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My thoughts after 5 years being HSV+


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Hi with all of you,

I am new to this forum. I just wanted to share my thoughts after 5 years of having HSV-1 and HSV-2. I would like to say that I appreciate this community and how fantastic is the support offered in this forum. I like the tools and skills that this website offers to cope better with the diagnosis and the condition. However, I would like to share some of my thoughts I have from my perspective. I would say that having it does not affect me. Of course, I get sad when I am rejected, it hurts; but I would say that I deal with it well. Psychologically, I am not going to lie. The only problem I have is when I have a very painful outbreak, I go to the past and remember how the girl that disclosed it to me after 3 months of dating told me smiling: “Even if you get tested you won’t know if I gave it to you.” Other than that, I accept it and deal with it very well. I do not get sad, anger, or depressed. I also deal with the breakouts, I get nerve pain and a couple of painful blisters 3-4 times per year. I just want to say that I do not want to discuss stigma because I agree there is stigma, but here I go with my thoughts:

1. Disclosure: It’s just a skin condition.

Well, I know that a lot of people here comment that it is a skin condition. I agree that for the VAST MAJORITY it is, in fact, an annoying skin condition; however, there are people that really suffer with it. I am one of those. The nerve pain I get is painful. Sometimes I would prefer to get the breakout instead of nerve pain. Sometimes the breakout happens, and I thank for it instead of having difficulty to walk for 2-4 days and having to sit down pretending that everything is fine. The first year is the worst and symptoms tend to get better after that. Not really my case. I would say that it improved 40%, but it is still painful. By the way, I do not want advice of what to do with medications, supplements, or a healthier lifestyle. I have tried everything, and I already know my triggers and the things that help me. I don’t like to say that it is just a skin condition, I prefer to say that each person owns his or her own herpes.

I see that a lot of people here share their experiences about disclosure, explaining to their possible partners the overrated stigma about a skin condition. I never say to my possible partners that it is just a skin condition. When I share this information about herpes, I say: “Look. 80% of people who have it do not even know. They are asymptomatic or the symptoms are so mild, that they do not even realize it. For most people (the vast majority) that are symptomatic, they experience it as a skin condition. However, there are people that get 2-4-6 outbreaks per year and symptoms can be different. I do not want to lie to you. It will depend on how your immune system responds. I experience it in this way.”

I disclose in this way because I feel guilty if I do not say it. I feel that I am lying. For me it is a skin condition and a nerve condition, both painful.

2. Everybody has herpes. Herpes is herpes. HSV-1 and HSV-2 can happen in either place, in the oral or genital region.

Well. When we begin to get familiarized with the condition and we make research, every person in youtube that shares it says “herpes is herpes. It’s the same virus, just in a different place”; but I think like this: “Yes, everybody has herpes, but HSV-1, not HSV-2”. "Chicken pox is herpes. Mono is herpes. There are 8-9 different herpes viruses."

For me. Yes, HSV-1 and HSV-2 share 80% of the DNA and they present in the same way; but they are also different; and it is important to know the differences:

            - You can have genital herpes, but lucky enough to the nicer one: Hsv-1. The average of breakouts per year of outbreaks is 1.2 per year in symptomatic people with genital hsv-1. The average of breakouts is 3-6 per year in genital Hsv-2.

            - Hsv-1 is super common. 67% of Americans have it (80% according to this site) and Hv2-16%. People get oral hsv-1 in their childhood, normally with the kiss of a relative. So, if your partner already has oral hsv-1 and you have genital hsv-1, getting hsv-1 genitally is unlikely because your partner already has protection to get in another place. So, if it is that common, I think disclosing genital hsv-1 is easier. Two of my partners decided to get tested before having sex, they got positive for Hsv-1 and they did not even know it. I also did not even know I had hsv-1. I am asymptomatic with Hsv-1. I assume it is oral.

            - Genital hsv-1 viral shedding is low (1-3%). Transmission of genital hsv-1 genital to genital is unlikely. The transmission is with oral sex.

            - Getting oral Hsv-2 is extremely rare, just 1-2% of oral herpes is Hsv-2. Hsv-2 really likes the sacral ganglia. So, I don’t agree when people say, “you can get either type in either place”. That is not true for me.

            - If you get oral hsv-2, people get one outbreak normally and that is all. Hsv-2 does not really like the trigeminal ganglia. Viral shedding of oral hsv-2 is less than 1%. You should be really, really, really, but really unlucky to get oral hsv-2 from a kiss.

So. I have hsv-1 and hsv-2 and I do not think that herpes is herpes. I think that yeah, hsv-1 and hsv-2 are fraternal twins instead of identical twins. They are a lot similar, but they are also different. I know some people will say “I have genital Hsv-1 or oral hsv-2 and I get several outbreaks.” Still, it is rare. I do agree there is stigma because hsv-2 is sexually transmitted, but yeah, there are important diferences as well. 

