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.
Don’t beat yourself up for having caught genital herpes.
I was talking to a woman on the helpline. She said felt guilty for having herpes. She told me that she was metaphorically beating herself up for catching it. At a young age – and via sex she didn’t want anyway – she found she had caught this. (In fact, she was 19 – young for some, not for others.) She said that she had had more relationships, but they never lasted long, although the men concerned reassured her that it was not to do with her herpes. Now she felt that having genital herpes was a punishment… She added that she was depressed as well.
This is what I told her, during the course of the conversation:
By the age of 15 one third of humans have at least one herpes simplex virus – having it ‘young’ is quite normal. Obviously, at this age most of these cases will be facial cold sores and perhaps surprisingly only 1 in three people are even aware they have it. (Two out of three have such mild symptoms, that they are not diagnosed.)
According to a study published in the British Medical Journal, some people think they started having sex too soon – although 60% of women and 75% of men think the time was about right. Some people catch herpes from their first sexual partner, regardless of whether this was ‘too soon’ or not. That’s life, that’s chance. You don’t need to feel guilty for having herpes. Depending on the number of partners, it is something that may happen when people are quite young. All it takes is one experience of skin-to-skin contact (with the affected part with friction) to contract the infection, and having it does not reflect negatively upon personal cleanliness or morality.
It is unfortunate to catch herpes from your first partner, but not that uncommon. And you are unlikely to stay with your first partner… Many people have been unlucky in love. It is a charming fault to fall for people too easily. Of course, the subsequent break-up is painful – you can get your heart broken. But this is much better than being a hard-hearted. You never know if you will be able to swim if you never jump in the pool.
Having herpes is nobody’s fault. Don’t feel guilty about having herpes. If you have it genitally it means you’ve had some sort of sex. But that is expected of people over the age of consent.
Herpes does not cause depression
Depression is difficult. It’s nobody’s fault. It does not respect status or situation. And herpes simplex virus does not cause depression. It is what you think about the virus that can affect your mood. If you are really depressed don’t be afraid to seek help. It can be treated. With support and the right treatment you can feel normal again. My best friend is – at last – taking sertraline and she says “It’s great to wake up every morning, and not feel like doom is about to happen.” Our worst fears are seldom realised, but knowing that may not help when the ‘black dog’ affects you.
Lastly, don’t be judgmental. Never be hard on yourself for things that you’d forgive your friends for. Ask yourself for all the issues that you are beating yourself up over: “Would I blame a friend?!”
It is just bad luck if we catch it. No one deserves bad luck. Bad luck is not a punishment for anything. It happens. Children get leukaemia. Wonderful people are killed in car smashes. Super people catch a virus and there are far more devastating viruses than herpes. The HVA can help with your herpes concerns. Then you will be able to move on.
Get your head around herpes! Have you just been diagnosed with genital herpes or have you had it for ages? How do you feel? Do you think it changes anything, or everything? I’m here to tell you that you might have the wrong idea.
When I was diagnosed, I thought
my dating life was over.
I felt shame and guilt. I
thought I was a bad person, so bad things had happened to me. I thought nobody
would want me. I wasted two years in my thirties…
I could not have been more wrong.
You might feel the same way now.
If you do, read on and perhaps I will be able to persuade you to look at herpes
Believe me: herpes simplex is way more common than you think. If you’ve been carrying around this deep dark secret for years – or only just caught it – know this: you are not alone!
Learning more helps!
By age 25, we know that one in ten have type 2. And because of oral sex, many of the 6 in ten with type 1 may have it genitally. In fact, more than half new diagnoses of genital herpes are caused by type 1. [ref 1] [ref. 2]
Over 85% of women between 35-54 have type 1 and lots of the type 1 is genital – and over 18% have type 2. In men the figures are 8% – 10% lower than in women. [Ref. Cunningham]
Most of these people are carriers of herpes and don’t even know they have it and may pass it on when they have very mild, undiagnosed symptoms – an itchy spot or slight rash.
So, it’s time to clear up all the misconceptions about herpes. Read the full website… Herpes doesn’t have to be a life-long problem… It may just fade away.
Don’t allow shame and worry to eat away and sap your self-esteem and self-confidence around potential new partners. Confide in someone you trust – or talk to one of our helpline volunteers who all have it themselves. Speaking about it to others before you get to the point of talking to a new partner is good – it will normalise it for you.
So, what happens when you finally meet that special person? Sooner or later you may want to have to have a conversation about it. You don’t have to, but if you feel as though you should, then you won’t relax until you do. We have a leaflet, “Talking to a New Partner” that is packed with good advice and tips – free to new members.
We have done the research and we can tell you that fewer than one in five partners will be put off. In spite of the hype, most people won’t take herpes nearly as seriously as you do. [Research by HVA found that only 17% of potential partners rejected one of our members when s/he talks about this…]
Learn to talk about it
One way to think about it is to
ask yourself how a person would behave if they got occasional facial cold
sores. Would they even consider mentioning it at all? Would anyone expect them
Lots more is discussed in our event “First Day of the Rest of Your Life” . There is a Saturday devoted to this every three months.
A member just asked us this question. We get asked “will there be a herpes cure” every day. It proves how successful the aciclovir (Zovirax) marketing campaign was in the 1980s. The masterstroke was to call herpes ‘incurable’ to make it seem important. (There is in truth, almost nothing about genital herpes that is important, so the drug company did some creative thinking.) This was a brilliant idea because it ensured the success of aciclovir. They put herpes on the map and it has never looked back!
