Illustration by Eleanor Doughty
Even though 90 percent of people have some form of herpes, the virus is heavily stigmatized. But the transition from "itchy annoyance" to shameful secret may not have been coincidental.
In 1982, all eyes were on the herpes simplex virus. In the previous two decades, the public perception of the benign-but-irritating virus had transformed from "it itches down there" into the scourge of a generation. That year, Time magazine ran a cover story titled "", which explored—and reinforced—the stigma surrounding herpes. Its authors, John Leo and Maureen Dowd, argue that herpes could put an end to the so-called sexual revolution, which they clearly disdain. (In fact, the feature's opening sentence reads: "After chastity slouched off into exile in the '60s, the sexual revolution encountered little resistance.")
The story declared herpes to be "altering sexual rites in America, changing courtship patterns, sending thousands of sufferers spinning into months of depression and self-exile and delivering a numbing blow to the one-night stand." It emphasized the authors' expectation that "the herpes counterrevolution may be ushering a reluctant, grudging chastity back into fashion." Herpes is portrayed as a scourge of swingers, prostitutes, and philanderers. In the course of the piece, various women "give husbands smiling lectures on the ravages of the disease to keep them faithful," are left by their fiancés for breaking out in herpes sores, brag about having given herpes to "a thousand guys".
The authors conclude by thanking herpes for "helping to bring to a close an era of mindless promiscuity" and "ushering in a period in which sex is linked more firmly to commitment and trust."
Read more: You Probably Have Herpes, but It's Chill
Though the Time story can be reduced to irresponsible journalism, the narratives outlined therein are still portrayed constantly in the media. On Saturday Night Live in 2006, Amy Poehler played the clueless housewife in a in which she contracts herpes from her supposedly-faithful husband, played by Alec Baldwin. In a 2014 of Inside Amy Schumer, Amy tries to negotiate with God to protect her from getting herpes. God, played by Paul Giamatti, retorts, "70 percent of people who reach out to me are having a herpes scare."
Most people don't care about the virus itself: They care about how the virus is perceived.
Jenelle Marie Davis, founder of the award-winning and a spokesperson for , a dating site for people with STDs, was diagnosed with genital herpes when she was sixteen years old. After the friend in whom she had confided betrayed her trust, Davis was shamed and bullied by other kids. "Being a teenager in high school is tough as it is," she tells me. "Couple that with taboo infection... it was just a really bad experience for me."
Every day, Davis interacts with and provides resources to thousands of women and men facing the same social backlash, stigma, and shame she dealt with as a teen. "When there's been research done about what the consequences of herpes are and what people are most afraid of, it's the social ramifications," she tells me. "Most people don't care about the virus itself: They care about how the virus is perceived."
Davis says herpes is able to be "the last bastion of acceptable shaming" because of its benign nature and because no one wants to talk openly about their diagnosis. "No one is talking about it, so everyone continues to hide and continues to laugh and continues to let the jokes continue," she says. "Nobody stops the jokes in their tracks."
It is estimated that almost 90 percent of the US adult population has been exposed to herpes or carries herpes, so getting tested is basically a moot point.
The Center for Disease Control and Prevention (CDC) routine HSV-2 testing because it is "expensive; false positive test results may occur in some persons with a low likelihood of infection; and the diagnosis may have adverse psychological effects for some people."
According to a published in The New England Journal of Medicine, "For many patients, the psychological effects are far more severe than the physical consequences of the disease. Shock, anger, guilt, low self-esteem, fear of transmitting the infection to others, and impaired sexual function are common and can interfere substantially with relationships." Herpes diagnosis can to social withdrawal and isolation, particularly in young people.
In many cases it's the harmlessness of the herpes virus itself that's responsible for the disconnect between physicians and their patients. Studies show that many doctors overlook the psychological toll herpes can take and focus exclusively on treatment of physical symptoms.
, MD, answered some questions for me via online chat. When I asked why herpes testing is usually not included on an STD panel, he listed four reasons: "First, getting tested for herpes is expensive, and that is one of the reasons as to why it is not included in a common panel," he said. "Second, it is estimated that almost 90 percent of the US adult population has been exposed to herpes or carries herpes, so getting tested is basically a moot point. Third, even if you have herpes, it is not really a big deal because it will not result in any life threatening infections... Last, the herpes virus can stay dormant and is difficult to detect in the blood stream."
