This transcript has been edited lightly for clarity.
I’m going to start today by asking you guys to do me a small favor: I would love it if you could raise your hand if you have allergies. [Lots of hands go up] Okay, I can relate. I have a tiny nose so I’m always congested. Okay, thank you.
Second question: I would love it if you could raise your hand if you have herpes. [No hands go up] I see no hands and a lot more confused faces, and that’s what I was expecting. In the time that I have with you today, I want to talk about why it is that it is so socially unacceptable to talk about herpes, despite the fact that almost everyone in this room either has herpes or will encounter it at some point in the next few years. I’ll let that sink in for a sec.
So hi, my name is Ella. I live in Brooklyn, I’m twenty-three, I work in social media, and I have genital herpes. I was diagnosed with herpes at the end of my junior year of college. It was a really exciting twenty-first birthday present from the universe. I had a lot of feelings at the time, but my overriding feeling was just total confusion, because I had been told my entire life that I was not the type of person that herpes and other STDs happened to. People with herpes, in my mind, were dishonest, irresponsible, promiscuous, unfaithful, and—depending on who you asked—I didn’t consider myself any of those things. What I learned very quickly was that that really intense, deeply ingrained stereotype was the result of a very powerful social stigma that surrounds STDs like herpes in our society.
I’m going to talk a little bit about where that stereotype and that powerful social stigma comes from. I’m going to talk about three sources; there are more, but these are the ones that convinced me I’m human trash when I got diagnosed.
The first source of herpes stigma, and this will probably not come as a surprise, is the abysmal state of sex education in the US today. [Audience boos] Yeah, it’s bad. I received abstinence-only sex education, which consisted of being told that I should just not have sex if I wanted to protect myself from STDs or pregnancy, and as someone who is not planning to wait until marriage, and will probably have sex later this weekend, that message was never really going to work for me. I remember being shown very graphic PowerPoint slides of what STIs would do to my body, and in my seventeen-year-old Ella brain, I thought to myself, “That is never going to happen to me because my body and I have an understanding. My body has some respect for me, so I don’t have to worry.”
And even if you were lucky enough to receive comprehensive sex education, you were probably taught two things that are a problem. First of all, you were probably taught to “Just get tested. Just get tested! Just know your status.” But you were given no information about what to do when you test positive, at which point you’re largely on your own and you have to figure that out yourself. And even if you were lucky enough to learn how to put condoms on bananas, spoiler alert: condoms don’t prevent the risk of transmission of herpes because herpes is transmitted through skin contact, and not fluids, which condoms are meant to prevent. We’ll talk more about that later.
The second source of herpes stigma is pop culture. I’m a huge media junky, I love The Bachelor, so I do not want to pile on about how the media is bad. I love it. But the way that we represent STIs in pop culture is really messed up. For the most part, when we hear about herpes on television or film, it’s some sort of insult or punchline meant to put a character down or just be edgy. I think the best example of this for me is the line from The Hangover, “What happens in Vegas, stays in Vegas. Except for herpes, that shit’ll come back with you.” Really great cinema. I was recently in Vegas on vacation and I had a lot of fun telling bartenders that I had nothing to worry about in Vegas because I already had herpes. I actually got a lot of free drinks with that joke.
Even in the rare case that a character gets an STD on television, it is almost always gonorrhea or chlamydia, which are easily curable, and they learn a very special lesson about being “promiscuous” or getting tested more frequently, and then they move on with their lives. As a result, there’s no real representation of people like me, who live with very common, incurable viruses like HPV or herpes. There’s no real narrative script available to us in terms of how to live our lives now.
The third source of herpes stigma, and this is very specific to herpes especially, is actually your doctor—the person who you trust most to help you take care of your sexual health. Herpes tests are somewhat unreliable, and they are also expensive, depending on your insurance. Doctors will actually commonly not test you for herpes. Even if you go in and you’re like, “I want to get tested for STIs,” chances are you’re not being tested for herpes. If you peed in a cup recently, you don’t know your herpes status. I’ve heard many, many stories from people who went to their doctor, asked for a herpes test, and were either discouraged or denied a herpes test because they weren’t showing symptoms. There’s this common thought in the medical industry that if you’re not showing symptoms for herpes, you’re better off not knowing that you have it because the psychological impact of a diagnosis is that severe. And yet at the same time, even if you are asymptomatic for herpes, you can still transmit to your partner. So there are a lot of people walking around who think that they’re STI-negative who aren’t and who are still transmitting. That then feeds into that stereotype of people with STIs as dishonest and irresponsible.
