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Does anyone else feel guilty for having herpes?

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.  

Take this fact to heart and move on…
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Vitamin D may help to improve resistance to Covid-19. Might it also help to reduce herpes symptoms?

Helpline callers often ask whether any food or vitamin can help improve resistance to herpes simplex and prevent symptoms. Despite many claims, no ‘magic’ food or vitamin is guaranteed to do this.

Now people are asking what they should eat to make sure they don’t catch Covid-19. Or if they do catch it, how they can have a milder case. Medical experts (Covid Symptoms Study) are giving the same response as us: there is no single answer.

One coronavirus expert suggested a diet that includes a wide range of foods, with brightly coloured fruit and veg, or best of all aim for a ‘Mediterranean diet’.  This is also our advice on how to reduce herpes simplex outbreaks.

As you will have seen in the news, people with serious underlying health conditions are most at risk of having a bad case of Covid-19. It is difficult, if not impossible to make a long-term health problem disappear, so what can be done? 

As you may know, people with serious underlying health conditions are more at risk from Covid-19. What can be done? 

Medical reports suggest that people with low vitamin D levels may be harder hit with Covid-19, although experts are not agreed on how much it matters and why.

We have previously written about “Vitamin D for herpes” in SPHERE 34-1. Vitamin D can be a useful supplement for immune function and to reduce outbreaks.

Dark skin? Over 65? Vitamin D is the supplement for you

You get it naturally by sitting in the sun, (but not overdoing it). For people with light skins this means around 20 minutes’ exposure between 10 am and 3 pm in the summer months. At other times of the year the sun isn’t strong enough to help much. Darker skinned people will need greater sun exposure to benefit. 

The NHS has long been advising that, amongst others, people over 65 and those with darker skin should be taking supplements of vitamin D.  Our director, Marian Nicholson, has! She takes the recommended dose of 10 mcg (400 i.u.) of vitamin D to lessen the chance of an outbreak. And it does not just help with herpes simplex, she rarely gets a cold. If she does, it is gone in a day or so.

In addition, the Department of Health and Social Care recommends a daily supplement containing 10 micrograms of vitamin D throughout the year if you:

•    are not often outdoors – for example, if you’re frail or housebound

•    are in an institution like a care home

•    usually wear clothes that cover up most of your skin when outdoors

•    you have dark skin – for example you have an African, African-       Caribbean or south Asian background.

So perhaps it is time you tried vitamin D too? 

bottle of vitamin D pills and other pills...

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Herpes and corona virus: antiviral medication – will it help people with Covid-19 (Coronavirus)? And are people with herpes more susceptible?

The short answer is no – herpes antiviral medication will not help with flu. (This a question that we have been asked lately – of course!)

There are millions of different viruses in the world. The antiviral drugs that work to suppress herpes viruses have no impact on any of the other viruses. And this includes those that cause colds, flu and Covid-19. The antiviral medication for herpes simplex works against herpes varicella – chickenpox, but that’s it.

For more about the origins of herpes antiviral medication go to: https://herpes.org.uk/how-herpes-got-its-stigma/

Will taking antivirals make any difference to getting Covid-19?

Taking antiviral pills will make no difference to your immune response – the pills work only on the virus, not on human cells at all.

Susceptibility – should people with herpes worry more about Covid-19?

The short answer is no. (This is the other question that has come up a lot!)

At least two thirds of adults carry herpes simplex infections (facial cold sores and/or genital herpes) by age 25 – all over the world. Herpes simplex may cause symptoms in people when they are ill or stressed. But its effect on the immune system of otherwise healthy people is minimal and having herpes is not likely to make any difference to people who catch Covid-19.

People with other pre-existing conditions may be seriously affected by Covid-19. More information here: https://www.bbc.co.uk/news/health-51703892   

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Help research into herpes viruses (now closed)

Help research into herpes! Have you had a diagnosis of herpes simplex type 2 – but no outbreaks in the last two years? Or perhaps you have had a positive blood test for herpes simplex type 2?

A researcher at Reading’s Royal Berkshire Hospital would like a sample of your blood.

