I've been working on a paper for my grad program on genital herpes about the social representation of the disease – how genital herpes is discussed and framed in pop culture and the media, etc. I've learned a lot writing this paper. 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. 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 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.

When I started writing this, I paused for a second because I realized that writing this 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 kind of 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 just writing about it.

Genital Herpes: Actually, it IS a joke.

Ever notice 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's 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 usually 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 thought 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 IMDB 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 the first time a herpes medication was advertised to a national audience, making the disease more visible than it had ever been in the mainstream media. The commercials could have been groundbreaking in their attempt to normalize the STI, but instead they became a popular vehicle for the same sorts of stigmatizing jokes the ads were intended to diffuse. The huge number of Valtrex parodies on Youtube demonstrates just how entrenched genital herpes humor is in our culture, 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, judgment, 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.

More than 51 million Americans are cheaters and whores, or so we're told

Genital herpes occupies a uniquely stigmatized and shameful space in American culture. STIs are always stigmatized due to the cultural and religious moralization of sexuality in America. They are often assumed to be the “consequence” of promiscuity.

The entry on genital herpes in the Encyclopedia Dramatica, a satiric version of Wikipedia, reads: "In fact, you get genital herpes because you are a whore." Right wing blogger Melissa Clouthier writes: "Twice as many young adults ages 20 – 29 have herpes than did 20 years ago. This is a recurring tragedy for the sufferer and his partner–a consistent, unrelenting reminder of promiscuity that cannot be undone." These examples demonstrate two different types of slut-shaming going on: the former is simple, ignorant shaming for the purpose of "making a funny," while the latter has a religious/political agenda behind it suggesting that herpes is the consequence of deviant sexual behavior. (See how the Right capitalizes on ignorance and reinforces ignorance all at the same time?)

The connection between genital herpes and promiscuity is consistently made in film and TV as well. In Forgetting Sarah Marshall, the rock star Aldous Snow reveals to his girlfriend that he has genital herpes: "Well, look, you know, I’ve not told you I’ve got genital herpes because it’s not inflamed at the moment." Here, genital herpes is used as a device to emphasize Snow's promiscuous, rock n’ roll lifestyle. Stephen Colbert of the Colbert Report poked fun at the association between herpes and promiscuity with a story about oysters infected with a strain of herpes. Colbert called them "oyster sluts," asking, "Come on oysters, have you never heard of protection?"

Perhaps the best recent pop culture example of the link between genital herpes and promiscuity in the American imagination is MTV's Jersey Shore. After the first episode aired, one blogger called it "The Real World with herpes," implying that the show was comparable to The Real World, another MTV reality show first broadcast in 1992, but with more promiscuity. In 2010, a Jersey Shore producer made headlines when she said "We hand [Valtrex] out like M& Ms. ‘Hey kids, it’s time for Valtrex!’ It’s like a herpes nest. They’re all in there mixing it up." The cast of Jersey Shore denied this allegation in an attempt to avoid the stigma of genital herpes. In later episodes, however, cast members make herpes jokes themselves, categorizing certain women as promiscuous or “ tainted” in a humorous way. In doing so, they become both victims and propagators of this stigma, thus strengthening the association between genital herpes and promiscuity.

About 1 in 5 or 1 in 6 people in the U.S. have genital herpes. That means there are currently over 51 million Americans with genital herpes right this very second. That’s more people than there are Latino Americans (46.9 million) or African Americans (37.6 million). What’s the likelihood all of those people are "sluts," or "deserved" to get herpes?

Genital herpes is often framed as physical evidence of infidelity. This Saturday Night Live parody of a Valtrex commercial plays with this stigma. In the sketch a husband and wife are sitting together on a couch and it is obvious the husband has been unfaithful. When the wife says she finds it odd that a married couple with no history of STIs could have genital herpes, the husband replies: "But then I explained it, and that was the end of it, and there was no need to talk about it anymore." See how people with genital herpes are further stigmatized, not only as cheaters but as liars? The majority of Valtrex parodies play with the stigma of people with genital herpes as cheaters and liars in a similar way – perhaps suggesting that people believe using Valtrex is dishonest because it makes herpes easier to hide.

