Who I Am

The subject makes me queasy. I feel anxious, scared, ashamed, angry, misunderstood. People have told me I’m promiscuous, indulgent, reckless, careless, uneducated, slutty. And yet here I am, telling everyone. I have genital HSV-1. What does that mean? It means that a previous partner who had oral HSV-1 (aka cold sores, aka herpes), performed oral sex on me. That is the likeliest form of transmission to acquire this STI. Why am I coming out? I want to be honest, open, true to myself, and authentic. I don’t want anyone to use this against me, and at least one person in our community has. I want to write my story and become more powerful, to “dom” this STI with my knowledge of it. Probably most important, I want to educate everyone who doesn’t know how careless they are being about a common STI with an incredibly destructive social stigma.

When I found out I have genital HSV-1 (also called gHSV-1) I was devasted. I was in denial. I felt like the scum of the earth and I couldn’t stop crying. I asked my doctor to re-do the test and she did. It came back positive again. I was still in denial so I went to Planned Parenthood and asked them for “a full STI panel.” This is important, this phrase. I also asked them to test me for HSV-1. I specifically asked for it. Said it was important to me. They wrote that all down, did the testing and called in a week with the results. They said I was negative for everything. I could not have been more elated. At first. Then I got a grip on my conscience and my intelligence. I needed to verify what I was being told. I asked the nurse to go through my results one by one with me. She ticked them all off as negative, but she didn’t mention HSV-1. I asked her why that wasn’t tested for, since I specifically asked for it. This was her response:

“Oh sweetie, we don’t test for that because everyone has it.”

So, what do I want to share with you? When you ask for an STI panel, HSV-1 is NOT tested for. Many of you may have HSV-1 without your knowledge. This also means that when you say you are “clean” you may be infecting others. Let’s talk about that word “clean.” People who live with STI’s are no more dirty than people who test negative for them. Using the word “clean” to describe your STI status reinforces the social stigma associated with HSV. In other words, you make those of us who live with this very unfortunate STI feel shitty. Please stop.

What should you do? I would insist on a test for HSV-1 antibodies. You will get resistance from the medical profession. If you respect your partners and potential partners, this is the responsible thing to do, and you should insist emphatically that they write it down in front of you. Put yourself in the shoes of a partner who performs oral sex on you after they tell you they’re “clean.” If you contract HSV from this encounter, will you feel any less horrible to know that your partner didn’t know they had it? Knowledge is power.

I also want to speak about the contrast between being intimate with someone who knows they have HSV and someone who thinks they don’t have it or who actually doesn’t. As someone who has gHSV-1, I am quite educated. I can give you statistics, shedding rates for all four types of HSV, ways to reduce asymptomatic shedding, and any other dizzying information you might want to know. Compare that with someone who thinks they don’t have it; who believes that unprotected oral sex and sex with condoms protects you from any STI out there. Fucking stupid, that. If I were to pick one of the two people to be intimate with, I’d pick me. I know how to keep my partners safe and their staying HSV-free is just as important to me as my own health.

What behaviors do I see from people that demonstrate a lack of safety? Primarily, unprotected oral sex. If you or your partner gets oral HSV-1 (let’s call it what it is – not “cold sores”), you or they are at risk of infecting others. This depends largely on how often you aymptomatically shed. What that means is that people who have oral HSV-1 will shed the virus when no symptoms are present. The virus likes to “hibernate” in a ganglion behind your ear. Once in a while it comes out to play, but it wears an invisibility cloak. During this time you are just as contagious as if you actually had an outbreak. So, returning to the topic of how often you asymptomatically shed; if you got this virus as a child and have outbreaks once a year, you will shed asymptomatically much less than if you have outbreaks every three months.

Another double standard I see is the lack of disclosure before kissing someone. I have the very same virus as those who get oral HSV 1. It is identical under a microscope. Yet I would NEVER become intimate with someone without telling them, informing them of the risks, what’s safe, what they need to consider on their own, and I do this at a time when our clothes are on, when sex is not imminent. How often do people kiss where they disclose the fact that they have outbreaks on their lips? Not often, is what my research and subjective experiences tell me. This is reckless. Oral HSV-1 likes to be on your face, it spreads easily from one pair of lips to another. The type I have is not in its preferred location. That’s good for me because that means it sheds much less often. I’m “lucky.”

In our subculture we do a lot of things that monogamous, vanilla couples don’t. This means we need to hold ourselves to a higher standard as far as safer sex.  This requires conscientiousness and knowledge. Get some.

The social stigma that is associated with genital HSV is daunting. It’s hard to alter how people react to the word herpes. Anything below the waist with the word herpes attached to it is “dirty,” “bad,” “promiscuous,” “slutty.” But if it’s on your lips it’s “just a cold sore.” These are the frustrating things those of us who battle HSV have to contend with. Because I got it from sexual activities, I am a slut. The most severe and hurtful reaction I have encountered was from a man I was falling deeply in love with. It was during our relationship that I found out I have HSV. When I told him, he initially reacted calmly. Within a week, when we saw each other, he said we couldn’t touch. Anywhere. Not on my arms, not to hug him, not even to say a last goodbye to him. That’s fear.

What should you take away from reading this? I hope that you will seek knowledge, you will test yourself and you will ask this of your partners. I beg you to be safer about sex. I request that you are more respectful in your terminology; clean and dirty are for laundry. And I hope that my story is helpful in giving a voice to HSV, that in some small part, my story helps to break down the stigma that has been around for decades.

post script...some of the best things you can do to educate others are:

~link to this post
~Tweet about this post
~re-post this, you have blanket permission to do so.
~talk about what you've learned
~If you want to further educate yourself, visit sites like http://www.herpes.org/herpesinfo/index.shtml, http://westoverheights.com/handbook.html, and http://www.herpes.com/hsv1-2.html.

These actions will cause the issue to permeate the internet with knowledge, and that will be a very positive outcome of this writing.