[Guest post]

Thoughts from a life-long herpes carrier

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Thoughts from a life-long herpes carrier

I don’t remember what it’s like to not have Herpes. Photo albums have pictures of me at around 3 years of age, with half my chin broken out in a big-ass cold sore. Snapshots of me passed out because I was running a temperature of 105 that always seemed to accompany the outbreaks. Memories of trips to multiple “specialists” and even a move to a bigger city that had a Teaching Hospital to try to figure out what was causing the fevers…when all along, the cause was staring them in the face.

Fast forward to around 1976. The fevers had stopped when I hit puberty but the cold sores came up on a pretty regular basis, tho they were not nearly as bad as they had been before. Instead of taking over my whole chin, they’d just hang out on the corner of my mouth. Just like half the other kids in school. Cold sores were just a nuisance. Nothing more. It certainly wasn’t considered an STD. Which is probably just as well. My mother would have had a nervous breakdown and probably shoved me into a convent. :p

So here I was, a hormone-ravaged 16 year old. Like most girls, wanting to be like all the “pretty” girls who had boyfriends. Wondering what this whole sex thing was about. Having had “the talk” from my mother, which was something like, ”save yourself for marriage or the man won’t respect you”. I figured out tampons on my own. The pads we wore back then felt like you had stuffed a bathroom towel in your pants. And sex, well, it was some mysterious thing that you did when someone really, really liked you.

Our family had gone to a Black Powder shoot – my Dad and I would shoot Muzzleloaders and we competed at things like splitting the ball on an axe head at 50 yds and all kinds of cool things like that. There was a guy there – I think he was about 21… certainly, looking back, old enough to get arrested for messing with me. You know where this is going, don’t you?? Well, short story is, I was flattered at his attention, and ended up in a bedroom alone, and, well, the rest is history.

About a week later I got a rash. Didn’t think anything of it. I lived in Florida. It was summer. I was hormonal. My mother had learned of our dalliance and threatened to get him arrested if he ever contacted me again. Like many here, I was used and ditched as soon as things got messy. But I had never been exposed to anyone who had that perspective…. So it just hurt, I cried, but I moved on. With my little H friend ...

That rash came and went. I never thought anything of it. I heard about STDs … got the regular Syphilis and Gonorrhea tests with my next OBGYN exam. Eventually met another guy who was my second official BF … who omitted to tell me he had Genital Warts. I was on the pill and condoms back in the late 70’s were a one-size-fits-all option that usually broke so most of us went on the pill so we wouldn’t have to worry about using a condom (because STDs were not really discussed back then). And people wonder why I don’t gamble? Yeah – luck is not my strong suit. But living this life has sure made me learn to be the author of my life…. Anyway, I digress…

I got the Genital Warts burned off but the Herpes subject still never came up when I went to the doctor. Forward again to 1981. I met (my now ex) James. British guy. AKA, Knight in Shining Armor to a gal who was then living in Tennessee. We married … but not before we had to do an STD test for Syphilis and Gonorrhea for the marriage license. Note: STILL no mention of Herpes by the Doctors.

It took about 1 ½ to 2 years but Don came to me one day, saying he had this sore on his crotch and his glands were swollen and he felt feverish. He went to the Dr and that was when we learned… I had Herpes…and I had passed it to him. Nowadays that would be reason for a full on soap opera style meltdown and all kinds of drama. But back then, it was just a pain in the ass. To be honest, Don got far worse outbreaks than I did…. It took him years for his body to get to where he just has the occasional sore and no other symptoms. But the bottom line is, because there was no stigma attached, there was no drama. No emotional pain. Just another bump in the road in Marital Paradise.

We eventually divorced in 2003 after more than 20 years together. It was amicable and we are still friends. I re-entered the dating pool. Now for anyone who has been married for any length of time, you know what THAT is like. Oh Emm Geee! Had the world changed! Online dating. Stalkers. “The rules”. WTF is a Hook-up anyway? How many dates till you have sex? I was 40 but I might as well have been 16 again. The one thing that didn’t come into the thought process. “I’ll have to disclose and no one will love me”. At least, not until later.

I met John while I was separated. I thought he was “The One." Fell head first in love. We had sex the first night … and yes, I did tell him I had herpes. And he barely blinked and said it wasn’t a problem for him. And it never was an issue. And to my knowledge he never got it from me. He chose to end the relationship after 3 years. And THAT was when I became a victim (at least, for a short while) of the stigma of Herpes. Several guys chose to not date me because of my status. WTF? It hurt, but I kept soldiering on…

Then I met Ron. I really wanted this one to work. And I have to admit, I was really horny… which led to me thinking it was ok to not tell him as long as we used a condom. We did the deed. My conscience soon caught up and whacked me upside the head (I’m a terrible liar). So I told him the next time we talked. Well. Suffice it to say he totally freaked out. I gave him the info I had at the time. He went to his Doctor and came back with 2 things. 1)Herpes was a common as all hell, nuisance skin condition and 2) it could be passed on asymptomatically. Well, that was when *I* joined the freak out club. Suddenly I was a walking Petri Dish just waiting to infect every man I came in contact with. I experienced all the anguish and pain that I see here on the Forums every day. I researched and found I could take Acyclovir to reduce the shedding. He talked more to his Dr. and calmed down a bit. We talked. And he decided to go forward with the relationship. Now, I had started to wonder if I wanted to be with someone who reacted THAT strongly to things (that wasn’t his only freak-out) but the thought of having to re-enter the dating pool with my new-found info just was too painful. So I entered a relationship with a man who adored me, but who I just liked enough to stay with. Someone who would have married me, but who I hurt in the end because I finally had to admit to myself I was staying somewhere in order to not have to deal with having “The Other Talk” ever again. And, being allergic to lies, I finally had to own up to myself that I needed to move on for both our sakes. After 3 years I finally broke it off. Ron is still herpes-negative to this day.

