People Are More Comfortable Talking About HIV Than Herpes

For something so common and benign, herpes is still treated with horror and repulsion.

by s.e. smith
Sep 12 2017, 4:00pm

Emilio Santoyo

According to the CDC, at least one in six Americans has herpes—making this STI so ubiquitous that the agency notes its estimate is likely far lower than the reality. For something so common and relatively benign, herpes is treated with collective horror and repulsion. It's so stigmatized that it's become the subject of a lawsuit from an Usher fan who alleges the musician exposed her to the virus (the musician hit back with a sharp denial that he was infected in the first place).

Why is a pretty routine viral infection that results in few to no symptoms in many patients such a big deal? And why can't herpes shake its stigma in a climate where activists on topics like mental health and HIV are making such huge gains in the fight for public acceptance?

To find out, I had a conversation with Mikayla Bobrow, a sexual health expert who wrote her master's thesis on herpes stigma—a subject she's intimately familiar with, because she has herpes herself. She notes that slut shaming and STI shaming play a huge role in the cultural attitudes around herpes, a virus that's often the butt of jokes in media and pop culture, but the issues she found went deeper.

Herpes is caught in a vicious feedback loop, because no one wants to talk about it—and because no one talks about it, Bobrow says, people feel isolated and alone. Among those she talked to, "nobody knew anyone else who had herpes." Statistically speaking, that's highly unlikely, but the sense of shame that makes people reluctant to talk about infection means it's hard for people to form a community.

Fred Wyand, of the American Sexual Health Association, says that "herpes doesn't have an activist community to match what you see with HIV, so tell a herpes joke on late night TV and no one pushes back as strongly." In the decades since the height of the HIV/AIDS crisis in the 1980s, a highly organized gay community turned destigmatization into a social cause, normalizing conversations about HIV through groups like Gay Men's Health Crisis and ACT UP. Now, cracking an AIDS joke is enough to get you fired from your job—and ensure that any internet search for Justine Sacco from now until the end of time will turn up hundreds of think pieces on careless tweets.

The differential public approach to the two viruses is particularly striking given the relatively benign and ubiquitous nature of herpes—roughly 80 percent of the population has the oral form, and one in six people living with genital herpes makes the virus endemic. Herpes is just part of the human landscape. "I think about herpes in the sense of a common cold," Bobrow says. "Somebody who has it might not have much of an effect. An outbreak is annoying, but like a cold, it goes away."

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Colds, though, aren't surrounded with blame and shame—and they're also surrounded by public messaging. Most people understand how colds are passed and how to protect themselves, while aware that sometimes, despite your best efforts, you get sick.

With herpes, Bobrow says, some of her own interview subjects weren't fully educated about how to protect partners. Some weren't aware of asymptomatic shedding, in which people can transmit the virus despite not having a visible outbreak, while others didn't understand that barrier methods might not provide complete protection. There's also medication available to suppress a patient's viral load, significantly reducing the risk of transmission. When patients aren't even well-informed about their infection, it's hard to change public perceptions of the virus.

While herpes is the subject of public mockery and angry lawsuits reminiscent of attacks on HIV-positive people in a landscape where some states still have HIV criminalization laws on the books, Bobrow made a surprising finding. Especially among young interview subjects, those who opened up to their partners about their infections were generally met with positivity. "If you tell your partner in a way that explains the virus really clearly," she says, "a lot of people had really positive reactions that surprised them."

Self-confidence proved to be an important factor, she said, noting that some people are afraid to disclose because they worry a partner will reject them. "A lot of people actually talked about how they felt that herpes was a blessing in disguise. It enhanced their ability to communicate and set them upon the path to an honest and open relationship."

Wyand commented that herpes: "…short-circuits conversations between partners, and making the partner part of the prevention plan is key to risk reduction with herpes." In a healthy, communicative relationship, there are opportunities to break that cycle. For Bobrow, "creating a culture where it's normal to have a conversation about sexual health" is key to shifting the dynamic on herpes.

But the real answer to why herpes remains such a taboo topic may lie in a combination of their observations: The silence that Bobrow found, cultivated by the lack of an organized and outspoken herpes advocacy community. One reason for that, ironically, may be the virus' prevalence. Because so many people across boundaries of race, class, sexual orientation, and gender have herpes, coming from a wide range of backgrounds, it's difficult for them to form a coalition to advertise that herpes is no big deal, and it's a lot more common than you think.

Absent a clear and connected community, what herpes stigma may need most is a few brave high-profile members of the public to admit that they have herpes, that it's a common infection, that it shouldn't be cause for concern, and that there's a pretty good chance you have it and don't know it. In a society obsessed with pop culture, who will be the first brave celebrity to shrug off stigma and start the conversation?

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