What We Don’t Talk About When We Talk About Herpes

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Discussions about STI positivity are largely absent from reproductive justice conversations. To address this, The Establishment is sharing a conversation among three feminists with herpes on the aspects of their diagnosis that people don’t often talk about, including feminism, body acceptance, slut-shaming, and mental health.
Note: They recognize that this conversation is limited by their own identities and experiences and is not representative of the entirety of people’s experiences living with an STI+ identity.

On Anonymity, Stigma, & Privilege

Ella Dawson: Supporting one another emotionally as we process and heal is super important, but support communities are often the most inclined to be private and secretive because people in that space are so raw. More public activism can feel threatening, but we need that within the community, too. It’s funny — stigma scares us into feeling isolated, like we’re the only person with herpes and can’t talk about it for fear of “ruining our life.” And then that isolation reinforces the stigma because we can’t find or are too scared to create the community we need to challenge the stigma together. We feel trapped and then can trap ourselves more, making moving forward harder.

Britni de la Cretaz: Anonymity, secrecy, and fear around herpes disclosure ends up adding to the stigma. So where does that leave us, if not in a bit of a catch-22? How do we move beyond that trap? And some people may have real fears about it, like retaliation or abuse. That’s valid, and there are plenty of real, important reasons not to disclose publicly in the way that the three of us do. The fact that we are three white cis women is an important framework for this conversation. It also grants us privilege to be open about our status. It’s not a coincidence that there are very few people of color and/or trans voices in the public sphere talking about being STI+ (though there are many more in the HIV community than the herpes community). Being public like this is both a sacrifice and a luxury. But hopefully, our public work will help others by breaking down stigma on a larger scale to allow for progress and less discrimination on interpersonal levels.

Sarit Luban: Absolutely. So in thinking about how to have a multifaceted herpes community, maybe we need to better define our various goals. To me, the goal of support communities seems to be helping people with herpes accept themselves, love themselves, and lead fulfilling, happy lives. In those spaces, we talk so much about reducing stigma. But if that’s a goal, how is only talking amongst ourselves going to get us there? So when I say “define goals,” I guess I’m talking about specificity. For example, to make it more acceptable to disclose and discuss herpes openly. Or to create better conditions for people to test for herpes, to be aware of their status.

Stigma scares us into feeling isolated, and then that isolation reinforces the stigma.

Ella: At the end of the day, I think everyone needs to have a conversation about what their goals are, and what is realistic for them individually. For some, it might be to accept their diagnosis and live their life to the best of their ability. For others, it might be to fight stigma in everyday interactions, but not necessarily be public with their status. For me, I overshare constantly about living with herpes, but that also matches my personality and my privilege as a securely employed white woman living in a liberal city. And my goals are broader because I have the bandwidth for them: getting my writing about herpes to as many eyeballs as possible, pushing for better dialogue with doctors, and so on. Everyone can find their own way of fighting stigma, whether it’s personal or more political and public. What we do requires a lot of sacrifice, and I’ll never demand other people make it too. But there’s a lot to gain from pushing for change if you can afford to.

On The Intersection Of STIs & The Body Acceptance Movement

Sarit: There’s so much room for creativity around how to tackle these issues from multiple angles. STI stigma is a form of marginalization. It is silencing and creates a body hierarchy, and it is so closely tied to slut-shaming, to misogyny, to ideas of what is a valid body, what is valid sex. This is a weird thing to conceptualize, though, because my herpes is invisible to people until I tell them all about it.

Britni: In that way, it’s similar to rape jokes, in the fact that you never know who is a survivor and statistically, many people are likely to be. But back to this idea of valid bodies, that also connects to the body positivity movement, or body acceptance movement. While body acceptance predominantly focuses on sizeism and sometimes (though not enough) on ableism, STI+ people are not included in that movement or conversation, maybe because, like mentioned above, our condition is mostly invisible. But we do face shame about our bodies, and receive messages that they are damaged or dirty or wrong. But also maybe because of the slut-shaming and victim-blaming and stigma around our condition, it makes it less likely to be addressed or included in the movement, too. It’s sort of seen as something we brought on ourselves.

STI stigma is a form of marginalization. It is silencing.

Ella: And getting diagnosed or having an initial outbreak can create a tremendous rift between an individual and their body, which is how the body positivity movement can be so helpful to people with STIs. Then the route to healing isn’t just finding a willing partner, it’s more about loving yourself (not to sound cliché).

Sarit: That’s something really valuable about framing STIs within a body positivity context: It doesn’t have to do with sex.

Why The ‘STI+ People Are Still Fuckable’ Narrative Is Fucked Up

Britni: This narrative that you, too, can find a partner who loves you despite your herpes as the reason you shouldn’t feel bad about it, or to give you hope, is super problematic. Not everyone wants a partner, not everyone has (or wants to have) sex, and that’s not where our worth and value should come from.

Ella: There’s a place for the story of “and this is how I found my way back to my sexuality and learned to feel desire and be desirable” again, but too often we’re not even getting that. We’re getting this PG romantic comedy about a man’s love being the only redeeming event. It’s all so heteronormative. God forbid you’re someone who doesn’t fall within cishet relationship patterns. Don’t even get me started on this. And yet, it’s amazing how quickly people go from, “You’re such an inspiration for being comfortable with your herpes!” to “Why are you such an attention-grabbing whore writing about your sex life?” We’re seen as not having learned our lesson if we continue to have the sex life we want, because obviously getting an STI was a consequence to our actions and we should know better now.