After that, I took time off dating to figure out who *I* am. What *I* want. And I got to really, really like me a lot. I started dating again.. with mixed results. One guy didn’t care about it but he was a lying cheating SOB (to put it lightly). Thankfully I caught him before I threw my heart over the fence. #2 was stopped dead in his pursuit of getting in my pants for all of about 30 minutes while we talked about it. Turned out he had had THREE other women disclose to him. And he decided to go forward because he really seemed to like me. Well, turns out he was rebounding, and soon it came back to bite his ass (at least, that was his excuse). And he walked. Then there was#3: Carlos – one OMG HOT smooth talking Latino guy. In reality, that was doomed from the start but gosh, I wanted it to work.

Disclosure wasn’t pretty. He said at one point “Stop with the facts … You’re scaring me” (To which I replied, “If you don’t know the facts you should be scared!”). He was convinced you could “tell” if someone had Herpes. Well, he gave it the old “college try” but his fear of getting something that *might* disfigure (even temporarily) his gorgeous body was too much for him (Hence, why we were doomed from the start…two very different ways of seeing things… he was waaay high maintenance!!!). We parted intending to be friends.

That lasted until I got so pissed one night that I decided to come completely out of the “Herpes Closet”. I had entertained thoughts of that for some time. I had told a number of people here and there over the years and found that *most* people were not that bothered by it…at least, not until you wanted to date them.

The whole experience was almost an out-of-body, planet aligning experience. I saw a Ted Talk by Ash Beckham where she said something like “A closet is just a hard conversation that you have to have and everyone has a closet at some point in their life.” (Also, a recent post by our Herpes Opportunity community member Carlos points to this, too.) I thought, “Yeah, that’s exactly what I had been feeling … I’m in this damned closet with this friggin Virus and I don’t like it here. And I just plain don’t give a shit about who knows any more because it doesn’t define who I am. I’m tired of lying when someone asks why I had a cesarean for my first child (thanks to an ignorant Doctor who scared me into it… I had my second naturally). I’m tired of having “the talk”. And really, I’m totally at peace with the virus. It’s the STIGMA that I have a problem with.” So I came out …. to everyone. On Facebook. In a long post that explained the facts, the stigma, and why it had to change. And out of the 1000+ friends there and elsewhere, the ONLY one to completely walk away or act in any kind of a negative way was Carlos. Yeah – Thanks Herpes. You showed me who he really was. You see, that was when I realized herpes is my Wing-man. It was really quite freeing. Herpes shows me every day who loves me unconditionally for who *I* am, and isn’t afraid to be friends with someone who is strong, powerful, and confident enough to speak the truth about who I am and what I stand for. I can almost like my H friend now… as long as he stays in his ganglion home!

That was when I joined Adrial's Herpes Opportunity site. I was sooo pissed at the ignorance and stigma that I had been so blissfully unaware of for so long. I found that the anguish of the recently diagnosed just killed me. I got angry at the power this damned microscopic thing has over people who just plain got unlucky. I had already been thinking of doing exactly what Adrial has done…create a SAFE place where people could come for information and support. Start a campaign to get rid of the stigma. Educate the public and Doctors about the truth. All that and more. So I was delighted to find this place where much of the work has already been done and I could focus on helping others and campaigning for testing and education. I posted my coming out story and the rest is Herpes Opportunity history.

Folks, really. The stigma is only there because we have been silent for too long. Somewhere along the line we’ve allowed ourselves to be convinced by the Big Pharmas, the Media, Comedians, and our friends that when you get an STD you are suddenly a dirty, unlovable being. Humans have lived with herpes for thousands of years. Without Valtrex! And it’s only in the last 30 or so years the stigma has been attached to it. Why? Because to the Doctors and the CDC, Herpes is not important enough to put money into education and research. They have more important things to worry about like Cancer, HIV, Diabetes and the Obesity epidemic, battered women, and the like. And we have stayed silent while the stigma has grown…. Convinced we have to join STD dating sites like Lepers in a Leper colony. Too ashamed to tell our friends in case we are suddenly branded with a scarlet H on our forehead. We are just as much a part of the problem …maybe more-so, because every day, someone hears a friend make an ugly comment about Herpes and they stay silent for fear of being “outed” to everyone else.

We’ve allowed others to create an unjust world for us…one where their ignorance is dictating how we should feel about ourselves. And it’s time for it to stop. Yes – coming out of the closet is scary… ask any homosexual who finally got up the nerve to disclose about their sexuality to his/her parents. But I can tell you, it’s so freeing! I’ve had nothing but support from so many people. Many H- friends have said it’s an important conversation and applaud me for it. Some say I’m brave. Funny – I don’t feel brave. I was just tired of living a lie. That’s all.

So I challenge you. Crack open your closet. Peek out and see who you can call over to your door. Ask them for help …let them help you crack it open a little more. One friend at a time if you have to. And one day, I hope, you will realize that it’s really, really okay on this side of the door.

P.S. This video is part of the free "inside coaching" series.

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