Testimonies
In this section you will find testimonies from people living with herpes, with a variety of experiences!
Also note that if you want to share your story with us, please write to us at info@infoherpes.org
Stigmatisation
There is still a strong stigma towards people living with herpes. As we often say to people who contact us, we observe that the stigma is often more difficult to live with than the virus itself. The irony is that the prevalence is very high. According to the WHO, approximately 67% of the population under 50 years of age is living with HSV-1 and approximately 13% of 13 to 49 year olds with HSV-2. It is therefore strange that the stigma persists despite such a large proportion of the population being concerned.
Where does the fact that there's no real improvement over time come from? Firstly, because there is no public discussion about it! There is no campaign that talks about herpes, no visibility of people living with the virus, because the stigma causes people to remain in the shadows.
We still have this image that a person living with genital herpes is dirty. Yet a person who has a "cold sore" or "fever blister" on their lips does not usually face this same judgment. But it is the same virus... Is it a relic of religion, which considered sexuality as something dirty, something taboo? I don't know...
The way the herpes virus functions is also something that "doesn't help its cause" if I can put it that way... Indeed, as the virus can remain asymptomatic for years, a large part of the carriers will not be aware of it.
Moreover, even when you know you are a carrier, the virus is not permanently present. It goes through long periods of dormancy. We don't see it very often, so we have the impression that it doesn't really exist, and the invisibility of the phenomenon doesn't help to break down prejudices.
Furthermore, there is minimal testing. Serology results are unreliable and difficult to interpret, and this is one of the reasons why health care professionals do not routinely test for herpes.
Many negative images are still circulating, presenting the herpes virus as the worst thing you can get. How many shows use this virus to make jokes, to make fun of certain movie characters? Do a quick search on herpes memes and you'll see.
All this leads people with the virus to live with a great fear of rejection and to not talk about it. This contributes to the phenomenon of invisibility.
Finally, there is a lack of information. We are finding that diagnoses are often given quickly, sometimes even over the phone, without much information about what to do next. Because yes, there is the diagnosis, but there is also the post-diagnosis phase for which there is simply no service. So individuals are left with this news and a lot of unanswered questions.
When you don't have information, you go to internet to get information... It can be useful, but it comes with a lot of false information, scary images, proposals of miracle cure, etc.
Finally, there is little content about "how to live well with the virus". Because yes, it is possible to live well with the herpes virus!
I would love to share an empathetic message about herpes. It's not easy to receive a diagnosis. But I would really like to see a positive and realistic vision begin to be conveyed: It is possible to live well with the virus. You just need to be well informed and to implement effective strategies to reduce the possibilities of transmission.
We have many stories of serodifferent couples who are enjoying a fulfilling sexuality without transmitting the virus. There are also many stories of people who are not sexually rejected, even though they are carrying herpes. Pregnant people who can have a vaginal delivery while being a carrier of the virus, etc.
It is often said that knowledge is power. It has been proven that knowing your diagnosis and the strategies to employ significantly reduces the possibilities of transmission.
Witnesses
"- Hello?
- Yes, ma'am, your results are in. It is herpes. So notify people.
- Okay..."
This is how I received my diagnosis. Flabbergasted.
No details, no empathy, no information about disclosure, risk of transmission, etc. The coldness of the phone call left me completely confused. Being quite young, I didn't know who to turn to. I called my best friend, my boyfriend at the time, and I fell apart. When I found out, I thought my life was over. It was as if nothing made sense around me anymore. I spent several days like that, even weeks, digesting the news. I can still remember sitting in my bed and staring into the void. I have always been afraid of herpes. I saw it as the worst thing that could happen to me when I was young. Life is funny; I ended up getting it regardless.
Looking back, I see it as a kind of a learning experience.
I went through, I would say, a bunch of emotions. Angry. Why hadn't anyone in my life told me that oral herpes could be transmitted to the genitals? How could I not have been told this? It's not a complicated thing to pass on! Oh yes... right... no sex education at school, parents rather embarrassed by all that had to do with sexuality... and I was paying the consequences.
Sad. Why me? And how do I deal with that now?
Fear... fear of rejection mostly. Will anyone want me knowing I have this? Is my sex life ruined?
