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‘One of the biggest secret societies’
When Ella Dawson, 30, contracted genital HSV-1 in college, she started to post openly about her diagnosis on social media. To her surprise, people came out of the woodwork to share their stories — friends, relatives, even a cashier who worked at the grocery store on campus. Many told her that they had never disclosed their diagnosis to anyone other than a sexual partner.
“It’s one of the biggest secret societies in the world,” said Ms. Dawson, a novelist and writer who often speaks publicly about her experience with herpes.
Courtney Brame, 34, started the herpes education advocacy organization and podcast Something Positive for Positive People after his own HSV-2 diagnosis. He’s seen how the disease “completely shatters a person’s identity,” he said, partly because of how central sexuality can be to someone’s self-worth. “They don’t feel like they have anything to contribute to a relationship now, just because they have herpes,” he said. “It’s like, ‘Who’s going to want me now that I have this?’”
Mr. Brame has seen this in his own life. He was once messaging a woman on Tinder who brought up her struggle with chronic asthma; when he disclosed his own chronic condition, she stopped responding. But more often than facing rejection, when he shares his diagnosis, he said, he gets a different response: Women share that they, too, have herpes.
Herpes stigma stems in part from the idea that people with the infection have done something “wrong,” Dr. Park said. But you can exercise every precaution and still get it, she added — condoms do not entirely prevent transmission, and you don’t even need to have penetrative sex to contract the virus.
Though condoms can reduce the risk of transmission, not everyone with herpes will use a barrier method in long-term, monogamous relationships. In 2021, Something Positive for Positive People conducted a survey of over 1,000 people diagnosed with herpes; around 66 percent said a partner had consented to sex without a condom or other barrier method. And there is little research on how the virus spreads between women who have sex with women, Dr. Park said.
Medical providers, in general, often don’t receive extensive education on talking to patients about sexual health, Dr. Johnston said. When it comes to herpes in particular, “health care providers can be really insensitive about it and minimize it,” she said. “This is thought of more as a nuisance than a serious infection.”
