For many people living with this common disease, the most debilitating symptoms are shame and isolation.
Even after his friends hype him up, Jamin Peckham still backs out sometimes. It’s not that he’s shy or insecure about his looks. Instead, what keeps this 27-year-old from approaching the cute girl across the room is a set of hypotheticals that most people don’t deal with.
“My mind runs ahead to ‘the disclosure talk’ and then all the way down to, ‘What if we have sex and what if I give it to her?’” said Peckham, an IT professional who lives in Austin, Texas.
Peckham has had genital herpes for six years now and got it from an ex-girlfriend who didn’t know she had it. He hasn’t been in a relationship with any girls since his diagnosis, though he’s been rejected by a few girls who asked to be friends after hearing about his condition. Due to this, Peckham said that he has to work harder than ever to secure a romantic relationship.
Some think of people like Peckham as immoral, assuming only people who sleep around get genital herpes. The stigma of the virus, which exists at the heart of this faulty mindset, is usually worse than the symptoms themselves, as it affects dating, social life and psychological health.
According to the Centers for Disease Control and Prevention, about one out of six people in the United States aged 14 to 49 have genital herpes caused by the HSV-2 infection (the herpes simplex virus often responsible for genital herpes). The overall genital herpes statistic is probably higher, the CDC stated, since many people are also contracting genital herpes through oral sex caused by HSV-1 (the kind of herpes usually responsible for cold sores). Taking that into account, genital herpes statistics are usually quoted at closer to 25 percent for women and 10 percent for men, but most of these people don’t even know they have it.
In terms of a person’s health, genital herpes is usually nothing to worry about. According to the National Institutes of Health, many people with genital herpes never even have outbreaks or their outbreaks decrease over time (one or two outbreaks a year is not uncommon). The virus can lie dormant in your system for years without coming to the surface. The initial outbreak is often the worst, occurring a few days to a couple of weeks after being infected. Symptoms may include a fever, headache, and muscle aches for a few weeks. But for the most part, outbreaks consist of painful fever blisters or sores on or near the genitals (or, in less common cases, sores appearing elsewhere) for a few days, as well as burning, itching, swelling, and irritation that may be triggered by stress or fatigue. The virus never goes away, and some take antiviral medicines to relieve or suppress outbreaks.
The only times that having genital herpes can be dangerous are when having sex with someone who has HIV (since it can increase your chances of getting HIV) and during pregnancy. A genital herpes outbreak during the third trimester of pregnancy and during delivery may be deadly for the baby if he or she contracts it from the mother (neonatal herpes, it’s called), but it’s incredibly rare (one per 3,000 to 20,000 live births) and preventable with medication and a C-section, according to an article published in American Family Physician.
Genital herpes is contracted during sexual contact, usually spread through fluids on the genitals or mouth. You can only get genital herpes from someone who already has it, can get it during just one sexual encounter, and can get it with or without a condom. Condoms merely lower your risk, according to the CDC. You can even get it if the other person doesn’t have symptoms, since the virus sheds about 10 percent of the time for asymptomatic HSV-2 infections, according to a 2011 study published in the Journal of American Medical Association.
Film and TV no doubt keep the stigma alive. Almost every Judd Apatow movie includes a joke about herpes.
Herpes has a unique stigma among sexually transmitted diseases. HIV/AIDS is stigmatized, but few laugh at people who have it because it’s a serious illness. HPV can lead to cancer, on occasion, and women get tested regularly for it, making it no joke to most. Chlamydia, syphilis, crabs, scabies, and gonorrhea are sometimes the target of jokes, but these STDS are typically curable, so people won’t have to endure the annoyance for too long. Genital herpes, though, isn’t curable, is thought of as a disease only the promiscuous and cheating-types get, and is a popular joke topic.
Despite the fact that herpes has been around since the time of the Ancient Greeks, according to Stanford University, the widespread stigma seems to be just decades old. Herpes is the “largest epidemic no one wants to talk about,” Eric Sabo wrote in the New York Times. Both Project Accept and HSV Singles Datingblame an antiviral drug marketing campaign during the late 1970s to mid-1980s for herpes’ stigma. But it’s difficult to pin down exactly when and why our negative associations started.
Regardless of where the stigma came from, film and TV no doubt keep it alive. Leah Berkenwald pointed out in an article for Scarleteen that almost every Judd Apatow movie includes a joke about herpes. Living Sphere has a large list of films, TV shows, and books that mention genital herpes, with many of the films and TV shows poking fun at people who have it. Sometimes the jokes directly suggest people with genital herpes are whores or cheaters or they indirectly make the connection, such as the classic Hangover line, “What happens in Vegas, stays in Vegas. Except for herpes.” The prevalence of these jokes can keep people with genital herpes from opening up.