Sarit: It’s funny that finding a man (there’s that heteronormativity again) who accepts you is supposed to be the end of the story, but then nobody wants details — a lot of people are uncomfortable the second you start talking about all the sex you have with that man. It gets back to how unhelpful it is when we can only understand STIs through sexuality. Anytime we see special expectations placed on people with STIs (to be safer, to be more informed, to be more responsible) I think we need to take a step back and ask, why? Why aren’t we making these same demands of people who are (or think they are) STI-negative? Especially when you consider that the majority of STIs are transmitted by people who don’t know they’re infected.

On Non-Monogamy & STIs

Ella: I’ve been in one long-term monogamous relationship since getting diagnosed, and an even longer casual/open relationship. I’ve had one-night stands and hookups and flings, you name it. When I talk about that, people are stunned. Either they accidentally slut-shame me by implying that’s how I must have gotten herpes in the first place, or they’re shocked someone would “risk” having sex with me if it’s a one-night stand and they’re not invested in me as a person (the implication being that that’s suuuch a compliment). There’s also a false conception of non-monogamy as making STI transmission more likely, when in reality someone who is exploring non-monogamy or polyamory is often more likely to get tested and communicate those results. Not to mention that disclosing one’s STI status is part of getting informed consent, at least in my opinion.

Anytime we see special expectations placed on people with STIs, we need to ask why.

Sarit: There’s this unspoken but obvious red tape around anything other than longterm monogamy for people with STIs, which I think comes from how our society’s narratives around monogamy and STIs invoke one another. Non-monogamy? Risky, you’ll get a disease. STIs? You must have been sleeping around. We already have this link in our minds, so linking them by choice makes a lot of people really uneasy. And I think for STI+ people, it can be scary because you feel like you’re perpetuating the stereotypes that are placed on you.

Ella: You face pressure to be the “respectable” person living with herpes.

On Mental Health & STIs

Ella: Getting diagnosed can be such a traumatic experience. Often you’re physically in pain or feel out of place in your own body, and you receive this litany of warnings and often judgment. Not to mention the identity crisis triggered by years of internalizing the powerful but subtle message that people with STIs are disgusting, damaged failures. I know a lot of folks who use suppressive medication for peace of mind; I did that my senior year of college, too. The intersection of herpes and anxiety, herpes and OCD, herpes and depression — there’s so much to talk about there. I know getting diagnosed with herpes made my underlying anxiety rear up and eventually get diagnosed, too. Herpes is such a catalyst for other things. It often isn’t that big a deal in isolation, but when it intersects with other issues, it becomes a trigger for so much (abuse, mental illness, traumas, etc.).

Getting diagnosed can be such a traumatic experience.

Britni: And then there are those people who contract herpes (or another STI) in the context of an abusive relationship, or a sexual assault. I hate the narrative that these “innocent victims” or “exceptions to the rule that only promiscuous people get STIs” should be the reason we de-stigmatize the illnesses, but I also think it’s so important to talk about the intersection of trauma and diagnosis. Coping with a traumatic event can be compounded by dealing with the reality of receiving a stigmatizing diagnosis as a result of that trauma.

Sarit: The mental health aspect of the herpes experience is such a big reason why I’m still talking about this virus. My purpose isn’t just to get to a place where I don’t have to think about it anymore and be happy. It’s for all of us to get there. Herpes is so much bigger than an individual issue. It’s cultural, it’s systemic.

No, But For Once — WHAT ABOUT THE MENZ?

Ella: WHERE ARE ALL THE MEN. I’ve seen a few theories floating around Tumblr about this: that women are socialized to talk about their feelings more, that female sexuality is policed more so we’re more aware of STI stigma, that the burden is on us to promote and regulate a healthy sexuality, and so on. But there are, like, no straight men talking about herpes other than Adrial Dale of Herpes Opportunity. There are also very few straight men in the sex blogging community who aren’t, like, sexist pickup artists.

Sarit: Which isn’t to say that herpes stigma doesn’t affect men, because it does. But I think there’s a lot in there about female sexuality not being seen as belonging to women or centered on women. The phrase “damaged goods” comes up frequently in herpes narratives; we’ve gotten so used to it as a metaphor, but our society truly does regard our bodies as goods. When they’re damaged, it’s a loss not to us, but to the consumers — men. And, of course, masculinity is often tied to sexual conquest. It’s interesting — I mean, there was a time when the clap came with bragging rights for men, because it meant that you were having sex. I’ve never seen anything resembling that for women. I also don’t know if the same could be said about herpes, an important difference being that gonorrhea is curable while herpes is not. But it’s still an interesting thing to think about.

I noticed that during my Gossip Girl binge-watching days. There’s a scene where Chuck and Jack banter back and forth about who’s been treated more times for gonorrhea. And it’s totally in the context of them performing masculinity via banging a lot of women. Illness is a trophy, just as the women are. Then there’s also a scene after Vanessa has sex with Chuck: She’s talking about how she has to get tested for STIs now and “blah blah I shouldn’t have slept with Chuck.” It would mean something completely different if Vanessa got an infection. But I’d love to hear men’s perspectives on this stuff. (And talking about their experiences independently, without talking over women. Or at women.)

Ella: Men, if you have herpes and you’re reading this, we would love to hear what you have to say! So please don’t email us after this, just start a blog and send us a link on Twitter.

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