The biggest perk of this job by far is making a difference in people’s lives and giving people the tools to reclaim their confidence and their sex lives. Occasionally, people who call us in a state of anxiety about telling a partner ring us back to let us know how it went (something we encourage, we love a happy ending) but for the first time yesterday I had a two-for-one.
A woman in her 30s (I don’t know her name but let’s call her Suzie) who I’d spoken to a few days before, rang me back to thank me. She wanted to tell me that she told her partner, and all had gone well. Not perfectly, but good enough for her to be feeling confident that he was the next big thing.
“Me too!”
She’d taken a somewhat unconventional approach by telling him over the phone, while she was on holiday with her friend, “Polly”. Before calling, she’d confided in Polly that’d she’d been diagnosed with herpes – to which Polly replied that she too had it and had spoken to a nice chap called Cameron at the Herpes Viruses Association following her diagnosis! [How nice to hear this!] She went on to tell Suzie that this new boyfriend of hers had declared his love to her and said he didn’t care what she had.
Suzie’s success wasn’t quite the same perfect result as Polly’s but nevertheless, not too shabby. When she returned from holiday her own boyfriend initially avoided the subject, but he didn’t run a mile, and he seems keen to continue their relationship. He stayed the night at Suzie’s place, an honour she had not bestowed upon a man for years.
This was particularly lucky because I got the impression that Suzie still sees herself as being in a small minority and she was using that dreaded word ‘disclose’, which we discourage. There are nicer words to describe telling someone – tell, mention, reveal, unveil, etc.
This shared experience has strengthened the women’s friendship. Suzie was as surprised and delighted by this coincidence as I am humbled by it, so I felt obliged to share this story about continuing sex lives and remind you all just how common having genital herpes is.
The charity has several times had two members who live in the same street. We ask them if they would like to be put in touch with each other. The replies are always “No”! This is such a shame, as the story of Suzie and Jane demonstrates.
If you’re still not convinced how often this happens, then read Marian’s story involving the poppies at the Tower of London.
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?
Since stupidity, division, snobbery and general unpleasantness continue to thrive among us humans, one might argue that stigma doesn’t need challenging. It fits very well into modern society sitting comfortably somewhere between babyishness and insecurity as a normal human behaviour.
Stigma is primarily defined as ‘A mark of disgrace associated with a particular circumstance, quality, or person’. It does not say if the mark of disgrace in question is in any way justified or rational.
The human condition
Perhaps one of the biggest flaws of the human condition is this silly need to separate ourselves from others so as to feel superior. It is something we may all have been guilty of at some point or another. It makes us feel better at the expense of others, and in the purest examples it provides comfort to those with little to feel proud about themselves.
Most are better than this
Most people are fundamentally decent and have no interest in power – at least not the sort of power which makes important decisions affecting millions of people. We generally seek to enjoy the company of other good people, but there is little material value in that and sadly, fundamentally decent people do not seem to be the ones in control of society’s current narrative. Stigma and division are closely related and were always there in basic form but have been amplified by the power of modern media to serve those who benefit from our separation and discontent.
Divide and rule
Divisions have always caused issues in society and there are plenty of examples – Christian v Muslim, black v white, remain v leave, pro vaccination v anti vaccination, – on and on it goes, sometimes obvious and serious, often innocuous and playful, but they are ingrained into us and mined to maximum effect. They stem from the primal security of belonging to a particular tribe but are no longer essential for our survival and seldom do we benefit from it in this age of globalisation. We are perpetually pitted against each other by our own kind and in most cases oblivious to this manipulation.
There IS much profit to be made from this ‘us and them’ mindset. It is promoted wherever you look, especially if you are looking in a newspaper or at a screen. The marketing team hired by Burroughs Welcome at the end of the 70s applied this knowledge to great effect when they created the stigma for herpes simplex. (See How herpes got its stigma)
The fact that sex outside of marriage has always been frowned upon, particularly in the UK, has only empowered the stigma around STIs in general and herpes simplex in particular.
Changing your perspective
So, what can we do about it? We can’t change society, but we can change how we view ourselves and rise above any temptation to conform to any negative ideas we have been spoon-fed. We can let go of any stigma and look down upon it, not allow it to look down upon us. In the case of herpes simplex and those of us who are aware that we have it, it is important to repeat these three facts until they eclipse the nonsense:
Firstly: accept that herpes simplex infection is one of the most common, if not THE most common, infection among human beings and that anyone who doesn’t have the virus by their 30’s, has been living a rather sedate life. Therefore ‘having herpes’ applies to almost everyone. This should not be confused with ‘having been diagnosed with herpes’. Only one in three who catches it notices that they have it. So, most of the people who stigmatise herpes have it too, they just haven’t noticed. It is a fact that you are a safer partner than all the undiagnosed people out there.
Secondly: the stigma is an invention not a fact – and a recent invention at that. We know it did not exist at all until the late 1970s. Herpes simplex is not considered anything to be ashamed of in most of Europe and the world. It is only countries with English as a first language that have adopted such an ignorant and misinformed view of herpes – which is just a medical word for the humble cold sore.
Thirdly: any shame you have felt as a result of the stigma was deliberately created by a bunch of (presumably) men, brainstorming around a conference table at the end of the 70s. One of them, Pedro Cuatrecasas, has written about it. Their morally abysmal creation was a huge success at your expense and will continue to be until the moment you decide that is no longer going to be the case.
You are normal
Be good to yourself and ditch the stigma, realise that you do not need to feel stigmatised. As we have said above, it is normal to have herpes simplex. That is a simple fact which is not promoted because it doesn’t make any money. Simple facts reassure and don’t cause people to believe they need to rush out and spend money on treatment.
Once you feel OK about yourself, you will not care what lesser beings say or think about it. Most of us don’t subscribe to the stigmatisation of skin colour or the stigmatisation of homosexuality – so why on earth would we give any credibility to the stigmatisation of a very common and medically unimportant skin condition?
Read more on the manufactured stigma of herpes in the links below.
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.
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
differently.
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
to?
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.
I
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.
You’re
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.
Married now
Then
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.
So
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.
Honestly
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.
But
in the meantime dry your tears, and try not to worry too much about the future,
because it’s a really really happy one.
