Want to take a stand with us? The Shameless Herpes Movement!

[Shannon (SingBlueSilver)]

I just read a post from a friend complaining that she had a terrible day, "I got my period, got a cold sore, ..." WTF?! I wanted to scream, you have herpes! You're not ashamed because it's on your lips and not YET on your vagina. But hey, just give a guy a blow job and ta-da, you have now fallen into our side of the world where it's a shameful and hidden thing. I'm not saying that's how I feel, I'm saying that's how most of society views us. It's soooo unfair! It makes me want to inform people that a cold sore isn't different from one on your genitals. It's the same thing but she can annouce it on FB while those with genital H have to feel dirty and scared and alone. We really need to change to perception. We need doctors and teachers to change this perception. If 80% of the world have cold sores, it should not cause this much pain to get one on your genitals. This makes me want to annouce it to the world and fight for the truth...we are not dirty or gross. We are not any different from anyone else. We have a minor skin issue that is annoying but not life threatening. I want to fight this perception and I guess it starts with me in my own life. I'm not sure what I'll do yet but it is a thought that is brewing in me.

[mr_hopp]

Why do you think I started this Herpes Opportunity thing, sista? ;)

 

We're all getting on the same page about this as a herpes population. There is an blatant disparity that cold sores carry no shame and genital herpes somehow fall into an entirely separate shame-filled category. Definitely blows my mind. And shifting the stigma/shame is not going to be accomplished by being angry about other people not getting it (trust me, not judging you for it, just recognizing all the anger I've had around it before) ... It will be accomplished by each of us simultaneously having compassion for the ignorance out there that herpes is some horrible monster AND that in reality it's just a minor skin condition. And whenever we do speak about it to others, it shows up as just what it is, without being wrapped in all that stigma and shame.

 

And that's what we're all moving toward in this movement. You are speaking to the herpes opportunity manifesto. That there's no good reason to hide in the shadows because of a simple little annoying virus. That we are holding ourselves back from who we truly are if we think a virus changes any of that. Shame-free STDs in general is the next big movement in wiping shame off the map as far as I'm concerned. I'm glad you're taking a stand with me, SingBlueSilver. ;)

[lively]

YES!!!

Shame free STDs, Adrial you rock!

 

You know I reckon it's all a leftover from historic fear of sex itself...the forever fear of pregnancy and social shame, and the not-so-far-back days when STDs that we now control by antibiotics ran rampant and brought blindness (really!), + terrible consequences to the body. It's the ONLY thing that explains the ridiculous shame levels that we get ourselves and that are imposed on us.

 

We are THE NEW PARADIGM! So it takes us some effort to educate. We are on the edge of social change, and I'd bet it's not the first time for most of us to be there in some way.

[VirgoGirl]

SingBlueSilver, I Just wanted to say that the same thought has been brewing inside for awhile now, ever since I have been diagnosed with hsv2! I just feel like i want to tell everyone and not be ashamed of it. If almost a quarter of the population has it, then how can it be so wrong to tell people. If we all just came out, then it would be a normal thing, and we wouldn't have to hide.

 

I think about this all the time. I just started college taking Social Service Work, and I have imagined giving a presentation saying that I have this, and its not a big deal. I can imagine half the class being like "I cant believe she just told us this" and some people would find it inspiring, and some people who have hsv themselves will feel better and hopefully less ashamed. I would probably be known as 'that herpes girl' at school, but at least i wouldn't have to have that dreaded talk with any potential partners cause they would already know...I wish this could just happen, but for now, its just a fantasy, that could someday become true.

[VirgoGirl]

Wouldn't it be crazy if there was some day devoted to coming out of the herpes closet. like, if everyone in the World who had it just came out and said they had it at the same time.

We would be amazed at everyone around us who has been hiding it the whole time. I think we would all feel so much better about ourselves

[mr_hopp]

Hey VirgoGirl! Yep, I have had a project in the works (so many projects, so little time!) that would work with that concept exactly. It basically has everyone line up side by side virtually and all at the same moment, take a step across the line to show yourself. :) Shame can only exist in the shadows. When enough people come out of the closet, then all the power shame once had is deflated. It takes enough people to really trust that it's not as a big enough deal to hide about.

[Shannon (SingBlueSilver)]

VirgoGirl, Oh my God, I feel exactly the same! I've been contemplating doing something big, like talking to school kids and coming out to everyone so that it's not shameful anymore for me or anyone else. The secret weighs so heavily on me and it's not right because it's not shameful, I'm still me and I'm still a good person and all I did was do what everyone says you should do...wear a condom! And even if I hadn't worn a condom it's the point that having sex isn't bad and this condition is no worse than having pimples! I think AIDS gets a ton of positive support and it's time we got the same support. I live in LA, near West Hollywood, gay capital of the world, kinda, and having AIDS isn't shameful, it's just another deadly condition, like cancer but no one makes someone with AIDS feel ashamed of themselves. Why should we or anyone with any disease be ashamed? I think we are unique. Everyone with AIDS is given love and support. Those with curable STD's are just told, "don't do that again and given some medication". But those with herpies are shamed into dark corners and made fun of. I'm not writing this very well or thoughtfully at the moment but I think you get my meaning. Adrial, I like your idea of coming out. I think it would be amazing for all of us to be able to breathe and not worry about people finding out. I hope I have the courage when that day comes. Thank you for your constant support to all of us! VirgoGirl, I think such a presentation in your career would be amazing and really make those that you help trust you and feel they can talk to you. I hope you have the courage to make such a bold stand. Thank you both for responding to my original post!

