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No Shame: Coming Out Positive

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Why don’t clinics routinely test for this when we come in? Why are we so disproportionately represented? How many women give birth and transmit the virus unknowingly to their babies?

  And I’d never received any troubling news. Not until December 23rd, 2011.

I was just back in town, fresh off of a 9.5 hour long-haul bus trip. I hit NYC, took an insane and illegal cab ride all over lower Manhattan, Williamsburg, and Harlem, dropped off my things at the home of friends for whom I would be pet-sitting through Christmas, and ran back downtown to the Callen-Lorde Clinic. I met with the Doctor, who had the results of a whole lot of blood-work up on the screen.
Cholesterol, a little high. More oatmeal, eat less [INSERT EVERY FOOD THAT MAKES LIFE WORTH LIVING HERE].

The line with my cholesterol count was displaying in red. Funny how red instantly lets you know some shit is going down. I couldn't read much from my angle, but I was skipping ahead to see if anything else was red.

The first page was all in the black, all clear. He clicked to the next page. Another red line. This one was something about crystals in the urine. Did I drink enough water? No. I rarely do. My kidneys could use some help, otherwise I might be at risk for kidney stones. Not the kind of pain I dig. I nodded. OK more oatmeal, more water.
Next Page. A bunch of letters abbreviating a lot of scary stuff. HEP A, HEP B, HEP C, HIV...
And somewhere down the page, a line in red. And another.
My vision blurred.
“Your tests came in positive for exposure to Herpes.” the doctor said, like he said it all the time. Which he probably does.

I blinked. There was a long, long moment where I observed myself, waiting to see if I would freak out or break down. I did not.
“But I haven’t ever had an outbreak” I said, my voice shockingly level and calm to my ears, which were ringing. “I mean, I’ve never even had a cold sore. Ever. Nothing.”
He explained that most people are asymptomatic; basically immune to the visible effects of the HSV-1 and HSV-2 viruses, but they still carry them.
I kept breathing. Strangely enough, the world didn’t end at that precise moment. I felt numb. I stared at those two red lines on the monitor.
“So what do those numbers mean? Like, do I have a lot of Herpes? Or is this just a little Herpes? Because I’d like to know how awesome my immune system is. Am I immune despite a whole lot of herpes trying to kick my ass? Or is it just a few herpes?”
So, sue me, I’m an overachiever. If my immune system is managing to stave off the incursion of the Mongol Horde of Herpes, I wanna know about it. Bragging rights and all.
“Those numbers don’t really matter once they’re above a 0.9, honestly.”
Yeah, I’d heard statistics about how common herpes is. And I know it isn’t a death sentence. And among people who have Herpes? I’m lucky. No sores screaming on my mouth, no outbreaks of blisters oozing on my genitals, and minimal likelihood of sharing the fun with a partner who might not be symptom-resistant, like I am.

  But still. Fuck.

I left the clinic and wandered around for a while, lost in a fog. I realized, ironically, there was an upside to not having had sexual intercourse at all since April 2010, and having had intimate sexual contact with exactly two people since then. This meant only two people qualified to be on the “Need to Know” list.
I called up the first of the two people with whom I’d had sexual contact in the past 2 years. Explained that, though I was asymptomatic, I had just learned I was a carrier for Herpes. He didn’t freak out or yell at me. In fact, he thanked me for letting him know so quickly. I was relieved to learn that he’d been tested prior and subsequent to our encounter. The results were negative.
The other person...well. As the perpetrator of the sexual assault I mentioned earlier, and as someone who severed contact with me when I confronted him about his behaviors? That was out of my hands. It is possible that he was the person from whom I’d contracted the infection. But there’s no way to know, and considering I was a carrier for HSV-1 and -2, it’s unlikely any one person gifted me with both of those.

I called a few more friends, some of whom are healthcare professionals or educators about sexual health. No one furthered my desire to freak out. Several of them shared that they also had Herpes.

A friend with many years in healthcare asked me which Herpes I had.

“ALL YOUR HERPES ARE BELONG TO US,” I intoned. Because, when you’re upset about an STI? Joking about ancient internet memes is the only way to go.

