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PenGirl

gHSV1: do you disclose?

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PenGirl

This thread is ONLY for people with ghsv1 and is NOT another judgmental debate about disclosure. We're all tired of that so please don't hijack this thread.

I'd like this to be a place where those of us with ghsv1 can calmly and nonjudgmentally discuss whether or not we disclose, in what circumstances we might disclose or not disclose, etc. I hope to get an idea of how many people are actually disclosing vs. not disclosing.

Here's a good blog about the ghsv1 disclosure issue:

http://loveinthetimeofherpes.blogspot.com/2008/06/type-1-to-tell-or-not-to-tell.html

I'm trying to create a poll to go along with this thread but we'll see how that goes since I'm pretty much a technical imbecile.

As for myself, I have ghsv1 and so far I've been disclosing but am completely on the fence and don't blame or judge those at all who choose not to disclose their ghsv1. All the people I've disclosed to have advised me not to disclose in the future; all the people I know with oral hsv1 or who've tested + for hsv1 but don't know where in their body they're infected don't disclose and doctors seem to support that; about 80% of the population already has hsv1; and I'm not sure it's our job to play along with the double standard that we're supposed to disclose just because the virus appears on our genitals, especially since ghsv1 is milder and less transmissible than oral hsv1.

So, ghsv1ers: do you disclose? Are there times when you do/don't/would/wouldn't? Can we at least vent here about the double standard? :madd:

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PenGirl

OK, poll is at the top. I believe the votes are anonymous but everyone can view the results. Thanks!

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krazynbeautiful07

I’ve had GHSV1 for almost 2 years now. I found out 8 months into my previous relationship and since then have only had one person that I’ve been intimate with. I disclosed to him before we were having sex because I feel like it’s a matter of trust. If I had never told him and he got it from me (even though yes I know the chances are not as high but even the slightest chance can still happen) then I would feel like I wasn’t fair to him and almost tricked him just because I would think I had control over something that I only have so much control over even with protection and meds. Plus his feelings towards me knowing that I wouldn't have told him would be quite negative and take away any trust there was previously. Even though I got my H from a person who has cold sores (which apparently neither of us knew about the transition that could happen..I didn’t even realize he had cold sores) I wish I would have had the courtesy of him telling me he had it. Bc at least if he had told me we could have made slight but significant changes in how we did things in our sex life that I believe would’ve prevented me from getting GHSV. I read the other post that you’re talking about and that was really the first time that it occurred to me that there totally is a dbl standard when it comes to oral herpes vs genital herpes disclosure expectations. Even myself I don’t know why but I feel like when it comes to getting genital herpes there should be more consideration for disclosing than there is for oral herpes. I think maybe that has to do with the intimacy involved with sex as opposed to kissing…I don’t really feel right saying that I think one is more crucial to disclose about than the other bc it does suck that theres a dbl standard and that means I guess I’m partial to it. Idk I haven’t fully processed the thought of when someone with cold sores would disclose but I’m totally open to hearing what ppl have to say about that so I can get a more rounded viewpoint on that. Its just too bad there isn’t more information out there to begin with (like in school) bc I think part of my thing too is just that ppl don’t associate cold sore with herpes even though they are and I think that’s probably the big issue with whether or not its being disclosed. If more ppl were aware (bc I’ve found many are not) that cold sores are indeed herpes I think it’d help to reduce transmission and the prevalence of it in society. Then maybe it wouldn’t be looked at in the stigma that it is. Heck I disclose to ppl that I’m friends with just to be able to spread more information on it and make it known that its really not as scary as society wants to make it out to be by hopefully being a positive role model of someone who has it and has a arguably happy life. Sorry I went kind of on a rant here, I may have gotten off topic a bit. Not trying to cause unwanted debate if that happens..I just only really have you guys that can relate to me on the whole having H thing so this is where I get out my thought processes on it.

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Acesheart

I agree with you.there is double standards, but it truly is a personal choice and huge trust issue. Hugs Acey

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ehbeedub
I wish the person who genitally gave it to me would have disclosed.

From what I've read of your story, it seems like the person who infected you was generally uneducated about her condition (had been told in the past that since her blood test was negative she didn't have it, that she couldn't pass it on unless she was having an outbreak, etc). I think it's a different situation for people who are on antivirals (though this isn't even really necessary for GHSV-1, since shedding rates are around 3% on average) or at least use condoms and are aware of their condition.

I have yet to be formally diagnosed with GHSV-1 but if I get that dx down the road, I feel that I would disclose simply because I'd feel guilty if I didn't, and I feel confident that explained the right way, the right person would agree that the risk is minimal and therefore unimportant.

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PenGirl

Thank you everyone for your comments and poll participation.

