In 1997, after giving a talk at a conference, Marc Feldman was approached by a woman with a strange story. As a nurse, she had participated in an online support group for people with cancer. One member of the group had claimed to be a Catholic monk who was dying of cancer. He posted lengthy messages about his loneliness, and he said that he had no money to pay for treatment because, as a monk, he had taken a vow of poverty.
As the man's lengthy and frequent posts continued, some in the group grew suspicious, in part because the man's claims of dealing with advancing cancer seemed contradicted by his energetic writing. Eventually, another member confronted the "monk," who admitted to lying about both his illness and his profession.
Although the details of this case were new to him, Feldman was more than familiar with this type of behavior. By 1997, Feldman had become an expert on factitious disorders. He had studied extensively both Munchausen syndrome, a factitious disorder in which a person feigns or induces illness in him or herself, and Munchausen by proxy, in which a person induces illness in someone else. Usually, Feldman says, such cases involve a mother inducing illness in a young child. And after talking to the nurse about the case involving the deception in an online forum, he coined the phrase Munchausen by Internet to describe this behavior.
The term Munchausen syndrome was introduced to the medical literature in an article in The Lancet in 1951 and refers to Baron von Munchausen, an 18th-century German soldier who according to legend told exaggerated stories about his exploits.
A few cases of Munchausen syndrome have become famous, such as the case of Wendy Scott, a British woman who spent years faking illnesses until, finally, she was unable to convince doctors when she actually did become seriously ill. But generally, Feldman says, health-care providers pay little attention to factitious disorders, despite the fact that, according to the American Psychological Association, perhaps one percent of hospitalized patients exhibit a form of factitious disorder, meaning there are hundreds of thousands of cases each year in the U.S. alone.
Feldman didn't know what Munchausen syndrome was himself until he was a faculty member at Duke, several years after graduating from Dartmouth Medical School, but he says he always had a skeptical mindset. He remembers prefacing his notes about patient complaints with phrases such as "the patient stated," or "the patient observes," rather than simply writing the actual complaint. "I think I was always vaguely aware that, while what the patient tells you is the single best indicator of what's wrong with them in most cases, sometimes patients do have misperceptions or actively deceive doctors," he says.
It seems hard to believe that so many people would feign illness, and that they would be able to deceive others. But, Feldman says, it's not as hard to fool doctors as you might think.
Feldman first treated a patient with Munchausen syndrome as a faculty member at Duke University in the late 1980s. He got a call one day from the chair of the Department of Psychiatry asking him to see a woman who had claimed for a year and a half that she had breast cancer, only to admit finally that she had made it up. Before being found out, the woman had gone so far as to shave her head and lose 60 pounds to maintain the appearance of undergoing treatment. But it simply wasn't true.
Feldman wrote up the case for a journal, and the story was picked up by the Los Angeles Times. Soon after, Feldman was asked if he'd be interested in writing a book about Munchausen syndrome, despite the fact that he had only worked with a single patient at that point. Although he hesitated at first because of his lack of experience, he found himself inundated with questions about other Munchausen cases, quickly providing him more than enough material for a book. In fact, Feldman has now written four books about Munchausen syndrome, one intended for other health-care professionals and three others aimed at a lay audience. He notes that the writing classes he took at Dartmouth, including one with Pulitzer Prize-winning poet Richard Eberhart, prepared him well for the experience of writing for the general public.
In 1996, Feldman established a website dedicated to providing information on Munchausen syndrome, which he still maintains. He began to hear about more and more cases, even as he was advised by senior physicians that the field could be a dead end, in part simply because it was thought that patients with Munchausen syndrome were just trying to fool doctors. "There really was a feeling that these patients were exploitative, that there was real volition on their part to make doctors look bad," Feldman says.
That is certainly one reason that some people feign illness, he notes, but he has also found that the condition can be treated successfully. "My focus was on whether there was a depression or bipolar disorder or some other more treatable psychiatric ailment that was fueling the behavior," he says. "And if we could treat that underlying ailment, would the patient experience less pressure to engage in the deceptions?"
Over the years, Feldman has encountered patients who have faked an almost unbelievable range of illnesses, from diabetes to cancer to quadriplegia to insomnia. Often, Feldman says, the behavior is a cry for help. A person may see the positive attention lavished on people with cancer, for example, and crave that experience. Some may go to extreme lengths to gain that attention, including injecting themselves with bacteria and even undergoing risky surgeries. It can be a way for people to feel in control at a time when they may otherwise feel overwhelmed.
But despite the attention some cases of Munchausen syndrome have received from the media, Feldman believes that the condition is underrecognized by physicians. "I think the medical community is still uncomfortable with illness deception and hasn't embraced the fact that there's often a lot doctors can do to interrupt the behavior."
Feldman has also spent a great deal of time working with patients and families affected by Munchausen by proxy and Munchausen by Internet. Although Munchausen by proxy is related to Munchausen syndrome, Feldman draws a stark distinction between the two, arguing that Munchausen syndrome is a mental disorder but Munchausen by proxy is not. "It's a form of child abuse, but not a mental disorder," he says.
It's a tricky issue for health-care providers to accuse a parent of harming a child, Feldman notes, but it's also a very serious matter, and Feldman wishes it were taken more seriously by child protective services agencies. "There's a nine to ten percent mortality rate in Munchausen by proxy cases according to the literature, making it perhaps the most lethal form of child abuse," he says.
Feldman has seen an increasing number of Munchausen by Internet cases over the years, and he doesn't expect that to stop soon. The Internet, he points out, makes it much easier for a person to gain the expertise they need. "It used to be that a Munchausen patient would need to go to the medical library, pull out some weighty tomes, and research over many hours or days the illness they intended to falsify," he says. "With the Internet, you can become a near-expert on virtually any medical problem just by visiting Wikipedia."
Feldman spends much of his books talking about not just the patients but the effects of Munchausen syndrome on the families and friends of patients. "It's really all-consuming" for them, he says. "The emails and calls I get speak to the extent of the desperation that these people feel trying to change the behavior of another person. . . . These cases tend to consume the family and friends. They're the ones who come forward most of the time, not the patients themselves."
Feldman has also found that those victimized by people with Munchausen syndrome can become so invested in the person's deception that it becomes hard to see the truth. "A part of them has been hoping that all their efforts haven't been misguided," he says.
Feldman has done a lot to spread the word about Munchausen syndrome, although he says that media interest tends to outweigh the interest of other medical professionals. He recently appeared on the TV show Dr. Phil, for example, to talk about Munchausen syndrome. "I've even been interviewed by the National Enquirer, so I will talk to almost anyone," he says. "The goal is to get the word out, because this is understudied and underrecognized."
After years of serving as a faculty member, first at Duke and then at the University of Alabama, Feldman left academic medicine and now works from home. He consults for insurance companies on possible cases of Munchausen syndrome and works with patients with Munchausen syndrome and their families. Even after all this time, he remains fascinated by the topic. People ask him if he's sick of it. His response: "I'm only more interested as time goes by. That's something my own psychiatrist, if I had one, would probably want to explore with me."