Watch My TEDx Talk: STIs aren’t a consequence. They’re inevitable. [With Transcript]

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.

brave-or-shocking

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.”

Thank you.

Did my talk help you? Click here to donate to my sanity fund. 

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43 thoughts on “Watch My TEDx Talk: STIs aren’t a consequence. They’re inevitable. [With Transcript]

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  4. I hope this doesn’t sound too callous, but calling an HSV-1 infection an STI is kind of like calling someone who has had a small basal cell carcinoma burnt off their forehead a cancer survivor. I mean, yeah, technically you may have gotten it from sex, but you may have gotten it from sticking your finger in your mouth and then scratching yourself why your immune system is run down. One of the reasons doctors recommend not to test for herpes is the fact that it IS so common. It is frankly more cost effective to assume that you have it. I have never been tested, but I assume I have herpes as well-there is a 66% chance, and have been on both the giving and receiving end of oral sex (like the vast majority of adults) it may be dormant in my or someone else’s illioinguinal nerve as a result of my behaviors. I don’t know about anyone else but I get random pimples and minor sores and red spots on my body and consciously choose not to give them any second thought. Herpes is just a fact of life and in fact most children are infected as infants by their own parents . It is only really an issue if your immune system is impaired.

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  6. You are my hero lady! This speech is so moving and I’m so glad I found your blog. Something I don’t hear discussed much is how the stigma is really brought on by pharmaceutical companies that make billions off suspression drugs. This goes hand in hand with doctors who push the drugs. I have not had another outbreak since the first some 9 years ago by living a healthy lifestyle. That is your best defense in living with and not spreading hsv.

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  9. Thank you for this. I am recently diagnosed and going through panic attacks and all the thoughts that my life is over. I have never felt so broken, but speeches like this help me cope a bit better. I am still terrified but I still know I deserve happiness. Thanks

    • I just ‘celebrated’ my 1 year of being diagnosed with herpes and trust me “portland” it gets better… I wanted to die when i found out and for weeks after but each day i feel better and better about it. Life goes on and gets better, i promise

  10. Yes, girl. Yes. I admire you so much. Finding your articles has definitely helped with my own self-acceptance with my diagnosis. Education about the virus was key to my acceptance. I first discovered your work when I was writing a 10+ page paper about the stigmatization of STDs and was so blown away that there is this girl my age who had it and owned it with no apologies. You did not allow your diagnosis to negatively dictate who you are. That was the most badass thing I had ever come across. I’m hoping one day I can be fully accepting of myself as you are in yourself. In due time.

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  13. Thank you, Ella.
    I was diagnosed in August of 2010. I was dating a really great guy who failed to mention to me that he got cold sores. The night before he went away on a 3 week vacation we wanted a night to ‘hold us over’ until he got back. He went down on me and was unbeknownst to him, symptomatically shedding the virus on his lips.
    About 8-9 days later I started feeling really run down and tired. The itching, pain, swollen lymph nodes, nerve pain down both of my legs and open vesicles followed suit. I had no idea what it was, I was terrified. I went to the doctor who treated me with such kindness and sensitivity while telling me during the swab culture that herpes is far more common that I think and that it’s just a skin condition. I could have hugged him right there.
    I felt dirty, I felt like trash, I couldn’t walk, sleep and FORGET about urinating. I wouldn’t wish that pain on anyone, EVER.
    I was started on an antiviral and waited for him to get home to tell him. When I finally DID see him, I asked him if he’s ever been tested for STI’s He said yes and he’s ‘clean’. I excused myself to use the restroom (which was still extremely painful) and for some reason, something told me to look in his travel shaving kit; it was there where I found his prescription for Zovirax. I asked him about it and he said That he “just gets cold sores and they’re not ‘Herpes’ and how I got MINE is my OWN DIRTY BUSINESS”. He then proceeded to tell me that he’d disclosed to me that he got cold sores ( which he’d never done) and that ‘asymptomatic shedding’ is a myth and that I just needed someone to blame my ‘dirty disease’ on because I snooped thru his things and found ‘mouth medication’. Needless to say, I dismissed him from the boyfriend position immediately.
    I sit silent now a days while I listen to people (mostly men) talking about ‘dirty sluts’ and ‘whores’ and their ‘herps’ … I try to educate people on the statistics and transmission but they just walk thru life with blinders on. A man I work with who just last WEEK had 2 cold sores on his lip was talking about ‘dirty girls and their nasty diseases’ when I mentioned to him that he, himself has HSV looked at me with straight disbelief and said that “cold sores aren’t herpes and they’re curable”…. His face when I told him that they ARE and they’re NOT was priceless. And when people say to me “Well you know so much about it you HAVE to have it” I have nothing but to shake my head and worry that THIS is what society has lowered itself to. Shaming people for things that they have absolutely ZERO control over. I wasn’t given a choice. Most people aren’t.
    Thank you for speaking so openly about this with others, Thank you for letting people see that It’s not something to be ashamed of. I’m fully aware of what I have and I’m not damaged. I’m not broken. None of us are.

  14. I wanted to thank you for this, and for your blog, which I just discovered. I was infected with HSV-2 in 2010, and it has been a lonely experience – the only person I know who has it is the woman who gave it to me, and given the way that whole thing went down (she neglected to disclose prior to us being intimate, and then lied about it when I told her that a doctor had confirmed my first outbreak and that maybe she should get tested, before confessing six months later), she’s not someone I really fell comfortable conversing about this with. I know there are forums and stuff online, and I’m *sure* some of my friends have it (statistics don’t lie, right?), but I just can’t bring myself to be as open about it as you are. And while my now-girlfriend (to whom I did disclose, and who doesn’t have it) is understanding about it and will listen, she’s also still a little freaked about the possibility of getting it (mostly because of the complications it can cause in childbirth) and can’t really commiserate given that she remains HSV-free.

