Helpliners are regularly contacted to keep them involved with latest news and a new helpliner commented:
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
A tingle on the skin, a stressful week at work, an upcoming date: for many people with genital herpes, any of these can set off hours of worry about the next flare-up. The symptoms themselves usually pass within days, yet the fear of another recurrence can linger for months or even years. Over time, that constant vigilance can wear on the body and mind like any other long-running stressor. Understanding how the fear works, and how to loosen it, can make living with this very common virus far easier.
How can fear of another outbreak become chronic stress?
The fear becomes chronic stress when worry stays switched on most days instead of rising and falling with actual symptoms. Chronic stress is a long-lasting stress response that keeps the body on alert, raising hormones such as cortisol for weeks or months. Short bursts of stress are normal and even useful. Constant anticipation of the next outbreak is different, because the threat never fully passes. Signs can include poor sleep, irritability, and difficulty concentrating.
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?
If you have had the virus for a while, we expect you will have symptoms less often and more mildly. But we do get people calling our helpline who ask “Why have my herpes episodes got more frequent, now?” This is a fairly common question.
A common question by callers on our helpline (0345 123 2305) is often “Why didn’t I catch herpes on my face and genitals? We did oral sex as well as regular sex. So surely I should have seen symptoms in both places instead of only on my genitals.”
We have not found any medical papers on this topic, although “having herpes on genitals as well as face” is something that is mentioned in reported case histories of individual patients.
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.
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
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.
Don’t beat yourself up, you don’t have to feel guilty for having 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.
