I’m the 48%.
I’ve been going to see healthcare professionals about my sexual health since 1985. I was sixteen, and my boyfriend and I were fucking one another’s brains out with predictable results. I’d a scorching UTI, and Planned Parenthood was most accommodating. Since then, I’ve been quite attentive of my sexual health. Regular pelvics, started up my breast exams promptly when I hit 40. PAP smears at least every year…more frequently when there were some ambiguous results back when I was in my early 20s.
I usually don’t sweat it when I go in for STD and STI test results. The notable exception being for the year or so after a guy violated my boundaries and committed an act of sexual assault by penetrating me without a condom. I was apprehensive then, and made sure to step up my game about being tested. I’d had the usual screening. They asked me about my drug and alcohol use, number of partners, safer sex practices…any symptoms I’d displayed…the works.
And I’d never received any troubling news. Not until December 23rd.
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 the 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, less [INSERT EVERY FOOD THAT MAKES LIFE WORTH LIVING HERE]. The line 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 of 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? 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.
“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.â€
He explained that some people are asymptomatic, basically immune to the effects of the HSV I and HSVII viruses, but they can still carry them.
I keep 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?â€
So, sue me, I’m an overachiever. If my immune system is managing 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.â€
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 relatively lucky. No sores, no outbreaks, 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. They didn’t freak out or yell at me. In fact, they thanked me for letting them know so quickly. I was relieved to learn that they’d been tested prior and subsequent to our encounter, tested negative, and had no status change.
The other person…well. As the perp of a sexual assault, and as someone who severed contact with me when I confronted him about his behaviours? I’m not sure how to handle that. I do know of one of his partners, and I wonder if the ethical thing to do might be to advise them…but I just don’t know. It seems weird to not tell them anything, and it seems problematic to contact this guy’s other partners out of the blue and possibly, needlessly, worry them. I may have been positive decades before I met him. I may have picked up the virus from him,and there is no way I’ll ever know.
I called a few more friends, some of whom are health-care professionals or educators about sexual health. No one furthered my desire to freak out. Several of them shared that they also had Herpes. 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 glad I was otherwise OK. 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.
Later in the day I spoke to TheDominantGuy. I told him about my diagnoses. We had never had any intimate sexual contact during the course of our relationship. So he wasn’t at risk of my having transmitted herpes to him. That’s why he wasn’t on my “OMFG Notify Immediately!!†list. But I figured I would let him know anyway, mostly because I was irrationally afraid that being diagnosed with a STD would put a damper on that ever happening in the future. Much to the disappointment of my inner drama queen, he didn’t reject me on the spot as damaged goods.
He asked which type it was for which I’d tested positive.
“All of them.â€
“All?â€
“Yes. All your herpes are belong to us.â€
I crack myself up….who cracks old internet meme jokes while doling out bad news? Clearly that’d be me.
“ All, both, whatever. I’m fully herped.â€
“That’s unusual.â€
“Yep, that’s what the doctor said, too. But hell, I’m an overachiever.â€
Merry Christmas, right?
The holidays continued rough for a few reasons. Not gonna get into that now, but eventually, I realized I wasn’t obsessing about having all them Herpes viruses. I also eventually managed to stop referring to myself as a “Plague Dog.â€and only occasionally made grim “Typhoid Mary†jokes.
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 travelled.
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: i.e. they never have outbreaks. I also learned that between 65 ~ 80% of adults are seropositive for HSV1, the virus that causes oral herpes. (cold sores)
I learned that the statistics as they apply to HSV2, the strain that usually causes genital Herpes, are a bit more troubling.
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?”
I have more questions than answers. I’m still learning about this grim statistical data. And I have but one voice and one blog. But I know that people need to know about this. 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.
And you know the awful thing? Part of me feels 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.â€
SO, am I now “Dirty?â€
That’s just not OK.
It isn’t fair. It isn’t OK for me to feel that way. It is not right that I should be able to have compassion for other folks who are positive for all manner of STDs and STIs, and yet sit awake at odd hours, and have terrible dreams of trying to escape my body.
