'Embarrassing' Diseases Send Sufferers to Support Groups

From the WebMD Archives

Feb. 25, 2000 (Atlanta) -- Misery loves company, and Americans coping with illnesses love support groups. The more socially stigmatizing the illness, researchers report, the more likely a sufferer is to seek the advice of others in the same boat, whether face to face or over the Internet.

"I had assumed that people would naturally seek support for diseases that were most life-threatening or costly," James W. Pennebaker, PhD, an author of the study published in this month's issue of American Psychologist, tells WebMD. "That the social stigma of a disease was so powerful in affecting support seeking was completely unexpected." Pennebaker is a professor of psychology at the University of Texas in Austin.

The researchers looked at the participation in face-to-face support-groups for 20 diseases in four cities: New York, Chicago, Los Angeles, and Dallas. They also monitored online discussion groups on Internet newsgroups and America Online bulletin boards.

Overall, they say, support group participation was highest for those with diseases viewed as most stigmatizing, including alcoholism, AIDS, anorexia, and breast cancer. It was lowest among those with heart disease, high blood pressure, migraine headaches, ulcers, and chronic pain -- also serious disorders, but considered less embarrassing. For example, they found that AIDS patients were 250 times more likely to participate in a support group than those with high blood pressure.

"Those diseases that are the most difficult to talk about in 'polite company' are the ones that drive individuals to support groups," Pennebaker says.

The reason is that the 'embarrassing' diseases have already set many sufferers apart from people in their social circle and propelled them toward others in similar situations, writes researcher Kathryn P. Davison, PhD. Davison is president of The Human Asset, a consulting firm in Dallas.

The researchers discovered several patterns. Those battling alcoholism were most likely to take part in face-to-face support groups in all four cities, but alcoholism support groups were ranked seventh in popularity among the Internet newsgroups and ninth on the AOL bulletin boards. "[Alcoholics Anonymous] members may find they need the personal support of face-to-face groups, something virtual support can't give them," Davison tells WebMD.


Illnesses that make travel difficult or impossible, such as multiple sclerosis (MS), find a natural home online. MS ranked 16th among the face-to-face support groups for all cities but first among online groups.

Overall, though, Pennebaker says the researchers found support groups on the Internet and their participants had many similarities to those of traditional support groups.

While many support groups describe themselves as self-help, Davison notes that 60% have medical professionals involved. "It's not that [participants] don't want professional input," she says. "But with groups, especially online, they can ask what they want, when they want."

The researchers believe their findings suggest that the Internet may ultimately supplant many of the traditional ways we seek out others when we have a physical or mental disorder. They cite a Louis Harris poll in which health information was the number one reason given for new online subscriptions.

The next step for researchers, Pennebaker says, should be to determine how effective both types of support groups are in helping their participants, "I'd like to know if this kind of support can ultimately improve participants' physical health," he says.

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