How the Stigma of Herpes Has Changed My Life

We all have our “nevers.” You know, those things you would never do, feel, or be. I’ll never get married. I’ll never do drugs. I’d never get mugged. I’ll never yell at my best friend. I’ll never understand people who don’t believe in global warming. Of course, in reality, our “nevers” are nothing more than little predictions. We can’t guarantee much of anything in life, even when we feel it so deeply in our bodies that they feel like tattoos on our bones, as scary as that can be. I’m sure you can think of at least one thing that used to be a never that’s changed over the years. Here’s one of my nevers that changed just last year: I’ll never get herpes.

Actually, I’m not sure if this one counts—it was so far down my “never” list that I never even thought about it. It never crossed my mind, because it was just that unimaginable. In my mind, herpes was something dirty. It was something foreign. It was something that happened to people who were promiscuous, irresponsible, careless. And I was none of those things.

I had a terrible initial outbreak in the summer after I turned 21. When I peed, my entire vagina felt like rubbing alcohol in an open wound. At first, I thought I had a UTI, but the pain wouldn’t let up, and seemed to be happening mostly once the pee left my body and hit my labia. I felt sick and tired, like I was coming down with the flu. Two days later, I was lying on my back with my legs in the stirrups at my OB-GYN office, my doctor between my open legs. She looked around and prodded a little for a total of about 10 seconds before popping her head up. “Okay,” she said, “so we have to do some tests to be 100% certain, but I am 99% sure you have herpes.”

I literally laughed out loud. That wasn’t possible. I wasn’t the type of girl to get herpes. I had a boyfriend at the time that I was faithful to, a boyfriend who had recently been tested for STIs and come up clear. I hadn’t had sex with anyone else since I had last been tested for STIs…so where the hell had this come from?! But when my OB showed me the sores on my labia with a hand held mirror and took swabs of the sores (it really, really hurt), there was no denying it. I lay there in shock while she gave me a quick low down on herpes—Herpes simplex virus (HSV) has two types: HSV-1 and HSV-2. HSV-1 is the type that 95% of the population has, and is most commonly related to oral infections; think cold sores. HSV-2, most commonly related to genital infections, is what most people are imagining when they refer to herpes. It’s actually rather common as well. Once you get herpes, it’s there for life in your system. More often than not, it’s dormant. In fact, most people who have herpes go their entire lifetime without ever knowing they have it. She said that the swabs of the genital lesions and blood work would determine what type of herpes I had (while the location was obviously genital, you can have HSV-1 or 2 on your genitals).

When I walked out into the waiting room, my mother was waiting for me. When I saw her, I burst into tears. I couldn’t say the words to tell her what was wrong, so I just handed her the booklet, “Living with Herpes,” that the OB had given me. I was embarrassed. I was ashamed. I was confused. And I was really scared. I thought I had somehow done something wrong, and I worried that my boyfriend would be angry, even though I knew I hadn’t cheated. I told him over the phone. It didn’t go well. He screamed at me, accused me of cheating as I feared, called me a slut, and I desperately tried to explain but I felt helpless. I was still pretty confused and my super emotional state didn’t help me make sense of things. Looking back on the relationship now that it’s over, his reaction (and the fact that I never got an apology) was probably a pretty good indication of how unhealthy and shitty the relationship was, but that’s another story.

The doctor sent the swab samples and blood work to a lab; this determined that I had HSV-1 (the less severe strain), and that I had never had any type of herpes before this outbreak and that this was in fact my first outbreak. In other words, I hadn’t contracted herpes at a younger age—I had to have contracted it in the last month or so. I had to have gotten the herpes from my boyfriend.

He was re-tested and had a full panel on HSV done. His exams determined that he had had HSV-1 in his system for a long time (many people contract it as babies, and 95% of the population has HSV-1—if you’ve ever had a cold sore, welcome to the 95%). We learned that the outbreak that had infected me wasn’t his first (he had had cold sores before), and that it had come from him orally, not genitally. In a one in a million chance situation, my boyfriend had “asymptotically shed” his herpes onto my vagina while performing oral sex. In other words, he had passed the virus from his mouth, despite showing no symptoms of cold sores (if he had had a cold sore, he wouldn’t have gone down on me). The odds of such a thing happening were very, very slim. It was ultimately a freak accident that occurred due to bad timing and poor luck. I was part of a tiny percent of humans who had never had a cold sore, so no herpes was anywhere in my system, making me more susceptible to contracting HSV in any location; he happened to perform oral sex while having an outbreak but not showing any visible cold sores and he passed his herpes along to me anyways, but to the much less convenient location.

To be honest, having herpes hasn’t been all that bad—physically.  That first outbreak was the pits, but I haven’t had a single outbreak since. In fact, I haven’t exhibited a single symptom of herpes. In a way, I’m lucky, because while it’s undeniably shittier to have HSV-1 in a genital location than an oral location, it’s tends to be a lot better than HSV-2. HSV-2 tends to cause more frequent and severe outbreaks, and the probability of passing it on to others is much greater. In part, I may have the pills I take every day to thank, because they reduce frequency and severity of outbreaks (plus, they decrease your odds of passing on your herpes).

In reality, herpes affects my life in all the psychological ways that we don’t talk about. The stigma and stereotypes associated with herpes are incredibly powerful and prevalent: promiscuity, infidelity, irresponsibility, dirtiness. In particularly insensitive terms, “only sluts get herpes.” And unfortunately, these stigmas come from an over-blown misconception of the illness, as opposed to the reality of herpes. So having herpes causes me a lot of insecurity. As much as I know I have nothing to be ashamed of, and that it’s just the stigma talking, I do feel shame. I feel dirtier. I feel the need to explain and justify myself to people, like I need future potential sex partners to know that I got herpes from my at-the-time boyfriend, not some random hook-up or a guy I didn’t know.  And because of the stigma, telling a potential partner takes a huge emotional toll and causes tons of anxiety.