I DO want to say: please get tested. MOST CLINICS AND DOCTORS WILL NOT AUTOMATICALLY PERFORM HSV TESTS. 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.
Know your status.
And if you are positive, and can share your story? Talk about it. It makes a difference. Stigma is eroded with numbers.
Thank you for reading.
I am seronegative for both HSV-1 and -2. People make comments all the time when I talk about how I stop people before kissing me, even if it looks like it’s just going to be a peck on the mouth, and ask them about HSV before going forward. I get it from the kink community all the time, about how it’s better to kiss people and just accept that the majority of adults have it and it’s no big deal.
The problem is, I have a suppressed immune system. So what is asymptomatic for you can be very problematic for me. So I’d really like it if people were more sensitive to both people who are seropositive, as well as those who take (what may seem like draconian to your run-of-the-mill kinkster) measures to lower their risk.
It’s not sex-negative to want to talk about HSV before swapping spit. Even if it’s the ladies-who-lunch sort of kiss. All the better, because I’m betting they don’t get the HSV talk very often.
I deeply appreciate your making this comment, Del. Sometimes, in our effort to be accepting, we can overreach. I appreciate the education and the reminder that people often have boundaries we absolutely need to respect, even if we don’t know why they are in place.
Peace
~Mo
I am also seronegative for both strains, and I get that reaction from DOCTORS when I specifically ask to include both HSV I and II in my STD/STI panel.
“Well, most people have it, so we don’t usually test for that…”
“I don’t. I never have. I would like to know if my status changes.”
I am negative for both strains as well and I have to fight my doctors (well used to.. the current doc is used to it) to test for it.
I’m not really concerned about being “dirty” or “catching” something… I just want to know so that I have full information.
I’ve had partners who were positive for I but asymptomatic and I accepting that risk but I would want to be able to offer that knowledge to other people….
BTW and 48% of African American Women!!!!
AHHHHHhhhhhh….
I wonder what the numbers look like if you just look at low income across the board… I’d be curious…
I’ve gotten cold sores since I was a child, so if I were to take an HSV test it would come back positive. Most people have NO IDEA what it means when I tell them this, or when I call them out on their boasts of being “clean”.
A dude who was chatting me up told me he only dated “clean” women. I told him about my test results and he got all snooty. “Have your previous partners had tests specifically for HSV,” I asked. “Do you know for sure that they’ve never had even a single cold sore? Bearing in mind that the vast majority of adults have had at least one?”
“I assume if they had they’d have told me,” he said, and I threw up my hands and wandered off in frustration.
I appreciate very much your sharing of your story, and your efforts to educate people.
I do not understand medical care in this country. What part of “I’d like to be tested for this” is so bloody hard for them to understand??? Paternal fucks. I don’t think I’ve ever managed to successfully get them to test, even when I begged them to.
It’s not included as part of regular screening precisely because it’s so common. Unless you come in complaining about something that could be it — “i have this rash, i had a fever” etc etc — then why bother? There’s no cure, treatment is symptomatic and if you’re not showing symptoms, what are they going to treat? It’s usually seen as a waste of time/resources, like you’re treating something that isn’t a problem. It doesn’t help educate people who might have it, and it doesn’t slow down the spread of it. It’s not smart, it’s not fair and it’s not right, but there you have it.
[…] on her blog, Mollena has written an excellent post about her experience being diagnosed as HSV positive. Perhaps more important than the excellent […]
I am seropositive for two of the three human herpes viruses. People tend to forget the third, because it’s not usually considered a sexually transmitted disease and thus doesn’t have the same stigma.
I have an occasional cold sore (do people ever get more than one at a time? I’ve only gotten one at a time), but have had a secondary outbreak of the other virus just once.
I was diagnosed 16 years ago with HSV-2 at the age of 26. I was horrified and walked around in a daze for quite some time. I assumed that my then boyfriend/now ex-husband, would leave because of it. He was fine with it. When I got divorced, it became an issue again. How do you introduce that subject and when? Obviously not as you are tearing one another’s clothing off! The first date? That’s a bit soon…unless you’re playing the field and just looking to get laid. I’ve been blessed with positive encounters with my sexual partners. Not one freaked out and ran screaming. I shared information that I knew with them, referred them to websites that had factual data on it, as well as statistics.
