Why Is Herpes Stigma Still a Thing?
Activists have been fighting a dominant, fear-mongering herpes narrative for years, but the COVID-19 pandemic might be shedding new light on the flaws in society's response to highly transmissible viruses
Late one evening four years ago, Erica Spera, then 25, noticed two bumps blooming in her vaginal area. The discovery alarmed her because, a week earlier, after not having sex for about six months, the New York City comedian twice hooked up with a new partner. Spera believed she was generally on the careful side of the spectrum, landing there in part because, during college, a friend of hers had contracted genital herpes. She’d asked the man if he ever had a sexually transmitted infection, and he’d said no. But with nothing to be done about the bumps as she readied for bed, Spera decided to visit a walk-in medical care clinic the next day. When she woke up, the number of bumps had doubled, totaling half a dozen by the time she disrobed for the doctor.
“Oh yeah, it’s genital herpes,” Spera recalls the doctor saying evenly. “I see it all the time; it’s not a big deal.”
“Um, do you have genital herpes?” Spera asked, hitting pause on the doctor’s playlist of nonchalant observances. The doctor said she didn’t, and Spera pleaded for some compassion.
“It’s jarring news to hear,” Spera says. “I was, like, a mess.”
More than one out of every six people between the ages of 14 and 49 have genital herpes, according to the Centers for Disease Control and Prevention. However, the commonality of cases does little if anything to mitigate the despair that, for most, comes with a diagnosis. Nor does the fact that genital herpes is about as easy to manage as oral herpes, and outbreaks often number only a few, with decreasing severity and frequency, over a lifetime.
After her diagnosis, Spera endured depression, and her self-confidence “tanked.” She quickly lost 10 pounds because she thought, “You need to be really hot now,” or else no man would want to have sex with her. Then, even after questioning the honesty of the guy she slept with — who later tested positive for herpes simplex virus type 1, or HSV-1, one of two types that causes genital herpes — Spera briefly dated him again out of worries over constant rejection on the dating scene. Such emotional carnage is a direct result of social stigmatization of HSV-positive individuals.
Meanwhile, mirroring and potentially exacerbating this harsh, unsympathetic reality today is our cultural response to COVID-19.
“I feel like there’s some hidden animosity sometimes against people who have COVID,” says Dr. Jessica Shepherd, an OB/GYN, women’s health expert, and clinical advisor to FemiClear, a company that manufactures genital herpes treatment products for women. As is true of the HSV virus types, Shepherd says someone with COVID-19 could be asymptomatic and infect others, which goes against the narrative that people who spread either the HSV viruses or the coronavirus are generally irresponsible. Shepherd believes the medical community “could have done a better job” informing the public about the realities of COVID-19, and calls for “a PR-type revamp” targeting public perception of people with the illness.
A number of COVID-19 victim-blaming cases have turned up in the media, with reports of those victims experiencing shame and isolation, not unlike that often felt by those with genital herpes. One man who wrote a letter to the Charlotte Observer said he experienced victim-blaming twice: upon his initial COVID-19 infection and re-infection. The victim-blaming phenomenon quickly became so disturbing and pervasive — particularly in communities of people of color — that by April the Surgeon General under the Obama administration, Dr. Regina Benjamin, felt compelled to speak out against it. “We don’t want to blame victims,” she told WBEZ in Chicago. “One of the things I hope we come out of this entire crisis with on the other end is a little more empathy.”
The stigmatization of individuals with genital herpes dates back decades. In a fear-mongering 1982 Time cover story, genital herpes was labeled “Today’s Scarlet Letter.” Since then, publications like The Atlantic and Slate have attempted to right that wrong, respectively categorized the stigma as “overblown” in 2014 and, last year, identifying the virus as a “generally harmless skin condition that happens to sometimes be spread sexually.” Vice even published a 2016 exposé charging “big pharma” with generating and promoting herpes stigma in the 1970s to sell new medications for its treatment — a propaganda campaign that eventually led to the garish Time cover.
Still, in spite of those more recent articles, as well as stigma-busting efforts from groups like The STI Project, which was founded in 2012, the negative image of people with genital herpes is so profound it inhibits the medical community’s ability to track it. The CDC does not recommend widespread screening of the virus because there’s a high rate of false-positive tests and “the risk of shaming and stigmatizing people outweighs the potential benefits.”
