a cold that was the sign: AIDS."
Berman, now 41, can identify her anxiety's occasional "remission" (the cancer metaphor is telling), but it never stays at bay for long. "Then there's a catalyst, a great big stressor -- it just takes one thing to trigger it," she says. "Something in the paper, or something about a friend of a friend it could be anything." One of her bouts of health anxiety arose when she saw a banner advertising a fundraiser for ALS. She took it as a bad omen.
This almost karmic, superstitious thought pattern is a common one for hypochondriacs. At Health Anxiety Support, there are over 2,400 members and an untold numbers of "lurkers." One member confesses that even reading the word "cancer" (referred to as "the C word") is a sign that she has it -- or it's just around the corner.
The C word seems to be a trigger for many hypochondriacs. Once, a minor pain in Berman's side convinced her she had ovarian cancer. After a period of debilitating anxiety, she finally went to get an ultrasound. In the days leading up to the test, "I was a basket case, in tears, doubled over." The ultrasound was negative, as her doctor expected. Reflecting on her lifelong struggle with hypochondria, Berman bemoans its profound impact on her daily life: "I've lost months It makes me so mad. Months of happy, productive hours."
Symptom surfing and cyberchondria
The wealth of health information available to us may be saving some people's lives, but for the hypochondriac, today's increased health awareness can be a dangerous thing. Berman says her ovarian cancer fears peaked just from seeing an ad in her local paper for Ovarian Cancer Awareness Month. For some, popular media and advertising are fueling a wellspring of health anxiety -- heightened daily by prescription drug commercials on television. (One pharmaceutical company's ad for acid reflux relief implies that if sufferers with severe symptoms don't take its newest proton pump inhibitor they could end up with esophageal cancer.)
The abundant drug advertising on television and in print, as well as the upsurge in health Web sites and online health assessments are all giving people greater exposure to frightening diseases. From around the world, each year seems to bring a new threat -- anthrax, SARS, the avian flu, the swine flu, West Nile virus. All this is enough to overstimulate anyone's health consciousness. Then there is Web surfing: A 2013 study by the Pew Internet and American Life Project found that 80 percent of Internet users have researched health information online.
The glut of material available on the Web -- valid and otherwise -- has upped the ante for hypochondriacs, providing fertile ground for self-diagnosis and giving rise to what the media have billed "cyberchondria." If you click around long enough, you'll diagnose yourself with something. "People have access to medical information with no ability to filter it with a rational perspective," says Deirdre, the Health Anxiety Support moderator. "You can get very detailed and sophisticated literature out there, stuff only a trained professional should be interpreting."
Symptom surfing often ends up reinforcing the belief in a worst-case scenario, Berman explains. "Bloating has about 3,062 other causes or sources, but when you are focused on your symptoms and you find one that falls in line with the subject of your investigation, it becomes simply one more 'missing link' in your puzzle." In this case, Berman ultimately linked bloating to one of her perennial favorites: ovarian cancer.
"It's an affirmation of your worst fear -- and a classic example of not being able to see the forest for the trees," she says. "I would strongly advise anyone with health anxiety to stay away from the Internet for health research -- don't even think about it. It's a great way to scare yourself senseless!"
Dr. Ingvard Wilhelmsen, who runs what may be the world's only clinic dedicated solely to treating hypochondria -- at the University of Bergen's Deaconess Home Hospital in Norway -- says today's world is hard on the hypochondriac. "If you are willing to be mortal and don't believe in your catastrophic thoughts, information is completely okay," Wilhelmsen says. "If, on the other hand, you spend most of your time and energy on not dying, and try to detect minor changes in your body or bodily functions as early as possible, reading about symptoms and disease can fuel your imagination and anxiety."
A challenging diagnosis
Although the medical community now has the DSM criteria at its disposal, coming around to an official diagnosis is fraught with obstacles. For starters, a doctor must investigate a patient's physical symptoms and discount any major ailments, explaining that the symptoms she's experiencing -- while real enough in themselves -- do not indicate that she has a grave illness. This could, depending on the patient's degree of insistence, require multiple office visits and various tests.
"It's very hard to get people to give it up completely. That level of sudden insight is very rare," explains Dr. James Bourgeois, director of psychosomatic medicine services at the University of California at Davis Medical Center. "You have to chip away at it."
One of Berman's trips to the doctor illustrates how hard it can be to convince a hypochondriac that she's not sick. "I had an ultrasound that I didn't really need done. The tech said, 'You're just fine.' I just looked at her and thought, 'You're too young to know that.' For days I waited for the phone to ring and have them tell me, 'We've reviewed your results and we made a mistake: You have a massive stage 5 tumor.'"
After concluding that the patient does not suffer from any particular disease, her doctor must conclude that she also shows heightened, prolonged health anxiety -- serious enough and for long enough to render a diagnosis. Then breaking the news that the patient's problem is ultimately a psychological one can be a touchy affair: This is exactly what patients don't want to hear, that it's "all in their heads."
Some conditions tend to overlap with hypochondria, further muddying the diagnostic waters, according to Bourgeois. These typically include depression, anxiety disorders, and obsessive-compulsive personality disorder (OCD). (Because hypochondriacs exhibit an obsessive preoccupation with their health and tend to compulsively check for symptoms, hypochondria is considered a close relative of obsessive-compulsive disorder.)