“Congratulations!” he laughed. “That’s quite unusual! Most people stop with one.”

“Not me, baby! I’m all over one and two.”

I even called my Mom, who said she was glad I was taking care of myself, and said she would pray for my continued health, and that she was happy that I was otherwise OK.

She cheerfully reminded me it could have been a lot worse. Several of my friends who are positive for herpes advised me that being asymptomatic is its own blessing. Having it and not being plagued with outbreaks means you have one less thing to worry about, and your body isn’t likely to drag out monsters from the basal ganglia to set your nether regions ablaze.

  Merry Christmas, right?

I only made grim “Mo, the Plague Dog.” and only occasionally made grim “Typhoid Mollena” jokes for the next couple of weeks.

 To say I am fortunate, to say it could be worse, is little comfort, really. Logical reasoning doesn’t get me past the rage of having a virus in my body that has the potential – however scant – to hurt someone else.
It is already so difficult for me to achieve sexual intimacy; it doesn’t come easily to me. This just felt like another barricade on an already impassible road and now I was sure it was gonna be way less traveled.

  And then it gets crazier.

I thought I knew enough to keep myself safe. Clearly I did not. So in order to try to get a handle on this, I started doing research.
I discovered that many people who have Herpes are asymptomatic. In other words, they never have outbreaks. I also learned that between 65 and 80 percent of adults are seropositive for HSV-1, the virus that causes oral herpes, or cold sores.
I learned that the statistics as they apply to HSV-2, the strain that usually causes genital Herpes, are a bit more troubling.
The CDC Says

The latest HSV-2 data – announced at CDC’s National STD Conference in Atlanta on March 9, 2010, and published today in CDC’s Morbidity and Mortality Weekly Report (MMWR) – indicates that overall national HSV-2 prevalence remains high (16.2%) and that the disease continues to disproportionately burden African-Americans (39.2% prevalence), particularly black women (48.0% prevalence), who face a number of factors putting them at greater risk, including higher community prevalence and biological factors that put women of all races at greater risk for HSV-2 than men.

  Did you catch that?

FORTY PERCENT of black people in the USA have the HSV-2 virus.
And ALMOST HALF of black women in the USA have been infected with HSV-2.
When I found this stat, I thought “This can’t be right and if it is why isn’t there way the fuck more education about this?! Why don’t clinics routinely test for this when we come in? Why are we so disproportionately represented? How many women give birth and transmit the virus unknowingly to their babies? And why isn’t this a huge fucking issue, when being positive for HSV-2 puts you at higher risk for contracting HIV, which is also disproportionately represented in the African-American communities?!”
I have more questions than answers. I’m still learning about this grim statistical data. And I am but one voice. But I know that people need to know about their own health. And people need to stop being so fucking afraid to talk about their health and their sexual health because something is terribly, terribly wrong when statistics like this aren’t widely known, and sexual education is something people fight AGAINST.


Keep in mind, because I never had a cold sore or any lesions or outbreaks, I was never tested. You have to ask, you have to insist and you have to be firm in your resolve to get this test, even if you are asymptomatic.

Part of the reason that tests aren’t routinely performed is the fact that the rate of infection is already high. And unless you have outbreaks? There’s nothing to be done for you. But the fact is, Herpes isn’t a “harmless” infection. If you’re pregnant, and you pass on Herpes to your infant in childbirth, the results can be quite damaging to their health. People with compromised immune systems or auto-immune diseases are not able to deal well with the Herpes virus. Knowing your status is vital, so that you and the people in your sex life can make informed decisions

And you know the awful thing? Part of me felt ashamed, diseased, like damaged goods. Shit, the language we use around this isn’t even all right.
People talk about having STD and STI test results come back negative and refer to themselves as being “Clean.”

  So, am I now “Dirty?”

That’s just not OK.
So, I wrote a blog post about it. I put it up on my own blog at and I posted it on Fetlife. Inspired by Midori, a well-known Fetish and BDSM expert and sexual educator, who herself is out about her diagnosis, I shared my story. And the response was universally, overwhelmingly positive.

