Genital Herpes (part 5): Talking bout the herp

We hear illness narratives all the time.  We invite cancer survivors onto talk shows to tell their stories.  We read memoirs written by people struggling with mental illness or disability.  These narratives are told for a number of reasons: to help one make sense of his/her/hir illness; to assert control over one’s illness; to transform one’s identity; to justify one’s medical and life decisions; and perhaps most importantly, to build community. Telling our stories of illness helps us relate to one another – to know that we aren’t going through this alone.  Because they provide such an important function in our society (support, hope, community, love, strength, etc) these types of illness narratives are an increasingly popular vehicle for discourse about health and illness in popular culture.  But what about people with herpes?  We don’t hear their stories in the mainstream media.

If you want to hear stories about what it’s like to have genital herpes, you need to go online.  Due to the extreme stigma associated with the STI, the “community” of people living with genital herpes exists only on the internet, where they can connect anonymously through blogs and online forums. There are even dating sites where people with herpes and other STIs can find matches who understand.  It is not hard to imagine that before the internet, genital herpes was a much more isolating experience.

When you have genital herpes, you have the same reasons for sharing your story as anyone else.  Telling your story helps you make sense of what happened (“why me?”); deal with the loss of control over your body; your transforming identity (becoming a stigmatized/tainted member of society); the decisions you now have to make, like telling a sexual partner; and most importantly, it helps create a community where you can find support and connect with others going through the same thing.

There are two distinctive types of stories people tell about having herpes – those that internalize the horrible stigma surrounding the disease, and those that reject it.  The first type that internalize stigma (I am dirty, I am a whore, I am a monster) are pretty upsetting.  When people believe all that negative stigma about people with herpes to be true about themselves, their experience sounds unbearable.  These stories use the same metaphors we talked about earlier. An online forum user wrote: “ I woke up today feeling so empty, alone, rejected & depressed!! … I’m not angry at the person who gave it to me, yet. It’s[sic] my fault.” Another wrote: “ This thing has taken me away from myself… all I’ve been thinking about is being gone. Dead … I just don’t see how I’ll ever be happy again.”  These stories are heartbreaking and make it sound like getting genital herpes is the end of the world.  And isn’t that what we are all so afraid of?

The good news is that the majority of stories like this come from people who have been recently diagnosed with genital herpes. Narratives from people who have had the virus for a number of years, however, are much more positive.  Instead of internalizing all the stigmas and metaphors about herpes, they reject them.  They tell their stories with the goal of helping others feel okay about having herpes.  These stories are there – just like stories about surviving cancer – to help folks realize that herpes doesn’t have to be the end of your life.  In fact, it’s really not that big a deal at all!

These stories often begin by remembering what it was like when they first found out they had genital herpes.  A forum user wrote: “ I remember the devastation. I thought it was the end of the world; I quit eating and lost about 5 pounds in two days. I thought I was the most disgusting, gross, infected, worthless piece of trash in the world.”  But then he goes on to explain how, with time, he came to regard herpes as something totally manageable: “ I came to realize that, as far as living with it, it’s just like dandruff, psoriasis or some other skin disease for the most part; it breaks out, I get uncomfortable, and it heals in time …. It’s really not a big deal once you learn how to handle it.” Actually, a lot of people living with genital herpes think of it like a skin condition. Another forum user wrote: “This skin condition (personally I really see it as that) is only as big and frightening as you allow it to be.”

In these narratives, people with herpes reject the idea that they are sluts or “dirty.” A forum user made this pretty clear when she wrote “People who take a shower are clean. Those who have herpes are NOT DIRTY.”  In this interview on the Tyra Banks Show (a rare case where someone with herpes shared her story on TV!), Michelle Landry made it clear that she wasn’t any of those negative stereotypes.

Many people share their stories as a conscious effort to encourage those who do not yet
have an STI to protect themselves and to provide support for those who do.  On Sex Etc., Holly Becker wrote: “So, think about my story when you’re having sex. Ask your future partners the hard questions, too … And think about my story when you hear that someone has an STD. Most likely, if they have one, they are scared and lonely, and could use a friend.” An anonymous message post reads: “I hope my words and experience with this can help others learn to be OK with themselves after being diagnosed with this. Life does go on and you can be happy!!!”  More great stories like this can be found at the ASHA Herpes Resource Center.