Lying about having genital herpes is also discussed in the context of celebrity divorces. For example, David Gest made headlines when he accused Liza Minnelli of giving him herpes in the midst of their divorce. In an attempt to overturn a prenuptial agreement, David Hasselhoff's ex-wife accused him of infecting her with genital herpes. In some cases, lying about genital herpes becomes a legal or criminal issue. In 2005, a woman sued NFL quarterback Michael Vick for negligence and battery for infecting her with herpes. Celebrities often use their fame to help raise awareness for diseases or health-related causes. (Think: Michael J. Fox for Parkinson’s Disease.) When it comes to genital herpes, however, no celebrity would risk the stigma of association or exposure. As a result, the only time we hear about a celebrity having genital herpes is in the context of a scandalous rumor, bitter divorce, or lawsuit. No one in their right mind would dare be open about having genital herpes, right?

Then, wait. It’s not safe to be open about having genital herpes yet, you’re a liar and a cheater if you aren’t? Seems like you’re damned if you do, damned if you don’t here. It’s almost as if we want people with herpes to wear a scarlet “H” on their clothes so we know when to run away screaming. This seems a little much for a disease that is, in actuality, a relatively mild condition with hardly any health complications that can be managed quite well with medication.

Herpes, apparently, makes you dirty and also a monster.

Genital herpes stigma is largely constructed and reinforced through metaphor. The dominant herpes metaphors are drawn from the aesthetically repugnant nature of its symptoms (the way herpes lesions look) and liken carriers to "monsters" or "lepers."

The most dreaded are those that seem like mutations into animality (the leper’ s “lion face”) or a kind of rot (as in syphilis). Underlying some of the moral judgments attached to disease are aesthetic judgments about the beautiful and the ugly, the clean and the unclean, the familiar or the alien and uncanny…What counts more than the amount of disfigurement is that it reflects underlying, ongoing changes, the dissolution of the person. - Susan Sontag, Illness as Metaphor and AIDS and its Metaphors

Considering the graphic and grotesque nature of genital herpes images on the internet, it isn't difficult to explain why leprosy is a common metaphor for genital herpes. On Yahoo Answers, a user asks, "Do you ever get over feeling like a leper?" On another forum, a user wrote: "I feel like a leper. Who’ s going to accept me like this?" Christopher Scipio, author of Making Peace with Herpes, calls himself a "modern day leper."

The thing is, leprosy is actually a real disease that people today still suffer from. Though it is uncommon in the U.S., the World Health Organization (WHO) estimated that between 2 and 3 million people were permanently disabled because of leprosy in 1995. We now know that leprosy, or Hansen’s Disease, is neither sexually transmitted nor highly infectious after treatment. Approximately 95% of people are naturally immune, and people with Hansen’s Disease are no longer infectious after as little as 2 weeks of treatment. Also, it’s totally curable when you have the resources. Hansen’s Disease is probably the most stigmatized illness in the history of illness, and by associating it with genital herpes – one of the most stigmatized illnesses in contemporary western culture – the metaphor mutually harms sufferers of both herpes and leprosy, and sets back the goal of destigmatization for both diseases.

Another prevalent metaphor for genital herpes is the monster metaphor. It is often used to describe the virus itself, i.e., "the herpes monster," or by people with genital herpes to describe themselves, i.e., "I am a monster." In an online forum, one user wrote: "The herpes monster has destroyed my life." Another user wrote: "I’m a monster and I don’t deserve living."

Let’s just back up a second.

The monster metaphor is central to Ken Dahl's aptly named graphic novel, Monsters. The novel is a groundbreaking, semi-autobiographical narrative about the experience of contracting herpes. Despite the fact that the protagonist’s experience is primarily concerned with oral herpes, I’m including it because it provides a powerful, illustrative, and in-depth examination of the experience of living with herpes, one that is rarely found in literature.

As is obvious from the title, the monster metaphor is pervasive throughout the novel, both in the text and illustrations: "Sometimes I feel like my body’s been taken over by a parasitic monster, and sex is now just this monster’s way of finding new hosts to infect." Text like this is accompanied by vivid imagery of the protagonist encapsulated in giant, grotesque blobs of sores and pustules.

Let's face it: nobody wants to f@ a monster… and become a monster themselves. But look at it from the monster's point of view. You just want what everyone else wants – acceptance; affection; inclusion… and of course survival. Just for that, your life has to be a gauntlet of pretty faces recoiling in horror.