One of the hardest things for me when thinking of disclosure is the double standard and the general ignorance about oralhsv1. I've been to 3 doctors and 1 NP about my hsv1 and not one of them suggested I might've contracted it from unprotected oral sex. Instead I heard things like, "Well I guess herpes can get through condoms then?" (OMG, they've been telling people condoms protect from hsv???). When I told them all I got it from unprotected oral with someone who gets cold sores, they all seemed surprised. I actually informed one of them that oralhsv1 sheds more often than ghsv1.

I have a lot of anger at the medical profession right now because they're encouraging ignorance. I wish there were statistics somewhere that showed what % of ghsv1 was caused from oral hsv1 vs. ghsv1! From the articles I've read there does seem to be a general understanding hsv1 is usually spread through oral sex. I'm just not sure why that info isn't getting out to doctors and the general public. I agree with Krazynbeautiful that this should be included in sex ed. I'm guessing doctors/schools don't want people to feel badly about their cold sores, seeing as most got them as children and a majority of the population has hsv1? Now there's a bad reason to not disclose: don't want to make someone feel badly.

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bob12

ehbeedub, you are correct in that she was very misinformed. Had negative IgG blood tests and was told she was negative, even after she'd cultured positive years earlier, thought she couldn't pass it when not in an outbreak, thought she was cured, etc.

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TigerLilly

I do disclose but sometimes I think of not disclosing. There are logical reasons why not to. It is the same as cold sores and people with cold sores usually do not disclose. You're more likely to get it from people who don't know they have HSV than those who do because those who don't know won't protect themselves while those who do will.

I disclose because I'd feel guilty otherwise. One would assume I care about the guy I'm dating so I couldn't lie to him like that. And the guy who gave it to me was the first guy I ever slept with who was cheating on me at the time. If he had disclosed to me I actually would've rejected him, not even because he had HSV, but because he was cheating on me.

I have thought of not disclosing and then if he does get it to say I didn't know I had it. But I don't think I'd actually ever do it. At least not that I can see.

For people who choose not to disclose, it is again a choice as so many things are. It's also a 2 way thing. If the other person wants to be really safe that person also be responsible and ask if he/she has anything. Also make sure he/she gets tested before. Most people don't ask before engaging in any kind of sexual activity and think about it afterwards. But they also have a responsibility to themselves. As we all know, not everyone will disclose or even know they have it to disclose, so the other person is also partially responsible.

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someguysomewhere

Really been arguing with myself on this point. I consider myself a good person all around and I do think it's being irresponsible and not fair to not inform someone. The flip side being nobody told me, nobody informed me condoms weren't actually that spectacular for protection. Had no idea herpes could be a thing without symptoms. Then it all comes back to the girl I felt obligated to tell when I found out a week after we slept together, she talked to me when I said I was getting tested but hasn't since I got a result. Honestly I just don't know.

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SteveP

People say that "well some people with oral hsv1 don't disclose..."

Ya know what, virtually nobody mentions that "cold sore" they had when they were seven or two years ago. Society is cool with not making a big deal out of "cold sores" and doctors don't even use the H word for them (neither does abreva), nevermind recommending having to have the burden of having this heavy talk with any future partner. All this when the oral location is so much more contagious and recurring than the genital location. I mean, it's said that 75% of people with ghsv1 are not even contagious ever outside of symptoms. And most people who know they have it, only get one initial outbreak. Plus most people already have the antibodies. Additionally, this type transmitting g to g is basically unheard of.

I say there is no need to even bring it up if you don't want to. On top of everything else I listed, you even have some protection to use with a condom. Can't really be said for your mouth (and let's face it, nobody uses protection for oral or kissing). Pretty much the worst that you ever could potentially do, is give someone the cold sore virus orally, which most people will test positive for by adulthood anyway. Just don't engage in oral sex with someone new until you both get tested together if getting serious. That way you'll know if they already have the antibodies themselves and it'll be a way to talk about it (i.e. "well I guess it could be anywhere in my body").

The blog post in the OP sums it up perfectly. I've seen it before. Ghsv1 and 2 are not the same thing, and do not carry the same moral implications. I'm positive I'll catch flak for that, but it's the truth and I don't care. Don't let people judge you on here for your decisions on ghsv1. The truth is that the bad reactions you'll receive far outweigh the actual possibility of passing it (especially genitally), which is basically nil.

Flame away...