3. Herpes as a relationship filter. If he or she does not accept you, they do not deserve you. You deserve better.

Well. I do think that yeah, it can be a relationship filter to avoid partners that just want sex, but not always. There are good, nice, and kind people that will reject us; and we are going to have to accept it. There are people that can understand very well the virus, be open, and like us a lot; but they can also choose not to be with us because they do not want to deal with the anxiety of having the precautions, or deal with the symptoms if they become symptomatic. In two occasions, I met really nice women that really wanted to be with me. They told me they liked me and that they wanted a relationship with me. They took their time. I explained everything. They were open. They told me they liked me immensely. However, they told me after a couple of weeks that they did not want to take the chance even though they wanted to be with me. One of them cried. Ohhh boy, that hurts like shit until now.

So. I understand the idea of herpes as a relationship filter. It applies to most cases (I think for hsv positive women more), but not all the time. I do not blame those women for telling me “no”; I think that they truly liked because of the person I am; I do not think they were immature. I think that they are nice, educated, good, and kind women. In fact, I did not feel judged or discriminated for having hsv-2 by them, never. With the woman that cried, I felt we were soulmates. She even told me the same.

With this, I just want to say that it’s nice to think that it is a relationship filter, I had experiences where I thanked having herpes to avoid women just interested in other things of my life and not for the person I am. However, these two times I really had to accept with all my heart that it is okay to be rejected by wonderful women; and accept that having herpes was the reason. I say this because there are people nice people that do not want to have herpes, and it is okay. Sometimes I feel this website blames all people that reject hsv+ people. Some people should not be blamed.

I talked to my friend one day, he shared with me that he met his soulmate, but she cannot have kids. He told me he loved her, but he does not imagine his life without having kids because his dad died when he was a kid, and he always thought about being a good dad; and that it is difficult to him to consider the idea of adopting. He told me he ended the relationship and that he has cried for a month. My friend is a nice guy, and I cannot blame him for his decision. The way he thinks is okay. This is a parallel I can think with herpes.

4. Disclosure: transmission.

When I disclose this part of herpes I say: “The virus works like this. It is skin to skin contact Std, not by fluids. When I have symptoms of an outbreak, I can tell you and avoid sex (normally for 15 days to be sure). That is the period when I am most contagious. However, there is the viral shedding when I shed the virus even without symptoms. It happens between 15% and 30% of the time. The tools I have to take care of you are a daily medication that reduces the viral shedding to half and condoms that also reduce another half. I feel empowered by these tools, but they are not perfect. The chances of you getting the virus is 5% per year if we take these precautions and have sex two times per week. That decision is yours. The woman that gave it to me knew she had it, and she did not disclose it to me; and I am not that kind of person. I can promise that I will always be communicative and try to take care of you, but I cannot promise you that you will not get it 100%. It is up to you how you want to have sex.”

All the times I disclosed, I received respect and admiration for being honest. There were different situations: women that did not care if we used a condom; women that did not even want to use a condom; women that were afraid and still had sex with me; women that rejected me kindly; women that just said “no” with respect. I would say that I have been rejected 40% of the times. (Since the diagnosis, I have been with 12 women. I always disclosed).

I have transmitted ( I don't care about using the word infected) the virus to three women. I know for sure that 5 did not get it because they got tested after we ended, and they contacted me after months to tell me they were negative. The rest I cannot know. Three of them were hook-ups and never talked again. One of them does not want to now if she has it unless she gets symptoms. Even though they accepted it, we took precautions; I felt like shit every time I transmitted the virus. One of them is my actual girlfriend. She gets mild symptoms and she never blamed me. She hugs me every time I have an outbreak and tells me “even if I know I got it from you, I love you. I love to share this with you”. When she gets an outbreak, we laugh. I say “Fuck you, you mild asymptomatic. You don’t know what having herpes really is. I do. Are you sure you have herpes?” I think she is my soulmate, but I also wonder sometimes what if I had been with the woman that rejected me. 

I share this because there are people in this forum that give optimistic hopes that transmission can never occur. People that say, “I am with my partner 2-6-8-10 years and he or she is still negative”. I am glad and happy for you, but it is important to know that according to academic papers, transmission in most cases occurs in a period of 6 months to 2 years with precautions. Also, I read people that says “10-20-30 partners and I have never transmitted.” Well. When I read this I’d like to ask: “Have your 10-20-30 partners been tested? Just because they don’t show symptoms, it does not mean that they don’t have it”.