[VirgoGirl]

Everything you are saying definitely makes sense, and I understand completely! I believe you too can make such a presentation and announcement in your life as well. It will take courage and strength, but woudln't it feel amazing to just tell a room full of people??

 

I know I am going to do this one day, and my career path is just perfect for it. It probably won't be while I'm in college, but when I am a little older, and I will probably go speak at high schools like you mentioned. I thought of doing that too :)

 

And Adrial, that's awesome that you've been toying with the same concept! I think it could really be something wonderful!

[Carlos]

THIS THREAD IS GREAT. love the conversation, and i totally agree, we need to look into shame-free STIs. the best thing i've ever heard from a 12-step program i attended soon after i was diagnosed was: "here we are, in this little room, just 15 of us, when in reality we should be a group that takes up an entire auditorium, at least"

 

I say take up the Rose Bowl in Cali.

 

being a gay man has shed perspective--no pun--on this whole hsv thing. the shame stems from sex, not the skin condition.

 

do you know that professional wrestlers give each other herpes? but because it was passed on while fighting on the mat, it isn't considered an STI. but it's the same freaking virus!!

 

gay men carry so many sex hang ups, such identity issues: am i masculine, am i feminine, am i atop, am i a bottom... to mention a few, and each comes with a degree of stigma... add HSV to the mix and you got some real scared homos out there. i know... i was one of them!

 

so the root cause is our american puritanical, skewed perception that sex is bad. ridiculous! sex is good.

 

so--i don't know how--but i'm willing to start breaking down the walls of silence.

[VirgoGirl]

"so--i don't know how--but i'm willing to start breaking down the walls of silence."

nicely put, Carlos.

 

I would like to start breaking down the walls of silence too. I feel its the only way. I reeeaaaly want to, I just need more courage. Or maybe I am still too early in this stage of acceptance. Either way, I think this is what needs to be done if anything is going to change. Its got to be done through a collective force. I bet we could all make a difference in peoples perspective.

[mr_hopp]

I'm friggin' excited reading all of this. Thank you for starting this thread, SingBlueSilver! I feel a hand-held snowball building momentum into a juggernaut snowball. ;) Let's start brainstorming on what this special community project would look like ... Breaking down the walls of silence as a collective force. I see it as us nudging our snowball down the top of a mountain and watching it as it builds momentum and size until enough people are "out" from the shadows and into the truth.

 

Here's the idea I've been mulling over for quite a while, which sounds like its time has come. I can put more effort into this project after the H Opportunity weekend is over (in a few weeks):

 

1. We submit our own and then recruit others to submit their own "Shame profile" — a shame profile includes a) a blurred photo of the person, b) their alias, c) what being ashamed of having herpes has impacted their life, and d) what is available to this person once shame is shed. (Anything else that would be good to include/ask?)

 

2. Once we reach a certain number of people who fill out a profile (any ideas on what a good number would be? 1,000? 10,000?), ALL profiles go public at the same time — all of our pictures go up live, our actual full names, etc.

 

What does this do? It will allow all of us to step across the line at the same time. As one, united tribe. With no shame. Celebrating who we truly are on the other side of hiding.

 

What do you all think? I'd love to hear all of your ideas on how to make this project even better! This is going to be HUGE. :)

[Kaande05]

Love this thread so so so much!!! I was already debating writing to the area high schools, including the one I graduated from, to speak up about std's especially herpes. I remember 10 years ago sitting in health class and hearing all worst case scenarios and seeing all the pictures of this skin condition and I know that that's where the misconception i had about herpes started. The only thing holding me back is the fact that many hs's promote abstinence thru fear.... And this is how they do it! I don't want it to seem like I'd be minimizing te risk or fear and consequences that can happen from sex but just educate in a more factual manner then what I was taught!

 

I start my college comp class next week and im really hoping to be able to write something that will out me to a broader population of people and educate them. We are only going to eliminate stigma and shame by talking about it and educating people!!!

 

Your all amazing people and I am so thankful I have found this community!

[Kaande05]

This sounds like an amazing idea Adrial! How do u suppose we get people to do these profiles!? Post to other support groups?! Dating sites?put fliars up at pph,clinics, colleges?! I'm all over whatever ideas u have for this!