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PenGirl

Thanks, Steve. You'll get NO FLAMING from me OR FROM ANYONE ON THIS THREAD. This is where we can say what we want without judgment or having it degrade into the old debate of whether or not it's ok to disclose. Personally I've been disclosing because I realize I'll feel guilty if I don't, and also because so far it's worked out fine for me, no rejections. Yet. But I just stupidly disclosed to a guy who's never been tested for HSV and has no intention of getting tested for it. He is "thinking it over," which really irks me seeing as chances are he's HSV+ but doesn't want to find out. Am I really expected to disclose to the A-holes who refuse to find out if they have it themselves? Starting to not feel so guilty.

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SteveP

PenGirl, have a you ever taken a look at this thread? It's long and will take a long time to actually read. A lot of good discussion there though. The dude "gnaf" figured he had type 2 by the way, but ended up only having 1. As seen here.

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bob12

Good points SteveP. I don't necessarily agree with the genital transmission of HSV1 being close to none. I could be a rare case I guess. I picked it up from one-time genital only sex with someone with no symptoms and positive for about 6 years. I think this myth is compounded by the fact that many doctors call herpes of the genitals type 2, mine did until I asked for a type of the culture. I would guess there are a fair amount of people out there with "type 2" who are really "type 1". Add to this that, I believe, you can still catch GHSV1 if you have OHSV1, you just may not even notice symptoms severe enough for you to suspect it.

I also know of no PCR swabbing type of studies for GHSV1, I don't know if anyone really truly knows how contagious it is, or is not, outside of symptoms.

All the rest is probably true. I don't know what to think about disclosing. I know the girl who gave it to me felt like absolute sh*t when I called her up and asked her if there was anything she hadn't told me. That conversation might be worse than "the talk". She was a good friend and I felt betrayed.

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2cute2talk2u

Ok. I am very new to this hsv genital 1 world. I am young. No one my age uses condoms.. I know that it is not good but, it is just my generation.

I have not had an outbreak since my first one 8 months ago.. up until yesterday. It is kinda bad already.. great way to start my week.

I am seriously so scared to think that I might have given this virus to a man three days ago.. we didnt use protection. We have been having amazing sex for the last four months and never used protection. Saturday night we had sex, I didnt see any signs. We again, used no protection. Monday morning, I noticed a major problem with bumps down there. Very scary to see this again 8 months later. I am a nervous wreck thinking that I gave this virus to him. But, I dont think I will ever disclose. If I am staying abstinent during my shedding period when I am contagious, then why would I tell someone the most humilating deepest secret of my life?

Question: condoms dont protect???

What did everyones second outbreak look like down there? I heard it is supposed to be less painful than the first. I need to brace myself for what is to come. I am sorry for such blunt information but, I am young and scared and have never told a word about this to a person in my life. I need your guys help. :(

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SteveP
Good points SteveP. I don't necessarily agree with the genital transmission of HSV1 being close to none. I could be a rare case I guess. I picked it up from one-time genital only sex with someone with no symptoms and positive for about 6 years. I think this myth is compounded by the fact that many doctors call herpes of the genitals type 2, mine did until I asked for a type of the culture. I would guess there are a fair amount of people out there with "type 2" who are really "type 1". Add to this that, I believe, you can still catch GHSV1 if you have OHSV1, you just may not even notice symptoms severe enough for you to suspect it.

I also know of no PCR swabbing type of studies for GHSV1, I don't know if anyone really truly knows how contagious it is, or is not, outside of symptoms.

All the rest is probably true. I don't know what to think about disclosing. I know the girl who gave it to me felt like absolute sh*t when I called her up and asked her if there was anything she hadn't told me. That conversation might be worse than "the talk". She was a good friend and I felt betrayed.

You've never had someone go down on you, bob? This coulda been from one of those times...

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bob12

It most definitely was not from one of those times. This sounds like a MedHelp response. :) I was with someone HSV1 positive, had genital only sex, had symptoms about 11 days later. I'm pretty confident it was from that. :)

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musumegirl

Well I have always disclosed, never been rejected, and was always told "why do you bother saying anything? Everyone has hsv1"

But, I recently decided NOT to tell someone and have been grappling with a heavy conscious ever since. Realized, that regardless if it is perceived as a big deal or not, its important to me to tell. Or else I won't ever feel okay about it.

I have had ghsv1 for almost 5 years-symptom free for 4.

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hc287

I'm glad someone bumped this thread. I haven't had to disclose yet because I am as single as it gets, but sometimes I find myself wondering if I should or not when it happens. I feel like I'll have to because of a guilty conscious. But in all honesty, if I were to pick a guy up at the bar and it just started happening, I might not. I don't plan on doing that anymore though. I feel like karma would bite me in the ass at some point if I don't disclose

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Tiffhanne

I got diagnosed with ghsv1 when I was 21, from a guy i was seeing for a long time who didn't know he had it.

