When my friend Allison Gilbert lost her mother in 1996, she was just 25 years old and a newlywed. One of the most valuable things she did to cope she says was attending weekly meetings of Gilda's Club, a support group for families living with cancer. Back then, the idea of finding help and connection online didn't really occur to her. Social networking wasn't even invented and the Internet was just starting to be accessed from homes. But when her father was diagnosed with lung cancer just a few years later, the Web and cyber support groups became essential partners as she faced her dad's rapidly deteriorating health.
"I'd talk with strangers via email and direct messaging about surgical procedures and medicines. We'd exchange details about doctors and hospitals. This was done at all times of day and night, seven days a week. I didn't have to wait for a once-a-week support group. And I didn't have to leave my house, which at the time was also very important for me because while my father was getting progressively worse, I also had a toddler at home," she recalls.
Gilbert, whose latest book Parentless Parents: How the Loss of Our Mothers and Father Impacts The Way We Raise Our Children (Hyperion, February 2011), experienced a shift that mirrors a growing trend across the Internet. People facing personal challenges are increasingly finding solace, community and information by connecting in cyberspace. In 1995, only 5% of Internet users say they turned to the web for support in facing hardships, including divorce or illness according to a survey conducted by Yahoo! and Decipher Inc./OTX. Today, that number has quadrupled with more than a quarter of the 1,687 adults we surveyed saying they "could not live without the Internet" for discussing sensitive topics with people in a similar situation. And just like Allison's story, Yahoo! found that for more than half of those ages 25-44, the web has replaced attending face to face support groups altogether. On Yahoo! Groups their are more than 5,500 groups devoted to grieving and loss.
From Totally Hip, a group for women recovering from hip replacements to veterans of Iraq and Afghanistan suffering from post-traumatic stress disorder to Gamblers Anonymous to Hope for Two, a forum for pregnant women battling cancer, the number of organizations generating dialogue and advocacy online has exploded since the days of dial-up. Ed Madara, director of the American Self-Help Group Clearinghouse, remembers when the first meetings for agoraphobics (those afraid of wide open spaces) used Compuserve to connect with each other and experts as early as 1982. He says it was a revelation for the mental health community that eventually spurred most of the 1,200 mainstream health organizations he works with to build websites, create message boards and chat rooms. The ability to reach out without revealing one's identity or home town plus the 24-7 nature of the web, he explains, was especially appealing to Twelve Step groups like Alcoholics Anonymous.
"These were all the groups that had local community support groups but not everywhere and they suddenly could give people that experience (of connecting) and relieve the isolation that they feel," says Madara whose organization, www.selfhelpgroups.org, monitors the discussion and activity of self-help groups and rates them as reliable sources of information and support.
With thousands of communities to choose from online, it can be overwhelming to decide which one to join. But as the trend evolves, Madara says it's essential for consumers to be discerning and to look out for any website or group trying to sell a product or advance a hidden agenda.
"I think depending on the group there is a risk for misinformation. But there is wisdom in numbers and you can self-correct. It's like a peer review board and when the members each have a voice in what's being said, they are able to get to the truth," he says.
Social media has taken the old chat rooms and forums to an entirely new and more interactive level. Now, my friend Allison oversees a Facebook page for Parentless Parents which grew out of her research for the book. Months before the book even came out, there were already hundreds of users connecting on the page. They are engaging in discussions in real time and finding comfort in the stories of people whom they never would have met otherwise.
"There's no need to explain why you're there. We all understand, because we're all living it. The reason online support groups are so valuable, and the reason why they are so wildly popular, is that sometimes strangers understand you better than your own family and closest friends," she says.
Have you found help using an online support group? Share your story with us.