A few conspiring circumstances surround the stigmatization of herpes, which began sometime in the 1970s. Up until the 60s, doctors weren't even able to distinguish between herpes simplex virus type 1 (or HSV-1), better known as oral herpes, or cold sores) and herpes simplex virus type 2 (HSV-2), characterized more frequently by genital sores.
"Before they just diagnosed it as herpes simplex virus. Whether you had a cold sore or whether it was on your genitals or whether it was on your finger, it was all just herpes simplex virus," explains Davis. "Then they decide to differentiate between herpes simplex virus 1 and 2, and immediately there becomes a 'good' and 'bad' virus. Now we're saying if you have herpes on your mouth you didn't do anything bad, but [genital herpes] becomes a moral issue."
There are many unproven yet fascinating that blame Burroughs Wellcome Co., the pharmaceutical company behind HSV-calming drug acyclovir (Zovirax), for developing the herpes stigma in tandem with their new drug in order to create a market for it.
Project Accept, a non-profit that aims to build a social movement of people with herpes and HPV, , "The Burroughs Wellcome advertising campaign was designed to stimulate demand for Zovirax by raising patients' concerns about the social consequences and implications of infection and emphasizing that the drug could reduce outbreaks and transmission."
Now we're saying if you have herpes on your mouth you didn't do anything bad, but [genital herpes] becomes a moral issue.
tells a similar story: "In the late 1970s, Burroughs Wellcome succeeded in creating a viable antiviral drug. The drawback was that it only affected a few viruses in the herpes family. At the time, these were not usually considered serious enough to require treatment at all. [...] A disease-awareness campaign was organized to alert doctors and patients to the benefits of the new drug. The case was made by 'marketing' genital herpes so that it acquired the status of an important disease. [...] In America, Burroughs Wellcome sponsored support groups to advise 'sufferers' of the benefits of the new drug."
Pedro Cuatrecasas, a biochemist who was involved in the discovery, development, and marketing of acyclovir as the head of R&D at Burroughs Wellcome Co. from 1975 to 1985, : "During the [discovery and development] of acyclovir (Zovirax), marketing insisted that there were 'no markets' for this compound. Most had hardly heard of genital herpes, to say nothing about the common and devastating systemic herpetic infections in immunocompromised patients."
By 1983, pharmaceutical analyst Arnold Snider told the New York Times, "My guess would be that most pharmaceutical companies have a program for genital herpes. It is quite an enormous effort right now." The Times concluded, "The current herpes epidemic presents a rare opportunity in the drug business—a potentially booming new market with potentially booming profits."
Dr. Kelly Schuh, best-selling author of Live Love & Thrive with Herpes and founder of , an online community of women with herpes, tells me physicians are "perpetuating the problem and the stigma" by not testing the general population for herpes. "I've had several people tell me [stories in which] their primary care physician would say, 'Oh you don't want to know what that is.' [Or] they will misdiagnose it and call it shingles, to take away some of the stigma, so that it's not genital herpes," she says. "I think in some ways they are trying to quote 'protect their patients,' but in reality they're lying to their patients."
Both Dr. Schuh and Ms. Davis believe that more testing would result in less stigma, but that doctors are uneasy about upsetting their patients. "People freak out, and then they want to know, 'How did I get it? Where did it come from?' And that's not an easy question to answer," says Davis. "Then it ends up becoming a much longer consultation, and really, I mean, people become suicidal—and understandably so, because the stigma is so bad."
With tests being expensive, inaccurate, and irrelevant to patients' health, it's not likely we will see an uptick in herpes testing anytime soon. But Dr. Schuh envisions another way to fight stigma: talking to each other. "I think the number one thing [women need to hear] is that they're not all alone. I think the stigma is really isolating. A lot of women, when they're first diagnosed... well first of all, they think they've done something wrong. And they feel like they're all alone."
Dr. Schuh has heard a lot of stories in her time managing Pink Tent. "It's horrible to know this, but there are people who are suicidal over this diagnosis," she says. "I just want to reach out and give them a big hug, and let them know that everything's going to be okay." She ends our call on a positive note: by reminding me that herpes is nothing to be embarrassed about. "It's truly a skin infection that can be managed," she says sweetly, most likely assuming that I have herpes. And odds are I probably do.
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