 

Also where do u think we release the photos? On the Internet?! Talk to news and radio to spread the word? I think Dan Savage would be an awesome person to contact. I know he has had a show or caller once about herpes and the stigma and such. Haha can you tell I'm over excited for this idea?!

 

Anyways hopefully something will happen! Let me know how I can help!

 

[VirgoGirl]

These are all great ideas from everyone! This is exactly what I am talking about!!

 

I think having the idea of creating a profile with a blurred photo is awesome, and knowing that you are not alone in doing so, makes it that much better. And if we all come out at the same time, we have support, therefore nothing to be afraid of!

 

I think this could be a life-changing event, and one that could change people's perspectives ALL OVER THE WORLD hopefully! This is a fantastically huge idea, and it is definately possible if we all stick together.

 

I am with you all on this, and I will commit myself 100%, for I feel this is the best solution, especially in this day and age of technology and resources :)

[VirgoGirl]

So lets see what kind of ideas we can create! If we all put our minds together, we can truly create something beautiful!

[Kristin (breatheandletgo)]

Hey everyone,

 

Chiming in here with a random thought. Have you ever heard of the project called Post Secret? Do a google image search and you will see examples, but the project was started by a guy named Frank Warren. If you want to read a quick version of the story google post secret community dot com and go to the FAQ page.

 

Basically he created a way for people to tell secrets they couldn't tell anywhere else. He has published books and gone all over the place sharing the story and giving people a forum to heal. The main site and the one I am referring you to are amazing. I haven't been to one of his events, but it's on my bucket list. :)

 

I'm an artist of sorts and a visual person and believe art is such a healing thing. I think it would be so cool to ask people create something to communicate their Herpes story along the lines of what Post Secret has done.

 

We could set up an Instagram and Twitter feed, as well as Facebook and Pinterest pages to get the word out and direct people back here to share in this community.

 

I'm working...so these are jumbly quick thoughts, but I got kinda excited reading your posts and couldn't help myself!

 

Kristin

aka breatheandletgo

[Kristin (breatheandletgo)]

P.S. to say we gather and collect the Herpes Secret pieces and launch it all at once on all of the social media channels with a press release to generate buzz.

[VirgoGirl]

Awesome idea! I am a big fan of post-secret as well. truly inspiring, and such an incredible movement. Frank Warren just did a speech at my college last month actually! I missed the presentation unfortunately but really wanted to go!

 

I think something along those lines would tie in very well with this idea!

 

gathering stories, and hearing what people have to say..compiling it together to form a book even..very cool! A journey has to got to begin somewhere, even with the smallest step.

 

thanks for the words of inspiration Kristin!

 

I got inspired too and put up a photo of myself. A little blurred, but its a big step in the right direction!

[VirgoGirl]

timed social media release, yes!

 

this will take time and preparation, but imagine the outcome!

this could generate the big buzz we are all hoping for, and one that the world needs

 

it could start the conversation on a global scale

[mr_hopp]

Yes, I love post secret, too. And this project will be different than that. It will add in the layer of everyone's "secret" becoming public once a certain number is reached. The only reason herpes stays secret is because of the bullshit story we are all collectively believing that having herpes means we're somehow not enough. The "stepping across the line into the light" as a united group is where this project derives its power to heal and transform. When a tribe of enough people chooses to step in unison, then the shame has that much less power to work with. The stigma starts to dissolve.

 

The newsworthiness of this project is huge. Getting Planned Parenthoods and health clinics (each county in the US has a health clinic) involved should be a no-brainer. Once a few news outlets pick us up, the momentum will be unstoppable. But it takes all of us in a concerted effort to spread the word and make this happen. I definitely won't be able to do this alone. And I hear that you're with me. We can join forces to do a campaign that plasters the message all over where it counts.

 

I'll plan on setting up a conference call with all the people who end up on this thread who want to help out. This is all happening in November. I'm officially excited! ;)

[Kristin (breatheandletgo)]

I probably didn't communicate it clearly, but I agree we need a huge number to create an impact and not go public until that goal number feels right. I'm with ya.

 

No one steps out alone. We all step together and give a big middle finger to herpes shame...strength in numbers...darkness to light.

 

Word.

 

 

[Kristin (breatheandletgo)]

And I'm a dreamer so I say, go big or go home. 10,000 is totally do-able.

[AR77]

Can us Canadians join this too? Just wondering how that would work with Planned Parenthoods and Health Clinics, publicity, etc.

[Kaande05]

AR77.... Do u have something like planned parenthood there!? Free clinics where they do STD testing?! I personally do not think that only ppl in the US should be able to join this. Obviously it would be much more difficult to get the message out to news and radio in foreign countries so that may not be something we could utilize but I definitely think blurred out pics/names/ and stories of non US citizens should be included in the whole "stepping forward" thing

[mr_hopp]

Of course this isn't just an American thing! We don't discriminate. ;) I think any country that speaks English would work for now. We have people in Canada, New Zealand, Australia, England, etc. Anyone who wants to throw in their energy and positivity with this movement is more than welcome!