Seven months after Ella Dawson says she was diagnosed with genital herpes, she remembers a young man at a college party offering her a sip of his beer. “Don’t worry,” she recalled him saying. “I don’t have herpes or anything.”
Dawson, 22, was just learning to shed the shame that came with her infection, which affects one in six Americans. She could already tell this sense of isolation was worse than any outbreak. So, she spoke up — and shared the tale in a Women’s Health essay, published this week:
'That’s funny,’ I said, with as warm a smile as I could manage. ‘Yeah, that’s really funny. Because I have genital herpes.’ His face crumbled. Not because I grossed him out — I could practically see the wheels turning in his brain as he realized he’d made an ignorant joke at someone else’s expense. The guy started apologizing profusely.
Dawson, who graduated last year from Wesleyan University, didn't take offense. Humor at the expense of people with STIs permeates popular culture, from Saturday Night Live’s Valtrex segment to Jennifer Lawrence casually joking about herpes.
But Dawson said she felt empowered talking bluntly about her affliction.
"I had seen in the flesh what a simple 'I have herpes' could do when said fearlessly, without shame," she wrote. "Because when a real person — a woman you know and respect — casually mentions having herpes, it stops being a punchline and starts being someone's reality.”
About 17 percent of people 14 to 49 in the U.S. have genital herpes caused by the HSV-2 infection, the CDC reports. There is enormous racial disparity, according to the most recent CDC data, with more than 40 percent of non-Hispanic black women diagnosed with the infection, compared to less than 20 percent of non-Hispanic white women. Condom use reduces but does not eliminate risk of infection. Skin-to-skin contact, even when no sores are present, can spread the virus. ( women with herpes )
Herpes, the infection, is not new—but the stigma is. Project Accept, an advocacy group, asserts on its Web site: “[Herpes] was merely a cold sore in an unusual place until the 1970s.”
Blame an antiviral marketing campaign, which sprung up shortly after America’s free love era, said Dr. Peter Anthony Leone, medical director of the North Carolina HIV/STD Prevention and Control Branch.
“Herpes was seen as this marker of being promiscuous or bad or evil,” he said. “But unless you’re in a mutually monogamous relationship with someone who has never had sex, you’re at risk.”
The stigma carries devastating consequences, he said, and obscures factual information about the virus. Patients often seek counseling to manage the guilt or humiliation—and they may have only one or two outbreaks over a lifetime. A 2011 study in the Journal of Health Psychology found several survey respondents with STIs reported feelings like "less of a person."
A 38-year-old woman with herpes told researchers: "I am ashamed. I feel dirty, unclean." Threads on web groups for people with incurable STIs sometimes address suicidal thoughts.
While it's important to practice safe sex, Leone said, it's equally important to know what genital herpes actually is: A skin condition managed by medicine that won't prevent someone from having sex again or starting a family. ( sex with herpes )
“The way you remove stigma is by bringing something to light," he said. "We need a push coming at the federal level to talk about sex in terms of health and move away from the disease model. Sex should be seen as part of being an adult, a healthy thing you can do and just part of your routine healthcare."
Memories of early sex education intensify the indignity, Dawson told the Washington Post. She remembers scary slideshows of STI symptoms—and no instruction on how to cope if you develop them. "My middle school sex ed experience was a lot like that scene from Mean Girls, when the P.E. teacher says, 'Don't have sex because you will get pregnant and die.'"
The Women's Health piece hit the Internet on Monday. Dawson, a social media assistant for Ted.com, said she has since received dozens of Facebook messages from friends and strangers. People she has known for years, she said, are coming to her now with their own STI confessions.
Dawson, who lives in New York City, said she plans to keep blogging about dating with genital herpes, to promote normalcy in the face of stigma. She wrote on her blog recently that she interviewed a former boyfriend about what it's like to date someone with the infection. His response, she wrote: "I didn’t see you as 'Ella with herpes,' I just saw you as 'Ella.'"
By Danielle Paquette who is a reporter covering the intersection of people and policy.