Jennifer Hensley long ago learned to handle the symptoms of her obsessive-compulsive disorder (OCD). The 38-year-old writer was diagnosed with the condition in her last semester of college, when a fear of germs led her to restrict her eating-and her extreme weight loss landed her in the hospital.
Behavioral therapy eventually got her back on track, allowing her to earn a bachelor's degree in psychology, a master's in English and to work as a social worker. Even though her symptoms are now under control, Hensley still likes to talk with people who understand her struggles. Unfortunately, people with OCD can be hard to find.
"It seems like it's such a widespread disease, yet you rarely meet people in person-maybe because many people with OCD tend to hide it really well," she says.
Last December, Hensley stumbled across a Web site called OCDTribe.com. The site is one of a network of five "WebTribes"-which also include DepressionTribe.com and AnxietyTribe.com-that allow people with those disorders to meet and talk with one another. The sites work like Facebook or MySpace: Participants create their own pages where they can post pictures and information about themselves, write messages to one another and start discussion groups.
Hensley checks in often with the friends she's met on the site. She's even traveled from her home in Nashville to Chicago to meet one friend in person, and she plans to meet another when he visits from England later this year.
Online mental health support groups have been around since the early 1990s, according to media psychologist John Grohol, PsyD, who has kept tabs on them since 1991. Back in those pre-Web days, such groups took the form of Internet newsgroups and e-mail lists.
When the Web started to take off in the late 1990s, more groups began to appear. Grohol himself started a Web site called PsychCentral.com in 1995, which offers information from mental health professionals and a "community" section for chat.
In the past several years, the number of these social networking sites has skyrocketed. A quick search of "depression" on Facebook, for example, reveals more than 500 groups, some with only a few members, others with hundreds. There are also groups for OCD, anxiety, autism, borderline personality disorder and many others.
But whether this growth is a boon for those with mental illness is still up for debate.
Misery loves company
Many patients and psychologists see this proliferation of mental health support groups as a generally good thing.
"Online support really is a positive experience for most people because most people going to join a depression support group, for example...are looking for support," says Grohol. "They're not there to mislead each other; they're there to talk about their experiences."
That's what college student Eric-who asked to be identified by a pseudonym-found when he started a depression support group on Facebook five months ago.
"Clinical depression and all the things that come with it are very hard to understand...unless you've been through it," he says. Through the site, he says he "found a group of people who could relate" and learned about helpful resources. Eric also says that the group helps him cope with the loneliness that often comes with depression.
Carrie (also a pseudonym), a high school student who started an OCD-support Facebook group in 2006, says she has been surprised by the interest it has generated. Within a month, the group had reached 500 members. It now has nearly 1,500 members, posting messages on more than 100 discussion topics.
"I'm happy that I could so easily create a group that helps people like me out," Carrie says.
The discussions in Carrie's group range widely. Recent posts, for example, include a request to share stories about how families supported or didn't support them in their struggles with OCD, a question about how alcohol affects compulsions, and a request for information about how to best decontaminate electronics-that one from a person who said she knew she was just indulging her OCD but was looking for answers anyway.
The wide-ranging and freewheeling nature of online support groups raises some concerns for psychologists.
"The groups can develop blind spots," says psychologist John Suler, PhD, an expert on online communication at Rider University in Lawrenceville, N.J. "Sometimes the information they're endorsing is just plain wrong. That's where it's nice to have a professional community to set people straight."
One of Suler's students, for example, joined an online support group for parents of children with autism. She found that the group strongly endorsed ideas about changing their children's diets that weren't supported by research.
A few online groups offer information that's more than wrong, it's harmful. Perhaps the most famous examples of this are the pro-anorexia Web sites where people go to find advice on how to lose more weight.
Because many groups are unmoderated, it's difficult to ensure that inappropriate posts are removed. But other sites, such as the WebTribes, hire professionals to keep discussions on track. WebTribes founder Ryan FitzGerald says he and his wife-who co-founded the sites-monitor them daily to make sure the content is not affecting someone in the wrong way. All of the WebTribes sites include a disclaimer that they are not intended to substitute for professional therapy and that users who suffer from serious illnesses should see a health-care professional.
John Grohol controls the content on his site, PsychCentral.com, even more stringently. He trains a network of moderators who monitor the discussion boards, welcome new members and keep discussions from derailing.
Whatever they think of such sites, Grohol says, psychologists need to know that many of their clients participate in online mental health groups.
"Social networking is obviously here to stay," he says.
Given that ubiquity, "Psychologists should definitely pro-actively talk to their clients about the Internet," he advises. They should also remind their clients not to believe everything they read online, to look for resources from reputable sources (such as WebMD or the National Institute of Mental Health's Web site), and to print out and bring into a session anything that they find online and have a question about, he says.
It would also be useful for psychologists to learn as much as they can about online communication in general, advises Suler, including topics such as the pros and cons of using text to communicate and how people manage their identity in cyberspace.
"For a first-hand experience, it would be a good idea for psychologists to participate in an online group of some kind," he says. "It wouldn't necessarily have to be a support group. Even participation in a professional group will give psychologists a good idea of what online groups and relationships are like."
Lea Winerman is a writer in Washington, D.C.