Jennifer Lemons, a 42-year-old writer and comedian from Richmond, Virginia, isn’t offended when she hears herpes jokes, but says she used to be more sensitive before she got the facts. She’s come to peace with her genital herpes, which she was diagnosed with three years ago, after feeling shame about it. Once she realized how common it was and how you can get it after just one sexual encounter, she began sharing those facts to combat herpes jokes.
“If people had all the info, it wouldn’t be funny anymore,” Lemons said. “You have to figure, if indeed the stat is one in four, and you’re telling a joke at a party where there are 20 people, there are probably a couple people there who are not calling you out, but whose feelings are hurt.”
"They begin thinking of uncomfortable conversations with people they’ll have to have and whether they’ll pass it along to the next person."
Lemons approaches her romantic life pragmatically: “If you don’t like it, don’t date me,” she’ll say to guys. Lemons was married and her then-husband considered and researched the condition before agreeing to date her. She never gave it to him, since they used condoms, took medicine, and avoided sexual contact during her outbreaks—which for her usually occur on her back and waistline.
Not every guy Lemons dated has been cool with it, though. She always discloses the condition on the second date, after realizing she likes the guy enough to go out again. One guy Lemons dated said he was okay with her herpes, but it became obvious after the first time they had sex that he was inspecting her genitals and “disguising it as foreplay,” Lemons said.
“I finally asked, ‘Find what you were looking for?’” Lemons said. “I was a little angry and hurt and he was really embarrassed. He did admit that he was looking for signs based on what he'd read on the Internet… It was obvious he wasn't ready for a sexual relationship with me.”
Others have dealt with their diagnoses much more harshly than Lemons. An entire spectrum of diagnosis responses can be found in a Topix.com forum that was posted in 2009 and still receives comments to this day. The boy who posted it, then 16, was having trouble accepting his diagnosis and was looking for advice. The next five years of responses include people sharing advice and their own stories, as well as people threatening to spread the disease or saying it’s a curse from God for sinful promiscuity. One girl asked, “What’s the point of living?” Many expressed a desire to be loved and accepted and the fear that they’ll never experience those joys again. Some couldn’t accept the permanence of it. One girl waited until marriage to have sex and got it from her husband and another got it after being raped.
Dr. Christopher Lewis, a family medicine doctor in the Austin, Texas area, has diagnosed genital herpes many times and has seen a variety of responses from patients, ranging from “it makes sense” to “my life is over.” Denial and anger are at the top of the list of initial responses.
“It could be a very confusing time period for them,” Lewis said. “They start thinking back to all the sex partners they had to see who they could’ve gotten it from. Then there’s a level of fear and guilt that ‘Maybe I gave it to someone else and don’t realize it.’ Then they begin thinking of uncomfortable conversations with people they’ll have to have and whether they’ll pass it along to the next person.”
All of this insecurity is over a skin condition that doesn’t show up most or even all of the year.
There are many dating sites for people with genital herpes, a Herpes Resource Center Hotline (for counseling and information) and in-person andonline support groups. Aimee Wood, a psychotherapist in Philadelphia, has been running one of these support groups since fall 2011.
Every other week, between six and 10 people crowd in a room with Wood to discuss the trials and tribulations of their herpes diagnosis. Topics range from how to respond when hit with a herpes joke (give the facts if you don’t want to out yourself, Wood advises them) to forgiving the person who gave it to you (though very few know who they got it from). Disclosure is a frequent topic of discussion in the group.
“We discuss the pros and cons of disclosing too soon versus too late, and it’s clear that there’s a fine line between waiting until there’s a little bit of a rapport so they can see you as a person, and having sex,” Wood said.
Wood’s patients rarely have issues when disclosing to family and friends. One girl’s father struggled to accept it and would make snarky comments and even blame her for having it. But nine times out of 10, Wood said, friends and family are supportive and sympathetic. The most common struggle among her patients is navigating romantic situations (which many delay or avoid altogether).
Another common struggle among her patients is maintaining their sense of self-worth.
“We do a self-esteem exercise with a crumpled $20 bill, where I ask clients to go around the room and beat it, write on it, and stomp on it, while still keeping it intact,” Wood said. “Then I ask them how much it’s worth. Still $20, they’ll say.’”
All of this insecurity, discouragement, rejection, tears, anger, counseling, suicidal tendencies, humiliation, shame, and isolation is caused by the stigma of a skin condition that usually doesn’t show up most or even all of the year and can be contracted after having protected sex one time. Can the stigma of genital herpes really survive the facts? Peckham and Lemons don’t think so.