Online Support Groups: Separating Wheat From Chaff
September 1, 2000 5 minutes read
Online Support Groups: Separating Wheat From Chaff
Internet Offers Virtual Support, but Beware of the Fakers
By Julie Crawshaw
In recent years, the internet has emerged as a place to find "virtual support groups" for a wide variety of medical disorders. Chat rooms, newsgroups, independent bulletin boards, discussions sponsored by Web sites, e-mail, and Internet Relay Chat all offer opportunities for sharing experiences with and receiving support from others.
Because of the intense psychological strains that usually accompany critical illnesses, the families of critical care patients may be especially vulnerable to abuses that can occur online. Critical care professionals need to be aware of the extensiveness of medical communication formats available on the Internet. Critical care physicians who participate in online discussions or counsel patients and family members who do, need to recognize the benefits and perils of this new medium.
While acknowledging that online groups often provide invaluable sources of information and compassion for patients and families, Marc D. Feldman, MD, professor of psychiatry at the Center for Psychiatric Medicine at the University of Alabama at Birmingham, offers some strong cautions about believing everyone who participates is genuine.
"There are people who misuse these groups, offering false stories of personal illness or crisis, a sort of Münchausen by Internet," Feldman says. "Problems can arise when people with real illness act on fraudulent recommendations from these attention seekers."
Feldman has tracked 21 such cases. He presents four of them in a paper published in July by the Southern Medical Journal,1 calling for increased vigilance by health care professionals for misleading information spread on the Internet. Until recently, Feldman had e-mail capacity on the Web site he started in 1996 (www.munchausen.com). "That’s how I learned about these cases," he says. "I didn’t go to them, they came to me."
How to Tell the Valid From the Fantastic
Typically, the people who contacted Feldman had belonged to an online support group. They wanted to report that they had been victimized with the discovery that someone had been feigning illness and appropriating a lot of time and attention from people who authentically had that ailment. "I have to surmise what the motivations are, because generally the individuals who falsify illness, once confronted, disappear, though I do know of some who showed up in other online support groups for other illnesses," Feldman says.
Most online factitious disorder perpetrators have personality disorders, just as their offline counterparts do. Formally recognized by the American Psychiatric Association in 1980, factitious disorder is a diagnosis for someone who either feigns or produces illness in order to commandeer the status of the sick role. Münchausen’s syndrome refers to the most severe 10% of factitious disorder patients. "These people have essentially evolved a lifestyle around getting unwarranted treatment for their nonexistent illnesses," Feldman says.
In essence, these are people who lie to doctors and others to appear to be a patient. The motivation is some kind of emotional gratification. "It’s not simply that they’re after disability payments or narcotic medications or evading criminal prosecution or military service," Feldman says. Unlike hypochondriacs, who over interpret physical sensations and catastrophize, those with factitious disorder know their illnesses are nonexistent and intend to deceive. "I suspect the 21 cases I know about are the tip of the iceberg," Feldman says. "After all, the cases that were reported to me only came to me because people had taken the initiative to track down my Web site and let me know about them."
On the other hand, Feldman points out, there are tens of thousands of virtual support groups and most of them are probably extraordinarily beneficial. When factitious disorder is present, group members begin to feel, over time, that the factitious individual is misusing the group to garner attention. Feldman says this can emerge in several different ways. One giveaway is that the information that they provide begins to become increasingly implausible. "You start to wonder how many crises one person can face. Whenever anyone else in the group starts to attract attention, factitious individuals come up with a new, horrendous event that diverts the attention back to themselves."
Specifically, Feldman offers the following behaviors as clues for detecting factitious Internet claims:
• The posts consistently duplicate material in other posts, in textbooks, or on health-related Web sites.
• The length, frequency, and duration of the posts do not match the claimed severity of the illness (e.g., a detailed post from someone claiming to be in septic shock).
• The characteristics of the supposed illness and its treatment emerge as caricatures based on the individual’s misconceptions.
• Near-fatal exacerbations of illness alternate with miraculous recoveries.
• Personal claims are fantastic, contradicted by later posts, or disproved (e.g., a call to the hospital reveals that there is no such patient).
• There are continual dramatic events in the person’s life, especially when other group members have become the focus of attention (e.g., as interest in one person started to wane in her group, she announced that her mother had just been diagnosed as terminally ill as well.).
• The individual complains that other group members are not sufficiently supportive and warns that this insensitivity is undermining his/her health.
• The individual resists telephone contact, sometimes offering odd justifications (e.g., it would be so upsetting as to cause a medical catastrophe, or the telephone lines in the building do not permit incoming calls) or making threats (e.g., he/she will run away if called.)
• There is feigned blitheness about crises (e.g., a cardiac arrest or assault) that will predictably attract immediate attention.
• Others ostensibly posting on behalf of the individual (e.g., family members) have identical patterns of writing such as grammatical errors, misspellings, and stylistic idiosyncrasies.
Common reactions and responses from people misled by factitious behavior in an Internet-based support group are predictable. These may range from leaving the group in disgust to feeling amused by the sophistication and audacity of the ruse. Those deceived may also:
• Split into camps of those believing and disbelieving the factitious claims.
• Use the group to process their feelings of anger, sadness, and shame.
• Send e-mails to the deceiver that express anger or sadness.
• Seek retribution (e.g., by contacting the deceiver’s apparent employer or college).
• Fantasize about or attempting to arrange a face-to-face confrontation.
• Fear the deceiver will misuse personal information that had been volunteered in the past.
Factitious deceivers typically refuse responsibility for their actions and the pain they have caused others.
They may protest their innocence, "scapegoat" other group members (e.g., "If you had been more supportive, I wouldn’t have had to make up stories"), blame other group members for their naivete, or just plain disappear.
David J. Pierson, MD, cautions against turning to the Internet for help in dealing with critical illness—and especially not for advice about diagnosis and management. "I use the Internet for personal purposes nearly every day, but I accept that what turns up on a given Web site may or may not be accurate, up to date, reasonable, or even rational," he says. v
Reference
1. Feldman MD. Munchausen by internet: Detecting factitious illness and crisis on the internet. South Med J 2000;93(7):669-672.
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