I was diagnosed with genital herpes at the age of 26.
By that time, I had done work as a sex educator and supported many friends through their own diagnoses, but I was still wholly unprepared for my own.
It’s one thing to empathize with someone else who’s dealing with a situation, but it’s an entirely different experience to actually be going through it yourself. And as much as I wanted to think that I was totally non-judgmental about it, my reaction when I was diagnosed told me that wasn’t the case.
Because even as someone who truly believes that STIs should be destigmatized, I’ve still internalized the messages that society sends about those of us that have them. And those messages aren’t good – and contribute to the challenges faced by those of us who are STI-positive.
People with STIs, including herpes, face discrimination, like any other marginalized group does. The ability to openly share STI status is a privilege. Many STI-positive people face harassment, judgment, or rejection for their status.
But much of this discrimination is fueled by harmful stereotypes about the kinds of people that have genital herpes. But these stereotypes are rooted in misinformation and scare tactics that are not representative of the reality that people living with genital herpes (like me) actually face.
Here are eleven.
1. It’s Not That Common
Genital herpes is one of the most common STIs in the United States.
About 1-in-5 or 1-in-6 people in the US has genital herpes.
That means that there are over 51 million Americans with it. Chances are you know someone with it, if you don’t have it yourself.
There is also a huge racial disparity, according to the most recent CDC data, with more than 40% of non-Latinx Black women diagnosed with the infection, compared to less than 20% of non-Latinx white women.
If you add the number of people who have both types of the Herpes Simplex Virus, HSV-I (which is characterized mostly by oral outbreaks, commonly referred to as cold sores) and HSV-II, the number is even higher.
What this means is that if you’re someone with genital herpes, you are absolutely not alone.
2. You’d Definitely Know If You Had It
Many people who have herpes don’t know it because not everyone that has herpes gets outbreaks. Many people are asymptomatic or have mild symptoms that could be mistaken for an ingrown hair or eczema.
One estimate puts the number of people unaware of their HSV infection at 87%. That number accounts for both HSV-I and HSV-II infections, but it’s a staggering statistic.
I was completely taken aback by my diagnosis because my symptoms looked nothing like the images that come up when you Google “herpes.” When people think of herpes, they think of blisters.
But I didn’t have blisters. I had achy skin (which I discovered was nerve pain) on my butt and labia, tingling and numbness in my vulva, and sore, achy muscles in my thighs. These are what’s called prodromal symptoms, and they’re hardly ever talked about when herpes is discussed.
With symptoms looking so different for everyone that has HSV, it’s common to not know you have it.
Furthermore, as evidenced by the racial disparity in infection mentioned above, access to testing and information is not accessible to everyone.
Having access to information about STIs, how to prevent them, and barriers to facilitate safer sex is a privilege that not everyone has, and this increases both the likelihood that someone could contract genital herpes and that they could have it and be unaware of it.
3. There Is a ‘Good’ Herpes (Oral) and a ‘Bad’ Herpes (Genital)
There’s this tendency to create a hierarchy with herpes diagnoses – that HSV-I is somehow “less bad” than HSV-II. And, I’m sorry, but that’s total crap. Here’s why.
As we’ve already talked about, there are two types of the Herpes Simplex virus: I and II. HSV-I usually affects the mouth (cold sores are usually Herpes Simplex I), and HSV-II usually affects the genitals.
However, both types can be transmitted sexually (through kissing, oral sex, or skin and genital contact). While barrier methods (like condoms or dental dams) can reduce infection, they don’t eliminate it, and it’s possible to spread the infection even when no sores are present.
And HSV-I is not limited to the mouth area, nor is HSV-II limited to the genitals. So, HSV-I can affect the genitals, and HSV-II can affect the mouth. It’s also possible to be infected with both types of the Herpes Simplex virus.
So this shame hierarchy we’ve created is a bunch of bull and we need to stop doing it.