A single “tiny tube” is all they need. They are comparing antibodies in people with type 2 who do, and who don’t, get outbreaks. This could be helpful in future vaccine research. It is hoped that a vaccine could be used to treat people with too many outbreaks in order to give a “functional cure”. (This means to “take away the symptoms“.)

Interested?  To help research: contact Dr Bret S. Palmer via e-mail at [email protected]  to find out more and how you can take part in the study. (IRAS Project ID: 260102)

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Trial seeks volunteers – for a new shingles vaccine

A shingles vaccine is offered to volunteers. Are over 50? And have you had shingles (herpes varicella)? If so, you might qualify for the trial to prove the effectiveness of the ‘other’ shingles vaccine. [Currently, the vaccine offered to people in their 70s is Zostavax. This is a single jab.]

This trial is about a two-jab shingles vaccine (immunisation). The manufacturer, GSK, is running a placebo-controlled trial. This means that you might get the real thing, or a sterile water (safe placebo) injection instead. You won’t know, and neither will the person who carries out the vaccination.

The trials are being run in Addlestone, Atherstone, Belfast, Bradford-on-Avon, Manchester, Nantwich, Poole and Trowbridge. More details on https://clinicaltrials.gov/ct2/show/NCT04091451?cond=Herpes&cntry=GB&draw=2&rank=6

arm getting shingles vaccine

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Herpes information

The HVA herpes information leaflet is called “True or False”. I took 200 to the Annual Conference of the Royal College of GPs in Liverpool 24-25th October. The delegates took 177 of them!

Herpes information leaflet on the stand

Liz Allen of the British Association of Skin Camouflage (left) Marian (right)

Doctors were glad to find materials to help their patients with all sorts of skin conditions. And the herpes information leaflet was appreciated. It offers treatment advice and also emotional support… Several doctors said things along the lines of “I didn’t know there was this kind of support for my patients and they can be very upset about it.” And a couple of doctors even thanked us for having the stand!!!

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Help to get my head around herpes:

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.

The atrium where we meet twice a month.
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Media lies as usual … about herpes!

You may have seen articles in newspapers/online about ‘herpes in astronauts’. As usual they misrepresent. So if you haven’t, don’t bother to search – they are uniformly misleading. Not just in Metro which you might expect, but even the Independent got it wrong. As we have written before, journalists only know about one type of herpes and assume the scientists are writing about genital herpes, whether they are or not!

Key Points:

As you might expect, any condition that reactivates when a body is under stress is likely to show up in astronauts. Now, after 60 years of men-in-space, scientists decided to measure the amounts of 4 different herpes viruses in saliva and urine. In about half the astronauts, they found shingles and two kinds of glandular fever present during space flight. In conclusion, it is useful for the astronauts to know that they should not kiss vulnerable people when they land, as the glandular fever-like viruses will continue to be present in saliva for up to a month after a long flight.

What the Frontiers in Microbiology, Feb 2019, reported:

“Currently, 47 out of the 89 (53%) astronauts from shuttle-flights and 14 out of 23 (61%) astronauts from ISS [longer] missions shed one or more herpes viruses in saliva/urine samples.”

There are 8 herpes viruses that humans may have, including chickenpox/ shingles (VZV) and several glandular fever-like illnesses EBV and CMV.

Continue reading Media lies as usual … about herpes!
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We talk on Woman’s Hour – BBC Radio 4

Jenny Murray and Jane Garvey host Woman's Hour
Marian Nicholson (HVA director) and two members, Jess and Sylvia, were interviewed for 20 minutes by Jane Garvey. This was for Friday 22nd February’s Woman’s hour. Then the editing reduced this to 12 minutes. This shows that they liked it, because originally we were told we’d only have 7 minutes!
Hear it on BBC Sounds – at the 6 minutes point. We did our best to destigmatise the issue. Sylvia and Jess were brilliant (thanks ladies) and talked about how their partners were OK with it. Marian talked about how very, very common it is. Listeners have told us the editor did a good job!
If you would talk about your experience to help get rid of the stigma, let us know. It could be in print media, on radio or even TV! Email [email protected]
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Laura’s letter to her younger self

Dear Laura,

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.

Lots of love, you +10 

Xx