What Humpty Dumpty said
Incurable is an ‘Alice in Wonderland’ word. It can mean whatever you want it to mean. If you are diagnosed with terminal cancer, you have something that is genuinely incurable and you are going to die. If you have a bad cold, you have an infection that medical professionals call ‘incurable’ because there is nothing that they can prescribe for you that is going to make the cold go away more quickly. (You can take paracetamol and that can help with the symptoms, but the cold will last just as long.) Cold sores and genital herpes are not incurable because symptoms go away by themselves without treatment. If herpes was incurable, the sores would never go away.
In fact, for most people, the virus is so well controlled that they don’t even notice enough to realise that they have caught anything at all, so they are not even diagnosed. What the drug company’s marketing campaign was capitalising on was the ability of the herpes simplex virus to hide in the body and sometimes cause more symptoms later. They could have called it ‘clever’, but that doesn’t sound scary.
It’s a strategy
Hiding is a common strategy for infections. We all carry around many things that do this: chickenpox, glandular fever, facial cold sores, thrush. They have not been marketed as ‘incurable’, but they all stay in the body and may cause symptoms from time to time. Some people notice more than others.
To get back to your question: Millions of pounds are spent
every year on research into new treatments and vaccines for herpes. We write about this in every issue of
SPHERE. [The magazine sent every 3 months to our subscribers.]
The development I am most excited about is a new antiviral drug that looks to be better than the ones we have now and may be used in combination with aciclovir. We will see if it gets to market.
Don’t be misled by marketing It was the ‘incurable’ word that led to the stigma. It’s as simple as that. The stigma led to more research into treatments because people have been made anxious enough to buy drugs and supplements that most of the time, they probably don’t need. Nearly everyone diagnosed with herpes asks about a cure for herpes, whereas people with a cold (or even a cold sore) just wait for it to go away, without stressing about it.
The key is perspective. If you over think herpes and worry about the future, please contact us through our helpline or send an email to [email protected] – or go to our shop page and become a member. We can help you get things in perspective again.
know exactly how you’re feeling. You’re 26, and you’ve just found out from the
doctor that you have herpes. You’ve just burst out crying in front of the
awkward-looking trainee GP. You feel like your whole world is over, you’re
damaged goods and no-one will ever want to have sex with you again.
going to spend the next week in the flat, crying, downing wine and despairing
at the terrible injustice – you only had sex with him one time! And you didn’t
even really like him!
Well I’m pleased to say that ten years’ later, you’re doing great! Yes, at the beginning it was difficult, and maybe you did avoid some romantic encounters because you felt insecure about having to tell someone you had herpes. But then, about a year later, you met Steve – such a great guy. You waited until you’d been out a few times, and you were about to get near to having sex, and then sort of blurted it out. And he was absolutely fine about it! You ended up dating for almost a year, and then after that you went on to have three more really happy relationships. No tears, no rejection – everyone you told basically shrugged their shoulders and never mentioned it again.
you met the person that you would end up marrying. You were really nervous,
because you knew she was someone special. Spent the whole meal trying to eat
your dinner and follow the conversation, with heart pumping at deafening
volume. Well that was an anti-climax – again -just a shoulder shrug and ‘oh, I
don’t know much about it but I’m not bothered at all’. Cut to 5 years later,
and we’re still going strong.
what I’d love to be able to do for you (and everyone who might be going through
something similar) is give you a giant hug and tell you that IT WILL BE OK! You
are the person who will be the most worried about things – not your future
partners. They will choose you because they fancy you and love you – as you
would for others, because why on earth would you not go out with someone
because of a skin condition? How ridiculous! And if you do come across someone
who judges you on the basis of that skin condition, do you want to waste your
time with someone like that? There are so many good ones out there.
the hardest thing you’ll have to get over are your own feelings of shame and
embarrassment – and you’re still working on it (that’s why I’m using a
pseudonym here). But there are people like Marian and Nigel trying to break
down that stigma, and in time maybe you’ll work up the courage to be 100% open.
in the meantime dry your tears, and try not to worry too much about the future,
because it’s a really really happy one.
How should I treat thrush (candida), when I have genital herpes?
Thrush is also known as candidiasis or a yeast infection.
It is widely thought that that using a thrush cream to treat a yeast infection can make a genital herpes outbreak worse. So if you have both at once, it is best to use a pill (oral medication) to get rid of thrush: you can buy fluconazole pills (brand name Difflucan or Canesten) at the chemist or it can be prescribed by your doctor. One dose should be enough.
First of all, it may be an idea to make sure that thrush is actually what you have. American studies show that two-thirds of women who buy over-the-counter thrush treatments don’t have a yeast infection at all.
It is surprising that people rarely catch it on the face as well as on the genitals! When you consider how often we do oral sex and ‘normal sex’ on the same night.
This is a common story/question that we get on the helpline/by email: “I was diagnosed two months ago with genital herpes. I got it off my partner’s cold sore – yes, it is type 1 – and now I have something on my lip/in my mouth. [Described as a cut on lip, a lump in mouth, or an ulcer on tongue/gum]. Could this be facial herpes too – have I got a cold sore as well?”
The answer is “No, that is not going to be a cold sore.“