“It’s not like people say, ‘Hi, my name is Heather. I have herpes,’ ” said Haskins, a divorced U.S. Navy veteran and government contractor who lives in Riverdale Park, Md. “I didn’t know anybody who knew anybody who had herpes.”
For years, Haskins searched for a support group for people with the virus. She found empowering communities on Instagram and groups based in other cities, but she struggled to find one in the District, a place where seemingly “everyone knows everyone” in the dating scene, Haskins said. Such spaces existed only in secretive groups on Facebook, Haskins said, mostly disseminated by word of mouth and often requiring a password to join.
So Haskins, 32, decided to start a support group of her own. Last month, she launched HSV in the City, a gender-inclusive teleconference support group for people in the Washington area to meet twice a month to talk about living with herpes. In each session so far, a group of two to six people have called in for hour-long conversations about how to feel comfortable dating, how to disclose to potential partners, how to cope with being “ghosted” after telling a date about herpes.
“Dating is hard to begin with. Try dating with [a sexually transmitted infection] that you can’t get rid of,” Haskins said. “I’ve met women who haven’t slept with people in 10 years, not because they have outbreaks.”
There has been a growing willingness among younger generations to start publicly sharing their experiences with herpes on social media, much as they have with issues such as sexual assault and abortion, said Jenelle Marie Pierce, executive director of the STD Project and the founder of a herpes activists network. Pierce said she has seen a desire among young people to use their diagnosis as a source of empowerment instead of shame.
“There’s that storytelling component,” Pierce said. “It’s like the YouTube generation of pouring your heart out and telling your story.”
On Instagram, Haskins began following sex-positive accounts where women shared stories about living with STIs.
One of these Instagram accounts led her to join a teleconference support group based in Austin, which inspired her to launch her own group in the District.
The teleconference format allows people to choose to keep their names and faces anonymous — a feature that Haskins felt would be particularly important in an interconnected city filled with government workers. But Haskins hopes that the group will encourage people to speak more openly about a virus that is incredibly common but still shrouded in stigma.
Nationwide, more than 12 percent of people ages 14 to 49 are infected with HSV-2, the principal cause of genital herpes, according to the Centers for Disease Control and Prevention. But an increasing number of genital herpes cases are caused by HSV-1, which is usually associated with cold sores around the mouth and affects about 1 in 2 Americans ages 14 to 49. Most people with genital herpes don’t know they have it because they don’t experience any symptoms, which typically include painful sores or blisters on or around the genital regions or the mouth. But those who are asymptomatic are still capable of spreading the virus.
“The stigma of having herpes is so much worse than actually having herpes,” Haskins said. “It’s the butt of all the jokes; I mean, every Will Ferrell movie has a joke about herpes.”
Even as Americans have become more willing to openly speak about other sexually transmitted infections, including HIV, there’s something about herpes that is still particularly uncomfortable for people to talk about, said Peter Leone, a professor of medicine at the University of North Carolina at Chapel Hill. While there are ways to prevent the spread of the virus, there is no cure for genital herpes, and there are no national guidelines for universal screening.
“I know this is going to sound really odd, but when I give someone a diagnosis [for herpes], for many folks, it’s as devastating to them as getting an HIV diagnosis,” Leone said. “What drives it is misinformation.”
Patients become paralyzed by the idea of disclosing to a partner. “There’s still this belief that ‘I must have done something to get it,’ ” Leone said.
Many people don’t realize that herpes can be spread through oral sex and that condoms may not always protect against the virus.
Even the support groups for people with herpes are more secretive than for other sexually transmitted infections, Pierce said. While Facebook support groups exist across the country, many of these are difficult to find and require careful vetting of new members.
“They’re trying to make sure it remains a safe space but in doing so, they’re kind of limiting their reach,” Pierce said. “In some ways, it perpetuates the stigma.”
Haskins hopes that HSV in the City will be more accessible than groups of the past. The group’s Instagram account displays colorful drawings and empowering messages such as “HSV is not the end of your sex life.”
Haskins urges the members of her group to speak openly and calmly about their diagnosis to a partner. She suggests that they organize their thoughts before the conversation, going in prepared with information about how common the virus is and how to help prevent transmission.
But perhaps most important, Haskins urges people not to say they’re sorry.
“They have nothing to apologize for,” she said. “If you act like it’s not a big deal, people don’t think it’s a big deal.”