4. Herpes Isn’t A Big Deal (Or, Conversely, That It’s a Huge Deal)
Of all the STIs to have, genital herpes, while annoying, is generally fairly harmless.
It doesn’t affect fertility, it won’t evolve into cancer, and it won’t kill you. So while it can be a literal pain in the ass, it’s not particularly dangerous.
That being said, it can be a big deal for folks who are immunocompromised. For example, if a pregnant person contracts HSV, it can be lethal for the fetus.
Or, if a pregnant person already has HSV prior to pregnancy, they might experience lengthy, chronic outbreaks during the period of their pregnancy, like I did.
5. People (Particularly Cisgender Women) Who Have HSV Must Have Slept with Lots of People
This is just wrong, right? Like, we know it’s possible for people to have slept with one (or zero) people have contract genital herpes, correct? Great.
But let’s delve deeper than that, shall we? Because this myth is rooted in sex-shaming and a whole lot of misogyny.
Because it literally shouldn’t matter if someone got herpes and had sex with one person or 100 people. When I say we need to break the stigma, I mean for everyone that has it, and not just because some people get it from their first partner.
These narratives exist in the same sphere as our ideas about survivors of sexual violence. We’ve created these non-existent “perfect victims” to determine whose assault is valid and who deserved it based on behavior they were or were not engaging in.
Similarly, we see this when it comes to talk about how “anyone” could have an STI, “even people who have only ever had sex with one person.”
There’s all this speculation about how they should have kept their legs closed or waited for marriage or used a condom. And if they did all of these things and still contracted an STI, then we should feel sorry for them. And they’re the reason that we shouldn’t judge people who have herpes – not that slut who was being slutty (pshh, serves them right, because what did they expect?).
But reproductive justice looks like being here to support someone if they have an STI. Period.
And IDGAF what the circumstances around someone contracting that STI were.
They deserve love and care and to talk about their truth without shame because they are human and they are wonderful and they have nothing to be ashamed of.
6. No One Will Ever Want to Have Sex with Someone With Herpes
Well, if this were true, there’d be a whole lot of people not having sex.
And while it’s true some people will decide not to engage in sexual activity with someone with genital herpes, it doesn’t mean that no one will.
Most people that hear a genital herpes diagnosis and balk are products of the same culture of misinformation and stigma that this article is trying to combat.
And while disclosing your HSV+ status to a prospective partner can be scary, if you know you have it, it’s not an option not to say something, even if you don’t have an outbreak.
Informed consent should be the cornerstone of every interaction, and your prospective partner has the right to make an informed decision about whether or not to engage in sexual activity with you – and that requires that person having all the information.
Sometimes just educating someone about the reality of the infection can be all it takes to make them realize that it’s okay. Sometimes, it’s not. And that’s okay, too.
If someone chooses not to have sex with you because you have genital herpes, then they aren’t worth pining over, anyway. To the right person, it won’t matter.
7. You Can’t Give Birth If You Have Herpes
While genital herpes might complicate pregnancy and childbirth to some extent, it doesn’t mean that someone with HSV cannot carry a child.
As mentioned above, it can be dangerous for a pregnant person to contract a new HSV infection. And it can make pregnant people, who are immunocompromised, susceptible to more severe outbreaks during the course of their pregnancy.
As someone who has herpes, I was terrified about pregnancy. And it did, to a large extent, make my pregnancy extremely uncomfortable in a lot of ways.
But I stayed in communication with my midwife and, eventually, we found a dosage of medication that suppressed my outbreaks. I was able to have a safe vaginal delivery for my baby.
And if I had had an outbreak during labor? I would have had a C-section and, hopefully, still successfully delivered my baby.
So while genital herpes may complicate pregnancy, the two are not incompatible.
8. Having Herpes Is Something to Feel Ashamed About
Did you know that, until the 1970s, there was no stigma associated with genital herpes?