Ever since the day I was diagnosed and the subsequent days of research, my sex life was changed forever. I realized that having sex would never, ever be the same. I could never again have casual sex. I could never have sex without first having the Herpes Conversation. And thinking about having that conversation is a big mental strain and stressor. Do I need to tell a potential sexual partner before we engage in oral sex? Vaginal sex? What does it mean if I don’t tell them? While the chances of me giving someone else herpes are super slim, particularly when using a condom or if they have oral HSV-1 in their system, the risk remains, and it feels kind of immoral to not share this risk with a sexual partner. So now, from the moment I get interested in a guy, or feel a potential of getting together with him, herpes pops into my head. Literally every single time. I visualize the conversation of telling him I have herpes. I try to imagine how he would react. And then I try to weigh it mentally—is it worth the awkwardness and him knowing (and maybe telling other people) just to have what might ultimately be “meaningless” sex? There are few things less sexy than saying “I have herpes.” Or would it be better to just abstain from hooking up altogether so that I don’t have to risk eventually sharing this secret thing with others that I’m embarrassed about?

The first boy I told about my herpes responded pretty much exactly as I expected every boy to from that point forward. He’s a kind guy, and was a friend, so he was as sensitive as he could be, but I saw the panic light up in his eyes the moment the word “herpes” came out of my mouth. Even when I explained how I got it, and how slim the chances were of me passing it on, I could see his nerves were not calmed. He asked if there was any way he could’ve gotten it from the innocent making out or touching we had engaged in at that point. In the kindest way possible, he told me he didn’t feel comfortable carrying on with a relationship. I, of course, didn’t blame him. He reacted the way I probably would have in reversed roles. In his head, herpes was this big scary dirty thing that he couldn’t fully explain the transmission of, but something he knew he didn’t want nonetheless. Just like it had been to me a few months earlier. Nonetheless, I was hurt and embarrassed, and I couldn’t dissociate the rejection of my herpes with a rejection of myself.

Fortunately, the second boy I told had a much better response. It was months later, and while we were hooking up, things got heated, so I stopped us before it went any further. My heart was racing when I told him—I could only see the first boy’s face in my head. When I told this guy, I basically just spit out all the information in one big rant: here’s how I got it, if you have ever had a cold sore your chances of getting it are slimmer, condoms lower the risk too, I’m on meds, etc. I couldn’t look him in the eye the whole time I spoke. When I finally finished, he was quiet for a second, and then he said, “Wow. I’m so sorry. That sucks.” He sympathized. But he also shrugged and said, “Well, I’ve had cold sores, so that means I probably won’t get anything genitally, right?” He was right. “It doesn’t matter to me,” he said, “and it doesn’t change anything. I still think you’re just as sexy as I did five minutes ago. Do you have more to say about it?”

Not resenting my ex has been one of the hardest parts of having herpes. I’d love to say that I’m a big enough person, a mature enough person, to not hold it against him, but I’d be lying. While I know it’s not his fault in the sense that he had no idea and never would have given me herpes intentionally, or even acted the same if he had had a better awareness of how it could spread, it’s still his fault. His lips put the virus on my genitals. I will literally carry that virus with me until the day I die. My ex-boyfriend never has to think about herpes, or the fact that he has it—along with the majority of people who have had cold sores. He gets to have sex whenever he wants. He can choose a condom, or he can opt out. The chances that he will give it to someone else again, particularly genitally, are very, very slim. He never has to have that awkward conversation or face those stigmas. I’m the one who has to pay for and take one more pill every day. I have to worry about increased odds of contacting HIV. I have to worry about how this will affect my fertility and future pregnancies. I have to feel that pit of awkwardness and embarrassment in my stomach whenever someone unknowingly makes a joke or insensitive comment about herpes in front of me, not to mention mainstream media (The Hangover, anyone?). I have to worry about having that awkward conversation with my next hook-up. The way herpes has changed my life while leaving his untouched makes me feel bitter and resentful. It makes me angry to know my ex doesn’t even feel guilty, because he’ll never really understand the full extent to which it affects me.

So at the end of the day, it’s the stigmas of herpes that cause me the most pain. And I know that the stigmas will remain as long as what I consider to be the root of the problem remains unresolved: the large societal taboo on sex and the unfair standards we put on women. Is it a coincidence that people aren’t ashamed to share the fact that they have cold sores with others, but keep a genital herpes diagnosis to themselves? I think not. Cold sores are not sexualized, in part for good reason, because transmission is often not sexual at all, and therefore, they are not stigmatized. People do not think of or refer to cold stores as herpes.

I hope that our perspectives on sex and sexuality shift in the future so that herpes is no longer something people feel they have to keep secret. I hope that sex-education expands to include the more difficult discussions like this one so that people are less ignorant, therein decreases the stigma and misconceptions. I hope that someday I will be able to own my herpes with acceptance and confidence, instead of shying away from adding my name to this article. I hope that I will be able to look back on that ex-boyfriend and think about my herpes without feeling blameful. I hope that this rambling piece of my thoughts will spread some knowledge about what herpes really is, even if it’s only to a few people, and make them reconsider an insensitive joke about STIs. And I hope that other girls who have felt similar things will read this and feel validated, and know that they are not alone.

PS: If you want to learn more about herpes, this is a great place to get a simple but detailed breakdown.