Personal Perspectives on Living with Herpes– Learn How to Live with Herpes

Sharing the experiences of other people with herpes can be invaluable, especially if you do not have a local support group or if you feel unable to confide in friends or family.

One of the most frequent requests from visitors to the site is for more shared experiences. We are always looking for these but, understandably, many people find this a big step to take.

Shared Experiences gives you the opportunity to hear from others, to tell your story or to simply share information that you feel may be helpful or informative to other visitors to the site.

Everyone has a story to tell. If you want to hear from others, it’s worth thinking that others may wish to hear from you. We certainly do!

If you would like to share your experiences with others, please contact us at, the AHF will then work with you to develop your story so that it can be easily and clearly understood by people all around the world, whatever language they speak. Please note that we may need to contact you, so please make sure that you provide us with an e-mail address. Bear in mind that we may need to discuss your story with you, so make sure you give us an address that is secure, or one where you feel comfortable to discuss your personal situation.

Rest assured:

  • We will not publish your story without your permission.
  • We don’t need to use your real name or provide any details that would identify you (we like to mention your country, though).
  • While we do reserve the right to edit your story, this is purely to ensure that it is clear, internationally relevant and doesn’t cause offence.

Life stories of living with herpes:

Lucy realizes that if you really care for someone you aren’t doing yourself any favors if you don’t tell them you have herpes

I was diagnosed with herpes, 7 years ago, when I was 26. On becoming pregnant I decided to be tested for STDs and was shocked when I was told I had contracted herpes. The doctor who gave me the results counseled me. One of the main things she picked up was my total lack of concern for whether I had contracted the virus from my partner, whom I had been married to for four years, or vice versa. To me it didn’t matter – it was now a case of learning to live with it and making things as ‘normal’ as possible. My husband went for tests, which confirmed what we already knew – he also had the HSV-2 virus.

Over the following years we learnt to live with the virus. Fortunately I had very mild symptoms, but my husband suffered terribly with frequent, painful attacks. We put this down to the stress in his life but this was something he felt he could not change. When we decided to separate in 1999 (nothing to do with the herpes) we managed to remain terrific friends. It was hard leaving, knowing that we would both have to tell subsequent partners about the virus. This was something that terrified me as I was convinced that no one would want me.

Since separating I have always practiced safe sex, but the idea of telling someone I have the virus always stopped me taking a relationship to any serious level and I would finish it before it got to that stage.

I met a man just under a year ago through a herpes dating site PositiveSingles on the Internet. We were friends for a long time and then a few months ago decided to take it further. He has always told me that it’s ‘friends first’. He is the most nonjudgemental person I know. I knew in my heart that if I couldn’t tell him then I wouldn’t be able to tell anyone. So, having almost split up a number of times, I told him last Sunday. Having since read lots of articles on how to tell partners, I now know that I did it all wrong! It took ages for me to tell him and I’m sure by the end, he thought I was trying to finish our relationship. I just couldn’t get the word ‘herpes’ out of my mouth. After lots of tears the whole story came out – he was incredible. I think his words were ‘is that it?’ We talked a lot about how it affected me, how it would affect us and, to cut a long story short, he proved himself to be the kindest, sweetest man I think I know. He wanted me to find him material to read so that he could support me when things were horrible for me as well as to understand the implications for himself. I found this site and he has read through the information.

I have learnt a lot from my ‘friend’ – I have learnt that if it’s not the right person then it doesn’t feel right telling. If someone truly cares about you they will accept that you have this illness and be as concerned about the effect it has on you as the effect on them. Most importantly if you really care about someone and want things to progress, you are doing yourself a disservice if you don’t tell them – it is nothing to be ashamed of.

I don’t know where this relationship will go, but I know that he has taught me self-respect, to appreciate the good things about myself and that it’s alright to get close to someone and trust them – even with something like this.

I remain very good friends with my ex-husband and we support each other – he has been a rock for me also.

*Lucy’s name has been changed, to protect her privacy.

David found that herpes doesn’t have to end relationships – it can have a positive effect

My name is David*** and I am 24. I went out with my girlfriend Maria for two years and then one day we split up and went on to start new relationships. A year later, I left my new girlfriend and after a few months, I met up with Maria again. Gradually we started seeing one another again, but without starting a sexual relationship. Two weeks later, Maria said that she had something to tell me but that she couldn’t face it, so she brought me a letter. In this letter, she explained that her former partner was infected with herpes. He had been irresponsible and had hidden the fact that he had herpes. Even though he knew he was having an episode of herpes, he didn’t tell Maria. As a result, a couple of weeks later, Maria found out that she was infected with HSV-2. Of course, this was a difficult time for Maria – finding out that she was infected with a virus for which there is no cure, especially when it is all down to somebody who has been irresponsible. Not surprisingly, their relationship didn’t go much further!

Reading Maria’s letter raised a whole load of questions in my mind. I had heard about herpes and I had always been terrified of sexually transmitted infections. In spite of this, like most people, I had sometimes had unprotected sex. Now, with hindsight, I know that I have been lucky not to catch anything…

That night, I went home rather confused. I did some research on American Herpes Foundation and started to find out about herpes. Knowing the facts helped me to put things into perspective – after all, you don’t die of herpes! After two days of reflection, Maria and I decided to resume our relationship but we knew we needed to minimize the risk of transmission as much as possible. So, we learnt to use condoms when we had sex. I had never liked using them before but we got used to using them and even found them exciting! So, from the moment we decided to have a sexual relationship, we agreed that we would do everything possible to avoid transmitting the virus. But Maria still worried that she could pass on the virus, despite all our efforts.

