Author: Marian Nicholson

“It is easier to fool people than to convince them that they have been fooled.” – Mark Twain

You can download a PDF of this article.

An article by Nigel Scott

For anyone in the twenty first century it is hard to believe that there was a time when ‘herpes’ was not a stigmatised and feared condition. But this is true. Less than forty years ago genital herpes was largely ignored. Newly diagnosed patients were not made to feel that a common skin condition had just ended their chance of having future relationships.  Doctors knew that they were simply dealing with the manifestation of the common facial cold sore on a different site and they treated it appropriately. In the early 1980s things changed. How and why did this happen?  

The drop in the number of people who have caught a cold sore in childhood has led to an increase in genital herpes type 1 (and an increase in symptomatic – noticeable – cases of type 2 as well). Yet while few would view a cold sore on the lips as a problem, the exact same sore on the genitals is perceived as distressing by some. This inconsistency makes no sense. And it shines a spotlight on how ridiculous it is to spend even a moment’s thought on herpes simplex, wherever it may be.

When my first boyfriend’s cold sore on his lips was passed onto my genitals, it was definitely not the way I had imagined my first month of sexual activity to turn out. Nevertheless, I soon decided it didn’t make any sense to care about this. Even the shocking amount of disinformation and unhelpful pieces of advice I found on the internet did not change my mind. Amid all the nonsense, I also found some important bits of information that helped me dismiss the idea that I should think about this in any other way thank the way that my boyfriend thinks about the type 1 herpes on his face. Frankly, one wouldn’t think one would need an argument for that. However, remembering how desperate I was to find some lines on the obvious truth that this does not matter, let me explain anyway, for anyone needing confirmation of this self-evidence.

Firstly, the majority of people have herpes simplex, type 1. This means that they already have immunity against this virus and cannot get it on their genitals. If you have genital herpes type 1, there is a good chance your partner is immune to catching it.

Secondly, even if your partner does not yet have type 1, it makes no sense fretting over the site of your type 1. The majority of people could give someone genital herpes. If anything, they are even more likely to do so. Herpes type 1 does not like the genital region and is less likely to recur there, than when it is on the lips. Asymptomatic shedding is also lower than when on the lips, and is rare after the first year. Assuming that people have oral as well as vaginal sex, people with cold sores are more likely to give someone genital herpes type 1 than the people who know they have it on their genitals.

Knowing this, I have never felt the need to share the fact I have this wildly common virus with anyone. Doing so would have been absurd. No one ‘discloses’ that they get facial cold sores. It has not affected my relationships, or my sex life. That is not to say that you shouldn’t talk about it with a significant other if you feel like it  – but it is nonsensical to feel like you should.

As you can see, worrying about HSV-1 transmission is senseless. Beyond that, it begs the question why some people are so focused on whether or not a virus will be caught on one site rather than the other. The obsession with not getting cold sores on your genitals while being fine with them on your face is strange. Cold sores are a minor skin irritation, and I’m not sure why anyone would prefer them in one place rather than the other. The herpes stigma is ridiculous. It’s time to debunk it.

Most people don’t know that they have genital herpes. ^[1]

So, asking Love Island contestants about their herpes status is pointless. Herpes is common – for most it is a minor, undiagnosed skin condition.

You can see the full page of information here.

As I was creating the media release, I found myself thinking: are the doctors advising Love Island producers so ignorant about herpes that they don’t know that most people with it are unaware of it? (We know that for people with a bad primary infection, or frequent recurrences, that this is a surprise – but it is a fact that: most don’t have anything noticeable.) If we accept that the doctors do know, then perhaps the questions they ask contestants are to protect the producers and not really to find out who has/has not got herpes:

25. Do you currently have a cold sore or genital ulcer?

26. Have you ever had cold sores or genital ulcers or been diagnosed with genital herpes?

27. Have you ever taken medication for cold sores or genital ulcers?

By asking these questions, they are performing ‘due diligence.’ The questions will pick up one person in three who has the virus, and who has been diagnosed. But it won’t pick up the two out of three with the virus who get symptoms, but these are too mild to have been diagnosed. So it will not prevent transmission from the people who don’t realise the ‘little thing’ they have on their skin is herpes.

Maria (not our director Marian) sends us “My experience with HSV1” in the hopes it will help people:

I was diagnosed with herpes simplex type 1 on my vulva in early 2012 when I was 23 years old. I had an inflamed lump ‘down below’ and I went to see my local nurse who in turn referred me to a sexual health clinic in London. They reassured me that it did not ‘look like herpes’ and they swabbed the affected area. Ten days later I got a call to say that I had tested positive for herpes simplex type 1.

I immediately thought my life was over despite the girl on the phone being very reassuring telling me that it was “just the cold sore virus.” She sensed my apprehension and invited me in for a chat. Of course, in my frantic state I searched the internet looking for something that could give me more reassurance. There was little to be found other than how to “disclose” to a partner.

To this day the word disclose really irritates me. Nobody “discloses” cold sores when they are on the face. I actually ended up in my situation because of a harmless cold sore.

I met someone

When I met my now fiancé, I casually asked him did he get cold sores on his face. I felt relieved when he said he did from time to time. I was a year going out with him before I told him where exactly my cold sore had been. Why? Because medically he didn’t need to know and quite frankly, it was not his or anyone’s business where on my body I had hsv1. When I did tell him its location, he honestly didn’t bat an eyelid.

To confirm this approach was okay I spoke to an infectious disease consultant who said it was perfectly acceptable to tell a partner you have the cold sore virus in your system. There is no need to go into specifics. [Editor: there is no requirement to talk about any STI or HIV, unless the other person asks you about these. It is not a legal requirement to offer the information.] I have never had another outbreak apart from my initial one. And that really was only minor.

This is something I feel very strongly about. It breaks my heart that I spent so much time feeling guilty and ashamed just because by the grace of God this virus happened to be on my vulva instead of my lips. I didn’t do anything wrong. All I did was experience having oral sex and there aren’t too many people out there who haven’t done that. According to WHO “In 2016, an estimated 3.7 billion peopled under the age of 50, or 67% of the population, had HSV-1 infection (oral or genital).”

There are more people with this virus than without. I am sick of sensationalism in the news. It’s not fair on people and it needs to stop. It is time for people to get the facts. This should not be a burden when in fact it’s a part of life that happens to most of us whether we know about it or not. As a society we have broken stigmas in the past. It can be done again.

Editor adds: Maria’s experience of HSV1 is common. You could say that type 1 doesn’t “like” the genital region, because it rarely recurs there. You can see transmission details for oral sex here.