The stigma appears to have been manufactured by a pharmaceutical company to sell their newly developed antiviral medication.
The stigma is a comparatively recent phenomenon and appears to be the direct result of a Burroughs Wellcome’s Zovirax pharmaceutical marketing campaign in the late 1970’s through mid 1980’s…
The Burroughs Wellcome advertising campaign was designed to stimulate demand for Zovirax by raising patients’ concerns about the social consequences and implications of infection and emphasizing that the drug could reduce outbreaks and transmission.”
This, combined with a 1982 TIME cover article calling herpes “the new scarlet letter,” and painting it as a consequence of “the new sexual revolution” had the effect of creating a cloud of shame around herpes diagnoses.
This cultural shift portrayed genital herpes as something dirty that happened to people that were sexually liberated. And it’s an image that we’re still fighting today.
People with genital herpes can experience feelings of anxiety, depression, and hopelessness following a diagnosis. Those feelings can be intensified for people who contracted it from a sexual assault or an affair by their partner.
And when we reinforce this shame, we’re not actually reducing the spreading of STIs. We’re making them more likely to be spread – because people are less likely to get tested or disclose their diagnosis to a potential partner for fear of being turned down.
Genital herpes is nothing to be ashamed of whether someone contracted it from their first partner or after a rape or from sex work or from their 200th partner.
9. It’s Okay to Use Herpes as a Punch Line
In the same way that rape survivors can feel shamed and isolated when they’re in the presence of someone who tells a rape joke, people with STIs can feel the same when a joke is made at their expense.
Err on the side of assuming that you’re in the room with someone who has an STI. Not only will you not have to risk offending someone, but based on statistics, it’s safe to assume that you probably are.
If you’re in the presence of someone who makes a joke about herpes or another STI, speak up and say, “Hey, that’s not funny. And joking about it could make someone who has it feel ashamed or uncomfortable.”
Or if you have genital herpes and someone makes an ignorant joke out of it, you could take a page from Ella Dawson and pipe up yourself.
She told the Washington Post, “When a real person – [someone] you know and respect – casually mentions having herpes, it stops being a punch line and starts being someone’s reality.”
10. You Need to Be Monogamous If You’re HSV+
A genital herpes diagnosis doesn’t signal the end of someone’s sex life. Just because someone has genital herpes doesn’t mean they’re relegated to only have sex with one (also HSV-positive) person for the rest of their life.
Unless, of course, that’s what they want to do!
The cornerstone of most relationships that involve non-monogamy (and all healthy relationships) is open communication. This makes conversations about STI-status easier (and more likely) to be had.
Just like any kind of dating, there will be some people who won’t want to get involved with someone who has herpes. And there will be others that won’t mind (particularly if they’re positive themselves).
But putting HSV+ people into a box is unfair, inaccurate, and contributes to stereotypes about them.
Some people with herpes are monogamous. Some aren’t. Both are equally valid.
11. It’s Justifiable to Hurt Someone If They Transmit Herpes to You
It is never okay to hurt someone, whether it’s physically, emotionally, spiritually, or verbally. If someone transmitted HSV to you, that statement is still true.
Punishing someone by spreading rumors about them or posting their status on social media is absolutely unacceptable.
Unless someone is spreading STIs with malicious intent (which is rare), shaming them is hurtful and cruel, and only contributes to the stigma that STI-positive people face.
In conclusion, I want to leave this thought from Sarit Luban here, because I cannot say it any better than she did:
If we accept one iteration of body shaming, how can we authentically resist it in its other forms? Consciously affirming the intrinsic value of all bodies – regardless of status – can break the cycle of STI-positive erasure, marginalization, and reticence that preserve the status quo.”
Britni de la Cretaz is a Feature Writer for Everyday Feminism. She is a feminist momma, community organizer, freelance writer, and recovered alcoholic living in Boston. She’s a founding member of Safe Hub Collective. Follow her on Twitter at @britnidlc. Read her articles here.