A few months after I’d been diagnosed, and had first written about it, I found myself headed up to Yale University with a bunch of other sex-positive peeps. We were participating in Yale’s Sex Week, and I was pretty excited about that. I was going to be performing as part of Bawdy Storytelling, and several of the other folks were also going to be teaching classes as part of the festivities.

Though I knew him to some extent as a “Sex Geek and professional educator,” I’d never met Reid Mihalko in person before. We hit it off immediately, which is unsurprising as he’s one of the most charismatic individuals I’ve met in a long while. He has the kind of energy that just makes you want to say “Yes!” to pretty much anything he suggests. And so when he suggested we take the couple of hours before we were to perform on stage that night and perform a few acts of licentiousness … Well, I could only say yes.

  Then the screaming in my head kicked in.

You’re gonna have to tell him you. Have. HERPES. Not just oral herpes but GENITAL HERPES TOO.

I winced. Fuck. Yeah, I had to disclose to another partner the month prior, but that had been someone I knew, and who knew me, and we had a rapport. This was not some hot guy I’d just met who may well call the whole thing off once he hears about my diagnosis.

Indeed, no. When we got to the hotel near the Yale campus, hopped into the shower and started in on our “pre-flight instructions,” it was somehow anything but awkward.

“So I have herpes,” I said.

He smiled, and that only got me hotter. “Its cool. I’ve had partners before with Herpes.”

He then disclosed to me that he’s been recently treated for Gonorrhea, which involved an initial injection of antibiotics, then a course of antibiotic pills. We discussed our safer-sex protocols, broke out the condoms and lube, and then he shagged me halfway off the bed and sideways into next week.

Yep, sex is better when you’re an expert. But most importantly? There’s nothing like fucking when you trust someone and feel good about being able to be honest.

Later that evening, I was pleased to be able to watch him in action again. Action of a different sort this time.

Reid was doing a class for the students, and I listened as he bounced all over, entertaining and educating, and seamlessly weaving it all together. I was further delighted to hear him openly discuss his recent diagnosis and treatment for gonorrhea with this room full of students. Talk about keeping it real. How remarkably empowering it is to have a total absence of shame and fear around sharing this information modeled right there.

  I also discovered I apparently have a mad fetish for honesty, because that shit turned me on something fierce.

When I was first diagnosed, I had someone actively discourage me from going public. They mentioned instances where other high-profile people had come out about their status as positive for various diseases to less-than-positive effect. And I will say that there are people who will back away from being sexually associated with you because you are positive. Everything ain’t sweetness and light, kids. But living in shame, in the dark, is not an option for me.  I do not want to skulk around, afraid of being judged. Afraid to be loved. Afraid to fuck. <-- Click this link for information on how to find resources for STD and STI testing near you. Seriously. Get it done.

I refuse to be ashamed, and I insist on taking control of my body and my sexuality. I encourage you to be tested, to be aware, and to be honest with the people in your life. When we are honest, we defeat shame and stigma.


Subscribe to comments
Contributor: FloraBBW

GREAT post!

I have an important question ... when I first started going to get regular STD testing, I asked about being tested for herpes. I was told that unless I had an outbreak at the time of being evaluated, it was impossible to tell if I had it or not. Your story suggests otherwise.

Are you saying it can be detected with a blood test? And I have to INSIST that HSV be included in the tests being run? I'm thinking we need to rise up and let doctors know that it needs to be included in all STD testing, all the time.

Contributor: Froggy

I read this on Fetlife a few months ago... It's good that the word is spreading.

Contributor: biancajames

My doctor actually told me she advises against screening for herpes because there's a lot of false positives and false negatives going by the blood test, and that the only ABSOLUTE way is to test a lesion. And while it's true that under certain circumstances herpes can be dangerous, I think the stigma waaaay outweighs the amount of panic/fear it provokes in people. I generally assume ANYONE I have sex with is HSV positive, since so many people are asymptomatic.

Contributor: biancajames

Der, I meant the fear and stigma outweighs the realities of the virus.



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