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Meeting people with herpes

Like a letter in a bottle:

A member asked us about putting a Dates and Mates advert into the magazine: “I would like to meet some new friends male or female who I can trust and talk to… shall I put an ad in?” She added: “I had an invitation to a gathering but felt it was too big a step to take, I wish I had the confidence to do it …”

This lady’s advert tells of all the activities and interests she has – a busy life with lots of friends. So I deduce that her ad is actually saying “I want to be able to talk about herpes simplex to other people who have it.” My advice to her is that there are:

4 ways to talk to and meet people about herpes simplex.

Three are all entirely within your control, you can:

1. Talk to a helpline volunteer on 0845 123 2305. They are all people who have felt the anguish that “Now I am different no one will want me.” But that has been proved wrong – and all are now living successfully with this virus. A female helpliner said: “I’ve had many partners since, I’m now married and have a child … as far as I know, none of the partners caught it.” Male helpliner: “I’ve got married and had two children. And no, my wife doesn’t have it.”

2. Go to events:  we organise Saturday afternoon chats, mid-week evenings (this is often one-to-one with Marian), occasional events organised outside London, workshops here at the office, the AGM seminar…  Or if you don’t want to talk about ‘cold sores’ but would like to socialise with people with ‘cold sores’.  Then there are the social events organised by ‘Profesize’ about every 3 months – watch for this on the events page..  If I have your email address, I will be forwarding his invitations to you.  Or you can see details on at his website .

3. Set up a meeting in your area. we can explain how easy this is. If it is a success and lots of people come – that is great. If it is a damp squib and no one turns up except the helpliner or staff member who agreed to be there for the first event, well then, you have a nice one-to-one counselling session/conversation with the helpliner/office member. And remember, helpliners and office counsellors are, by definition, good listeners and interesting on ‘this topic’.

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Or, totally outside your control, you can:

4. “Put a message in a bottle and send it out in the hope that someone will decide to respond…”

Actually, what I mean is: you can put an ad in SPHERE or on dating website (for “people with” or regular dating website). You might be lucky – I do get letters from people saying “take out my ad, I’ve now met someone through it”.  But I’m afraid that I get a lot more people saying that this is really not a helpful way to meet people.

So, BE BRAVE, I beg you, talk to helpline volunteers on 0854 123 2305 and/or come along to events. We are all very normal, we do not bite, we will not make you stand up and “tell your story” (like AA does). Don’t moulder away ‘like a leper’ – come and rejoin the human race!

Marian Nicholson

My most memorable new facts – from a new helpliner

Herpes simplex is just a cold sore lower down. There is no need for doctors to use the medical term.  Do they say “chickenpox” or do they say “herpes varicella” when seeing a sick kid?  Wouldn’t if be wonderful and helpful if when they diagnosed us and they would say: “It’s a cold sore you have there. No treatment is necessary as it’ll go away by itself. However if you have a bad case, there’s a course of antiviral tablets to help it clear up.”

If asked how it is caught, they could say: “By direct skin contact with the affected part, so don’t let anyone else touch it – apart from the person you got it from or another person who already has it.” That is what people with cold sores are told. Nothing about “always kiss through a sheet of cling film as there’s a tiny risk you can pass it one when you don’t have a cold sore” – when it is a fact that facial sores are even more likely to be passed on when no symptoms are present.

The doctors could say: “It is so lucky you have caught it genitally as it cannot cause any further complications.” (This is because very, very rarely a facial infection reactivates in the eye or brain, which is nasty and will need to be treated with aciclovir, whereas genitally it does nothing like that.)Elizabeth Crawley