It’s been three months since I found out that I have herpes, and in that timeframe I’ve learned that herpes is remarkably unremarkable. I don’t know if I got it as a child or as an adult, but I suspect it was shortly before the diagnosis. I’ve had no blatantly noticeable symptons, so at this point, I don’t know if it’s genital or oral. I don’t know if I’ll ever get an outbreak. But none of that really matters, because the worst part about having herpes isn’t herpes itself, but rather the heavy stigma that comes with it, at least in the United States.
It’s an extremely common infection worldwide, per the World Health Organization, but the majority of people that have it don’t know they have it. That’s because most people with herpes never have any noticeable symptons, and the Centers for Disease Control and Prevention advocates against including it in standard STD testing without symptons since the negatives of knowing you have it tend to outweigh the positives.
The people that do know they have it tend to avoid talking about it because the stigma can be so crushing.
Since the overwhelming majority of people either don’t know they have herpes or are unable to talk about it, it’s easy to go most of your life without ever learning anything about the infection except for a few common misconceptions. And that lack of information can make it extremely difficult to cope after learning that you have herpes.
Here are the biggest challenges I’ve faced in the last 3 months since my diagnosis.
Overcoming the stigma
When you find out that you have herpes, it’s easy to go down a rabbit hole of negative thoughts and emotions. The sooner that you can internalize that it doesn’t change who you are, it isn’t the end of your romantic life, and it is remarkably unremarkable, the better.
I found that the best way to do this was learning as much as I could about it, reading other people’s accounts of living with herpes, and finding people that you feel comfortable talking to about it.
One major warning though: if you look up photos of herpes outbreaks on the internet, you will find the absolute worst case scenarios. It’s impossible to know what it will be like until it happens, so save yourself that anxiety.
Here are some things I’d recommend starting with. These are just a few of the online resources that I found most helpful, but there are a lot of others that you can find.
- CDC and WHO resources
- Westover Heights Clinic Herpes Handbook
- Ella Dawson’s TEDx talk on herpes
- Emily Depasse’s various articles and blog posts on living with herpes - some good informed information here. Emily is actually studying about this stuff
- Ella Dawson’s various articles and blog posts on living with herpes - Ella inadvertently became the “face” of the movement to destigmatize herpes a few years ago and has since stepped away from that role a bit, but all of her writings are still available. This was easily the most helpful thing for me during the hardest weekend post diagnosis. I sheepishly sent her a thank you message on Twitter when I was done.
thanks, Orlando!— ella dawson (@brosandprose) October 23, 2017
Telling other people
Ultimately, you have to decide who you are going to tell and when. There’s a lot of debate about disclosure from what I’ve read online, with some people advocating for and some people advocating against. I decided pretty early on that I wanted to be open about my status in every aspect of my life, but only after I’d had a chance to tell everyone in my family about it.
I quickly found that telling other people that you have herpes is hard, but it gets much, much easier every time that you do it. The first time that I heard the words come out of my mouth, vocalizing something that I’d been grappling with, left me a bit numb but also provided an immense amount of relief. And per the stats about how common it is, most of the folks I’ve told have either told me that they have herpes or mentioned that they know someone that has it. I’ve only just started to learn that that some of my closest friends are also in this super secret club.
One of the hardest times for me was when I told my parents. The conversation itself was actually easy, and they were wonderful about it, but all of the time I put into thinking about whether or not to tell them (overwhelming consensus was that I shouldn’t), the best way to bring it up, and what to say before hand was brutal. I’d like to say that I was super confident as I went through my semi-rehearsed lines, but there were a few times that I felt my voice wavering. But like all of the other times, it was an important part of helping me get past the stigma.
The first time you get rejected because of herpes
I was actually starting to see someone that I was extremely excited about when I got my diagnosis. We were taking our time, just starting to get to know each other over the course of a few dates, and everything was going swimmingly. As soon as I found out my status, I sent her a message letting her know and assuring her that I completely understood if she didn’t want to move forward at that point. I never heard back from her, and although I was expecting it, I’m not going to lie…that was a painful experience.
You are probably going to run into the same thing, and if you do, it helps to remember that people are rejecting the risk of getting herpes, not you. The same way that you may have some criteria that you use to decide when you are going to swipe left on someone, for a lot of people, herpes will fall into that bucket. And there is absolutely nothing wrong with that. But there are also a lot of people that won’t care. They’ll decide that you are worth it.
So it’s basically still dating. You are putting yourself out there. Sometimes you’ll get rejected because of X, Y, or Z, and other times, you’ll find someone special. Never know until you try.
A few parting words
If you stumbled onto this blog because you are trying to make sense of a recent herpes diagnosis, I promise you that no matter what you are feeling, you will bounce back, and it will get better. Humans are incredibly good at returning to their predetermined happiness level after positive and negative events. And if you want to look for actions you can take to help cope with it, meditation, therapy, and talking to others are all great things to try.