What it’s really like to have genital herpes and why it isn’t as bad as you think

Two Australians share their stories of living with the STI.

Genital herpes is perhaps the most maligned sexually transmitted infection (STI). If you glean all your information about it from its misrepresentation in popular culture, you likely don’t know much about it except that it’s the ‘bad’ STI – the one you really don’t want to get.

I knew next to nothing about genital herpes until someone I knew contracted it. It was only then that I began to understand how pervasive (and damaging) the stigma surrounding it is. The immense fear many people have of contracting it, combined with a lack of knowledge about how it’s contracted and what it’s actually like to live with, means it’s often treated as a taboo topic.

For more sexual health content, head on over to our Life section.

But let’s back it up a little. Genital herpes can be caused by two types of the same virus: herpes simplex virus type 1 (HSV-1) and herpes simplex virus type 2 (HSV-2). HSV-1 is predominantly transmitted through oral-to-oral contact and generally causes oral herpes (which many of us know as cold sores), but, unbeknownst to many people, it can also cause genital herpes.

HSV-2, on the other hand, is a sexually transmitted infection that causes genital herpes. Herpes is common – it’s estimated that 3.7 billion people under age 50 have HSV-1 globally, while 491 million people aged 15 to 49 have HSV-2.

Yet despite these numbers, it’s an STI that seems to strike fear into the hearts of most sexually active people. But even if no one has ever told you they have genital herpes, you most likely know people who have the virus, whether they’re aware of it or not.

Genital herpes can be passed on even if you use protection. People with asymptomatic HSV-2 (who often aren’t even aware they have the virus as they’ve never had any of the symptoms) can pass it on to someone through a process called ‘viral shedding’. Essentially, you yourself could have the virus right now without even knowing.

I don’t say that to scare you, but to highlight how ludicrous our attitude towards this STI is. The stigma surrounding it is incredibly alarmist and unkind – it paints a genital herpes diagnosis as the worst thing that can happen to a sexually liberated person.

But here’s the thing. It’s not in any way a serious health threat. You can live a perfectly normal life, with wonderfully fulfilling sexual and romantic experiences and partnerships, whether or not you have genital herpes.

Yet despite these cold hard facts, the stigma still persists, as do the feelings of shame, guilt, anxiety and depression that can accompany a diagnosis. In an attempt to change our perception of this STI, I reached out to two women in their twenties who have it, to get their take on it.

Lily*, 27

What did you know/think about genital herpes before you received your diagnosis?

Honestly, I didn’t even think about it. There was never a lesson in high school. I moved away from home at a young age, and I largely ignored my mother’s advice and I don’t have the wisdom of older siblings. In my early twenties, I was in a long-term relationship and had the luxury of life with a partner where STIs were not an issue.

In my mid-twenties I recklessly entered the world of Hinge dating without a care about safe sex (I am ashamed to say that in hindsight). I absolutely had an unconscious attitude that it couldn’t and wouldn’t happen to me.

Talk me through the day you received your diagnosis. How did it feel and how did you believe it would alter your life?

My diagnosis wasn’t a single day, it was a process. I knew there was potential for a diagnosis because my now-partner had experienced herpes symptoms. I didn’t have symptoms, but that kicked my butt to go get a general STI check with my GP. Turns out I had HPV and MG (and that’s another story).

Because I had been the lax one out of us and not been getting tested/doing the safe-sex thing, it was likely me who passed on a virus that was dormant in me. I didn’t actually get my first physical outbreak of herpes till months later during a period when I was super, super stressed and run down. Then it was a confirmed case of HSV-2.

I felt guilt the most – guilty that I had been blissfully asymptomatic and especially guilty that I passed it on to someone who experiences it worse than me (my partner now takes daily herpes medication whereas I only feel an outbreak coming on when I’m super stressed or run down, and can usually catch it early). It was honestly a massive reality check about responsibility and how my behaviour and choices impact others, and that I needed to take control of my sexual health. Even if once upon a time someone else had passed it to me, I needed to get smarter about not passing it to others.

What’s it been like discussing your diagnosis with sexual partners and/or friends?