Several months later, I noticed some blisters near my lip. A doctor’s appointment confirmed what I already suspected – I had herpes – but facial herpes! How did I feel when I was diagnosed? Well, I thought it was a shame, but I felt nothing! No sadness … no anger. From the day that we decided to start seeing each other again, I accepted the fact that I could be infected at any time. I was prepared for the worst.

Maria found it difficult to accept that she had transmitted the virus to me. She cried a great deal, whereas I never shed a single tear. She couldn’t understand why I wasn’t more upset. In fact, it was understandable – she had no choice in the matter – she had been infected by somebody almost deliberately whereas I had been informed and had accepted the consequences.

Nowadays, our relationship is going from strength to strength. Maria has learnt to stop feeling guilty and we have learned to live with the virus. I have discovered what it is like to have such an incredible relationship with another person!

So, to anyone who is reading this excerpt of my life story, rest assured that it is possible to learn to live with herpes. It is possible to meet people with herpes, to build a relationship despite herpes. In short, nothing is impossible just because you have herpes. Sometimes I do wonder if my relationship with Marie would be different if she hadn’t had herpes. I have never been the type of person who speaks openly about sexuality but the fact that we have herpes means that we do often discuss such matters, and as a result, we go on to talk openly about many other subjects. Our relationship is built on something much more solid. It is more intimate, more real. Marie doesn’t like it when I say this, but I actually believe that herpes has helped our relationship. The important thing is to be able to talk about it to your partner. I realize that people are afraid of broaching the subject but believe me, it is worth being honest with your partner – it can have all sorts of unexpected positive effects.

* David and Maria’s name have been changed to protect their anonymity.

Support from her family and partner make Jessie realize that Life Goes On!

Hi, my name’s Jessie. I am a 17-year-old girl that has just been diagnosed with genital herpes. I do not, consider myself promiscuous as I have only ever had one partner and he’s the one I caught it from. I had always heard about STDs but I was never really interested in them or found out much about them as I thought I would never get one. I always thought that it would be the girls in school who were rumored to have slept around who would get it. Not me…well that was then.

The guy I have been with had been with 15 partners, but he has had 3 tests for genital herpes and he said the results were negative. About 4 months ago we broke up after 9 months together. We stayed friends and he told me about a girl he liked. He later told me that they had had sex twice. I knew about this girl’s reputation and it wasn’t good so at the time I warned him about her. So when decided to get back together again last month, he had another test which of course came out negative, but I was still a little unsure.

About 2 weeks ago I started to develop blisters around my genitals and it burnt so badly when I passed urine I had to hold going to the bathroom for a day and a half. I finally went to the doctor and he explained to me what I had. I thought I was going to pass out! I had to tell my parents, but to my surprise they were really supportive. Yeah, they were a little aggravated about how I caught it, but my mother is now getting as much information as she can to help me and every day my father still tells me that I am his little princess.

When I phoned my boyfriend to tell him he was really mad, but as soon as I went to see him he just ran up to me and held me for what seemed to be forever. He cried with me when I was feeling down, but we have both made a pact that we can fight it together. Even though there is no cure there is always a chance that we can be healed. Even though I am new at this it makes me really realize what I took for granted. My outlook on life it so much better now and I am more fit and healthy than I ever was. People need to stop being so negative about this disease, and remember LIFE GOES ON!

*Jessie’s name has been changed, to protect her privacy

Positive thinking and a healthy approach keep Linda on top

My name’s Linda. I’m an average 22-year old woman, living in California, going to college and working part-time. I’ve been with the same man (who I’ll be marrying next year) for 2.5 years. I’ve never cheated on him and he’s never cheated on me. Before him, I’d slept with 5 other people, with all of whom I diligently practiced safe sex. I’m not wild, I don’t sleep around, I don’t fit the “profile”…yet, I was diagnosed 2 days ago with genital herpes.

My fiance gets cold sores on his lip. One night last week, there was this tiny little spot on his lip that we didn’t even give a second thought to before oral sex. Now that I’ve been diagnosed, I’ve given a lot of second thoughts to that little spot.

At first, and I know it hasn’t been long, I thought I should feel dirty or tainted, somehow not clean. I was, after all, now living with an STD. I did feel that way for a little bit but I don’t have it now. I have herpes. This will never go away. There is no cure. Even when I don’t have an outbreak (which I pray won’t be often), it will be lying dormant in my spine. I cannot control that. What I can control is my attitude towards this and how well I take care of my body. There is no point in being angry over something you can’t change.

I was very upset with myself for having oral sex that night. But I did have oral sex – it’s too late to change that. I refuse to live my life in anger. I accept that I have herpes now. I’ve researched what I can do to keep outbreaks from coming on. I’m already eating better than before I was diagnosed! It’s ironic that I’m probably going to be healthier now than before I was diagnosed with herpes.

I’m lucky in that my fiancé is very supportive. He doesn’t see this as a big thing. We just can’t have sex for a while, so he’s bummed. But he still loves me and he’s not going anywhere. I told my parents and they were very supportive also. I didn’t want to have to live with this alone. In a way, I’m lucky. Herpes isn’t going to kill me – it’s just going to be an inconvenience now and then. There are so many worse things that could have happened.

Right now I’m dealing with my first outbreak, the one they say is the worst. After this, I get to play the waiting game to see if and when I’ll get a recurrence. When I do, I’ll take my medication and be uncomfortable for a few days.

My life will go on. I’m a happy person, content with my life… and while my life is a little different now, I’m still content with it. Being diagnosed with herpes doesn’t make someone ‘unclean’. People who view someone living with herpes as dirty aren’t people worth knowing anyway. My advice to someone who’s feeling upset is be upset, but not at yourself and don’t be upset for long. Accept what you now have. Know that herpes does not define who you are. Be healthy. Be strong. You can deal with this.

*Linda’s name has been changed, to protect her privacy