Wishing I could be more confident of the herpes stats and health risks

[dani]

I had a conversation with my aunt that made me feel like crap and kind of made me call into question all the positive reinforcement about this condition that I've read on this forum and elsewhere. I was just describing my disclosure strategy to her, in which I would tell women that I have herpes, that outside the stigma about it's really a manageable skin condition, that the odds of transmission are pretty low as long as we use condoms/I'm on Valtrex/avoid sex during outbreaks.

 

My aunt said, "How can you say it's 'pretty low'?" and said that, outside the stigma, herpes really does have serious health effects for some people. I told her that "pretty low" was what my Doctor said about the odds of transmission, that the studies I've read online agree with this (the one on this board puts the rate of transmission at 2.5% per year of intercourse from male to female, another 2004 study found only 1 transmission per 223 couples in a year, using Valtrex and condoms), and of course there's anecdotal evidence of many couples/marriages where partners have gone years without passing it. But my aunt said, if it's so hard to transmit why do so many people have it? She had her own anecdote about a couple she knew who were married 20 years without passing it, but then eventually the wife did get it and it became quite physically painful for her. I told my aunt that while there may be a few who experience severe symptoms, by far the majority don't, hence why 90% don't know they have it. And my aunt said she thought the 90% figure was bullshit and that we really don't know how many people have it and how easy it is to transmit since so many doctors don't test this kind of thing... but that she thought me telling potential partners that the odds are low of them catching it would be a lie, since I can never really know when I'm shedding; similarly with saying that it's not a big health risk, since in her estimation a significant number of people do have these severe health-threatening outbreaks.

 

I really want to believe that herpes is not a big deal, that it's something overstigmatized, that it's unlikely though not impossible for me to pass it as long as I take the proper precautions. All of the positive reinforcement I've read on this site and elsewhere suggests that's the right attitude, but when I have conversations like this one it just makes me feel like I am a really serious health risk that it's wrong for me to ask others to take.

[optimist]

@dani I think much of what each of you said is true. It is just a skin condition with a ridiculous stigma, odds of transmission are low if you take certain precautions, lots of people have it, you can't know when you're shedding, most people don't know they have it, some people do have significant symptoms. All true.

 

I'll tell you how I deal with this. When I disclose, I stick to the core facts of my own situation. I disclose that I carry HSV2, one of the viruses that causes herpes. I share that I'm on antivirals to reduce a small risk of transmission to a smaller risk of transmission. I offer to answer any questions they may have. I don't say it's just a skin condition or no big deal. In fact, I do acknowledge I'm aware it is a dealbreaker for some people. I allow my attitude to show that it's not a big deal in *my* life but I leave room for them to feel differently. So far, I've been met with much acceptance.

 

In times like you have described, I also find it helpful to ask myself if the conversation would be any different if we were talking about oral HSV1. Would your aunt dissuade you from such a disclosure strategy if you were talking about oral HSV1? If not, why not?

 

 

[dani]

@optimist, thanks for the response... I like what you are saying about sticking to the facts of the situation in my life.

 

I still think before I even get to the question of how to disclose fairly I'm just struggling with the question of, am I putting this person at significant risk, even if they do consent (since people often do things out of passion that they regret later). Removing the stigma of the virus (since some people may not care about that), is what I'm asking of this person fair?

 

you say much of what each of us said is true, but I think the point of disagreement/uncertainty is on how big the risk really is. Everything I've read in terms of statistics and heard from my doctor indicates, 1) the odds of transmission are very low with condoms and Valtrex, 2) if it does transmit, more likely than not they won't have symptoms, 3) if they do have symptoms it's very unlikely they'll be severe.

 

But my aunt thinks that the odds of transmission are not low. It seems she's basing that on anecdotal evidence as well as a general skepticism of medical research/statistics as being made up. She also thinks that a significant number of people infected have severe symptoms, whereas all that I've read suggests that it's a very small percentage.

 

I don't know what to believe. But I'm just having difficulty moving past this sense of guilt over the even tiny possibility that I transmit something that causes severe/debilitating pain to the person involved, even with their consent to the risk. I think that oral HSV-1 is different because as far as I know I haven't read of any cases where that's created any severe medical problems. I just hope the risks of those problems occurring truly are small.

[optimist]

@dani As far as I know, HSV2 is no more medically severe than oral HSV1. It does shed more frequently, and those who do get recurring outbreaks are likely to get them more frequently, but you are taking antivirals to reduce shedding, so likely not a big difference in your particular case.

 

But it's true you can't predict whether someone will have bothersome symptoms of HSV2, just as you can't predict who will have bothersome symptoms as a result of HSV1. That's why I don't tell people it's no big deal. I can't guess how it would be for them. I just let them see it is not a limiting factor in *my* life.

