MyHIVTeam: Community at Your Fingertips
You know when it's 1:00 a.m. and you're craving a spicy chorizo taco? You go on your computer or your phone to one of the various food apps and find the best late-night taco delivery in town. Technology saves the day.
But how about when it's 1:00 a.m. and you're in need of a friend -- maybe someone who is just like you, living with HIV, and understanding of the unique physical and emotional challenges experienced by a person living with HIV? Where's the site/app for that?
Other resources are available on the site, such as a provider directory with names of businesses, doctors (although they do not endorse any specific provider or treatment), and other specialists who understand HIV; blog posts to help users get the most out of the site; Q&A boards; and even a page of encouraging and inspiring quotes.
The site was founded by Mary Ray and Eric Peacock as part of a larger site, MyHealthTeams.com, bringing together people who are living with chronic conditions.
"The hypothesis was, if there was a place where you could connect with other people who are in your shoes, you're more likely to stay on top of your condition, learn about what the best evidence-based treatments are, and who the best providers are in your area could be," Mary said.
After interviewing many folks with various conditions, Mary and Eric discovered a common experience among people living with chronic ailments: once diagnosed with an illness, a person's life is dramatically changed. Finding a compassionate person to talk to and a community is key to improving one's quality of life and reclaiming a sense of normalcy. Their goal was to create a social network offering a way for people to connect. In 2012, with the help of venture capital investors, they launched the first of what now are 28 different MyHealthTeam sites, and in 2016, MyHIVTeam became one of them.
Mary said that being on a social network like MyHIVTeam can change the perspective of people who are struggling with their diagnosis when they discover that they are not alone. "[This site] offers social proof from other people who have been in your shoes and who are living normal lives, and who offer multiple dimensions of who they are," Mary said. "They're not just HIV positive, but they are people who go to work [and] have jobs; who have performances; who are athletes; who are uncles, aunts and moms; and [who have] all these other facets." People might even be inspired and see new possibilities for their own future by learning about someone else's experience.
Jon, a 46 year-old member from Michigan (who goes by the nickname Xavier on the site), found the site while doing a web search for ways to improve his T-cell count. Since joining, he's found that MyHIVTeam has been a way to have a support group when one isn't nearby. "My closest support group is an hour drive away, and in the winter, the roads can be bad," Jon said. "I can just go to the website and see what people are doing and chat with them."
Glenn, a 72 year-old member from Massachusetts, saw an ad for MyHIVTeam on Facebook. "I really hadn't been connected with any kind of patient support or support groups, or anything where you'd even talk about how you felt about your diagnosis or any of that," Glenn said.
Since being connected on MyHIVTeam, he's been able to learn about other people's experiences, and he has been able to encourage people to have hope. "You know, I grew up in a culture where [HIV] was seen as God's punishment on the gay community, and I didn't come out [as gay] until I was in my 40s anyway, so I know what all that's about, and I kind of thought my way out of it," Glenn said. "When I hear people who are having trouble with that, I have some positive answers for them."
One aspect of MyHIVTeam that is very unusual in the social media realm is its encouragement of kindness and respect among users. When you are posting to another member, there's a continuing reminder in the comment box to remember the Golden Rule: treat others as you would like to be treated.
Glenn emphasized: "[The site has] an incredible level of positivity that moderates how people talk, how healthy the exchange with each other is. It's building a community in a really warm and familial way."
Jon also enjoys the harmony on MyHIVTeam.com. "The site has a good sense of community," he said. Jon believes in the network so much that he's become an ambassador on the site, welcoming new members. He said, "At the end of the day when you are exhausted and think 'how can I keep living like this?' just remember you may have HIV, but HIV doesn't have to have you!"