By Katie Camero, BuzzFeed News
There's no hiding the fact that genital herpes, a sexually transmitted infection, carries a stigma. While treatable, it's incurable, and many people feel ashamed, isolated, or depressed after a diagnosis.
But it's 2022. There's no reason to hide behind closed doors just because you have a health condition shared by half a billion people, about 16% of all adults, worldwide.
What's more, numerous content creators and influencers with herpes have your back. They're using their own experiences to help raise awareness, debunk myths, and break the herpes stigma, one TikTok, podcast episode, or YouTube video at a time.
Suzanna Elzbieta, 37, "went through a pretty dark period" after being diagnosed with genital herpes three years ago. "I just felt kind of doomed," said Elzbieta, who goes by her middle name.
"I felt really personally bothered by the stigma, judgment, and shame around it. I thought if I could help alleviate that in some way, by owning my own experience with it, even if it was vulnerably at first, then I was going to do it."
While she reassures others with genital herpes through her TikTok account, which has nearly 190,000 followers, she's found that creating content has helped her cope as well.
"I immediately had so many people tell me they had it too, or they knew people that had it. I never could have anticipated this level of support and how many people need that support."
Genital herpes is stigmatized in part because sex education in the US is often misleading, inadequate, or virtually nonexistent, with many people not truly understanding how the virus spreads or impacts personal health. Both influencers and sexual health experts alike say that has to change.
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"Getting an STI doesn't make you dirty or a bad person," said Julia Bennett, Planned Parenthood's director of digital education and learning strategy. "It just means you got an infection that happens to be transmitted sexually, judgment neutral, end of story."
Herpes infections are incredibly common
More than 50% of adults in the US have herpes simplex virus 1 (HSV-1), or oral herpes, which causes those painful fluid-filled blisters and cold sores that can emerge around your mouth or under your nose. It's most commonly contracted in childhood from sharing drinking glasses and eating utensils, or skin-to-skin contact with someone who has HSV-1, but it can also be transmitted via oral sex and kissing in adulthood.
About 12% of, or 1 in 6, people ages 14-49 have HSV-2, which is generally contracted from blisters on or near the genitals, although you can still transmit the virus even without any obvious sores on the skin. Some people have few or no symptoms, and many people may not know they have it at all. About 87% of people with genital herpes have never been diagnosed by a doctor.
Routine STI screenings in the US don't include tests for herpes. That's partly because herpes tests, including swabs of lesions to detect the virus and blood exams that look for antibodies, can have high rates of false positive or false negative results, depending on the test and other factors.
Genital herpes symptoms aren't always obvious
The white bumps or fluid-filled blisters caused by genital herpes can be mistaken for acne or ingrown hairs, and they can appear anywhere on the vagina, penis, scrotum, butt, or upper thighs. While HSV-2 carries most of the stigma, you can also get HSV-1 during oral sex, so genital herpes can be caused by either virus.
The virus doesn't go away once you're infected; it lies dormant in your nerve cells until it randomly activates and causes an outbreak. The activation can trigger a few blisters, or none, in most cases, from time to time. Stress, fatigue, menstruation, and even excessive time in the sun can trigger an outbreak.
People with HSV-2 tend to experience about four to five outbreaks a year, while those with HSV-1 may have less than one annually. (The severity and frequency of outbreaks lessen over time, and outbreaks usually occur more often in the first year.)
You may experience burning, tingling, and numbness before an outbreak occurs. There are antiviral treatments you can take occasionally or daily to help prevent them.
Unlike HIV, HPV, gonorrhea, or chlamydia, herpes usually doesn't lead to serious health consequences in non-pregnant, healthy people, even if left untreated.
Learning you have herpes can be worse than actually having it
Lying on an emergency hospital bed in excruciating pain, Chase Cramer was hoping to get some relief from various symptoms. He had a UTI, strep throat, and some kind of skin reaction around his genitals.
Being a sexually active 24-year-old trans man with an understanding of STIs, he correctly suspected he was having his first herpes outbreak around his vagina. But instead of answers, Cramer, now 26, faced discrimination, ultimately leaving the hospital feeling worse and with no answers.
It wasn't until weeks after Cramer's hospital visit that he finally received his herpes diagnosis, during a short call with an employee who said, "You have herpes, sorry, good luck"; they didn't even tell him what type he had.
The entire process took a toll on Cramer's mental health:
"I went through a period of time where I just felt really gross about my body and really shameful about it. Learning you have herpes is actually more detrimental to your health than it is to actually have herpes."