Regret. How many times I replayed the scene in my head, telling myself I wanted magical powers to go back and erase it.
What happened next was like a process. Have moments when it gets better, then sometimes have relapses. But if you look at the curve roughly, it rises, it gets better and better.
I remember my first disclosure to a new partner.
"I have to tell you something... I have herpes...
- No problem, beautiful."
Phew! That answer was like the most comforting balm applied directly to my heart and I believe, the first step to acceptance, to healing. Then the years passed, without recurrence. Other disclosures, which went well. Discussions with my therapist who told me: " Come on, you are NOT herpes! You're X before anything else."
People talking to me about their own herpes diagnosis, some with surprising detachment.
And then it slowly sinks into my head. No, herpes does not define me, it is not my identity!
Recently, I gave birth to my marvelous little girl, by vaginal delivery, without any transmission. My current boyfriend, despite the years we have been together, has not contracted anything.
What I want to say to people living with herpes and to that young woman I was at the time of my diagnosis: Be gentle with yourself! You don't deserve hurt yourself like this, to judge yourself harshly and to blame yourself.
Herpes does not define you, you are many other things.
Lydia: "Herpes is not the end of the world!"
My name is Lydia. When I was in high school, we were shown horrible (and very exaggerated) pictures of all the STIs during our sex education classes. I was taught that in life, you had to avoid them at all costs if you didn't want to turn into a human pustule. So I understood that you had to use condoms and get tested regularly. I was especially afraid of genital herpes: that incurable infection that I considered the worst of all!
I was diagnosed a few months later. I was 17 years old and had just started my sexual life with my first boyfriend. I was in for a shock! He had transmitted it to me after oral sex. Yep, that's right! I also learned that my boyfriend had had a cold sore in the past, and that cold sores were herpes. While I thought it only happened to people who had a lot of sexual partners and didn't protect themselves, I realized that my preconceptions were wrong. I was disoriented because I had not been told that herpes was not part of routine screening!
Twelve years have passed since that day. The good news is that my diagnosis has practically no physical impact. I only have mild symptoms once every two years. So no, herpes is not the end of the world! However, people's ignorance and prejudices are more difficult to live with.
I have witnessed many jokes about herpes over the years, sometimes even coming from my own friends (who know nothing about my story). For example, there is the famous drink joke: "Here, try my drink, but I hope you don't have herpes! Sometimes I feel like saying: "Don't worry, I only have it in the genitals!".
If you are making this kind of joke, know that you are probably laughing about your friend, a family member, or yourself! Assume that a large portion of the population is infected with the virus (even if they have no symptoms). I don't blame you, I might have made that comment myself if I were less informed! I question the effectiveness of the sex education classes I received at the time. I learned through fear rather than through sharing information.
That being said, I think that testing for herpes only when symptoms are present also promotes stigma. How many people contribute to the stigma when they themselves are unknowingly carriers? How many people have noticed symptoms, but have mistaken them for something else, like an ingrown hair? I recognize that this is not going to change any time soon, so I just hope that my testimony can help reduce the prejudices of some people, which would allow symptomatic people to live better with their situation.
Nathalie's story
Hello,
My name is Nathalie. I turned 50 in July. As a gift, in August, I was given a lovely diagnosis of genital herpes. I had taken a morning swim, and then I felt a tingling sensation in my pubis. I immediately thought, "Hmm, that's weird". A few hours later, I had three little pimples. I knew. At the end of my work day, I headed to the emergency room in another city...just in case! They scratch the pimples... whew, that doesn't feel good! A few days later, the expected diagnosis is made: I do indeed have it!
In general, in life, I am a very positive person. But then, I wasn't sleeping, I wasn't hungry, I was angry at my partner who always said that HE had nothing. I was sick to my stomach. I was ashamed. That's when I started to do some research. I called the clinic L'Actuel. I joined a Facebook group. And, that's when I realized that, in the end, it's not so bad!