A couple thoughts. First, I have no idea whom I contracted it from. I went through a period of time where I considered it to be a ‘punishment’ for being a stupid teenager who didn’t have the balls to insist on condoms every time and being more concerned about unwanted pregnancy.
Second thought. The local health department, where a lot of our teens go for birth control, does NOT do HSV testing – even if requested. Sighs.
Third thought. “65 ~ 80% of adults are seropositive for HSV1” – how many adults kiss babies???!!!
And finally – the clean/dirty concept is horrible. Nobody is ‘dirty’ because they have a STD/STI.
And a post script – “all your herpes are belong to us” (hahahahahaha)
I’m sure you’ve heard me talk about this before. I have the herps. (Welcome to the club!) I got it from someone giving me unprotected oral sex. They didn’t even seem to know that cold sores ARE herpes. argh. ANYWAY, something I wanted to point out is that hsv1 prefers the mouth, hsv2 prefers the genitals and other mucus membranes (like eyes, nose, and around the anus). That doesn’t mean they won’t take a break from their normal infection sites and appear at other places on other people. I hate when people say “Oh I have HSV1, so yanno sex is still perfectly fine!” because that’s possibly false. Then there’s the fact that asymptomatic shedding is the most common way to transmit the virus and condoms don’t provide as much protection as they would with a fluid passed illness, etc…
it’s really annoying.
Thankfully, in a sex positie kinky community it’s not too hard to find people who respect you for respecting them enough to tell them and be completely upfront. It’s a kinda cool how that kinda works.
[…] holidays were tough. I wrote about some of that. In addition to finding out I carry HSV I and HSV II, I lost my hard drive and my trusty laptop deceased, taking a whole lotta awesome with it. I took a […]
I’m positive. I have gotten cold sores since I was a little kid. I tell people all the time.
Thank you for this post. It is so important and powerful. Education is necessary. I remember a guy who tole me his doc told him not to worry unless he had symptoms. I think this is generally the belief taken for a lot of people, unfortunately. Thank you so much again. xoxo
I have tested positive for HSV type one and type two. I spent the first 6 or so months feeling like a diseased whore. I have never had a vaginal outbreak, and my oral outbreaks are thankfully very very small and rare.
When I first tested positive, I thought no one would ever have sex with me again. Sex was “over” at 29. Hell, at the time I wouldn’t have sex with someone I knew had any sort of “VD” so why would anyone still want me?
My fluid bonded partner had me call all his ex’s and let them know of my test results before he got his done. The calls of shame were done, more testing was paid for for partners, then, finally his test- he was not positive for HSV 2. Every fluid bonded person I’ve had over the last 10 years has tested negative for type 2, and the couple that were previously not positive for HSV 1 remained so.
Does it suck to talk about it? Yes. Do I still talk about it? Yes. On the first date usually, because if they are going to be gross about it, I want to know sooner rather than later.
Better yet, am I still having sex? Yes! Did someone choose to be fluid bonded to me after finding out my status? Yes! Do I still work on the feelings of shame that creep in? Yes.
There is something wrong with the health care system if doctors and other health practicioners tell patients not to be tested for things. Isn’t it good to be proactive?
I am glad you got checked! And no, you aren’t damaged goods.
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First, there are plenty of STIs, and no one should want to spread them. More importantly, there are a bunch of infections that can be spread sexually, but are often transmitted other ways, like hepatitis. HSV can be transmitted through non-sexual contact too. Even if the rest of the world doesn’t get it, we owe it to ourselves and our lovers to take STIs seriously.
I really would love to hear you discuss this on some of the podcasts you’ve made appearances on. In fact, I would love to hear you discuss it on all of them. Get the message out there. You bring a humor to it that might help some people get past their fear long enough to actually get tested and talk about it.
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