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. I shocked myself the first few times I used the word publicly in reference to my own body. But I’ve changed how I think and talk about a lot of things in the past year thanks to a great therapist, a thriving queer community, and, as you may have already guessed, thanks to herpes.

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. HSV-2 is more commonly known as genital herpes. Unfortunately, the terms “oral herpes” and “genital herpes” have created some popular misunderstandings of the 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, so it becomes a Big Deal. And because it is a Big Deal, one feels the need to talk about and to process this life-altering thing that makes you feel untouchable, undesirable, unloveable. Feeling unable to tell friends, potential partners, and other community members just 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 are so painful. Those of us who know our status suffering in silence; meanwhile, most of the world is walking around with the exact same virus and simply doesn’t know it. 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 good discourse on herpes, I thought I would reflect upon my last year by providing some notes to my past self. These are things I wish someone had said to me when I was first diagnosed, and I hope that they can create a little more positive dialogue around this issue for everyone’s sake.

Notes on herpes:

  1. Herpes will improve your understanding of the nuances of consent, and especially informed and enthusiastic consent. It will make consent into 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 dating life was an absolute train wreck prior to my diagnosis, and I often found myself in situations where my own consent was coerced. Herpes often scares off people you probably shouldn’t be sleeping with anyway, and that is a good thing. Case in point: If someone is too uncomfortable to even sit through an STI disclosure conversation, they’re too immature for you to have sex with. If they’re unwilling to have a conversation about safer sex, you shouldn’t be diddling or dawdling anything with them anyway.
  3. You’re not asking someone to make some huge sacrifice by having sex with you just because you have herpes. Statistically, pretty much anyone who has sex with multiple partners has probably had sex with someone who has HSV and just didn’t know it. People are uncomfortable with known risks and even if they constantly take unknown risks. Obviously anyone has a right to say no on the basis of a disclosure, and shouldn’t feel forced to say yes out of obligation to not be “problematic.” If someone says “no” to you after a herpes disclosure even though they often say “yes” to others without practicing disclosure conversations or testing, then that reflects poorly upon their sexual practices and not upon yours. 
  4. Don’t feel the need to rationalize how herpes isn’t a big deal with all the science stuff or by stressing that you’re asymptomatic. It’s good to correct misconceptions, but it’s also important to remember that making yourself feel better about herpes by insisting it isn’t a big deal at all can be marginalizing for those who have regular or severe outbreaks. It’s great that it’s not a big deal for your body or for most peoples’ bodies, but it is a bigger deal for some people and you need to be respectful of that.
  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’s current condition. 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 :)