Some people find the experience of opening up and talking about having herpes as liberating. In an interview about his book Monsters, Ken Dahl said, “ I’ ve got nothing to lose now, and it’ s really liberating. Now I kind of want to do it for everything else in life, because no one can make fun of me. What can they say that I haven’ t already said?”  Christopher Scipio, author of Making Peace With Herpes (2006), has become an advocate for this:

Instead of being imprisoned by this disease, I decided to free myself. I am nolonger afraid of saying the word and letting people know that I am one of “ them.”I have herpes, but herpes doesn’ t have me … I am at peace with my place in this world, and I have discovered the joy of encouraging others to liberate themselves from the stigma.

If you try, you can find plenty of stories about having herpes that really convince you that hey, this isn’t the end of the world.  Thanks to condoms and suppressive therapy (drugs like Valtrex), you can still have a healthy sex life with herpes.  The drugs also help suppress breakouts and make them less severe when they do happen.  Herpes will not kill you, and doesn’t really have any serious complications or health risks (except you might need to get a C-section to avoid passing it to your baby).  All in all, it’s a relatively mild condition that is totally manageable.

Sounds to me like dealing with the stigma and shame of herpes is a lot worse than dealing with the disease itself.  Is it really worth the agony?  We’re going to hash it out in Part 6, the conclusion of this series on genital herpes.  Stay tuned!

For more in the series:

Part 1: This is a post about genital herpes

Part 2: Actually, genital herpes IS a joke

Part 3: More than 51 million Americans are cheaters and whores, apparently

Part 4: Herpes makes you dirty and also a monster

Genital Herpes (part 2): Actually, it IS a joke.

Ever notice that the only time we hear herpes mentioned in movies or on TV is when it’s the butt of a joke? Genital herpes is an easy target for humor because it is not fatal and the people who suffer from this STI are not usually considered victims. Unlike HIV/AIDS, genital herpes is a relatively mild condition that does not warrant the seriousness or sensitivity that society grants fatal illness. Instead, genital herpes is understood to be a punishment, or something you “ bring upon yourself.”  People with genital herpes aren’t though of as victims; they’re thought of as sluts, monsters, lepers, or just stupid.  When we combine these factors, people with genital herpes are obvious subjects for ridicule.

A quick search on the Internet Movie Database will reveal that the majority of the films and scripted TV shows that mention genital herpes are comedies. The Hangover features a classic herpes joke: “ What happens in Vegas, stays in Vegas. Except for herpes – that shit’ll come back with ya.”  Another common quip dubs genital herpes “ the gift that keeps on giving.”  Let’s not forget this one from Sue Sylvester on Glee: “You know, for me trophies are like herpes. You can try to get rid of them but they just keep coming. You know why? Sue Sylvester has hourly flair ups of burning itchy highly contagious talent.”

Herpes jokes are also common in stand-up comedy. In a routine called “ Herpes Facts,”comedian John Ramsey discusses a statistic from a Valtrex commercial:

The Valtrex commercial Ramsey refers to is part of an advertising campaign that marked thefirst time a herpes medication was advertised to a national audience, making the disease morevisible than it had ever been in the mainstream media. The commercials could have beengroundbreaking in their attempt to normalize the STI, but instead they became a popular vehiclefor the same sorts of stigmatizing jokes the ads were intended to diffuse. The huge number ofValtrex parodies on Youtube demonstrates just how entrenched genital herpes humor is in ourculture, and Valtrex’ s inability to overcome it.

On her talk show, Tyra Banks interviewed Michelle Landry, a woman with genital herpes, about how she felt when she was first diagnosed.  She responded: “ I was so shocked. Thinking back to that day, all I thought about was the jokes I’ d heard about herpes, the stigmas.” Tyra then commented on the profusion of herpes jokes in popular culture: “ Like we were talking about earlier, jokes, jokes, jokes… so many people have herpes that I bet a lot of people telling the jokes probably have it.”

So why are these jokes so popular?  And why isn’t anyone saying anything about how miserable it must be for people with genital herpes to hear them and have to laugh along in order to avoid detection?

