Here's What I Wish Someone Had Said To Me When I Was First Diagnosed With Herpes

by Anonymous

A little over a year ago, I was diagnosed with herpes. You can take a minute to feel shocked if you need to. I have discovered that most people find it very shocking when I openly talk about the h-word.

The first few times I used the word publicly in reference to my own body, I shocked myself. But I’ve shifted how I think and talk about STI transmission in the past year thanks to a great therapist, a thriving queer community, and, more information on my diagnosis.

The thing about getting herpes is that you’re not supposed to talk about getting herpes, especially if you have HSV-2 like I do. There's a lot of stigma as a result of rampant herpes misinformation.

HSV-2 is more commonly known as genital herpes. Unfortunately, the terms “oral herpes” and “genital herpes” have created some popular misunderstandings of HSV-1 and HSV-2. Although it is uncommon for HSV-2 to cause oral herpes, either strain can affect any orifice of the body. The WHO estimated in 2016 that some 192 million people under the age of 50 have gential HSV-1, which is most often passed from the mouth to the gentials through oral sex. 

The widespread misinformation about herpes seems like a pretty massive public health failure when we consider the fact that the WHO estimates suggest around two-thirds of people globally have at least one strain. Up to 90% of people with genital herpes don’t know their status. As with most STIs, people with vaginas are generally at higher risk; around 1 in 5 have genital herpes, compared to 1 in 9 people with penises.

Given that herpes has been around since before we were even a species—yes, herpes literally affected early humanoids about 1.6 million years ago before we evolved into humans—it seems like we should all know more about it by this point.

It wouldn’t be such a big deal if we just talked about it. But we don’t talk about it. And because of that, the stigma that comes with a herpes diagnosis can feel unbearable. It renders so many people too afraid to tell their friends, potential partners, and other community members, which just further compounds feelings of shame, loneliness, and rejection.

One study incredibly suggested that some people experience grief comparable to a cancer diagnosis following a herpes diagnosis because the stigma is so painful. Those of us who know our status suffer in silence; meanwhile, there are a lot of people with the exact same virus but who are simply asymptomatic and unaware. The herpes virus is so common that it isn’t included in most routine STI panels; the CDC’s official guidelines instruct doctors to only test if you have symptoms. For asymptomatic people, there are antibody tests to see if you’re a carrier, but they can’t reveal when you became one.

So, given the fact that it’s shockingly difficult to find neutral discussions around herpes, I thought I would reflect upon my last year by providing some notes to my past self.

Here's what I wish someone had said to me when I was first diagnosed:

  1. Herpes will improve your understanding of the nuances of consent, and especially informed and enthusiastic consent. It will make consent a bigger priority in your life. That is a good thing.
  2. Herpes can help you set better boundaries and expectations for your partners. My diagnosis often scares off people who are sex-negative and unwilling to learn the reality of herpes. That is a good thing! After all, if someone is too uncomfortable to even sit through an STI disclosure conversation, they’re too immature for me to have sex with anyway.
  3. You’re not asking your sexual partners to make some huge sacrifice just because you have herpes. Statistically, pretty much anyone who has had sex with more than one partner has probably had sex with someone who has HSV, they just didn’t know it. People are simply uncomfortable with known risks even if they constantly take unknown risks. Obviously, anyone has a right to say no on the basis of a disclosure, and no one should feel forced to say yes out of obligation to not be “problematic.” But someone saying yes shouldn't hold that decision over your head.
  4. Don’t overemphasize asymptomatic herpes. It’s good to correct misconceptions, but making yourself feel better about your herpes diagnosis by focusing on your lack of symptoms can be marginalizing for those who have regular or severe outbreaks.
  5. Find community! There are tons of amazing social media pages working on STI positivity and herpes advocacy, and being in dialogue with others on the path towards sexual liberation will make your life fuller. Most importantly, it’ll give you judgement-free space to process.
  6. Seek pleasure. A diagnosis isn’t a death sentence, nor is it the end of your erotic relationships with yourself and others. It’s okay that sex might look differently for you depending upon your partner and your body. It’s okay that you might not have as much casual sex, or if you decide to take a break from sex altogether. It’s okay that some people won’t want to have sex with you. There are a lot of people who won’t even consider it to be a nuance, let alone a deal-breaker.
  7. If all else fails, you can always have fantastic sex with yourself. :)
Honeyland Author

Venus O’Hara is an internationally renowned sexpert who specialises in sex toy reviews, product design and user education. She has tested over 700 sex toys since 2013 and is on a mission to raise orgasmic awareness. When she’s not writing about sex toys or designing them, she can usually be found on her unmade bed, testing the latest adult novelty. You can follow Venus on Twitter and Instagram.