STIs aren’t easy to talk about — but they should be. Few conditions are so prevalent and yet so taboo. Despite the fact that one in two sexually active people under the age of 25 will contract an STI and the fact that STIs are at an all-time high in the United States, there’s still this impression that STIs live in dark corners, and that they’re a punishment for a small group of people who exhibit particularly reckless or unsafe behavior. In a recent Bustle survey of 226 women ages 18 to 34, only 51 percent of survey participants said they bring up STI prevention with a new sexual partner immediately, while 21 percent said they wait until they’re exclusive. So it’s clear we’re still not comfortable talking about our sexual health.
It’s difficult to think of another set of diseases or ailments that comes with the same stigma. Cancer, brain damage, heart disease — in no other instance is there so much blame or moral judgment associated with a health problem. Even though smoking is often met with disdain and moral condemnation, we don’t treat someone who smoked two packs a day as dirty or disgusting for developing lung cancer as we often do someone who contracts an STI. And yet, with STIs, the stigma remains strong.
One prime example of this is the polarization of how we treat people with herpes. Some estimates say that as many as 85 percent of people have some form of herpes — yes, 85 percent. Of course, there are two major types of herpes we tend to think of. Around two-thirds of people under 50 have oral herpes, according to the World Health Organization (WHO), while it’s estimated that one in four women and one in five men have genital herpes. And even though they come from the same virus — the herpes simplex virus — they are often viewed by society in completely different ways. For many, a cold sore — often a sign of oral herpes — is considered no big deal, while genital herpes have a huge stigma attached. And this difference, the ways we look at two variants of the same disease, says so much about our society’s stigma toward sex and STIs more generally.
Even within the world of STIs, the stigmatization of herpes seems to be especially strong. Maybe it’s because herpes is so common, but it feels as though it’s often reached for as a punchline to a joke or a lazy way to comment on anything weird on your skin. There’s a lack of understanding and a lack of a desire to understand the virus. But the more you learn about how common the disease is and how it manifests, the more difficult it is to understand the different reactions to the various strands.
One Virus, Many Forms
Simply put, herpes comes in two forms. “Herpes simplex virus is categorized into two types: herpes simplex virus type 1 (HSV-1) and herpes simplex virus type 2 (HSV-2). Both HSV-1 and HSV-2 are highly infectious and incurable,” the WHO says. “HSV-1 is primarily transmitted by oral-oral contact and in most cases causes orolabial herpes or ‘cold sores’ around the mouth. HSV-2 is almost entirely sexually transmitted through skin-to-skin contact, causing genital herpes.” Just to put in perspective how common genital herpes is, the WHO has estimated that around 417 million people aged 15 to 49 years have HSV-2 worldwide.
But in many ways, looking at herpes as two distinct strains is an over simplification. The distinction between HSV-1 and HSV-2 isn’t as clear as many people think. You can get HSV-1, which we normally think of as oral herpes, on your genitals if someone with oral herpes performs oral sex on you. In fact, you can actually get either strain of the virus anywhere — they’re not just limited to your mouth or genitals. “They can be present elsewhere on the body — genital herpes can be encountered on the mouth, for example,” Dr. Melanie Davis, a sex educator, tells Bustle. “Also, some people have the virus on other parts of the body — such as the arm or leg or eye.”
Despite the fact that this infection can manifest in a multitude of ways, society often still tends to treat the disease in a polarized, binary fashion. “Because oral herpes has not gotten as much negative press as genital herpes, it has not been treated as a scourge, although it is essentially the same virus and is common in the world population,” Dr. Sheila Loanzon, MD, an OB/GYN and someone who has herpes herself, tells Bustle.
But if it’s essentially the same virus in different places, why is one considered “OK” and the other not? And if either form of the virus can appear anywhere on our bodies, why is one particular manifestation seen as a bigger problem? That shows the power of STI shame and stigma. For some reason, when it comes to our genitals, we view disease in a totally different way.
The Stigma Of STIs
It’s impossible to look at the issue of herpes without looking at the stigma of STIs more generally. “All STI stigmas are the same in that they create feelings of shame, embarrassment, anger, and many other emotions,” Dr. Loanzon says. “The difficulty with herpes compared with other STDs like gonorrhea, chlamydia, and syphilis, is that it is a lifelong, dormant virus, one that is important to communicate to your partner to prevent spreading of the virus. The previously mentioned STDs can be treated privately by a health care provider and often do not leave lingering, long-term effects. Herpes has often become the butt of jokes in social media and movies to get a quick laugh and herpes positive patients can have difficulty finding the words to tell others, ‘That’s me.'”
And the stigma can go far beyond a joke — it can lead to people feeling ashamed.It’s a stigma that can keep people from revealing their STI status and even prevent them from getting help. Women are often — wrongly — considered less clean for having sex, and STIs are often — wrongly — considered to be associated with someone having reckless sex. Together, it can keep women from coming forward about their STI status, to doctors and to partners.
“As with any STI, there is a presumption of sexual activity and that the person either is having or had sex with someone who is ‘dirty’ both physically and morally,” Dr.Davis says. “The truth is that STIs, including herpes, have nothing to do with hygiene or morals. Anyone can get herpes — a baby can get it if someone who is shedding the virus kisses them.” Maybe it’s because, no matter how many strides we’ve taken in embracing sex-positivity, sex is still an awkward subject for many. Maybe its Puritanical influences run deep and there’s still a sense that sex is dirty or forbidden. Whatever it is, STIs — and any indiscretion to do with sex — carry a totally unwarranted stigma.
Yet, despite all of the talk about “STI” stigma, it’s difficult to really understand the impact that it has, unless you’ve lived through it. Sarah*, 26, shared her story with Bustle.