    Anyway. It’s good to know there are people out there helping to remove the stigma, so maybe I won’t have to feel this way in the future. Thank you, again.

  15. Thank you for this work that you do, and this talk in particular.

    I was struck, listening to you, about the ways that this “brave” thing feels so much like the ableism I know so well, two pieces of it in particular.

    It sounds like supercrip stories, this focus on how brave you are, on making you into a superhero for leading your life and being upfront about having herpes. My favorite piece about supercrip narratives is by Eli Clare, in his book Exile and Pride. (PDF of that chapter here: http://courses.washington.edu/intro2ds/Readings/8_Clare-mountain.pdf) In it, he says about supercrip narratives: “They focus on disabled people “overcoming” our disabilities. They reinforce the superiority of the nondisabled body and mind. They turn individual disabled people, who are simply leading their lives, into symbols of inspiration.”

    It also reminds me of this essay in Pushing the Limits: Disabled Dykes Produce Culture, an essay that really broke things open for me in my analysis of ableism on an interpersonal level. Shemaya Mountain Laurel writes in “Things I Hear Too Many Times (Speaking of Fear)” about how people frequently tell her that she is *so strong*, that they can’t imagine surviving the chronic illness that she lives with every day. She points out, very eloquently, the ways that this kind of statement is about putting up a wall between the speaker and her, out of fear, and a desperate clinging to the idea that it could not happen to them.

    This bravery narrative, it mostly feels like a way to distance, and for me that’s what often hurts the most about it. Thanks for talking about it in your talk.

    • This is really thought-provoking! I’ll have to check both of those essays out. There’s a similar theme of inspiration porn in how people talk about lived experience of bodies that are somehow “less,” and while herpes has hardly been physically challenging for me, the ~so strong~ message is minimizing and frustrating. I’m interested in learning more about ableism and narratives of disability, I suspect there’s a lot of interesting overlap.

      • I have had herpes for almost eight years, and just recently i found out that one of my previous sexual partners was going around town telling people. This completely crushed me, made me so angry and extremely anxious. After watching your Ted talk,I felt so much better. You pretty much just reiterated things I already knew, but so eloquently so. You are amazing, I love you.

  16. I, too, have called you brave recently when I tweeted about you. Not in a bad way but I wish I could be more like you. I’m 36 and found out through a blood test that I have herpes a little over 11 years ago. I was devastated because it was the one STI people joked about and it made me feel ashamed. I haven’t yet talked about it openly with people — which is why I find you brave because I want to do what you’ve been able to do. I have an amazing boyfriend for the past almost 7 years who when I told him was like, “So what?” He still doesn’t have herpes but his reaction and people like you have changed my life for the better. I just want to say thank you, Ella.

  17. Getting herpes at 18 was so surreal; my ex-husband and I got our first outbreak at the same time, so we had no idea who gave it to who. And ever since, its been so hard to disclose my status to new partners, even though I’ve been asymptomatic for over 10 years. It’s recently caused a potential relationship to blow up in my face, but that’s part of life. I’m glad people stew talking about it so we can actively work on de-stigmatizing it.

  18. I’m 50, I am a good person, a wonderful mother, a passionate wife.
    And I have herpes.
    And this made me cry because I’ve never been okay with it until now.
    Thank you.

    • Anita, You just broke my heart a little. I wish people could see beyond the stigma that this virus holds. Stay strong and remember how wonderful you are.

  19. Well done! Esp. the part saying: …Herpes is not the consequence of a bad decision, it is the inevitability of being a human on this planet who comes into skin contact with other human beings. Period, end of discussion…I just loved it…too many powers in it…

  20. I’m 24. I live in a small town in Texas, and when I was 19 I was diagnosed with Herpes. While I was still at the ER I could hear all of the nurses talking about me. After I reached out to recent partners to tell them they needed to be tested, the entire town soon found out and I was shamed, horribly. I had people call my friends while I was with them and make cracks about how they should bleach the toilet seat if I used their restroom. When I told one of my childhood friends, she screamed at me because she had taken a sip of my drink and I hadn’t told her yet and she ran to the bathroom to make herself puke. The whole experience destroyed me. I was ashamed and embarrassed. My OBGYN even started treating me differently. I can’t even put into words the damage all of this did to me. I was the source of so many cruel jokes. I was bullied at parties until I just stopped going anywhere. The severity of this bullshit stigma.. It stung like a bitch.

    Two weeks into dating my now husband, I told him I had herpes. I was so into him and I cried and started walking out the door because I knew he would want nothing to do with me just like all my peers had dropped me. To my surprise he reacted in a very open and non judgmental way. That saved me.

    With that being said, I am still petrified to tell anyone about my status and I often try to pretend like it was just a nasty rumor that got started. Im still ashamed and still petrified at what people around me will say. I’m still not ready to be so open about it. The HPV and pre-cervical cancer I recently found about I am not afraid to speak openly about. I just can’t bring myself to openly disclose my herpes status.

    I’m telling you this because as much as you dislike being told you are brave, as you said in the video, I want you to know that your courage is inspiring. Because of you and your being outspoken about this issue, I may actually reach a point where I have enough confidence to do the same. I can’t thank you for that.

    -Kas

    • Something similar happened to me. Though I don’t know you, I have so much love and respect for all the people on this thread. It has truly given me peace of mind.

  21. Eh hem, yep me too. I wish I would have taken the time to spell this out for newbies. Nothing worse than being a 20 something and only having pop culture as your reference for herpes. Just be honest with people, especially your partners BEFORE you have sex. People respect that and more often than not will say “me too”!

  22. I wanted to jump and cheer: “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.”

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  24. Favorite quote, “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.” Thank you Ella!

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