The jokes generally go unchecked since those who find them offensive or cruel are silenced by the fear of association with genital herpes, or the fear of being exposed as having genital herpes.  Both outcomes carry the very real risks of shame, judgement, and rejection.

At the root of the “ herpes humor” phenomenon is the extreme stigmatization of genital herpes as a grotesque or disgusting indicator of promiscuity and infidelity.  Stay tuned for more on stigma in part 3 of this series.

Part 1: This is a post about genital herpes.

This is a post about genital herpes (part 1)

I have been MIA the past few weeks because I have been working on a paper for my grad program on genital herpes.  The paper is about the social representation of the disease – how genital herpes is discussed and framed in pop culture and the media, etc.  I have learned a lot writing this paper and I’m excited to share it with you.  Most of what I learned came from my research survey of blogs, film, TV shows, Youtube videos, online forums, images, and health communication theory texts.  But a lot of what I learned was more organic than that.  I learned a lot about the social perception of genital herpes just from the experience of writing a paper about genital herpes.  Let me explain what I mean.

I am a pretty open person and I like to be controversial.  That’s why it was strange to me that when I chose genital herpes as my paper topic, I was a little hesitant to share it with my classmates and the world, aka Facebook.  But being me, I did it anyway.  Dr. Anna Wald, a virologist at the University of Washington, told the New York Times, “ Herpes has a stigma attached to it that even H.I.V. doesn’ t have anymore.”  I think she’s right.  Recently, Mondo Guerra publicly announced his HIV positive status on Project Runway and there was an outpouring of tears, love, and empathy.  This would not be the case for anyone who openly revealed that they had genital herpes on TV.  Can you even imagine anyone doing that?  We assume that one would have to be crazy to share such a shameful, stigmatizing, and personally damaging secret.

I realized that I was uncomfortable associating myself with genital herpes.  Will people think I have it? Why else would someone write a paper about genital herpes and risk that association if they didn’t have it, right?  So I pressed on, putting myself at the center of an itty-bitty social experiment.  I told everyone about my paper on genital herpes.

For two weeks, my gchat and AIM away message read “herpes, herpes, herpes, herpes.”  I received the gamut of responses, from “you have herpes????” to “ewwww” to “I love the fact that you’re comfortable enough to leave herpes as your status message.”  I posted updates about my herpes paper to Facebook all the time.  Most of them got “likes” from classmates and my former sex counseling buddies from college.  In response to a status update noting that just about every Judd Apatow movie includes a herpes joke, a friend joked, “herpes is no joke.”

I wrote the majority of my paper in the Emerson College and Tufts Med School libraries.  I couldn’t help but wonder what someone would think if they checked my browser history to find a plethora of articles, info guides, and support forums about genital herpes.  I also was wary of judging eyes walking past that might catch a glimpse of “genital herpes” on my screen.  I even felt this way in the med school library, where real medical students were making powerpoints with much grosser-looking slides right next to me.  (Abdominal surgery pics? Yuck!)

I’m not exactly new to this feeling.  I spend a lot of time and energy talking and writing about STI prevention, not to mention about rights and respect for people who have STIs. I’m sure plenty of people have already wondered if I do this because I have an STI.  Hell, you’re probably wondering right now.  (Would it make me more credible as a sexual health writer if I did?  Less credible?  Would it change your opinion of me as a person?)

I’ll be completely honest.  When I started writing this post, I paused for a second because I realized that writing this post would forever associate my name with genital herpes in the annals of internet history.  Me and genital herpes, total Google search bffs.  (“Writing about herpes on the internet is like herpes, it will be there for life.”)  But I don’t shy away from things like this.  That’s kindof what I’m about.  Genital herpes is NOT A DIRTY WORD.  But think about it.  Genital herpes is so stigmatized that even a veteran sexual health blogger thought twice about writing about it.

In the next few days I’ll be sharing some more from my paper about genital herpes stigma, metaphors, “herpes humor,” and narratives.  Stay tuned, and take a second to think:  Would you be willing to speak out for genital herpes awareness, or openly support those with genital herpes?  Or would the risk of stigma-by-association be too great?

Read on to part 2 – Genital Herpes: Actually it IS a joke