HSV-1 disclosure

[aroraborealis]

[Poll #1705763]

Comments

[spike.livejournal.com]

Now for my traditional nit-pick the questions comments:

Poll asking about HSV-1 oral or genital?
What about HSV-2 oral?
Does it matter (to anyone) whether someone is having an outbreak? (substantially more contagious)

[randysmith]

This. I will inform and avoid kissing while having an outbreak or something that I think might be an outbreak. I've been known to inform if I'm feeling extra paranoid when no outbreak suspected, but it's not my usual pattern.

[lightcastle.livejournal.com]

Thanks, I wanted to ask those.

[aroraborealis.livejournal.com]

You're right; I should have just said "oral cold sores", which is what I actually meant, and I should have clarified that I meant not during an outbreak.

[mzrowan.livejournal.com]

Wait, what do you mean by "other shared mouth activities"? I was assuming you meant "further fluid contact", but maybe you meant "sharing a fork"?

[mzrowan.livejournal.com]

Now I see that you answered that in the "if you have HSV-1" version of the question!

[moominmolly.livejournal.com]

I basically figure I'm the only person I know who is negative for both HSV-1 and HSV-2. *shrug*

[blk]

Ooh, ooh, I am too! *squeezes up on bench* :)

[kcatalyst.livejournal.com]

I was last time I checked, by I've kissed a few people since then, so who knows?

[signsoflife.livejournal.com]

I was last time I was tested for them, although the health professional assured me that there was no point, almost everyone comes back positive and we don't have a good idea of what that means.

[lyonesse.livejournal.com]

you may also have been infected and fought off the infection, and then outgrown your antibodies.

[regyt.livejournal.com]

I tend not to even think about it before kissing. I haven't been tested for it, I don't know if I have it, and it's my understanding that that is the norm. Odds are that I do, same as most other folks, but I just don't really know. If I were worried, I'd ask. If someone else is worried, I hope they'd ask.

[dpolicar]

it's hard for me to tell who I'm going to be kissing before they're kissing me.

That's kind of awesome.

At least, the interpretation of it in my head is kind of awesome. Thinking about it some more, it can also be kind of horrible.

I'm hoping you meant it in the awesome way.

[lyonesse.livejournal.com]

i'm going to assume that when you say "hsv-1" you mean "oral hsv". there are actually at least seven identified viral subtypes (melebeth was going to write something about this at some point?) with various degrees of cross-site infections and/or shared immunities.

i filled out the above in terms of "when i don't think i'm prodromal and have no sores", which is most of the time. when i feel the slightest tingle i freak out and get abreva and valtrex and don't want to be around anyone. it used to be even more of a big deal; i've actually mellowed about it rather over the years.

[lightcastle.livejournal.com]

I asked melebeth to weigh in earlier when I saw the thread spiraling. :)

[entrochan.livejournal.com]

I disclose before oral sex.

If I've had a recent outbreak or feel one coming on, I disclose before kissing.

[dbang.livejournal.com]

I'm curious why you disclose always before oral sex, but only sometimes before kissing, when HSV-1 is more easily transmitted to mouths than to genitalia?

[contessagrrl.livejournal.com]

I have HSV-1 and have since I was 8 years old.

I don't go out of my way to inform anyone of this unless I am having, or about to have, an outbreak (and yes, I can feel when one is coming on), although am open about it generally. In that case, I say something like "I have a cold sore coming on, let's not share that drink", or to a lover, "I have a cold sore coming on, proceed at your own risk", and feel perfectly okay with being told s/he doesn't want to kiss/fuck/suck/share food things with me until it's passed.

I think my relaxed nature about HSV-1 comes from having had it for SO long, years before I understood that it was an STI, and rather just this slightly inconvenient thing I picked up from my sister, who picked it up from a water fountain at school (or so the story goes).

[dancingwolfgrrl.livejournal.com]

I talk about it in the context of safer sex, where I give people the information that I have (I sometimes test positive and sometimes don't; I don't have any information on what a test below the threshold but above zero means about transmission; I haven't had a cold sore in at least a decade) and let them figure it out. With other people, my policy is to use latex for oral during an outbreak or if they can feel one coming on; otherwise, I don't worry about it, including non-worrying on testing status for HSV.

The only reason I said it's a deal at all is that I hear genital outbreaks can really suck, and I understand the desire to avoid that kind of sucking.

[darthsunshine.livejournal.com]

I don't make a practice of informing, but the vast majority of folks I'm likely to share either drinks, forks, or kisses with already know I'm HSV-1 positive.

If I'm at all suspicious that I'm about to have an outbreak, or if I'm within probably two weeks of having had an outbreak (until the scabs are completely gone), I will decline (with explanation) to share drinks, forks, or kisses.

Also, I answered your literal question about how big a deal I *think* HSV-1 is (4), but how I *feel* about it, particularly when I'm having an outbreak, is often way over on the other end of the scale. Outbreaks tend to prompt lots and lots of negative self-talk and self-thought for me; it's a thing I work on.

[snowy-owlet.livejournal.com]

My husband is HSV-1--positive, and this is his method. The minute his lip starts to tingle, we are a No-Kissing Zone.

[catya.livejournal.com]

fwiw, given that i know that most people have hsv1, what i watch out for is people who are having outbreaks. I have managed to not get it so far, might as well keep on it.

of course the person i have the most trouble with this on is my kid, but i consider it good training for him not to share drinks with anyone when he has a cold sore, etc.