So, I have always made sure to my partners that transmission can happen. Even though these two women accepted it and we are friends. Sometimes I get sad thinking that I changed their lives, and that they don’t have the same sexual freedom (I accept that after diagnosis the sex life does not end, but it changes). I think that herpes is not the end of the world, you won’t die of herpes, but I do think that it is life changing. Going through the process of accepting, dealing with it, disclosing it, having sex in a different way can be tough. Every time I disclosed, even if I accepted it and had no problem, I always felt vulnerable, anxious. Several times, after having sex, I thought that I gave it to my partner and that I did not want that to happen.

CONCLUSION

I wanted to share this with you because I feel completely okay with the way I think and how I deal with herpes. I made therapy, several therapy about my problems and herpes. I like the concept of “radical acceptance”. It helped me a lot. It means accepting things the way they are and do not judge. I accept I have herpes. I cannot change that. It happened because of decisions I took and decision the other person took. I see the virus the way it is: that it is life changing; that it also taught me a lot of good things; that transmission can occur; that I can be rejected by nice women; that if I hadn’t, maybe I wouldn’t have met my girlfriend; that I am unlucky with the symptoms; etc". So, yeah, I just wanted to share how I think; that I see herpes the way I see; that I accept how people deal with it in different ways psychologically; and that sometimes I disagree with some ways people deal with it. Thanks for reading all this long thing. I’d like to know if some people think like me. Sorry for my English. It is not my first language. 

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  • 2 weeks later...

Thank you for your very honest and candid posting! I feel the same way and have expressed that here in the past. I very much agree with not downplaying the chances of transmission with potential partners and personally don't use statistics when explaining because I think people want to believe it won't happen to them.  In fact I've had partners who go on to do their own research and tell me how the transmission rate is very low and I always make sure to tell them that they can get this at any time, that it is always going to be a risk.  I believe I've passed it twice in long term relationships; one of which we always used a condom (I also discuss this and it does have a sobering affect on the person I'm talking to).  So I always want partners to have a realistic idea of what they are getting into, or at minimum, I don't want to play a part in minimalizing the risk. I have had very little in terms of rejection but I also take my time in dating a person first and that leads to bonds and trust so I think that helps.  I also feel that once I hit my mid 30's the men I've dated have a different mindset about what's important in the big scheme of things, I know I do!

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Thanks for your comment. 

I think a lot of psycholgy plays a big part on it; and it depends on every person how to do it. 

In my case, I experience symptoms in a way I don't approach it as a skin condition; probably that's why I don't disclose talking about an overrated skin condition. It is not a bid deal, but I don't want to make a woman feel regret if their symptoms are like mine or worse.

I agree with you, it is important for the partner to really understand the virus. I feel that their decission should come with a good knowledge of the virus. I think it should happen to some people that they accept it and after they do a deeper research and change of mind. So I don't want that to happen. I liked your phrase "I don't want to play a part in minimalizzing the risk". I'm glad I found someone that shares the same with me. 

Regards, 

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  • 4 months later...

Yes, I've thought of a man's mindset, as well.  I'm 63 and do not date and haven't for many, many years (before I even knew I had HSV) because I got sick of getting my teeth kicked in all the time.  After a while, the rejection messes you up.

But, I still hope that someday I could actually have a nice relationship with someone and that the men in my age range will "have a different mindset of what's important, as well.  My age could possibly be in my favor, but of course, I cannot be sure.  I just have hope...'cuz it's all I have.🤞

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@My thoughts

Hey!! ☀️🍀

First, I totally respect this post. Heck yes, herpes is a viral, painful, and overall 'yucky' disease. Trust and honesty is KEY. I love the term "radical acceptance" also and it has helped my friend and I immensely.

Something I always disclose to people is that I can give it to you ALWAYS. Not just with outbreaks. It's ALWAYS there. And frankly, that's biology. Cells and viruses are sassy creatures, but they don't determine who we are. We are SO much more than the herpes we have! ❤️🍀🌼

Your insight and honesty really is awesome, and thank you for that. May you be blessed with goodness, and may the truth always come forward! 🍀☀️❤️

Sending love and light!!! ☀️❤️🍀🌼🌄🌈

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Great post. I wish I had read it a few months ago. 
I disclosed to my ex before we were together and I absolutely honestly believed if we were careful - that he wouldn’t get it.
I’m mostly asymptomatic and have only had mild outbreaks - so I thought the chances of him getting it were small. That said it was always on my mind because of how much I cared about him. 
I took daily medication and we used condoms every single time. There was probably like a 2-5% chance he would get it and he did. And obviously he is  so upset. 
I can not explain how bad I feel for passing it to him him as it is life changing as you say - and not in a good way. 
I know he will have to tell any new partner and will risk rejection and hurt and I feel I let him down badly. 
I know it is ‘just a cold sore’ (for most) but it affects mental health more and that’s what I struggle with. 
thank you for your frank and honest post!

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