This post was originally authored by me almost exactly 5 years ago. It came to my attention recently that it wasn’t available here, though I thought I’d posted it. Regardless, this is information I really want out in the world, so here it goes (originally posted on Fetlife):
About a week ago, I noticed a red bump on my outer labia. I dismissed it as nothing more than an ingrown hair, and went about my day. By the time I looked again, about 24 hours later, that one 'ingrown hair' had multiplied. Several angry, red bumps where just one resided a short time ago. In my heart I knew what today's test results confirmed: I have herpes.
That's a seriously scary thing to admit to a website full of people. The amount of stigma associated with what is essentially a skin condition is alarming. It's bad enough that I withdrew from the world and cried myself to sleep for several nights. It's bad enough that I felt myself dirty, and wrong, and unworthy. I must have seriously messed up to contract herpes, right?
If there's one positive thing that came out of this past week, it's that I am seriously educated about HSV. Now that I am, I think it's time to pass on that information to all of you, in the hopes that we can reduce this stigma, and someone in the future who thinks they have herpes will not have to feel as desolate as I did.
We can start with my specific case, and branch out from there. I have genital HSV-1. It was given to me by a partner who did not know they had HSV-1 (traditionally oral herpes), through oral sex. This person did not have any visible 'cold sores' at the time of infection.
And so we come to Lesson 1:
Herpes can be spread when no physical symptoms are present.
This happens through a process called 'asymptomatic shedding'. This is when the virus is activating in your nerves, but you do not have any visible symptoms. The virus travels to the surface of your body (your saliva, as is the case with HSV-1) and can be transmitted that way. According to my research, this occurs about 5% of the time in people with HSV-1.
Think about that for a second. Society has decided that HSV-1 is the 'acceptable' type of herpes. We don't even call that herpes, we call it 'cold sores'. People are generally completely comfortable being with a partner with HSV-1, as long as they don't kiss them while in an outbreak. But the reality of the situation is, at any given time you are just as much at risk of contracting the condition from them (orally or genitally) as you are if you were to kiss them while they have a 'cold sore'. Asymptomatic shedding occurs with HSV-2 as well, though at a somewhat higher rate (6-10% of the time in the first year of infection).
In order to stave off the hysteria of this realization, I must move to Lesson 2:
Herpes is no big deal.
No, really. It's not. In fact, it is so minor, somewhere between 80-90% of people with herpes don't even know they have it. They've never had an outbreak, or they had such a minor one it was easily dismissed as a pimple, or an ingrown hair. How many times have we had a scare that turned out to be one of those? People write them off all the time, as I attempted to do before more bumps appeared. For those that do have outbreaks, they are generally no more than an annoyance. Yes, they can be somewhat painful, or itchy. But the Valtrex works, and then it's gone. Rate of recurrence goes down the longer you have the condition. Suppressive therapy is also available, through a smaller, once daily dose of Valtrex. It can be even further controlled by things we really should all be doing anyway: eating right, getting enough sleep, exercising, staying away from stress. If anything, having herpes would encourage a person to become healthier.
Additionally, medical professionals are so unconcerned with the condition, the herpes test is not given in a regular STD panel, unless specifically requested. You didn't request the test at your last screening? Guess what, you have no idea if you have herpes. Did you specifically ask your partner(s) if they've tested for herpes? Guess what, you have no idea if THEY have herpes. Most people don't realize it's not a part of a standard test.
This brings me to Lesson 3:
You are at risk for contracting herpes.
Now I know people are flipping out. 'I use safe-sex practices! I discuss STD status with all my partners! I don't engage sexually with people with active outbreaks! I won't even consider being with someone with herpes!'. Well, I was right there with ya, and now I've got it. As with all STDs, it's just not enough. Condoms help, but as herpes is spread skin-to-skin, you'd need a full-body condom to alleviate all risk (all that latex!! swoon). Having the discussion is not enough. I had the discussion with my partner, but that didn't do squat, as he didn't know he had it.
'But wait! I DID ask specifically for the test, and it came back negative!'. You're still not in the clear. The best way to test for herpes is to swab sores from an active outbreak. If you don't have an active outbreak, the next best thing is to test your blood. But what a blood test shows is if the antibodies for HSV are in your bloodstream, not the active virus. So all a blood test really shows is that you didn't contract herpes 3+ months ago. It's very likely that the blood I had drawn on Saturday will show a negative result, as I just contracted the virus recently. I know my status due to the swab test, which is much more accurate.
The big difference between HSV-1 and HSV-2 is where they take up residence.
That's it! Those 'cold sores' that everybody dismisses on someone's lip are the same ones that show up in your pants. Now, that's a little more complicated than I've put it, because obviously, one can contract HSV-1 genitally, and one can also contract HSV-2 orally (though that's much rarer). The main thing to take away from this lesson is you can have either one in either spot, and the only difference between them is if someone can see just from glancing at your whether or not you're having an outbreak.
There is a lot more information I'd like to share, but this is getting long, and I think it'll be easier to share that information in another post about my specific circumstances.
What have we learned? That HSV is way more contractible and common, and way less of a big deal than we all thought. In all honesty, you are probably less likely to contract it from someone who knows they are HSV+, as that person is actively taking steps to minimize passing it to someone else.
We've learned that people with HSV are not automatically 'dirty', or 'irresponsible', or 'wrong'. They can just as easily be people that took all the right steps. Granted, in my specific instance, I could have been safer. I did not use a dental dam when my partner performed oral sex on me. I'm not ashamed of this, though. I made the best decision I could have based on the information I had at the time, which is all most people who are HSV+ can say.
We've also learned that most of us have put ourselves in situations where we were at risk for contracting HSV, even when we believed we were being completely safe. I think this is the most important lesson of all. How can we stigmatize others when it could have just has easily been us?
I hope this has been an eye-opener for some. I know a lot of this knowledge was surprising to me. Mostly I hope that this post enables someone to be kind when a friend or potential partner discloses their HSV+ status to them. I hope this post stops people from trashing those who are HSV+. I hope this post enables me to not have to hear about how 'dirty' people with HSV are. Not just for my own sake, for the sake of those who feel the stigma is too strong, who feel they can't come out publicly the way I am. I wrote this for them, so we can come closer to an accepting environment where we can feel free to be ourselves, without judgment.
Isn't that all any of us ask for in this community?
*In case anyone is wondering, I got most of my facts from here, which is a wonderfully informative article with a lot of citations that I was too lazy to put in here. There may be a fact or two I picked up from somewhere else...I have spent the better part of my free time for the last week researching this particular topic, and it's become slightly difficult to completely discern where all my information is from.