[dr-memory.livejournal.com]

Pretty much all the questions need a "...if I'm having an outbreak or think that one is about to start" option. If my lips are getting that (goddamn) tingle, or if I've got a full-blown cold sore raging, I'll tell people. (Not that it's hard to miss in the latter case.)

[highwayhawk.livejournal.com]

Wow. This is a hot button topic for me. Let me share what I know and feel the best way I can.

The fact that many doctors don't like to test for HSV because it is so common gets my hackles up. If more people knew their status, less people would be concerned about it. Seems like an easy way to lessen the stigma on those few people who do get symptoms, and therefore know their status.

When someone who doesn't know their own status gets all uppity about disclosure requirements for other people who do have HSV-1 or HSV-2 I get snarky.

I do NOT like how this issue makes people who have HSV-1 or HSV-2 feel. It pisses me off.

One of the ways I've delt with this is having a rule at some of my parties that states "If you want to know a partner's STI status, you need to ask them." I'd love feedback on this.

I know my status for HSV-1 and HSV-2 based upon HerpesSelect tests. Want to mash genitals with me? We will be discussing both of our testings results.

my $0.02

[http://users.livejournal.com/_sabriel_/]

I said it in the confessional, and I'll say it again:

I encourage testing for HSV1+HSV2, IGM(new infection) IGG(old infection)

I am a midwife, not a doctor.
I also frame any positive results in a way that minimizes stigma and with words that give hope, not judgement. I make a point of discussing healthy sexuality, and the fact that although this adds a conversation (that should have been a part of their conversations with their partners, anyway) that they will still be able to enjoy their partners and enjoy sex in light of the results.
We discuss how to approach outbreaks, and how to navigate difficult conversations, social stigma, and the prevalence of HSV in society.
ALWAYS in a respectful, open manner that tries to mitigate the despair (and shame) that I often see reflected on their faces when I share positive results.
And ALWAYS with words that let them know that they can, and hopefully WILL enjoy a healthy sex life in the future.
thanks for listening.

Why so few HSV-1 positive people?

[sandhawke.livejournal.com]

Any theories about the difference between the 24% HSV-1+ above and the 50-90% I hear quoted by medical professionals for adult Americans?

Is it that people don't get tested? Or is this population atypical? (ha ha ha.) Or ... what?

I'd be interested in seeing the results of a poll to draw that out.

What is your HSV-1 status:

[ ] positive, according to a blood test or swab of an active lesion

[ ] positive, I assume, because I get cold sores (but I haven't had a medical test to confirm it's HSV-1 instead of HSV-2)

[ ] negative, according to a blood test in the past five years

[ ] unknown/other

Re: Why so few HSV-1 positive people?

[sandhawke.livejournal.com]

(Don't try to reply with data here, there wont be enough results to matter. Maybe aroraborealis will do a followup real poll, at some point.)

[dbang.livejournal.com]

Fascinating.

Seems that very few people with oral HSV-1 give much thought to disclosing, and few people without it care.

If you put up the same poll with genital HSV-2, I bet you'd see dramatically different results.

I wonder why?

[sandhawke.livejournal.com]

Stigma?

People are stupid (irrational)?

Yeah, from what I've heard, there's not much rational basis for such a difference.

[catling.livejournal.com]

As posted in the confessional, I found out I have HSV1 a year and change ago. When I first found out, I disclosed to everyone, posted about in my livejournal, made sure to tell everyone I'd kissed recently, etc. The general response was, "Yeah, so what?" One or two people thanked me for telling them and assured me it wasn't a big deal, most people were like "why are you even telling me this?" So, for a year or so I stopped disclosing, and due to the vagaries of my schedule, I mostly just dated the partner in question and didn't smooch anyone else.

Recently, starting to get out there again, I revisited this in myself, and seeing a friends post about their struggles with HSV2 and how betrayed they felt that the person who gave it to them didn't disclose, I started to feel funny about it, and guilty, and yeah, I know HSV2 is not HSV1, but still.

So, now, I disclose. Because it seems like The Right Thing to Do(tm). From the other responses here, and elsewhere, it's clear that there are strongly divergent opinions on this. In my case, I'm still figuring out what an outbreak feels like. I think it's the tiny little sore spots I get at the corner of my lips that I always thought were just chapped lips. But since I do not get obvious cold sores, I'm not entirely sure when I can transmit, so it feels unethical to not disclose before kissing someone, and I most assuredly would disclose before giving oral sex. Maybe fewer people will kiss me because of this. I sure hope not, but if that's the case, at least I will know that those who choose to kiss me (or ahem) are doing so with full knowledge of the health risks.

There is a rare condition called eczema herpeticum that apparently can be dangerous when you add HSV1 to the mix. You don't know what someone's health situation is, and there are some cases where HSV1 may not be a big deal in your life, but can cause complications in the other person's life. There may well be other situations where HSV1 could be a more serious problem for the other person than I am aware of, so I don't have the right to make that choice for someone else, methinks.

Like one of the repliers, I am trying to handle this by making it well known so that the people around me know what the deal is and can make their choices without too much awkwardness around the topic, but meh, given a choice, I'll disclose to be sure. Maybe make a cute button to wear to play parties, dunno.