Social Security
BY Bob Adams
November 18 2010 5:00 AM ET
For Breining, a major goal of his website and radio program, he says, is to show other HIVers that it’s possible to live a long, healthy, and productive life with the disease. “I want to give people hope,” he states simply. “I want them to see that it’s not all gloom and doom, sickness and death.”
Many of these hopeful messages are aimed specifically at newly diagnosed HIVers, who tend to join digital communities and follow bloggers and vloggers in large numbers because they’re able to share as much -- and, perhaps more important, as little -- personal information about themselves as they choose online.
“A lot of people are uncomfortable or really afraid to have someone they know find out that they’re HIV-positive, but they’re still looking for support or friendship or just someone who understands what they’re going through,” explains Breining, who allows POZIAM users to shield their identities. “Now they can go online and share as much or as little about themselves and still get what they need.”
But the relative anonymity of cyberspace also has a significant downside -- the ability for social media users, even onetime visitors to a site, to leave offensive public comments. That very situation almost derailed Terry-Smith’s online video blog, “Justin’s HIV Journal,” shortly after his very first entry.
“The first comment I got was horrible,” Terry-Smith recalls. “A guy basically said, ‘So you got poked by a dirty dick. So what?’ I almost took the video down because I thought those were the only kinds of comments I was going to get. But then, maybe two minutes later, I got a comment from someone who loved the blog and planned to keep following it. Then I got another comment like that, then another.”
Shaw has also been the target of disparaging feedback. “Some people have suggested I’m doing this to try to become famous,” he says with a laugh. But by and large, he notes, the reaction has been complimentary.
And sometimes it’s downright astonishing.
“I had gotten an e-mail from this guy who was really depressed since he had gotten HIV and was actually thinking of taking his life,” Shaw recalls. “But he said he found my blog and connected with my message that you can live a full life with HIV and you don’t need to be treated any differently than anyone else. He said that gave him a whole new perspective and that he’s now committed to making his life better. That made me feel really good, like I’m truly making a difference.”
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