So, all of that stigma considered, all of that misinformation… how common do you guys think herpes actually is? Five percent of the population? Ten percent of the population?
What do you do when you get diagnosed with something? You Google it, which is sometimes dangerous but in my case worked out really well, because what I learned very quickly was that according to the World Health Organization, two in three people in the world have the same strain of herpes that I do, herpes simplex virus strain 1. It typically causes cold sores, or “oral herpes,” but it can also cause genital outbreaks, as it does in my case. Two in three people. Two in three people in the world have HSV-1. And many are asymptomatic, but they can still transmit. It doesn’t change that fact.
There’s also HSV-2, which commonly causes genital outbreaks. That is, I believe, one in six people, one in five women, and one in four New Yorkers—which I love telling my friends to scare them. But yeah, it’s super common!
And there’s also herpes gladiatorum, I think I’m pronouncing that right—by far the most badass named strain of any STI. It’s actually not sexually transmitted. It commonly impacts wrestlers, high school and college wrestlers, who get it from each other during wrestling matches, or from the mats themselves, which is gross, because no offense, teenage boys are disgusting and we should probably be washing our wrestling mats anyway when you take herpes out of the equation.
There’s also, and this is really weird: chicken pox and shingles are in the herpes family of viruses. Obviously they’re not stigmatized, and they’re not sexually transmitted, unless you’re just really inventive.
But as a result, herpes is everywhere. It’s all around us, and it’s not necessarily sexually transmitted. But even if it is, it can carry this really out of whack, out of sync social stigma.
So, rewind: I’m twenty years old, I’m at the end of my junior year of college, I’m so looking forward to being a senior, I’ve just gotten this earth-shattering diagnosis, and I learn that two in three people in the world have herpes (at least the strain that I do; even more than that have other strains). It’s like being inducted into this secret society but I don’t know the password and there’s no directory. And the only thing that I wanted was somebody to talk to, who could tell me it was going to be okay, who could give me advice, who could tell me what home remedies were total bullshit, and I didn’t know how to find those people.
So I did what any self-respecting millennial would do: I started to talk about my herpes all of the time, with anyone who would listen to me. I told my parents right away, I told my partners, I told my roommates, I told my roommate’s friends who were like, “How did I get into this conversation?!” I had a lot of fun telling the guys waiting behind me in line to pee at frat parties—those were my favorite conversations.
But I just talked about it as much as possible, and I got one of two reactions most of the time. The first reaction: the person was obviously startled to find themselves talking about my vagina, but they responded with curiosity. They usually said, “…what’s that like?” Because when you find yourself in a conversation about something you have never had a conversation about before, you want to know! You want to know what it’s like. You want to know how you can protect yourself. So for the most part, I’m greeted with genuine curiosity and respect, especially if it’s somebody who already knows me: a classmate, a coworker, a friend.
And then the second reaction that I got was: “Me too!” Somebody’s face lights up because they’ve never had a conversation before with somebody else who has herpes. And suddenly it’s like I’ve given them permission to talk about their own weird experiences, and there’s two of us now. There’s two of us against the world, sharing this. And I’ve had those conversations with hair stylists, with Uber drivers, all the time.
My favorite conversation that I have ever had with a stranger about herpes went something like this. I was at a party my senior year of college, I was like The Hot Shit Senior at this party, and this really adorable guy was flirting with me. He offered me the rest of his drink, and I said, “You don’t have Norovirus, do you?” because this really gross flu strain was going around campus and people were throwing up in trash cans in the student center. It was revolting.
And he goes, “No no no, I don’t have Norovirus. And I don’t have herpes either, just so you know.” Ouch. It was actually the first time anyone had made a herpes joke to my face since I’d been diagnosed, and I was really shocked and taken aback. And I knew in that moment that I had a choice to make: I could either laugh at myself, and lose some respect for myself in the process, or I could say something.
So I gathered up my courage, most of which was liquid, and I said, “You know, that’s not really funny. Because I have herpes, and it’s actually really common, and you shouldn’t joke about it.”