The worst thing for me is to tell a new partner. A little before the holidays, I saw someone. We were going to dinner, activities like that, nothing sexual. Then I got up the courage to tell him. Surprise, he had it too! But in the end, we stayed at the friendly stage for reasons other than herpes. Now I've just met someone I'm very interested in and I'm so nervous to tell him. He had been in a relationship for almost 30 years. For him, it will probably be the unknown. I'll have to accept rejection if that's the case. And if he is open-minded like I want him to be, I promise to cherish this relationship like the apple of my eye! I'll write back to keep you posted! To date, knock on wood, I have not had any more flare-ups. I still have Valtrex in my medicine cabinet...just in case!
If herpes was a person I would tell him this: It's true that sometimes I left the door open for you. I'll assume it. But you have to ask before you enter !!!! Now that you're in my house, I hope you'll behave yourself and sleep for the rest of my life!!!
Not long ago at a dinner with friends we were talking about our life dreams. My first dream was to meet and live a beautiful love story again. With herpes, a love story takes on a whole new meaning.
For those who have just been diagnosed, I say take the time to digest the news. Get informed. And most importantly, have at least one person you trust to talk to about it. When I first found out, I thought my sex life was over too. But now I'm getting my hopes up, slowly but surely!
Nathalie xx
Nina's testimony
When I found out I had herpes I was totally devastated. I thought that I would not be able to live my sexuality as freely as before, that everything would change and that I would become totally dependent of this virus.
After getting informed and with some time, my life started to remake sense and I was getting better and better. I think it took about a month and a half before I could feel myself in my own body and regain possession of it. The medication and patience certainly helped. It takes a moment to accept what's really happening to you. It's important to take a step back, anyway to be positive about my situation really helped me to get past this difficult time!
Now I've been living with herpes for 6 months and I haven't had a second outbreak. I'm living my sexuality like I used to, I have a stable partner and it's like I never had anything. I know that not everyone's experience is the same, but it's important to put things into perspective and seek help to see that it's really not as bad as you might think!
Nina
The experience of disclosure
When I got herpes, I had been separated for two years and was regularly meeting new partners. Since I had never known about condoms since I was sexually active, they were not a priority or a reflex for me given that I had been in a stable relationship for over 15 years. I had no fears about my sexual health. So the advantage that having herpes had on me was that it slowed me down in my dating. I was reckless; even suicidal.
My partner at the time of my primary infection took it well, but the relationship ended after two months. Given the risk I presented to the women I met, I became more aware. That's when I experienced my diagnosis as a punishment. I decided that in the future I would tell my partners every time I met someone new, because I wanted to be in a committed relationship. I disclosed my herpes status and it wasn't always successful. However, I made a duty to disclose, because I knew that herpes is a contagious virus that should not be hidden. When my diagnosis was confirmed, I met a woman. I was 43 at the time and she took it well. Because I knew about the virus and had read a lot about it, I was familiar with it. For four years, when I had outbreaks or a suspicion of recurrence, I would tell her. We had unprotected sex, but always with the thought of being careful when I had symptoms.
I made it a point to always tell my partners. Some encounters ended abruptly because of this or some people took the time to inform themselves. I don't have any restraint in talking about it, because it's so common. Again, it's still a huge taboo. Cold sores are visible and people will normalize it and be sympathetic, but the moment it's in an intimate area, it's associated with stereotypes to the point of being chastised. I have never been a person who seeks relationships only for sexual fun, but as I got to know the person it allowed me to see if it was worth going further. When I saw that we had similar values and perspectives, I thought it was time to talk about it. The reason is that as much as my partner has the right to know so she doesn't get her hopes up, I have to know if she's going to run away or if I can project myself with her. So, I was saying it so that we wouldn't waste our time. Even if we have some things in common, if the person can't get past that, it doesn't matter why, it's a filter. The woman I've been dating for 6 years also lives with herpes, but on the lips. So I take that protective factor into account in our intercourses.
There are a few friends and colleagues at work that I've talked about it with and I've realized that some people are also living with herpes. In my family, I have told almost everyone except one of my sisters who is not as open-minded. I talk about it to feel better about my reality and also to reduce the taboo that surrounds herpes. People may think that herpes affects people with a certain profile, but anyone can get it. When I spoke to my children about it, it was so that they would know that it is a fairly transmissible virus and that the consequences are very variable, sometimes with dramatic impacts.
Personally, I have lived well with it, I have modified my life, but I have nonetheless continued my life path in a way that is as little disabling as possible!
