When Pam Cohen, a 41-year-old bereavement counselor, first heard about the Kaycee Nicole Swenson hoax, her first thought was Munchausen.
Kaycee was a 19-year-old Kansas woman who chronicled her painful battle against leukemia on a Web log. The site elicited a sympathetic following of well-wishers, who collectively grieved over Kaycee's death on May 15.
When it was revealed that Kaycee was actually 40-year-old Debbie Swenson, a very-much-alive homemaker in Peabody, Kansas, The New York Times declared it an elaborate Web hoax.
But to Cohen, Swenson's "hoax" sounded a lot like Munchausen by Internet, a recently identified mental disorder where sufferers go into chatrooms and other online communities, pretending to be gravely ill. Cohen, who became romantically involved with a Munchausen sufferer she first met in an online support group, describes the experience as "emotional rape."
Munchausen Syndrome is the severest form of what is known in medical circles as factitious disorders, where a patient feigns, exaggerates or self-induces illness. Known among doctors as "black hole patients," "ER jumpers" or "heart sinks," people with Munchausen often go to desperate lengths to prove they are sick.
In Munchausen by Proxy, parents will abuse their children in order to get them admitted to hospitals.
Dr. Marc Feldman, an expert in factitious disorders, said he learned of the Internet version of the disorder in 1997, when several people contacted him after finding out they’d been duped by a fellow online support group participant.
"In real life, one usually has to feign illness ... make an effort to go to the ER room, put on a show, and often, to keep the ruse up, endure unnecessary medical treatments and even surgery," said Feldman, a University of Alabama in Birmingham professor and author of Patient or Pretender.
"Online, one can quickly acquire an education, find a discussion group or some other online forum dealing with the phenomenon, and be accepted instantly. That’s the explicit purpose of these groups: not to question. They receive real care, concern, even love. There’s a sense of power, and if it goes badly at any point, there’s instant escape."
Feldman can’t estimate how many people have the Internet disorder because the cases often go undetected or, at least, unreported.
In light of the physical threat that real-life Munchausen poses to those who have it, the Internet strain seems relatively harmless. A chatroom for Munchausen sufferers that Cohen hosts reads like a catalogue of grotesque self-abuse.
One poster admits to injecting urine into her thigh. Another confesses that she’s really tempted to rub fecal matter into a self-inflicted wound -- again. Another admits to receiving unnecessary dialysis. But for those who’ve been victimized online, the emotional and, sometimes, financial damage is real.
Catherine Skidmore, a 26-year-old theater electrician and designer, bought a plane ticket from her home in New York to Chicago when she learned that a friend she’d made through a theatrical e-mail list she hosts had gone into a coma.
"I started getting e-mails saying she was sick and in surgery. There was no reason to doubt it," Skidmore said.
She went as far as to elicit cards and flowers from cast members of the Broadway musical Rent, her sick friend’s favorite show. Eventually, inconsistencies and dramatic fluctuations in the friend’s purported illness led Skidmore to investigate. A few phone calls to hospitals and parents unmasked the truth: The coma, pacemaker surgery and multiple brushes with death had all been made up.
When a person’s fakery is revealed to the online group -– usually after a series of inconsistent posts or obvious factual errors -- Feldman describes the aftermath as "devastating" to individuals who’ve invested emotional energy in the person and, also, to the group, which often becomes divided between those who still believe and those who don’t. Feldman recalls one instance where a Munchausen by Internet sufferer’s "son" logged on to say his father had committed suicide after several group members confronted him.
"Imagine if a person you loved had a double life and everything about them was a lie," Cohen said. "I found it hard to get real-life support. It’s a disenfranchised grief when you’re a victim of these people. People say 'How could you be so stupid?' or they dismiss your feelings: 'You should be glad she didn’t take all your money.' You’re left with emotional rape and nobody wants to deal with it."
Cohen, in addition to hosting two sites (one for Munchausen sufferers and the other for victims), is making a documentary about the syndrome. She’s also written letters to Bill Gates, Steve Case and executives at iVillage, urging them to include warnings in their chatrooms about the possibility of factitious posters.
The paradox of Munchausen, online and off, is that those who are diagnosed with it aren’t pleased to learn that they have a real disorder, a reaction Feldman ascribes to the stigma society attaches to mental illness.
"A psychiatric illness isn’t nearly as sexy as a physical one. Being in physical pain, bearing with it, is considered laudable," he said. "We go to patients and say, 'We agree with you that you have a very serious illness and need care by a professional. It’s not physical; it’s mental, for which a psychiatrist is more than pleased to offer treatment.' They usually flip you the bird."
