Medical Examiner

Why Do We Expect People to Disclose Having Genital Herpes?

The shame that comes with having the virus can be worse than the symptoms it causes.

A man and woman lean in for a steamy kiss.
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It is a truth universally acknowledged that those with genital herpes must disclose it. But those who actually harbor the virus—a sizable chunk of the population!—may bristle under the stigmatizing status quo. Given everything we know about its prevalence, “I just can’t justify the incessant insistence on disclosing that I have genital herpes before genital-to-genital sex,” one person wrote in a Medium essay. “The more I learned about it, the more unreasonable it seemed that I’m supposed to forever slap a warning label on my pussy,” another wrote in to How To Do It, Slate’s sex advice column. Herpes, they concluded, is really just “cooties for adults.”

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It’s a controversial stance, but the evidence they marshal is compelling. For most people, herpes is simply not that big a deal. “A massive proportion of the world’s population are living with herpes” already, according to the World Health Organization. Symptoms are typically limited to cold sores around the mouth, or genital bumps, blisters, and itching. Once you have the herpes virus, you will always have it, but you will not always be laid  up with symptoms. In fact, a significant proportion of people are asymptomatic entirely. The stigma is so much worse than the disease that the CDC actually recommends against testing for HSV in the absence of obvious symptoms. “In short,” L.V. Anderson once wrote on this very site, “herpes simplex is a common, generally harmless skin condition that happens to sometimes be spread sexually.”

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So why are those who know they have genital herpes required to disclose their status to potential sexual partners again and again and again? And, by the same token, why don’t we really expect people to disclose the fact that they’ve ever had a cold sore, which is often a sign of oral HSV?

Before addressing these quandaries, it’s important to understand the basics. There are, to everyone’s endless confusion, two herpes simplex viruses in humans, both of which can be transmitted through skin-to-skin contact with an infected person. HSV-1 can appear in both the oral and genital area, with transmission through vaginal birth, kissing, or oral, anal, or vaginal sex, says Terri Warren, a nurse practitioner who has treated thousands of HSV patients in the Pacific Northwest and contributed to more than 120 clinical research trials on STIs of all stripes. HSV-2, by contrast, tends to be limited to the genital region. Fortunately, while symptoms can be painful in the initial outbreak, subsequent symptoms tend to be less severe and further apart; some people may go years without any indication of the virus in their mouth or their genitals.

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In the U.S., more than 50 percent of Americans under age 50 have HSV-1 oral herpes (which can transfer to genitals), while 12 percent have HSV-2 genital herpes. People who have a formal HSV diagnosis most likely have suffered genital lesions, and sought a doctor’s confirmation. They can manage the risk of passing it on with a combination of self-monitoring for flare-ups (when transmission is more likely), taking suppressive antivirals (which may reduce but do not eliminate the risk of transmission), and using condoms and/or dental dams with partners. But a lot of people just don’t know they have herpes: The CDC does not recommend routine screening for the viruses, in part because false positives are common—and because so many people can have the virus and not have it affect their own physical health whatsoever.

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For many people, neither the physical symptoms (which wax and wane) nor the safe sex practices (which are probably advisable anyway) are as painful as disclosure: When they share their diagnosis with a potential sexual partner, they are all too likely to receive a heaping helping of shame and rejection. Herpes has been alternately characterized as “sexual leprosy,” a “scarlet letter,” and “God’s punishment for sexual promiscuity.” The social consequences can be swift and serious: “We’ve heard from people that write in and say, ‘I disclosed and now people won’t sleep with me,’ which is the nightmare,” says Rich Juzwiak, one half of How to Do It, which fields herpes disclosure questions on the regular. “It’s so irrational.”

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This stigma puts people with genital herpes in the unenviable situation of essentially thinking for their partners, Juzwiak continues. In these cases, someone with herpes isn’t simply disclosing their status; they’re giving an entire TED Talk on the basics of sexual health. After all, refusing to sleep with someone who has the herpes virus means cutting out a sizable chunk of the population. In fact, if you’ve had several sex partners in your life, you’ve probably already come into contact with someone with a genital herpes infection, whether they knew it, you knew it, or you were both in the dark. “We’ve all been exposed to herpes,” sex advice columnist Dan Savage once wrote to a woman who was worried about having slept with a herpes-positive couple. Regardless of whether she developed symptoms, would she have to forever tell people that she’d come in close contact with the virus? Savage ruled a firm “no.”

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The gap between the social rules of disclosure and the medical reality of herpes can look especially silly to the experts. Anna Wald, an epidemiologist at the University of Washington, says that looking at the data might lead one to believe that HSV-1 oral herpes is the condition people should be disclosing to one another, since it’s a major vector. Yet it’s almost impossible to imagine this kind of disclosure in the U.S. today: “I’d love to make out,” the college freshman says, “but I have to tell you about my last cold sore.” Instead, we fixate on genital herpes—the “sexual boogeyman.” There is some logic to this: An HSV-2 genital infection can be more severe than others, and because fewer people currently have it, it could be argued that suppressing transmission is a more important public health goal. But how is it fair to let cold sores slide, and then ask people to disclose that they once noticed similar bumps pop up on their private parts?

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When it comes down to it, not one of the physicians, ethicists, advice columnists, or even HSV-positive people I spoke with actively endorsed the “keep it to yourself” strategy with any form of genital herpes, and HSV-2 in particular. For one, secrets can get you sued. Just look what happened to Usher: In 2017, three women accused the R&B singer of exposing them to genital HSV without disclosing his status, which can be a misdemeanor in California. For another, choosing to disclose actually suppresses HSV-2 transmission, according to Wald’s research. While she isn’t sure exactly why this is the case, it suggests that those who talk openly about their STI status with their partners may be practicing safer sex in general—by using protection, taking antivirals, and keeping an eye on outbreaks. However you make sense of it, fewer instances of painful blisters in this world is a good thing.

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There’s one more problem with keeping one’s genital herpes diagnosis a secret: It further compounds the shame and stigma around the virus when it is transmitted, which is still possible, no matter how many precautions a person takes. “People have the right to know what they are putting themselves at risk of, even if the risk is minuscule,” says Ella Dawson, a patient advocate for others with a herpes simplex diagnosis. Dawson found out she was infected with HSV-1 on her genitals when she was just shy of 21. She was infected by a partner who she says she has reason to believe knew his HSV-positive status but didn’t share it. “It’s a huge betrayal,” she told me, and one that left her in both physical and emotional pain. “For me, I think disclosing is an act of respect, an act of love, and an act of care.”

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It’s clear that talking openly about herpes is everyone’s responsibility, whether their own HSV status is positive, negative, or unknown. To date, the best cure for herpes stigma is an accurate understanding of the virus and the risks it poses (or doesn’t). Here, we can all take a page from Warren, the STI nurse and researcher. When Warren first met her now-husband, she sent him for a full lab work-up, HSV test included. They were both surprised to discover he was positive for HSV-2. After his diagnosis, “we used condoms for a few weeks while having sex,” Warren told me, but stopped. Her husband is still on suppressive therapy. Years later, she’s still never contacted the virus herself. “But I said, you know what, this is my person, if I get this, I get this.”

Correction, August 1: This article originally stated that false negatives are common on HSV tests. It is false positives that are common.

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