"Why as adults are we so immature about something that is really so serious to your health? That's where I want people to connect the dots. It's not about people being dirty. It's about how your sexual health is related to your physical and mental health and how you need to take care of yourself."
It's important to have positive role models
Courtney Brame, who founded Something Positive for Positive People, a nonprofit championing mental health support for STI diagnoses and stigma, and hosts a podcast with the same name, found out he had HSV-2 in 2013. The experience shattered who he thought he was: a confident sexual being.
After struggling with the diagnosis for four years, he felt exhausted.
"It was a point where I got tired thinking about the lingering possibility of rejection, judgment, and being talked about behind my back. There is a very, very, very intense connection between sexual health and mental health."
"This platform has become a space where people who have been silent and silenced for so long can add volume to their voices and experiences in a way that's safe without having to out themselves. People should come get what they need. I don't want people to linger in this space or obsess over their herpes because that means you're not healing."
Having positive models for others coping with a herpes diagnosis is a must if we as a society want to dismantle the stigma, said Planned Parenthood's Bennett.
"The more people speak out about their experiences with herpes and STIs, anything our culture silences and doesn't want to hear about, the more other people will feel comfortable doing so and the more we'll start breaking down that shame and stigma."
It helps to have people from underrepresented groups talk about herpes
Being a man, and a Black man, in this space has been lonely, Brame admitted. "I feel like I have to be perfect and like I can't do anything wrong."
There are clear racial disparities that likely play a role in how certain communities experience herpes-related stigma. About 35% of Black people in the US have antibody evidence of a past HSV-2 infection compared with 8% of white people, according to CDC data from 2015-2016.
"Many Black women speak to the compound traumas as the most oppressed and impacted by patriarchy and white supremacy," Brame said. "Now add an STI to the mix."
Adrial Dale, founder of Herpes Opportunity, a space where people can seek advice about their own herpes-related issues, can relate. Throughout his work as a shame resilience coach, Dale said some straight women find it healing to talk to him about their herpes journey because they have lost trust in men.
"Unfortunately, we still live in a society where men talking about their feelings isn't quote-unquote masculine," Dale, 43, said. "As men, we build a lot of our identity around sexuality, but when a man gets herpes... it's that whole lone wolf kind of thing that men don't reach out for help, so more shame gets exacerbated."
Dale said he used to judge others for having herpes, but he was forced to look inward after he was diagnosed.
"It was a long road before I realized that a lot of the difficulties I was having were self-inflicted. I spent so many years in this self-confined jail cell of shame, and I knew that if I wanted to have a good relationship and a family, I had to figure this out."
Dating with herpes isn't as hard as some make it out to be
As many people do, Elzbieta immediately mourned the future of her dating life when she learned she had genital herpes, instantly feeling shame about having to disclose her sexual health status to potential partners. But she quickly learned many people don't care if you have herpes, as long as you're honest and transparent with them.
"Most people who will reject you or give you a rude response, if they even do, are just revealing their true colors. It can work as a filter that way."
Everyone brings something that's less than desirable into relationships, whether it's herpes or being cheap with money, said Terri Warren, an adult nurse practitioner, herpes researcher, and medical adviser for the American Sexual Health Association. "Having herpes doesn't mean that you're somehow one down from other people, it just means that the stuff you bring is different from the stuff that somebody else brings."
When it comes to informing potential partners, Elzbieta tries to tell people she has herpes as casually as she would mention she has a car.
"People just have this notion that your dating life is shot once you get herpes and it's just not the case."
Where is the stigma around herpes going?
While some people felt that influencers are making progress, others say that there's more work to be done to change how people perceive herpes and other STIs.
Everyone BuzzFeed News spoke to said that there's really only so much we can do at the individual level when what we really need, science-based sex education, is lacking in society at large.
"Sex education should not be presented as, 'This is why you should not have sex.' It should be taught that when you have sex, you have a responsibility to take care of yourself and be mindful of your partners. If you're using it as a scare tactic to deter young people from having sex, it's not going to work."
People make judgments about STIs, including herpes, because they're connected with sexual activity and "our culture really struggles with normalizing, accepting, and honoring people's sexuality," Bennett of Planned Parenthood said.
That said, individuals can still decide whether they react to that stigma, Brame said:
"Stigma itself is not going anywhere, but how we respond to the stigma, that's a completely different story."
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