DAME talks with blogger and herpes activist Ella Dawson.
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A few days before her 21st birthday, Ella Dawson, then a junior at Wesleyan, discovered she had herpes. She told DAME that prior to her diagnosis, “I don’t think I ever thought about it much.” Now, two years later, she’s working as a social-media assistant at TED, and has become an activist around the topic, sharing her take on what life as a young woman with herpes is like on her blog—where she’s interviewed her exes about their reaction to her diagnosis—and in a recent Women’s Health essay. Her motivation to go public was to offer a new perspective and counteract some of the tired tropes she’s seen in herpes journalism.
Considering that one in six people ages 14 to 49 has genital herpes, according to the CDC, it’s a topic that deserves more detailed attention that’s informative rather than alarmist. While Dawson isn’t a sex educator, her first-person reports from the front lines are inspiring because she doesn’t gloss over or back away from the reality of a herpes outbreak, and also invites the perspectives of her former partners for the kinds of intimate conversations we rarely see in public, but can all learn from.
Dawson’s take on herpes is admirable in that’s proactive and empowered, without being Pollyannaish. For instance, she’s admitted, without the shame one might expect, that she’s had condomless sex since her diagnosis. That’s not something you hear every day. And while the quote I’m using in the title may be part of what Dawson calls “clickbait culture,” I chose it because the kinds of talks she’s having with her partners are the kinds it would behoove all of us to have, whatever our sexually transmitted infection (STI) status.
I spoke with Dawson about the gaps in sex education on campus, reducing the stigma still often associated with herpes, and how a famous line from Girls helped her come to terms with having the STI.
At Wesleyan, there’s a lot of just-get-tested campaigns, but students don’t realize that when they go in and pee in a cup in the health center, they’re only being tested for things like gonorrhea and chlamydia, which would show up in urine tests. Herpes is much more involved. It’s harder to get an accurate test if you’re not showing symptoms. You can get a blood test, but even then, you might not get a clear result. So a lot of students are under the misguided notion that they know their status when they really don’t. Not all insurance plans cover the testing, so it’s not always easy for students to go get tested, like they would probably want to. I would love to see more information available, more resources devoted to testing, and more support groups available to people getting diagnosed with STIs. Having an STI like herpes or HPV that are incurable, but relatively minor in their symptoms, is not a setback in terms of the rest of your life. But that initial diagnosis and those first few months to a year, depending on the person, are so painful and isolating. People tend to cave into themselves and tell very few people, if anyone, when they get diagnosed.
Definitely, because I myself have understood the virus so much better as time goes on. My first few disclosures were horribly done on my part. I was still so ashamed and struggling with the stigma and blaming myself. I was apologizing as I said everything: I’m sorry to tell you this, I hope you don’t think differently of me. That set it up for a negative reaction. As time went on, instead of it being a confession, it became something that was just part of a new relationship. It’s actually quite a natural segue to say, “I’m a sex writer. I write erotica. I believe in social justice and I have herpes and I write about that and that’s something I care about.” It takes the pressure off them if I frame the conversation in that way because they don’t feel they have to respond right away with more questions or with their gut reaction. I’m not putting them on the spot to decide whether or not that’s a deal breaker. They get to then go home and Google it and think about it without me staring them in the face.
Herpes has changed my sex life and my love life so much for the better. Getting diagnosed forced me to reevaluate what I wanted in relationships and who I wanted to date and what was important to me. I had been living in this hookup culture lifestyle at Wesleyan. I had enjoyed it but I’d been craving a real relationship. Herpes is such a great way to weed out jerks. It’s like the metal detector of douchebags because if somebody is scared of something so harmless, they’re just not worth your time. I have a really high bar for the people I date. Most people have risen to it amazingly. That’s not to say I’ve only had committed relationships; I’ve had casual sex since getting diagnosed, it’s just always with the conversation of: This is a reality, how do we want to handle this? Do you want to use condoms? What are you most comfortable with? What makes sense for you? When were you tested most recently? What can I tell you about the virus? It opens that gate to a conversation some people are scared of. I’ve had wonderful relationships full of communication, whether they were casual or serious, because I start the conversation and then it continues to: What are you interested in? What do you want? What scares you? How have you been hurt before? It opens people up.
I’ve seen publications that ran amazing pieces on me then share articles with really reckless, stigmatizing headlines. We live in this clickbait culture where you scare the shit out of people to get them to read your article. It plays on the worst instincts and fears in people. I work in social media, so I know the power of a grabby headline, but it is very irresponsible to tweet something that makes people scared and to reinforce the stigma. Don’t write about “this STI that might impact you and your life” because it sets up an STI as being the worst thing that could happen to you. That drives me insane. Vice did an amazing profile on herpes stigma they interviewed me for, but they ran a stock photo of a pulverized banana. That is the worst way to frame an article about herpes stigma because people see the word herpes and that graphic image. Even if it’s not actually a body part, it suggests a ruined penis ravaged by herpes, which is so not realistic. It does more damage than it undoes.
There’s this idea that herpes is super-easily spread. If you know that you have herpes and if a partner tells you they have herpes, you’re much less of a threat than somebody who has not been diagnosed because you’re more likely to understand your body and take the right precautions to keep your partner safe. Most people have a painful semi-miserable first outbreak, but my second outbreak, which I had been living in fear of for so long, was just an annoyance. I had two or three sores, I took some Valtrex and some Tylenol; it didn’t really bother me. It’s just a skin condition. I would rather have herpes than a sinus infection. I used to get so many sinus infections and I would be out for the count for two weeks.
I’ve gotten a weird influx of male attention. I’ve gotten messages saying, I would love to have sex with you. Even if you gave me herpes, it would be a gift; it would be a reminder of this wonderful person who I’ve been so lucky to meet. That is creepy; that’s sexual harassment. You should never do that to a woman on the internet. I think they misunderstand what I’m doing as me feeling insecure about having herpes when in reality my life is great. I have too many men to choose from.
I think there’s a lot of kinship and respect between the incurable STI families. Gonorrhea and chlamydia are curable, even if they can be dangerous when left untreated. It doesn’t have such an impact on your identity. It’s something that you take medication for, but it doesn’t change you in the same way unless there’s something very specific going on. With herpes and HPV I think there’s a similar shock to getting diagnosed. They are with you for life and you’re told you should always disclose to your partners. [With] HPV, the stigma, in my opinion, is different. We don’t joke about people getting HPV. We don’t use it as an insult. We don’t say, “Don’t go to Vegas; you’ll get HPV. Don’t date her; she’ll give you HPV.”
There was a full plotline on Girls about how Lena Dunham’s character gets HPV. It kind of gets forgotten as the series goes on; I wish I could see more scenes of Hannah telling her partners that she has HPV, but that’s awesome that there was a full arc of somebody getting this STI. Hannah tells one of her friends. She’s so wrought about having HPV and her friend says, “Jessa has it too. She says all adventurous women do.” As somebody who had just been recently diagnosed with herpes, seeing that scene was like a deep sigh: Oh, thank God. Herpes and HPV are different viruses, but that was my rallying cry.