Dustin Thompson of Long Beach, who is HIV positive, shows the photo he is using as he participates in the social media campaign #ImPositive. (Steven Georges, Contributing Photographer)
With a smile and a handwritten message, Dustin Thompson of Long Beach told the world that he has HIV. Or at least the 1,850 Twitter followers of AIDS Services Foundation Orange County.
In the photo tweeted two weeks ago, Thompson, 34, holds a whiteboard emblazoned with #ImPositive and his own words: “I am positive and I am not ashamed!”
This summer, the Irvine nonprofit launched a social media campaign designed to fight HIV stigma, which fuels spread of the disease, by sharing photos and personal statements from residents with HIV/AIDS.
“It’s who I am now,” said Thompson. “There’s nothing I can do about that except take care of myself and help prevent it being spread to anybody else.”
The Centers for Disease Control and Prevention says stigma prevents some people from getting tested and treated for HIV while also leading to “perceived discrimination, fear and anxiety.” Treatment not only preserves health, but can help decrease the risk of transmission to others.
Unlike other serious conditions such as cancer, survivors of which may proudly identify themselves, HIV remains mired in shame because of misconceptions about the disease or the taboo subjects of sex and drug use.
In 1987, during the height of the AIDS epidemic, 43 percent of Americans surveyed said the disease might be God’s punishment for immoral behavior, according to the Pew Research Center.
“When you’re talking about stigma, that can potentially cause a delay in acting,” said Tamarra Jones, who oversees HIV prevention for the Orange County Health Care Agency. “That means later to test, later to identify that you’re positive, and later to get into care. Once in care, you may fall out of care more easily because you don’t want people to know what’s going on in your life.”
There are more than 6,700 Orange County residents living with HIV, and according to CDC estimates, another 669 residents who don’t know they have HIV.
Jones praised the courage of those who are sharing their status publicly. The photos are also being posted on AIDS Services Foundation’s Facebook page.
“When you see people’s faces and they’re saying, ‘I’m positive,’ you’re saying, ‘That looks like my aunt, my cousin, my brother,’ ” she said. “In the images I’ve seen, they don’t look sick, they don’t meet the stereotype.”
Thompson tested positive about 10 years ago, deciding to test for the first time to show support for a friend who was recently diagnosed.
In college, Thompson told his own mother he was gay. Although she was very supportive, he dreaded telling her about his results.
“I felt ashamed when I had to tell my mom,” he said. “I don’t ever remember thinking I was scared I was going to die. I was afraid of upsetting my mom and what she would think of me.”
But Thompson’s mother said she immediately reassured him and contacted AIDS Services Foundation where she now volunteers.
“I’ve never known what it’s like to not be loved and supported and accepted for everything about me,” Thompson said. “It’s easy to forget that not everybody has that support. There are lots of people that really need things like this.”HELPING OTHERS
After Renee Austin tested positive for HIV in 1995, the Huntington Beach resident learned the hard way that openness can come with a cost. She recalled a co-worker, whom she considered a friend, who threatened to quit rather than be around her.
“I’m curled up in the bathroom at work feeling like a biohazard,” Austin recalled. “It made me feel like a nonperson and just a virus. It was the lowest of any moment in my diagnosis.”
Austin said she contracted the virus after having unprotected sex with a man who had used drugs intravenously. She later learned he knew he was HIV positive but was in too much fear and denial to inform his partners or always use a condom.
“It’s like everything in my life blew up in front of me,” she said. “I was 24. I thought I was going to get married and have children and the white picket fence. It’s gone. Obliterated.
“In the mid-’90s, no one lived.”
Austin, 46, eventually realized that she had a future and that she could help others. She earned her MBA. She’s engaged to a man who is HIV negative. And although she only shares her status on a need-to-know basis, she’s agreed to have her picture taken for the social media campaign in order to encourage testing and disclosure.
“The way to stop the spread of HIV is not going to be found in a laboratory,” Austin said. “HIV and AIDS could stop right this moment in the world if everyone got tested; the people that knew their status were willing to tell people; and the people who could be at risk took steps to protect themselves.”
Austin said she’s uneasy that some acquaintances and colleagues who don’t know she has HIV may treat her differently or judge her if they learn of her status through the campaign.
“It’s the only weapon I’ve got in this fight and I’m willing to use it,” said Austin, who also speaks to college students about HIV. “I have to believe that what I’m doing could help save someone’s life or I wouldn’t risk doing this.”EDUCATING OTHERS
For Daniel Garza’s #ImPositive statement, he wrote, “Keeping it a secret is not an option.”
Growing up Latino and Catholic, he said, he didn’t know about practicing safe sex. “There is no conversation for a dad to have with a gay son in the Latino community about being safe,” Garza said.
Garza, 46, of Laguna Beach was diagnosed with AIDS in 2000 after he was hospitalized with pneumonia. At first, he used his own set of dishes and towels because his family was fearful of transmission.
Garza has been with his boyfriend, who is HIV negative, for five years but recalls the earlier challenges of dating. He grew tired of having dinner abruptly end when he disclosed his status, so eventually he included that on his online dating profile.
He said although treatment has come a long way, he doesn’t want anyone to become complacent about preventing infection.
“I hope this will encourage people to talk about their status in an educated way, not in a victim way,” Garza said of the campaign. “We need survivors to start telling their stories. Yes, I’m alive but let me tell you how much it really sucks to be positive.”
AIDS Services Foundation staff and volunteers also contributed their voices to the campaign. For more information, visit facebook.com/ASFOC.