Herpes (and other STIs) and stigma

[ivoryrain]

I'm always interested in the psychology and sociology behind things, so I was wondering why are STIs so stigmatized when they just come with the territory? We don't stigmatize other common infectious diseases that are contracted through close contact. I stumbled across this article (link below). One of the things that really stood out to me was this:

 

"There are anywhere from 56-65 million (yes, million) people living in the U.S. with an incurable sexually transmitted disease. Keep in mind, those include only the tested and documented cases [...]. You can imagine, then, how many more undocumented cases of STDs there must be. To give some perspective, that also means there are more people living in the U.S. with an STI/STD than the entire black (42 million) or hispanic (50 million) populations. And, lastly, 1 in 2 Americans will have contracted an STI by the time they reach the age of 25 – again, this is not including the plethora of STIs not presently being reported."

 

Talk about not being alone! I read somewhere that new STIs are repirted almost as often as the common cold - can't remember if it's in this article or not. This really made me feel better about having an incurable STI, even if it's not specifically about H. There are actually some really interesting research articles about STIs and stigma for anyone who is interested.

 

http://www.thestdproject.com/stds-scarlet-letter-std-stigma/

[seeker]

the stigma exists because of 2 things, first the unfortunate fact that we in the US were founded by a bunch of uptight religious nutbags who thought sex was absolutely shameful, even for procreative reasons no less ( despite the song of solomons hotness). And they continue to this day obscuring and denying the education of people because of their discomfort with the subject. how many Planned parenthood clinics have been shut down over the last 3 decades in which the religious right have made a resurgence in our politics? lets look at the Netherlands, where sex ed is started in kindergarten ( age appropriate of course) sex is out in the open, prostitution is legal and regulated. there are far less instances of STIs and no stigma around them, far fewer teens get pregnant ( they have a saying over there, the pill is to not have babies, the condom is to help not have stis, and a fair number of teens are on the pill) funny thing, those same teens who are on the pill, have less sex!!! yep, more virgins in the same demographic group as americans where the only sex ed is abstinence. ive always thought it funny that in the US we teach kids about drugs to make them not take them but deny them info about sex to make them not have it. wait what????

 

secondly, there gold in them there stigmas! yep H wasn't even stigmatized until a pharma company developed the first antiviral and wanted a hefty return on their investment. sex sells, sexual stigma sells.

[chikitta13]

Stigma is a funny thing, no matter what it's attached to. But for something so common, it's crazy the amount of stigma goes on!! I have had one situation so far where someone made a joke about herpes, and I challenged it. But I catch myself wondering, how much of it is my own internal voice that magnifies the effect? I mean, I know the stigma is there, even if I have yet to fully face it, but do I amplify by my own doubt and fear? I don't know. I have some friends who think I shouldn't tell anyone else about it unless I plan on (or want to) having sex with them. I'm not so sure I agree with this. If it's not a big deal, why does it need to be secret? I'm a big proponent of advocacy, and I see so many advocacy opportunities around education and awareness of HSV, especially in the medical community! Like so many others, if my previous partner knew that STI screening didn't include HSV, I probably wouldn't be a part of this group! If I had the courage to be more open about my own experience, perhaps others would be able to use this information. But it's that damn stigma that prevents me from speaking up! I'm still new to this, just diagnosed in August 2014, so we shall see. I'm not one for silence, so I hope with time, I can forget about the external and internal stigma and speak my experience. Here's a to new year!!

[Fluffy]

Stigma of H is something that I have been aware of since my dx last Winter, I'm glad this post brought it up because I've been wanting to talk about it. For example, just yesterday I was out to dinner with my boyfriend and the table next to us was joking about someone with an H sore on their mouth, and they were laughing about it. For me, I have a lot of mixed emotions when I hear something like that. I feel embarrassed, ashamed, anxious, and defensive...then curious. My next thought after I heard that comment at dinner was, at least 1 in 4 people has H, right? So, I looked around the restaurant, I looked to each couple, each group of people, and wondered... I shouldn't be the only one here that has H, right? Who else has it? What would be their reaction at being stigmatized by a stranger? Am I overly sensitive? Am I going to feel this way for my entire life? For me, I cannot bring myself to be open about having H to others, besides my boyfriend, because I feel like I've let down a lot of people, including myself. I sometimes have obsessive thoughts like, what if I inadvertently give it to my nephew or my parents? What will happen if I have a child one day and they get it? Being the one responsible for passing on the stigma to my loved ones is my worst fear. But, I know that fear might be mitigated if the stigma was squashed. At least for me, living with H isn't that big of a deal in my day-to-day life. Most of the time the only thing that reminds me I have H, is the stigma I feel.

[caterpillarmonarch]

@Seeker - I couldn't agree more.

 

@Fluffy - Right after I found out I had it, I went on a "women's weekend" with a friend and some of her other friends. We decided to play Cards Against Humanity. I couldn't take it. I thought that game was funny the first time I played it, but after my won experience, my view of jokes like that has totally changed.

