What It’s Like To Live With Genital Herpes
Written By: Brianna Snyder
There’s undeniable stigma around the Herpes Simplex Virus II -- aka genital herpes -- and for people living with this diagnosis, romantic life can be difficult.
To help dispel some of that stigma, we talked to a carrier who asked us not to use her real name for privacy reasons.
Here’s our chat--lightly edited for clarity and length.
PURE HEALTHY LIVING: OK, let's start with bio and stats. What name would you like to use? And how old are you and what's your general geographic location?
KAZ: Kaz is fine. I'm 26. and I'm from Southeastern U.S.
PHL: And you have HSV 2, is that right?
PHL: So OK. Tell me the story of how you came to have it.
KAZ: It’s a great one. Prepare for it. I was dating a guy for about a year. He cheated on me--got the other girl pregnant and married her--then he broke up with me, but not before giving me HSV II for Christmas.
PHL: Wow. So he got it from her and passed it to you?
PHL: And when was this?
KAZ: Christmas 2016.
PHL: And is that how you found out? When you had that first flare-up?
KAZ: Yup, Christmas Day. Fun stuff.
PHL: Oh my god. I mean, horrible horrible horrible to have this happen to you even without the incurable STD. I'm so sorry.
KAZ: It’s alright. It is what it is and I am who I am because of it.
PHL: So did he just confess all?
KAZ: Oh no. He told me that I had given it to him, and blah blah blah. I get full panel tests every year on my birthday -- which is in October. I was clean. He did confess to the cheating--after I bought his birthday present--and he dumped me via Facebook.
PHL: And when was that?
KAZ: January/February of 2017
PHL: So had he had any outbreaks?
KAZ: Not that he knows about? Or at least not that he told me.
PHL: I'm trying to figure out what your state was after your Christmas Day breakout: Were you scared, angry, confused?
KAZ: I was angry and in pain. Aggravated a lot. I think about a month later I was over it, though. I've gone through a lot of [crappy] stuff in my life and it was one of those things where I could sit and be miserable with it or I could accept it into my identity and learn how to be me again.
PHL: That's a very good outlook. And one I think it would take me a long time to arrive at. Do you have flare-ups often? Are you on medicine?
KAZ: I take Valtrex daily. I haven't had a flare-up since May(ish) 2017 when I was super stressed out in my master's program.
PHL: What do you have your Master's in?
KAZ: I have a Master’s in marriage and family therapy.
PHL: So is that the field you work in now?
KAZ: Yup. I'm a provisionally licensed therapist
PHL: How would you say your diagnosis affects or has affected your day to day?
KAZ: I mean, there's definite hard parts to it. I've been single for a year and some change now. Which has been very, very healthy for me and extremely useful. But it's not what I want to be forever. Disclosure is always hard.
PHL: Yes, what’s your experience been with disclosure?
KAZ: It's a mixed bag. Just earlier this week I got called a "dirty whore who should just kill herself already" and then on Sunday I got to have a beautiful intellectual conversation with someone about why herpes is viewed so negatively in our society and what it really means. As for my emotional responses to it, that also varies. I mean I do get a little emotionally ripped when someone tells me to kill myself. That's never very easy to read. But I also know that fundamentally I'm an awesome person who has a lot of stuff going for her, and that this one small-minded person isn't for me and that's OK. There will be someone else who will understand. I am one of the lucky ones where my family knows and is aware--there’s no hiding the fact you had to sit on an ice pack at family Christmas Dinner. And my best friends are also super supportive of me. So when potential partners flip [out], I'm reminded by them that I am still a worthy and beautiful human.
PHL: You seem like you've achieved a very healthy mindset about it all. And I do want to talk about the stigma. Years ago I was tested for STDs and braced myself for news of herpes--I thought I might have it--and the doctor told me then that A LOT OF PEOPLE carry HSVII and never ever show signs of it. That the test for it is even inconclusive unless you're full on having an outbreak. Ever since then, I noticed that people are constantly using herpes as a punchline. And I wondered about this stat--1 out of every 6th person in the United States has genital herpes--so it's likely whenever a joke is made someone in the room might really internalize it. Have you experienced that? Have you or would you ever speak up about it? (Not that I'm suggesting you should.)
KAZ: Yes, it does bother me. And depending on the situation and the people sometimes I spout that stat and then just grin and wave my hand like, "Hey, guess who’s the lucky one!," and in some cases it has helped other friends of mine reach out and share with me that they have it or another [sexually transmitted infection]. Overall, I'm pretty liberal with divulging. It helps reduce the stigma and if people want to hate me for it, well that's their loss. I've gotten to a "I don’t give a f***" stage in my life and I just find it hard to muster the energy to be embarrassed or ashamed of it. This is a great article on HSV and the connotations we have with HSV and herpes.
PHL: Thanks! I will take a look and share it on the blog. I think I have one more question: What do you wish people knew about herpes and the experience of having it?
KAZ: To people who do have it: You have it. It isn't going anywhere any time soon. You can live with this constant weight on your shoulders and the negative words others say--and you say--to you. Or, you can choose to be proactive and live your best life. I struggle with it some days, and it definitely is hard when you have an outbreak. But you don't have to be alone in it. Share with a friend or a relative, someone you're close with. Take the burden off of yourself. Have someone in your life who can hug you when you get scared. It doesn't have to be a sexual partner to be someone who can care for you emotionally if you need it.
To people who don't have it: Y'all, listen...it’s not that scary. Plenty of people have cold sores and don't get ostracized like they have leprosy. Why is it that when it's genital it suddenly makes us untouchable and unlovable? We are simply human, living the best way we can. Most of us are very responsible if we are aware of our diagnosis. We do our best to keep others safe and educate people around it. If you don't have active symptoms and don't know you have it, it can be scary. But all of that can be prevented with contraception options. My personal stance is that I don't have time for someone who doesn't have a split second to put on a condom. Seek education on EVERYTHING not just stuff you're scared of. Find actual resources--I'm talking CDC, NCBI--random websites don't offer the best information. Ask doctors if you're really concerned. Educate yourself around things you don't know. It is only ignorance if you know something and choose not to act in an intelligent way.
What I wish people knew: it HURTS to have outbreaks. I don't think ANYONE chooses to contract HSV and it sucks when you have it. It also hurts to have hateful terms like "slut," "whore," and "dirty" thrown in your face when you're just trying to disclose and help your partner be safe. Be mindful of the words you use and for [god’s] sake, respect each other. We are all humans, we shouldn't be hating on each other half as much as we do.