He looked at me horrified, not because he’d been trying to get in the pants of a girl who had an STI, but because he had just insulted me to my face. And he also realized in that moment that he had harbored this prejudice inside of himself against an entire group of the population and just never known, much like I had done until I got diagnosed myself. He apologized profusely, and then we dated for ten months, which is a different story.
But that conversation completely changed everything, it changed my life. Not only because I met someone who is still one of my best friends, but because that is how you break down herpes stigma. It’s in those one-on-one conversations when you say to someone, “I have herpes. This is what it’s like. It’s okay. You can ask me questions.” And I love those moments, and I loved learning that, because suddenly this shitty, inexplicable thing that had happened to me had some purpose, and I could do something about it. I could have power over the way people saw me by being loud, basically.
So I started a blog, because I’m in my twenties and that’s what you do. I started to write about what it was like to date with herpes, and how to negotiate that, and what I was learning. And I started to write for websites like Femsplain about how having herpes intersected with my feminism and with my identity. And then I got my big break writing for Women’s Health Magazine’s website. I wrote an article for them called “Why I Love Telling People I Have Herpes,” because I work in social media and I know what people click on.
What happened next was extremely weird, which is that I became Internet famous for having genital herpes—which is a sentence no one has ever said before. I began to hear from hundreds of thousands of people around the world who had herpes and were so stoked that someone had written about us in a way that was not insulting or apologetic or full of pain. I wrote something kind of honest and funny and sexy, and I suddenly had this global community of people who had herpes who were excited to support my work, but also to teach me things that I didn’t know about our virus and its experiences, because everybody’s experience with herpes is highly individual due to how their body works.
But I also started to hear something else, something I liked a lot less. And I hear it on a daily basis. I hear it from my coworkers, from my friends, from really hot guys in bars, which is that I am so brave. I am so brave. “Ella, what you are doing is just so brave.” And the thing is, when you tell someone that they are brave, you are recognizing really hard work that they’re doing. You are giving them that validation and that respect for the risk that they are taking. But you’re also telling them something else, which is that you think what they are doing is unthinkable. That you yourself could never do that. It turns me into this weird superhero. And the fact is, that is not what I want.
Because in the world that I want, and in the world that I’m hoping all of you help me build, telling someone that you have an STI should not be brave or shocking. It should be normal, and kind of boring. Because I do not care how you got herpes. I don’t care if you got it because you had a ton of fun your freshman year of college—more power to you. I don’t care if you got herpes because your aunt who always had cold sores kissed you on the mouth when you were a little kid (which is actually how a lot of herpes is spread, it’s in family moments like that). And I really don’t care if you lost your virginity to a woman who lived a life before she met you. Because an STI, especially herpes, is not a reflection of your character or a consequence of a bad decision. It is an inevitability of being a human being on this planet who comes into skin contact with other human beings. Period, end of discussion.
And telling someone that you have an STI… we should not expect to be met with judgment, because the fact is that is a tremendous display of character. When you say to another person, “Hey, here’s this thing that makes me vulnerable, that I’m nervous about, but you deserve to know it because I respect you and I want you to make the right decisions about your sexual health.” An STI can be a huge display of character in the way that you choose to handle it.
My three year anniversary of getting diagnosed is coming up: May 9th. I’m really excited. I’m throwing a party. And I celebrate my anniversary every year, not because I’m celebrating that I have herpes. I’m not proud that I have herpes, I just refuse to be ashamed of it. But I celebrate the fact that I am still here. I am still here after three years of the universe telling me that I’m a disgusting slut who got what was coming to her. I have a voice, and it has never been stronger. I am happy. I love my job. I have amazing partners and friends. I am good with myself, and that is worth celebrating.
I also celebrate what I’ve learned, which is that there are a lot scarier things to tell another person in this world than “I have an STI.” Things like: “I deserve a raise.” Or, “I’m sorry that I hurt you.” Or, “I think I’m falling in love with you.”
And in the year since I went viral—online, not the other thing—I have learned that there are far more important things to say to the world, and to yourself, than “I have an STI.” Things like: “I have worth, I am worthy. I will not apologize for who I am. And I still deserve everything in this life that I need, and maybe, if I am lucky, a few things that I just want.”