 

I understand you are concerned about exposing others to risk. I think it helps to realize that risk is not black and white, it's relative. If the prospective partner is free of both HSV1 and HSV2, the vast majority of adults could potentially transmit HSV1 or HSV2 to their genitals through either oral sex or intercourse. Ditto for HPV. These are risks people take all the time without thinking about it. So your potential sex partners are not choosing between risk (you) and no risk (somebody else), they're more likely choosing between known risk and unknown risk. And while some people might make choices based on raging hormones that they later regret, there are certainly others who would be hurt to not have the opportunity, not be given a choice. That's my perspective, anyway.

 

 

[Sil88]

This is exactly the argument that goes on in my head all the time. But we should try to avoid confusion and contradiction in our explanations - and since I'd rather be happy, I'll mainly take the angel's side.

[dani]

thanks @optimist. I think rationally I should believe/behave according what doctors and research studies show - that the risk is real, but small, and even smaller that it has significant health risks beyond the normal irritation for most people. It's hard when I hear something from someone whose opinion I value who is speaking like I am a big health risk (my aunts suggestion was just to stick to herpes dating sites, which just makes me feel more stigmatized/worse). the thing is, I can disclose honestly, but obviously I'm still trying to sell the idea that sleeping with me is a risk worth taking. which is hard to do if I'm not sure whether I believe that. but, as you say, the risk is relative - it does help to think about it in those terms.

 

[optimist]

@dani I guess what I'm saying is you don't have to sell the idea. You can just state the core facts. You also don't need to sell the stigma.

 

The fact is, there's a decent chance your aunt has HSV, as do many of her friends. Most of them just don't know it. I see nothing wrong with trying a herpes specific dating site, but I think it's helpful to keep in mind that the majority of people on regular dating sites are capable of transmitting herpes to a partner's genitals, either orally or genitally. HSV2 is especially prevalent among women with up to 80% of women in some demographics being infected.

 

Since my diagnosis, I've met one guy who is also aware of his HSV2+ status. I met him on a regular dating site. I disclosed to him and he disclosed right back. We are in the minority of people who know we are HSV2+. 85-90% of people with HSV2 are unaware of their positive status and therefore don't factor in the possibility of using herpes specific dating sites.

[dani]

@optimist, when I say "sell the idea," what I'm speaking about is just the fact that through the course of the relationship I'm selling myself as a person/worthwhile person to have some kind of relationship with, whether short term or long term. that would be true no matter whether or not I had herpes, but I think it's even more important to have that confidence given that I do. in terms of the disclosure itself the best way, as you say, is to give the facts about it without any opinion one way or the other and let them make their choice.

 

I'm sorry to keep obsessing about this one thing, as you may have already answered it - but, in terms of the facts themselves, you would agree that the risks of transmission per act of intercourse are low, given precautions? And that the risks of severe health problems from herpes are very low? Those are just the two questions that I'm trying to lay to rest as they'd help me feel a lot better about this situation/in terms of how I can disclose honestly.

[optimist]

@dani I think transmission risk is typically stated as an annual risk, not a per sex act risk. There are so many variables on any given day, it is better viewed as average risk over time.

 

My understanding is the risk of transmission on an annual basis (defined as having sex twice per week for a year) while taking antivirals, using condoms and avoiding outbreaks is 1% female-to-male and 2-3% male-to-female (penises are more efficient transmission tools).

 

Personally, I don't go into statistics when disclosing. I do acknowledge there is a small risk of transmission and I offer to elaborate and answer questions. If the person then asks about transmission, I will share statistics.

 

Likewise, I don't get into probability of health risks when disclosing. I will answer any question someone asks and will do my very best to be objective about it, but I don't start out by saying it's usually mild or anything like that. If you're asking this question for your own comfort in taking this risk with people, then I'd say it might help to think of it in the way you think about HSV1. Most people don't know they have it, a minority of people have recurring symptoms (cold sores), of those who have recurrences some are very manageable and some are more bothersome. A slim minority has complications related to HSV.

 

I think the greatest risk is contracting HSV during late pregnancy when antibodies don't have enough time to build before birth. Women who contract HSV1 or HSV2 genitally during late pregnancy have a 30-50% of chance of passing on neonatal herpes which can be very, very serious. By contrast, women with established (not new) infections only have a 1/5500 chance of passing it on during birth. This is very fortunate considering 25-30% of pregnant women have genital herpes and most don't know it. When it is passed on at birth, 1/3 of neonatal herpes cases are caused by HSV1, 2/3 are caused by HSV2.

 

There are other rare complications such as encephalitis (usually caused by HSV1), meningitis (usually caused by HSV2), blindness (usually caused by HSV1), but these are things most people don't dwell on, even though most of the young adult and adult population has HSV of one type or another.

 

ETA: I feel I should add that if someone has a compromised immune system, the health impact can be greater for them, whether HSV1 or HSV2.

 

You might also find this fact sheet from WHO helpful. It touches on typical symptoms, range of symptoms and potential complications of HSV1 and HSV2. http://www.who.int/mediacentre/factsheets/fs400/en/

[optimist]

@dani I'll also add, my goal here is not to claim that HSV1 and HSV2 are identical. The fact is that genital HSV of either type is generally stigmatized in a way that oral HSV is not. So I find it a useful exercise to lump them together or swap them out for each other when thinking things through as it helps me see HSV without the complication of the associated stigma. I relied on this way of thinking for a couple months until I was able to let go of the stigma myself. The more I educated myself, the more I became aware that the biggest difference (by far) between oral herpes and genital herpes is the stigma which is based on location.