 

 

[dallas2015]

@Fluffy - I can totally relate to what you're saying. I have GHSV-1 and I have only had one OB, so for me, the only day-to-day struggle is dealing with the stigma... telling new partners or even telling my friends. I have only told a couple friends, but I think I am getting the courage to possibly tell 1 or 2 more who might be understanding. Both of my parents have Oral HSV-1 (they didn't pass it to me) and they act like it's no big deal... knew plenty of kids growing up who would get cold stores, and still no big deal... so why is it such a big deal that I got it on a different part of my body?? That is probably the most frustrating part for me. I have had it for so long though, I really don't ever think about it until I start to date someone new. I'm in my 30's, hoping that I will be able to find my lifetime partner soon and then it will barely be an after thought!

[HBased]

@Seeker - Yes, yes it does. Need to do some fact-checking but was amused when I read this: http://projectaccept.org/herpes-stigma-the-origin/

 

Here's another good read for anyone so inclined... good to keep on deck for sharing at a later date, maybe?

 

http://www.theatlantic.com/health/archive/2014/07/the-overblown-stigma-of-genital-herpes/374757/

 

 

[JessikaRabbit89]

Last week when I went to the clinic, I came across a group of people acting nonchalantly about their test results, and making fun of people who may come up positive. I turned around and straight up told them not to make fun, because they could easily be in their shoes, or mine. I told them my story and every one of their mouths dropped. One girl gave me a hug and said "damn, you're a smart and pretty girl, It's a shame he did that to you. that couldn't be me". I told her you have to make the most of what you have in this life time, whether you have a curable disease or not. Soonafter, everyone shared their STD stories, how they got other infections, I can tell it was a weight being lifted that they were able to vent to people without judgement. It was wonderful. They were all pleased to hear I moved on with my life, and found love and happiness, but I can tell it scared em to death because they kept asking me a million questions about herpes and how to know when you have it lol. I'm trying to decrease the stigma any given opportunity I can. People are shocked at how little informed about the illness they truly are.

[WCSDancer2010]

Whooohooo!!! You go @Jessika!!! I LOVE IT!

 

I've done the same thing when people joke on FB about it ... and I'd do the same thing if I overheard someone like that ... and their reaction shows you how quickly we could squash the stigma just by speaking up with confidence ....

 

Stigma and Shame go hand in hand. It's a cycle that feeds itself. If you buy into the stigma, you feel shame. When you feel shame, you feed the stigma. But when you step up and refuse to buy into the stigma, and you speak your truth, the stigma and shame quickly dissolve. As Brenee Brown says:

 

"Shame is the Swampland of the soul....

 

If we can quiet it (shame) down and walk in and say "I'm going to do this" we look up and the critic that we see pointing and laughing 99% of the time is who? US! .... Shame drives two big tapes... "Never good enough" ... and if you can talk it out of that one .. "Who do you think you are?" .....

 

..."If you put shame in a petri dish it needs 3 things to grow exponentially - secrecy, silence, and judgement. If you put the same amount of shame into a petri dish and douse it with empathy, it can't survive. "

 

Shame

 

 

 

@chikitta13

 

I have some friends who think I shouldn't tell anyone else about it unless I plan on (or want to) having sex with them. I'm not so sure I agree with this. If it's not a big deal, why does it need to be secret? I'm a big proponent of advocacy, and I see so many advocacy opportunities around education and awareness of HSV, especially in the medical community!

 

See the above. You see, they have bought into the stigma .... and that attitude (don't tell unless you have to) feeds the stigma. As you said, if it's not a big deal, why does it have to be a secret?

 

And you know what makes it a "big deal"? ........ Keeping it a secret ;)

[ivoryrain]

You go @Jessika!

 

I wanted to share some information but wanted to reach a more general audience where a lot of people may see it. I didn't want to do Facebook because that would be limited to just my friends (and while I don't mind my friends knowing about my status, I know that people will want to know how I think I may have contracted it, which is likely either from rape or the guy I had sex with shortly after to prove that sex could be "normal" again, and I'm not ready to reveal THAT part just yet). So I decided on reddit, even though redditors aren't always the nicest people lol. I figured it would be good prep for possible negative reactions. Anyway, everyone was really nice, actually! They asked questions, and one person even said he and his fiance were going to be tested to know their status since they were unaware that it likely wasn't included in the routine testing they had before. Another person asked since H isn't really a big deal medically and that it can still be transmitted while taking all of the precautions if they should even really be that concerned about contracting it. I replied that obviously no one wants to contract any type of STD but that it's certainly not a big deal at all if you do contract H. Other than people debating statistics, it went really well :)

[WCSDancer2010]

Good for you @Ivoryrain!

 

ANY way we can get the message out is good ... there's no one way to go about this.... but any education (that is accurate) is a good thing ;)

[JessikaRabbit89]

That's so awesome @ivory. You all seriously gave me the strength to open up about it to others. I'm so happy to have found this website because I'm sure with my timid personality I probably would've lived in a shell forever and stayed in constant shame and self hate.