I was upset but not angry at the guy because we both consented to having unprotected sex. As far as I know, I contracted it genitally. Everyone talks about the risks being small, but I think about how easily I contracted it, and that weighs pretty heavily on my conscience.

Since then, I've slept with a few people, only one semi seriously, and I'm only now starting seeing how it affects my sex life. I'm now 24, and possibly ready to be a bit more serious in relationships, but the fear of having "the talk," causes me severe anxiety. At my age casual dating / sex is such a common occurrence, I just don't know how to speak about it with casual sex partners. I've recently had condom" sex with a new guy I'm seeing and I'm now consumed by the morality of what I'm doing and how to bring it up, when the relationship is nowhere near serious enough.

I think in short, I consider myself to take the moral high ground with most decisions in my life, but this has been one area I grapple with daily. Why would a non infected person take the risk during casual sex, when casual sex is relatively easy to come by?

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SadOne

I was diagnosed with ghsv-1 within the past few weeks (culture). My new boyfriend, who we both assumed gave it to me, tested negative (blood test). He's retesting in a few months. But we went through this together so I never had to disclose. Since then I've debated what I would do and have no clear response. On the one hand, I feel that I now have the burden of knowledge and that by not disclosing there is an intent to deceive. On the other, with 80% of the population having hsv1 and 20-25% having hsv2 with approximately 80% not knowing they're infected, I think that anyone having sex nowadays needs to assume the person they're with has herpes and protect themselves.

I am stunned at how little I knew about herpes before my diagnosis. I didn't know how prevalent it was, how easily it's transmitted, and how people can have the disease and never know (thereby never able to inform their partner). I feel that more education needs to take place regarding hsv. It's been quite a few years since my junior high health classes, but it would behoove us to educate our youth on this. I think that we would see a reduction in transmission and more open dialogue if we began these discussions and provided accurate information sooner.

But I digress, what it boils down to is that I feel I would have an obligation to disclose now that I know I have it to future partners I'd like to have a future with. However, I'm not confident I would do so if it were a casual fling with no future.

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WilsoInAus

Are you sure your partner had the right blood test? What was his IgG antibody result for HSV-1?

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SlickSpur

I always disclose and haven't been turned down from it. It's all in how you present it!!! And I give all the facts, good and bad.

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rainprincess64

I used to tell every partner about my gHSV-1 status because of the possibility of transmitting and felt "it was the right thing to do". However, I thought about it from a different perspective when the last encounter of sharing with a sexual partner resulted in the guy telling one of his friends... who had the balls to message me on Facebook he was interested in dating merely because of his gHSV-2 status and not wanting to disclose with non-infected potential sexual partners! It made me wonder "what good does it do to actually tell the person with whom you're about to (or already have in some cases) have sexual relations?" In a sense, you may actually be doing them a disservice. Why do I say this? You are giving them a false security blanket that a. they are somehow less likely to get it all of the sudden because they're now aware of the fact you have it, and b. that they may or may not have herpes themselves. Even for those who choose to not have relations with you because you have herpes 1 or 2, you did that person a disservice in thinking they got away scape-free and are therefore off the hook.

The reality? That person may have it themselves and not know it, or may get it from someone else who does not even know they have the virus in their bodies anyways. In a sense, you gave that person a false sense of security in your deluded sense of self-righteousness in you must disclose a virus you have in your body that won't go away anytime soon with the possibility of a "cure" being created down the road.

At first glance it does seem like it's the moral thing to do, to "disclose". What are we saving ourselves and others from exactly? Is it at all possible that it could in fact be the wrong thing to do, and this is one of those cases where being counter-intuitive is the best approach? Are we also supposed to tell someone we may have kids with that heart disease, breast cancer, and drug abuse runs in the family? Must we tell everyone that we get acne breakouts (no not cold sores but just acne generally speaking) or terrible diarrhea (say with IBS or other gastrointestinal-related issue) when under a lot of stress? After that guy messaging me and whatnot, I have to admit I was rather mortified. I didn't care he knew I have gHSV-1 but the fact it was used against me by someone I never actually met is what got me. Herpes was never thought of as a STD until the pharmaceutical companies made an antiviral drug deeming it a disease, when the reality is that it's a skin condition.

Yes, I have been dating someone for about 8 months who doesn't know I have HSV and quite frankly doesn't need to know. It doesn't make him anymore or less likely to get the disease quite honestly, and for all he knows he may have it too and not realize it. Besides, why should the select few people who know their HSV status be supposedly obligated to tell all sexual partners when it is the ignorant people who are the ones spreading it anyways? Bash me all you want (even though this specific thread is meant to be judgment free) or think I'm being amoral for not "disclosing". I will say that I actually believe it can actually be the immoral thing to disclose, whether the person is with you for the night or for the long road.

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