I am very okay with discussing and over-sharing it with friends. I have no issue saying “Eurgh, I’m so run down I have another herpes outbreak wah” or joking “Omg, you’re stressing me out you’re going to give me herpes again”. I’m also lucky to be in a relationship where communication with my partner is very open aka “Sorry we can’t have sex tonight, I have an outbreak lol”. It shouldn’t be a big issue.

What would you want someone who’s just been diagnosed to know?

It sounds like everyone experiences it differently, so work out what your own personal triggers are. Don’t ignore it! In a positive spin, I am so much more in tune with my body and how it’s feeling now, than I was before my diagnosis. Also, it’s actually really common so you are NOT alone.

What would you like others who haven’t experienced genital herpes to know?

If people react badly/negatively to my STI history, it’s telling of the kind of person they are and it’s definitely a red flag for me. But it’s hot when people are sensitive and don’t judge.

@pickeringfitness♬ original sound – Christopher 👋

Adie*, 28

What did you know/think about genital herpes before you received your diagnosis?

Before being diagnosed, I hadn’t put any thought into what herpes was at all, other than the idea that of all the STIs to get, that was ‘the bad one’ because you couldn’t make it go away (this is aside from HIV). I didn’t know anyone with it [and] hadn’t heard of any friends of friends with it either, so it wasn’t on my radar and I assumed almost no one had it. 

Talk me through the day you received your diagnosis. How did it feel and how did you believe it would alter your life?

The diagnosis didn’t come as a shock as I had been expecting it. This is because a week prior, my boyfriend at the time had just been diagnosed. He was my first long-term boyfriend and it felt like such a slap in the face to have gone through my early twenties recklessly sleeping with people without protection – with no thought to the consequences – and being lucky enough to not contract any form of STIs.

Fast-forward nine months into my first relationship and my boyfriend is sitting in my room crying, telling me he’s just been diagnosed with type-one herpes, and I felt sick at the thought of having to navigate this in our relationship. A few days later, I had my first outbreak and went straight to the doctor knowing what the outcome was going to be.

Thankfully, we stayed together for another year and a half and helped each other through the initial experience. But once I became single, that’s when the idea hit that this was really going to affect my dating/sex life from now on. I assumed I would never be able to have a one-night stand again and I’d never be able to find anyone who’d want to date me, short-term or long-term. 

What’s it been like discussing your diagnosis with sexual partners and/or friends?

Discussing this with sexual partners has been surprisingly easy. Everyone has been super understanding/relaxed about it. It’s definitely still nerve-racking bringing it up at what you hope feels like the right time, in the right way.

It’s a weird balancing act between warning the person and clearly outlining what it means, but also hoping to not scare them off. For the record, I’ve never had anyone choose to not sleep with me after I’ve told them, which has helped a lot with my confidence in bringing up the convo. 

How has the stigma surrounding genital herpes impacted you and your life?

The hardest part has definitely been having to engage in conversations with friends who don’t know I have herpes, who are having a freak-out themselves over the idea of contracting it. As much as I can try to comfort someone without telling them my experience, it’s really easy to feel shit about having herpes when someone is going on about how awful it would be if they contracted it. It has also meant that I’ve only chosen to tell a handful of my closest friends, as I’ve been terrified that if it were common knowledge, it would impact my dating life.

What would you want someone who’s just been diagnosed to know?

The whole situation is not nearly as much of a big deal as you initially think it is. The idea of having to tell a sexual partner about it before having sex is definitely completely terrifying at first, but once you open the convo you feel so much better than not telling the person (admittedly once I had a one night stand in Europe and didn’t disclose this and I couldn’t deal with the guilt, so I’ve found it much easier to just chat about it openly). 

What would you like others who haven’t experienced genital herpes to know?

Obviously, everyone’s outbreaks are going to be very different experiences, but mine personally have been so mild that it’s barely noticeable. So for me personally, the stigma is by far the hardest aspect of it compared with living with the recurring outbreaks. Statistically, we all know a lot of people with herpes but no one chooses to talk about it, so it still feels like a very taboo subject.

*Names have been changed

For more information on genital herpes, head here.