 

Generally speaking, people don't allow their lives to be limited by oral herpes. There are cases, just like with HSV2, where symptoms are so bothersome and frequent, it impacts quality of life, but most don't even know they have it or that they can spread it to someone's genitals through oral sex. It's just not on most people's radars, though it is a very similar virus, just in a different location and therefore a lesser stigma. Can you imagine your aunt telling someone to use a herpes specific dating site because they had a cold sore once 20 years ago and therefore might transmit genital herpes to an HSV negative partner? If not, why not?

[dani]

@dani,thank you for the information and I think that's a good way of thinking about it - when it comes to oral herpes, we don't hold those who pass it on responsible if the receivers of it develop severe symptoms, since that is so rare.

 

again, I think I've gotten a little bit hung up on the fact that my aunt seems to disagree with the phrase "small" in terms of transmission rates and believes a large amount have severe symptoms. I guess there's always going to be anecdotal evidence that contradicts trends, but what else can I do in terms of my own behavior and how I disclose than use the data that's available/what the medical community believes?

 

I'm trying to separate the way that is rational for me to behave/feel from feelings that might end up arising regardless of what is rational. if I do transmit this and it does have an adverse effect on my partner's psychological and/or physical health, I will likely feel guilty. that may be especially true in the kind of shorter term relationships I've typically had, where my fear is that my partner may feel a lot of regret that they risked their health for something so brief. however, by disclosing to the partner beforehand I am giving them a choice/awareness of risk that, like you say, they would not have with another partner who didn't know their status or didn't disclose it. so guilt/paranoia over this possibility, while perhaps inevitable, probably isn't the rational thing for me to feel.

 

 

 

 

 

 

 

 

 

[dani]

sorry i meant @optimist

[optimist]

@dani People have different risk tolerances. A small risk to one person may seem like a big risk to another. The one person I disclosed to who felt the risk was too great was educated about the 1% per year risk and felt that risk was too high. Any known risk was too high. However, he felt comfortable taking unknown risks with women unaware of their HSV status. Everyone is different and processes risk differently. Most people I've disclosed to have not even hesitated in wanting to move forward and accept the risk. I let them make that choice for themselves, just like I made those choices for myself for 30+ years before I was diagnosed.

 

I will admit, before educating myself on HSV after my diagnosis, I had no idea I had been making my vulnerable to contracting genital HSV1 every time someone performed oral sex on me for decades. Statistically speaking, more than half of my sex partners likely had oral herpes and I never contracted HSV1 orally or genitally. Those who aren't infected with HSV1 orally are more vulnerable to contracting HSV1 genitally through oral sex. Now that I know all this, if I had a choice, would I go back to the 1980's and refrain from oral sex or start using dental dams for the next 30 years? No way! Those were great experiences and I wouldn't take them back. The risk in receiving unprotected oral sex was worth it to me. Why would I not give someone else the same choice to assess risk for themselves? More generally speaking, these people aren't just making choices about individual encounters that may carry risk, they are making a choice about whether to take the risks that come with having sex in general.

 

Having said all that, if someone is uncomfortable with the risk, I feel strongly that it's best to just move on, not throw a bunch of statistics at them to try to convince them it's no big deal. If it's a big deal to them, I'm not the right partner for them and they're not the right partner for me. Best to move on with no hard feelings. I had to learn this the hard way...haha...but one time was enough for me to learn this lesson. That was my very first disclosure. It was painful at the time but it turned out to be an excellent learning experience.

[dani]

@optimist... yes that makes sense. Personally, if I removed the stigma from genital herpes that might have a significant impact on my sex/dating life, if I knew with 100% certainty that by having casual sexual relationships I was going to contract a disease that caused pain in my genital region for a few days a year, I still would have engaged in the same lifestyle, because the thrill of that has been so much of what made life exciting. so presumably there are others for whom it legitimately is not a big deal, within their level of risk tolerance/how much they let the stigma affect them (of course they could contract it and choose not to tell their future partners, but that's probably beyond the scope of what I should feel responsible for).

[optimist]

@dani Yes, well that's part of the decision making process for those who knowingly take the risk. I think for many people, the greatest fear is contracting something with a stigma and having to disclose to others in the future. But as someone who is now saddled with a thing that has a stigma and is regularly disclosing to others, I'm finding it's not so bad and makes little difference in my love life. But that's me and pretty consistent with how I've lived my life in general. I tend to get worked up about things for a brief time and then move on pretty easily. If someone else is convinced they would be crushed by the weight of the stigma and would not be able to recover, they should factor that into their risk assessment, and not just with someone who discloses to them, but any sex partner who has not been tested. Anyway, all I can do is disclose in a painless way that allows potential partners to see disclosure doesn't have to be weird and awful. And if they aren't interested, I can move on with dignity and no hard feelings.