Things should have been blissful for Carla Cantor, a New Jersey freelance writer who had just had her second child.
But soon after her son’s birth in 1990, Cantor, now 42, began experiencing bad pains in her wrist. Doctors suggested cortisone shots, wrist splints, not nursing the baby. Nothing helped.
As her pain spiraled out of control, so did her panic – and symptoms, which soon included hair loss and sun allergies.
With the doctors seemingly stumped, Cantor began her own research – and soon became panicked that she had systemic lupus erythematosus, an often debilitating autoimmune disease.
One night, feeling “so distraught I didn’t know what to do,” Cantor rushed to an emergency room, where doctors still couldn’t find a cause for her distress. She wound up spending the night – on the psychiatric ward.
In a sense, that night was a first step toward recovery for Cantor, who hopes her book on hypochondria, just out in paperback, may help others living in daily dread of disease.
As a culture, we seem to have managed, slowly, to destigmatize cancer, even to take away some of the misplaced shame over psychological problems like anxiety and depression. At least we seem able to talk more openly about such things now.
But hypochondriacs – who may constitute 6 to 12 percent of those who visit doctors – still get no respect.
Worry too much, or too loudly, about your health when doctors can find nothing very wrong, and many people – including those in the white coats – assume you’re faking it, hopelessly neurotic, or just looking for attention.
Wrong, say psychiatrists who study those who “somatize” excessively, or express emotional distress via bodily symptoms.
Many people who have health worries out of proportion to their medical condition are depressed or have underlying panic or anxiety problems, says Dr. Arthur Barsky, director of psychosomatic research at Brigham and Women’s Hospital.
Increasingly, researchers suspect some may have a version of obsessive-compulsive disorder, says Dr. Brian A. Fallon, Cantor’s co-author and a researcher at the New York State Psychiatric Institute.
And the more researchers understand about the inner workings of these patients, the more they are finding treatments that help.
In a small pilot study, for instance, Fallon found that the antidepressant drug Prozac helped 70 percent of patients, though he says it takes high doses – 60 to 80 milligrams a day, not the 20 to 40 mg used for depression. (Don’t increase your dose of Prozac or similar drugs on your own – for one thing, these medications can transiently increase anxiety and agitation.)
Fallon’s preliminary findings are so promising that the National Institute of Mental Health recently awarded him a $ 500,000 grant to do a bigger placebo-controlled study.
And non-drug therapies may help, too, says Barsky, who also has an NIMH grant to study 180 people to see if cognitive-behavioral therapy can teach them to worry less.
There’s no question that, on top of their misery – and hypochondriacs really feel the symptoms they express – these suffering souls carry an extra burden of stigma, probably because other people tend to ridicule or distance themselves from problems they don’t understand, says Dr. Ken Duckworth, a Massachusetts Mental Health Center psychiatrist.
To be sure, some people really do feign illness – the so-called malingerers and those with Munchausen’s syndrome. These folks know they’re not sick and fake symptoms to get attention or, in the case of some drug addicts, to get painkillers.
But people with hypochondria and so-called somatization disorder are quite different – they really fear they’re sick.
It’s normal to “somatize” at times, or have unexplained symptoms that prompt a medical visit – a mole that might be melanoma, a memory lapse that might be Alzheimer’s.
And it makes sense to check such things out. In fact, reassuring the worried well is a large and appropriate part of what doctors do; an estimated 50 percent of primary care visits are by people who turn out to have nothing seriously wrong.
But if your fears are constant and extreme, despite the lack of detectable disease, or if they’re out of proportion to your medical state, it’s time to ask what’s really going on.
For instance, if you repeatedly focus on a symptom and demand that somebody take care of you and even operate on you right away, you may have somatization disorder, says Dr. Charles Ford, a University of Alabama psychiatrist. Such people often worry more about getting rid of the immediate symptom than what the symptom may mean.
If you don’t care so much about your immediate pain or symptoms but are terrified they mean you have a fatal illness, you may be a hypochondriac, especially if you find yourself poring over medical books, cruising the Internet, and demanding endless, often expensive tests. Another clue is if you can’t stay reassured by good news, or you develop a scary new symptom as soon as you let go of an old one.
“These people suffer,” says Barsky. “It is as if they had cancer. They die every day.”
They also cost the health care industry an estimated $ 30 billion a year, say Fallon and Cantor, now director of publications at New York University Medical Center.
To address both their suffering and the economic costs, sometimes derided as “frequent fliers” or medical “addicts,” many health plans offer special programs.
Harvard Pilgrim Health Care, for instance, has a six-week course for those who have unexplained physical complaints or trouble coping with a diagnosed medical condition. It costs $ 88 for members and $ 140 for nonmembers.
The program is designed as an adjunct to other treatments, including psychotherapy, says psychiatrist Dr. Steven Locke, chief of behavioral medicine at Harvard Pilgrim.
But the program also cuts down on medical visits for those who take it, from an average of 11.6 a year before the course to 6.5 afterward, a savings of $ 428 a year per patient.
The program works by helping people “develop the capacity for awareness of recurrent behavior patterns” and change those that are counterproductive, adds Dr. Matthew Budd, an internist who designed the Harvard program and now runs a health care consulting company in Cambridge.
Procter & Gamble Co., which markets the Harvard course to managed care plans nationwide, clearly buys that. P&G won’t give specifics but says it is “very encouraged by early results.”
But others take a more cautious view. Education helps if ignorance is the problem, but it can’t substitute for needed therapy, says James Wrich, CEO of J. Wrich & Associates in Chicago, a firm that reviews efficiency for health care systems.
And there are other ways to save money and allay fears. One way is to offer more medical visits, not fewer, and to schedule them every few weeks, says Ford, the Alabama psychiatrist. “If they know they have an appointment scheduled, they’re less likely to need emergency room visits, which are more costly.”
But you don’t have to wait for your doctor or health plan to step in. If you think you freak out too much about health, you can try focusing on things other than your symptoms.
In one study, some people who had their teeth pulled were asked to rate their pain every 20 minutes, while others were only asked two hours later. Those who were asked to pay more attention to their pain reported more of it, notes Barsky.
And you don’t have to make medical woes the center of your identity. In one study, Barsky’s team interviewed people in a clinic, asking them to describe themselves.
People who were not hypochondriacs spoke of being teachers, fathers, of hobbies – even if they had cancer. Those who were hypochondriacs described themselves first and foremost as patients.
It can, of course, be tough to face up to that tendency in oneself, as Carla Cantor knows. But it can also be liberating. Cantor now believes that her fears stem from a car accident years ago in which she was driving and a friend was killed.
Today, she takes an antidepressant and has come to see her recovery as like that of an alcoholic: “You always have to be aware that you can relapse and that help is available. And to realize you’re not alone.”
Where to learn more
You might want to read:
- “Phantom Illness – Recognizing, Understanding and Overcoming Hypochondria;” by Carla Cantor with Brian A. Fallon, M.D.; Houghton Mifflin Co.
- “Hypochondria – Woeful Imaginings;” by Susan Baur; the University of California press.