“The amount of grief that I’ve heard from folks is so disproportionate to what the virus actually is,” says Ella Dawson, a 28-year-old Brooklynite who’s among the leading voices of advocacy for people living with genital herpes. “I’ve heard stories of people who self-harm or consider suicide, and it’s just so unfair.”
Among the more under-discussed outcomes of a genital herpes diagnosis, Dawson says, is the fact that many settle into abusive relationships. In such scenarios, Dawson characterizes the virus as “a bargaining chip” that supplies the abuser with a reason to oppress their partner.
“Because people with STIs are struggling with so much shame, they’re also more likely to isolate themselves and keep it a secret,” Dawson adds, “and then that isolates you from folks who might be able to spot that you’re in an unhealthy relationship and help you.”
There are more fortunate stories of people with genital herpes finding love, and developing a healthy, caring relationship, however. Josh Zuege, a 36-year-old produce clerk living in Firestone, Colorado, a town 30 miles north of Denver, was diagnosed with the virus three years ago. Though he was dealing with other personal issues around the same time, he says the revelation was so stressful that he’s certain it played a role in an eczema outbreak that consumed an entire hand. Eventually, he adopted a more positive outlook — on his diagnosis and on life in general. He’s had just two genital herpes outbreaks since his diagnosis, and came to realize that the only significant change the virus would have on his life would be added difficulty in dating. He no longer felt like a hopeless case.
“You just gotta find someone who doesn’t care about certain things, they just care about you,” Zuege says. “That comes with getting to know somebody.”
He’s now living with a woman, the first sexual partner he had after his diagnosis. They’ve dated for two years, and he says they’re “building a life together.” Naturally, Zuege was nervous about informing his girlfriend of his status, but she took it in stride, which was a tremendous relief to him. He believes they’re so sympatico because they took things slow after meeting, getting to know each other as friends before becoming sexual. Though they have unprotected sex, Zuege says his girlfriend has shown no symptoms of genital herpes.
If that sounds surprising, it shouldn’t. According to a chart produced by Adrial Dale, founder of Herpes Opportunity, assuming that intercourse is not occurring during an outbreak, the unprotected sex transmission rate of genital herpes from male to female is just 10 percent. (It’s only four percent going the other way.) Added measures like daily medications, condom use, and tracking of outbreak symptoms lowers those rates even more.
With such low transmission frequency, why is the virus so pervasive? “Because people don’t talk about it, and they’re not willing to disclose [their status] to partners,” Dr. Shepherd says. She observes that many people with the virus worry about rejection, due in large part to the social stigmatization surrounding those who are HSV-positive. Both points were born out in an August 2020 nationwide survey of women aged 18 to 55, performed by FemiClear. The resulting data showed that 28 percent of respondents with genital herpes said they are not telling their sexual partners about their condition beforehand. Fifty-eight percent of respondents said they would not be intimate with someone who has the virus, exhibiting just how culturally deep-seated the stigmatization remains.
Count Erica Spera among the growing number of advocates working to change that. After pulling herself out of depression, she founded a support group for people with genital herpes and, later, co-created a podcast, Shooters Gotta Shoot, where she openly discusses dating with the virus. Ella Dawson recently tweeted that listening to Spera’s stories “is such a goddamn relief,” adding that it’s “rare to find clever people who aren’t sex educators just talking openly about dating and herpes jokes and how weird shit is.”
As the world sees a brightening light at the end of the pandemic tunnel, perhaps there will be less anxiety about COVID-19, and more civil, productive discussions about how to treat those with easily transmissible viruses. As Dawson observes: “It’s a real opportunity to show your best or your worst self.”
She’s somewhat optimistic the former version of people will show up, eventually, after the pandemic, in their approach to those with genital herpes.
“I think that folks are learning to have conversations about protection and behavior and what risks are you taking and have you gotten tested,” she says. “That will help normalize some of the risk and harm reduction and behaviors in conversations that we’ve been so uncomfortable having.”
Herpes stigma might still be widespread, but in light of COVID-19, says Dawson, an advocate now for one quarter of her lifetime, “all of a sudden people are speaking my language.”
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