“I dated a guy for about two years, we broke up and both dated other people then got back together,” Sarah tells Bustle. “About two weeks into the ‘rekindling’ he gave me genital herpes. He didn’t even know he had it. I saw it and said something about it but he brushed it off and said it was just dry skin. About a week later I had a spot that was not normal, which quickly turned into a sore, then multiple sores, and ended up being the first and by far worst breakout I will ever have.” After she went to the doctor, Sarah was distraught and withdrew from her friends and family. She felt, in a word, unclean. “I started to notice how many people joke about herpes or talk about it like it’s the worst thing ever. It was seriously horrible.”
Sarah had HSV-1 (the strain often associated with cold sores) on her genitals. While the fact that it was the same infection as a cold sore made it easier to explain to people, the shame of having herpes near her genitals was the same. Sarah abstained from sex for a while — buying new vibrators instead, because she assumed that would be the future of her sex life. When she thought about future partners, she was intimidated and embarrassed. “I thought they would be like, ‘Ew, hell no, you’re a nasty slut,'” she says. But when she actually started telling people, it went better than she expected. And when it didn’t, she was OK with that, too.
“If someone does not accept you because you have herpes, it is OK,” Sarah says. “It is OK for someone to not want to sleep with someone due to the risk of getting herpes. I truly believe the person that you are meant to be with will be fine with every part of you. The person that is not OK with it is not your person. It’s OK!”
For her, living with herpes was far less traumatic than the stigma attached to the disease — and she points to a lack of education as a big part of the issue. “The stigma is hands down the worst part,” she says. “[K]nowing is better than not. I am really happy that I know about it and could protect others from getting it. I have done my research and know that there are so many people out there that have it and don’t know, then unknowingly give it to someone else.”
The Stigma Of Oral Herpes
But there can be a stigma attached to oral herpes as well, and some people have had traumatic experiences because of them. “Because cold sores appear on such a visible part of the body, I would get teased relentlessly when I had a breakout growing up, especially before I was allowed to wear makeup to help cover them up or had medication to help prevent breakouts,” Megan, 27, tells Bustle. “I remember that kids (especially boys) would make sexual jokes, assuming they were sexually transmitted, and I would have to explain that I have had them my whole life.”
For Megan, her oral herpes had a huge effect on her dating life. “[I] was wary of disclosing that I have oral herpes because some folks would immediately reject me, saying they were afraid of getting oral herpes while kissing and/or genital herpes during oral sex,” she says. “So, the stigma surrounding herpes made it hard for me to feel comfortable talking about my status even though I knew it was important to disclose for their safety. One partner I had … physically cornered me in my apartment and started raising his voice because he found Abreva [cold sore medication] on my dresser, so I lied about it being my roommate’s because I was so nervous he was going to harm me. He was cheating on his girlfriend, so he was worried I was going to give him oral or genital herpes and then she’d find out.” While on the whole, society is much more forgiving of cold sores than genital herpes, it’s important not to ignore how some people are affected by herpes, even when it manifests somewhere other than the genitals.
Megan senses that a lot of the reaction comes from a lack of discussion — and a lack of understanding — about herpes. “I don’t think a lot of people truly understand what herpes is (I had a partner who thought his cold sores were caused by wind/dust/sun because he was a baseball coach) whether they have it or not — they’re mostly just afraid of getting it because they know it can’t be cured,” she says. “When I share the statistics with friends or family about how many people have herpes and might not know it, they’re shocked and often don’t believe me.”
Education And Treatment
This lack of education and understanding also means that people don’t know how herpes can be controlled and medicated — or even how you test for it. As Dr.Loanzon explains, it’s often not tested for in regular STI screenings. “Herpes is not routinely checked in blood testing due to CDC recommendation given that blood testing can be inaccurate and a false positive result (test results that say you have herpes when you do not actually have the virus) can have detrimental emotional effects,” Dr. Loanzon says. “The CDC also has stated that diagnosing genital herpes in someone without symptoms has not shown any change in their sexual behavior (i.e. wearing a condom or not having sex) nor has it stopped the virus from spreading.” Many of us would assume we were being tested for herpes during an STI screening, but that’s just one of the many misconceptions about the virus.
Though it can’t be cured, there are plenty of treatment options for genital herpes, some of which are only taken during a flare-up and others that can be taken every day. If more people understood that herpes can be managed, maybe it wouldn’t carry the same stigma. “I was definitely one of those people that thought it was gross and the worst STD, but I was actually just uninformed,” Sarah says. “Many people have it and it’s really not a big deal. It’s like getting an acne breakout on your face. It’s something that happens every once in awhile, it sucks, it goes away, and everything is fine.”
Sarah is living proof that you can have a healthy relationship — and a healthy sex life — after a herpes diagnosis. “I just moved in with my boyfriend who is so so wonderful and the love of my life,” she says. “I told him shortly after meeting him and he was amazing. I will never forget how he turned and looked at me in the eyes and grabbed my hands and thanked me for telling him. He told me how he couldn’t imagine how hard it must be to say that, how he still thought I was amazing and beautiful, and that it didn’t change the way he felt about me. We just moved in together and it has been great. I have the occasional breakout and we just don’t have sex during those few days. He’s the best and I’m lucky to have someone so awesome to share life with.”
Herpes doesn’t have to be a death sentence for your sex life — and it’s certainly not a sign you’re reckless or dirty. With the majority of the population of the world having some form of herpes — and any form being able to spread to anywhere on the body — it’s astounding and worrying that the stigma remains so strong. But, from women who have been there, it’s clear that communication and education is the key. It’s time to demystify herpes — and that means talking about it.
*Name has been changed.
Originally posted on Bustle