As comedian Ariel Elias stepped on stage at a neighborhood bar in New Orleans several years ago, she started simply. She poked fun at her family. As the night went on, her adrenaline kicked in as Elias prepared to reveal one of her newest jokes. The one that would expose her most intimate secret.
“I have a lot of medical issues,” Elias joked. “I refer to it affectionately as adult acne, but my doctor says ‘hey, that’s not cute, you have to call it herpes.’”
Elias, 26, now a comedian in New York City, was diagnosed with the herpes simplex virus type two (HSV-2) three years ago. Upon receiving the diagnosis, Elias said she felt ruined and thought she had become “that girl,” the stereotype of someone who has herpes – someone disgusting. It was through her comedy that she was able to start coming to terms with her diagnosis.
“I’m gross, but not because of herpes,” Elias said in an interview. “I’m a human being and I’m disgusting. You’re not wrong for thinking that, but you’re a hypocrite if you don’t think you are disgusting too.”
While herpes is often compared to HIV because no cure exists for either, many experts and sufferers say, the virus has a stigma of shame that is really difficult to shake. Many point out that while HIV positive people have a community of support, many herpes positive people live in isolation. This is changing however, slowly, as several young writers with herpes and some entertainers, like Elias, have begun talking about the virus more openly.
“It becomes less embarrassing if you can laugh about it,” Elias said. “If you can make the joke first then no one can make the joke about you.”
Last October, the World Health Organization published a study that estimated 417 million people ages 17 to 49 have HSV-2, genital herpes. That is in addition to two-thirds of the world’s population under the age of 50 who have herpes simplex virus type one (HSV-1). While HSV-2 is commonly associated with genital herpes and HSV-1 is more associated with cold sores, both viruses can occur on genitals or in the oral region. With both kinds, the level of contagiousness and asymptomatic shedding decreases as time goes on.
“We don’t really talk about herpes in any kind of fashion that makes it a reality for the everyday person,” said Melissa King, a psychotherapist in New York City who holds support groups for women with herpes. “We condemn it and we judge people we think are sleeping around.”
According to the American Sexual Health Association, many view a sexually transmitted infection, known as an STI, as a fate that occurs to those who have done something wrong. But herpes can happen to anyone regardless of sexual experience, King says. Her patients include women who contracted the virus from their first sexual encounter and women who contracted it from oral sex. Many people who are herpes positive may not even know it because they haven’t shown physical symptoms for it, King said.
Herpes can be transmitted to others even when no symptoms are present, say experts. According to officials in the Department of Health in New York, one can have herpes for a long time without ever being able to identify the source of when the transmission happened. The Centers for Disease Control and Prevention does not recommend testing people for herpes who do not show symptoms due to the risk of false negatives and positives – a fact that many people who regularly get checked for sexually transmitted infections do not know.
“There is no cure like there are for other STI’s but herpes is not life threatening and it will never progress to anything that will be really dangerous,” said Randi Coun, the senior director of social services of Planned Parenthood in New York City. “It’s simply uncomfortable and can be a nuisance.”
Coun thinks that the stigma causes people embarrassment. At Planned Parenthood, a herpes diagnosis is usually what drives most patients to seek crisis counseling, she adds. Time and time again, Coun says the message social workers emphasize in counseling is how common herpes is.
Elias noticed her first outbreak four months after she graduated from college. Initially, she wrote it off as a reaction to riding her bike over potholes in the city. She had a boyfriend at the time, but didn’t necessarily make the connection.
“I was in such denial about it. I refused to believe I had herpes,” Elias said. “My defense mechanism in general when anything is wrong is to ignore it and hope that it will go away.”
After her second outbreak appeared six weeks later, she knew it was time to go to the doctor. When she received her diagnosis, Elias said she wasn’t surprised. But her shame from the diagnosis resulted in her staying with an abusive boyfriend for a year too long.
This would be familiar to Ella Dawson, a 23-year-old feminist who actively tweets and blogs about having HSV-1 on her genitals. She too stayed in an abusive relationship after being diagnosed in May 2013. Based on her personal experience and emails she receives from her readers, she has noticed a pattern of emotional abuse in relationships once an STI comes into the picture.
“The problem is that society tells me I’m repulsive,” Dawson said. “When you have someone you trust tell you that you shouldn’t talk about it because it’s shameful – once you realize they’re wrong, it makes you want to talk about it.”
When King worked at an STI health clinic, she said doctors told her that many people reacted worse to a herpes diagnosis than to an HIV diagnosis. But the lasting health effects of herpes are minimal. As King put it, herpes is similar to an occasional “skin rash,” whereas STI’s like chlamydia can cause permanent damage to the fallopian tubes, uterus and other internal organs sometimes leading to infertility.
For both Elias and Dawson, sex education is critically important in curbing the stigma surrounding herpes.
“We have to get rid of abstinence only sex education,” Dawson said. “We definitely need stories told about how people live with herpes as opposed to being a punch line and an insult.”
In terms of relationships, both women say having herpes is not such a big deal. Elias is now in a different relationship and her boyfriend does not show symptoms of herpes. As for Dawson, she has not transmitted the virus to any of her partners, as far as she knows.
Transmitting herpes can be reduced through several ways, King said. One option is to take daily medication, which can reduce the asymptomatic shedding of the virus, which is one of the main causes of transmission from one person to another. After the first year of contracting the virus, the level of contagiousness decreases, King said. While condoms may help lower the risk of transmission, it doesn’t fully prevent it. Latex condoms can only prevent infection in areas that are covered by a condom, said officials in the city’s health department.
“This isn’t going to kill you. It’s a silly disease,” Elias said. “There’s something very funny about how your genitals can get blisters, as if they’ve been doing hard work, like hard labor.”