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An illustration of a man self-checking for herpesBBC Three / David Weller

Living (and dating) with herpes

“I thought it was the end of my life as I knew it…”

Writer wishes to remain anonymous

I'm not religious at all, I'd describe myself as an atheist, but when aged 21 I started getting sores around my penis, I must have prayed 50 times a day that it would be something other than herpes.

I felt such shame and I think that's due to the fact no one seems to talk about it. It's strange there's such a huge stigma around it - especially when you consider two-thirds of the world's population under-50 have the HSV-1 type of herpes. This form generally appears as cold sores around your mouth but it can be passed to your genitals through skin on skin contact (which is becoming a more common way of contracting genital herpes).  

Before I was officially diagnosed, I googled my symptoms and scared myself silly. Based on my internet research I diagnosed myself with herpes - and reading articles and forums full of false information made me feel like it was the end of my life as I knew it. 

I basically read that it was incurable and could result in regular flare-ups. This made me think that nobody would ever want to date or sleep with me again. Everything leading up to the diagnosis was the most frightening experience I’ve ever had. I'd struggle to get to sleep after compulsively reading articles online, then I'd jolt awake early in the morning, panicking. 

I got my first sore around September last year. At the time I thought it was an insect bite, but it stayed for a couple of weeks and I realised that the small red mark was something else. 

Some people’s sores are painful, but mine wasn’t. So then I thought it might be an allergic reaction to a new fabric softener. After a few weeks, I went to my GP who said she thought it might be herpes. I told my mum and a couple of my close friends around the time I got diagnosed with the HSV-2 type (which unlike HSV-1 type is almost entirely sexually transmitted) because I was scared and needed the support, but I’m still not ‘out’ to most people.

Living with herpes – receiving my diagnosis via textBBC Three / David Weller

I had no idea what was going on with my body, and I was completely paranoid worrying where I got it from, ‘was it this person or that one?’ If you've had more than one partner it can be hard to know how you've contracted it, and you can still catch it even if you’ve used a condom as it’s passed by skin-on-skin contact. Knowing this didn’t stop me feeling like I’d done something wrong though - despite the fact I’d always been really careful and used protection.

My GP referred me to a sexual health clinic in September and I got tested the same month. They swabbed the sore and sent it off for testing, and my results came back positive. I went to the clinic alone – the whole experience was really isolating, and I was so pleased I wasn’t at uni when I got my result. I crumpled into a heap on the floor. I was so frightened and didn’t know what to do, and the medical advice I was given wasn’t helpful. I got a text message from the doctor and was told after I called that I had herpes and I had to contact all my sexual partners. That was pretty much it.

After doing some research, I found an online support group for people with genital herpes and started to understand about what having this condition really means, mainly that it’s not as bad as I’d thought.  Normally you only get one flare-up a year, at the most. 

After I was diagnosed, I was scared of rejection and stopped dating entirely for a few months. But I knew that the longer I put it off, the scarier it would be. So I arranged to meet-up with a girl I’d met on a night out. We went on a couple of dates but I didn't know when to bring it up. After our second date she asked me to come inside after I'd walked her home and kissed her goodbye, but I refused. I'd been drinking and I was far too afraid to talk about it then.

An illustration of his return to datingBBC Three / David Weller

The next day, I called a support line in a panic, and their advice was to tell her before we went on another date. I called and invited her round the same evening. That whole day, I thought about nothing else and felt sick when the time finally came. I told her as we sat on my couch, looking at the ground the whole time. When I looked up she just laughed at me for being so worried, and kissed me.

I’ve dated five or six girls since the diagnosis. I haven’t slept with all of them, and one positive to come out of the experience is that my attitude to relationships has changed and I'm having more meaningful experiences. The reason being that if I'm dating someone and think we might have sex at some point, I will tell them that I have HSV-2. But I only want to go through that with someone I really like, who I know I can trust.   

No one has ever seemed to be put off by the HSV-2. However, it has meant I've been less likely to date friends-of-friends for fear of everyone finding out. Weirdly, everyone I have dated recently has had some sort of medical training, (like a nurse or a vet), so perhaps there’s an unconscious pattern – I’m picking people I know will understand.

The stigma is something I’m still getting used to, but the reaction from people I’ve told has surprised me, in a good way. I even dated one woman who told me she also got a coldsore 'downstairs' and was so glad I brought it up because she was scared to. When I was telling a few friends that I had it, the third one said “me too” and I knew I was far from alone.

An illustration of a man self-checking for herpesBBC Three / David Weller

In terms of managing the condition, I take antiviral medication twice a day to control the symptoms. Not everyone who gets it will have to do this, some people don’t have to take any medication at all, but my first flare up was during a bout of glandular fever. My immune system was so weak that I was getting sores every two weeks. The drug is a preventative but most people only use it when they have an outbreak to calm everything down a bit. 

Sometimes I have flare-ups when I’m stressed, like when I have uni deadlines looming. Other than managing my symptoms as best as I can by taking care of myself and taking my pills, there’s not much I can do. Thinking back to when I was freaking out last year, I wish I’d known what I know now. That herpes is not some kind of life sentence. On balance, I feel like I’ve learned a lot from this experience, especially in terms of my attitude to dating. Now, when I go home with someone, it means I've gotten close enough to them to trust them with the truth; that closeness means that it’ll be really special.

As told to Helen Nianias