A diagnosis of HIV can lead to a deep sense of isolation - so deep that the fear of talking about it can impact not only quality of life, but treatment, too. The Mecklenburg County Health Department and local advocates are addressing this problem through something called The Voices Project. It's a way for people affected by HIV to share their experience with the community, and it'll take the stage Monday night at the Knight Theater.
After several years living with HIV, Alan Holmes decided it was time to tell his dad. Holmes says his dad then outed him to much of his family.
"But in doing so, he did it in a positive manner," Holmes said, "saying, this is my son, he just has a disease like cancer, anything else; if I find out that you treat him any differently now, I will write you off."
It's one of many supportive responses Holmes said he's fortunate to have received as he's grown more comfortable talking about HIV, which he's had since 1989.
Two years ago, Holmes wrote a deeply personal and revealing account of his experience with the disease. He acknowledged drug and alcohol abuse as well as "rampant anonymous sex." But he also describes turning sober and finding happiness, concluding his story with this:
"As I have heard said many times before, 'I don’t live with HIV, it lives with me.' Keep up disease; we have a lot more left to do in this lifetime!"
It was part of The Voices Project, where volunteers read his story and those of other people impacted by HIV to a theater audience. The stories have included a 13-year-old describing what it's like to take a fistful of pills and a health worker remembering the first time she told someone they tested positive.
Holmes was in the front row for his story.
"I can remember breaking out in goose bumps and having tears rolling down my cheeks that this person cared so much about me to get up and share this in front of a group of individuals," he said. "It was just very freeing and very meaningful for me."
The Voices Project is now in its fourth year. It grew out of a conversation between Hannah Stutts of the Mecklenburg County Health Department and Nathan Smith of the Regional AIDS Interfaith Network.
Stutts coordinates community-based testing for the county, and she and Smith wanted to help people open up and also educate the community.
"There's this huge fear about acknowledging that you have it or even acknowledging that you've been tested for it for that sake, so being able to share that helps normalize it, and it helps make other people more aware that HIV is still something that we need to care about," she said.
Stutts said Mecklenburg County averages about one new HIV positive case a day.
When Stutts, Holmes and others involved with the project discuss it, "empowering" is a word that comes up often. A similar kind of empowerment is taking place at St. Jude Children's Research Hospital.
The hospital started its own VOICES Project two years ago. 18- to 24-year-old HIV patients can anonymously record their stories, and then other patients – as well as hospital staff – can listen to them.
Social worker Syvlia Sutton said the recordings have a profound impact on patients.
"They feel that the person who's speaking, it could very much be them speaking: it sounds like their own story," she said. "It gives them a sense of motivation to want to do better in their care or feel that they're not alone."
So much of chronic disease treatment comes down to keeping patients engaged – showing up for appointments, taking medication – and Sutton said this project is invaluable in that regard.
About 20 patients have recorded their stories so far, including Xavier Weddington. He's 24-years-old and agreed to let us use his name.
At one point in his recording, he talks directly to his fellow patients.
"I know you may be feeling like your life is over, no one will ever love you, you can't go on, but I'm here to tell you there is life after HIV," he said. "There is love after HIV."
That message is resonating in Mecklenburg County, too, although The Voices Project here plays out in a theater rather than a hospital.
Hannah Stutts said one of the first participants told her recently he'd worked up the courage to talk through his diagnosis with a potential partner.
"He felt like he was capable of doing that because he had shared his story for Voices Project," she said.
Alan Holmes said The Voices Project has also made it easier to share his experience. He works for the Regional AIDS Interfaith Network, where a lot of newly diagnosed people come through his door.
"I feel it's important that I be open and honest and share with them, hey, I've been positive for over 25 years, look at me. You're going to be fine. You're going to be OK," he said.
And someday, Holmes tells them, they'll be able to open up about their experience, too.
The Mecklenburg County Voices Project holds its fourth annual event Monday at the Wells Fargo Auditorium at Knight Theater. It's free and starts at 7:00.