Treating hypochondria: A work-in-progress
Fortunately for sufferers, hypochondria is no longer ignored by the medical profession, and treatments are emerging. Many experts recommend cognitive-behavioral therapy, which Wilhelmsen advocates and uses in his clinic. Its goal is to help the patient come to terms with the fact that what he's experiencing is anxiety -- not a serious physical disease. But recognition is just part of the battle, Wilhelmsen says: "The patient is not healed when he realizes that he has health anxiety, but it is an important first step." Or as Berman puts it: "I know that I have OCD and severe anxiety -- but this time, it's something more. This time, I'm right -- this time, this time -- it never ends!"
Nonetheless, Berman thinks a patient's attitude can have a positive impact on treatment. "I do think there is something to how you present your concerns. My approach is to be articulate and rational when I'm explaining just how crazy I really am," she laughs. "I think there is a shift afoot in terms of the experience I have had. Among the new generation of physicians, mental health issues are legitimate medical issues. There is now a tendency to be more accepting. The most understanding doctor I had was not more than 35 years old." He put her at ease, Berman says. "'Do not feel bad about being here', he told me. 'If you cut your finger I'd stitch you up. This [hypochondria] is your medical problem.'"
Medication is one treatment option that gets a lot of endorsements on the Health Anxiety Support board. Deirdre, who struggled with health anxiety for 20 years, was inspired by other members who'd helped control their fears through medication. Fluoxetine (brand name Prozac) "made the biggest difference in my life," she says. When asked how she'd managed to overcome hypochondria, her reply was brief and to the point: Prozac and the hypochondria support board. A small 12-week trial at Columbia University found that "fluoxetine may be a useful therapy for hypochondriacal patients."
Berman has had mixed results with meds. She was once prescribed fluvoxamine, an OCD medication, but found it actually exacerbated her anxiety. Currently she's taking lorazepam (Ativan), an anti-anxiety medication, which has kept her anxiety to a minimum in the last couple months.
A whole lot of sense
Hypochondriacs may face unique challenges in the modern era, but at least they've got one very important resource: each other. A person up late at night convincing himself a headache is really brain cancer can visit the Health Anxiety Support message board and chat with someone who's had the same fears. The person who helps him out might be in the same area code -- or across the ocean.
"I Googled 'hypochondria' as soon as I had my first Internet connection. I actually cried out of relief that there were other people with my same fears. I have never met another hypochondriac in my 'real' life," Deirdre, the board's moderator, explains. Given the social stigma often associated with hypochondria, it's no surprise that sufferers find the Web a liberating forum: "Evidently the Internet offers a masking of sorts, and people are more willing to admit to weaknesses," she says.
"I don't talk about this," Berman says. "My husband knows, and my best friend, but how do you go and explain this to someone? I've seen so many counselors and psychologists, and I can say that this online support group has been better than 90 percent of my counseling."
Berman believes that it's crucial to get advice and guidance from people who share your experience. Her most productive therapy sessions were with a counselor who suffered from panic disorder herself. And she's gained enormous insights from the message boards. "They've been in your shoes. And you read what they've posted -- it's so eloquent and pointed, and they're making a whole lot of sense.
"Health anxiety is like a big cloud over your head, following you around," Berman continues. "What is it going to be today? Why can't I just move past this?" Flipping through the newspaper recently, Berman, who has a two-and-a-half-year-old daughter, couldn't help browsing the obituaries. "There's a woman, same age as me, dies of cancer, leaves two kids, ages 2 and 4. It made me shake for two days. That's the sort of thing that keeps me up at night."
While hypochondria has put her through so much in the years since her dinner table fear of heart disease at age 4, Berman remains optimistic. She has her best days when she forces herself to "just get going." When her daughter gets home from daycare, she does something active with her. "I exercise, and keep my mind occupied. And then I realize, 'I haven't had any symptoms for two hours!' And it's comforting. I have a very lovely, understanding husband. I'm a mom and I have a beautiful daughter -- she deserves a happy mom."
*Diane Berman is a pseudonym.
Interview with Professor Ingvard Wilhelmsen, Institute of Medicine, University of Bergen
Interview with Dr. James Bourgeois, director of psychosomatic medicine services at the University of California at Davis Medical Center
Interview with Deirdre, Health Anxiety Support moderator
The New Yorker. Q and A: Treating Hypochondria. http://www.newyorker.com/printables/online/030811on_onlineonly
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Diagnostic and Statistical Manual of Mental Disorders, fourth edition. Text revision: FSM-IV-TR. Somatoform Disorders, p. 485. American Psychiatric Association. 2000.
The Merck Manual of Medical Information, second home edition. Hypochondriasis. http://www.merck.com/mmhe/print/sec07/ch099/ch099d.html
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About ALS: Initial symptoms of the disease. ALS Association.
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PEW Internet and American Life Project. Health information online. http://www.pewinternet.org
PandS Journal. Prozac: On trial for hypochondria. Spring 1995, Vol. 15, No. 2. http://cpmcnet.columbia.edu/news/journal/
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