Implicit in the monster metaphor are feelings about genital herpes as a manifestation of evil. Susan Sontag wrote: "Feelings about evil are projected onto a disease. And the disease (so enriched with meanings) is projected onto the world." As a result of this projection, people with genital herpes are sometimes considered predators or dangerous to the community at large. This is the notion behind the awful, humiliating, privacy-violating and wholly unnecessary STD Carriers Disease Control Prevention Services website. The site hosts a STI carrier "registry" where users can report people with STIs (including their names and locations) to a public database reminiscent of the National Sex Offender Registry (STDs are now refered to as STIs). This website is an unfortunate example of how the monster metaphor and its connection to "evil" can lead to fear, or even persecution, of people with genital herpes and other STIs.

Another common metaphor surrounding genital herpes, as with many other STIs, is the idea that someone infected with HSV is "dirty" and someone who is not infected is "clean." This metaphor is commonly used in reference to STIs and dates back to the nineteenth century. According to Sontag, "Specific diseases, such as cholera, as well as the state of being generally prone to illness, were thought to be caused by an 'infected' (or 'foul') atmosphere, effusions spontaneously generated from something unclean." Though we now understand that the cause of infection is due to viruses or bacteria rather than miasma, the dirty/clean metaphor is still pervasive. Today, the word "dirty" also carries a sexual connotation, and for this reason, it is a popular metaphor for people who have genital herpes.

This language is all over the place. One forum user calls genital herpes her "dirty secret." On Yahoo Answers a user writes: "my friend just told me she has genital herpes, now I can’t help but think she’s dirty." Another forum user concerned that he might have contracted genital herpes writes: "The two women I slept with swear up and down they are clean." In a routine called "The Herpes Myth," stand-up comedian Courtney Cronin seems to differentiate between people who got it because they were victims (someone lied to them, etc) and those that go around spreading it willy-nilly because they are "dirty, disgusting pigs."

Really? Let’s look up at our stick figure friends back there to demonstrate. Which one is the victim, and which one is the dirty, disgusting pig? Hmmm…

Herpes is also often used as a metaphor to describe something that "keeps coming back," or "will not go away." At her Comedy Central roast, comedian Joan Rivers closed with this metaphor: "I plan to be around for the next hundred years just like herpes. When you least expect it, I will be there." You know, Joan has a point. Herpes IS going to be around forever, and as you get older your chance of getting it only increases.

Do we really want to keep perpetuating these myths about people with herpes as dirty, scary monsters? Forever? Sure, maybe putting down those who have genital herpes is a way to make people without herpes feel better but the chances are high that those people will someday contract herpes and what then? That’s when they – if not everybody – has to face the fact that after vehemently propagating and internalizing this stigma for years and years, they are now stuck inside a shitty social prison of their own making. Who’s the monster now?

Talking bout the herp

We invite cancer survivors onto talk shows to tell their stories. We read memoirs written by people struggling with mental illness or disability. Illness 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 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 not usually 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."

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. At 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."

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?”

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 have a healthy, happy 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 typically pose any serious complications or health risks for most people most of the time. It’s usually 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?

Mind over Herpes

All of this leads me to the conclusion that dealing with herpes stigma is the worst part about having genital herpes. In other words, the emotional effects of herpes stigma are much worse than the physical effects of the STI. I have even heard that some doctors advise against getting tested for herpes because if you aren’t having symptoms, the the risk of emotional devastation from a false positive is worse than the risk of delaying the diagnosis.

We may not be able to cure herpes, but we can certainly work to reduce stigma associated with it and make the experience of a herpes diagnosis less emotionally devastating. So why aren’t more people trying to do this?

Why don’t messages about genital herpes from sexual health professionals often address the pervasive stigmas associated with the disease? Instead of talking about the genital herpes we know from jokes, monster metaphors, Google image searches, and celebrity divorce scandals, health organizations give us dry fact sheets and statistics. The genital herpes described in those fact sheets doesn’t feel like the same genital herpes we laugh at, recoil from, or vilify in pop culture. One explanation is that health communicators avoid acknowledging stigmas and negative metaphors associated with genital herpes in their messaging in order to remain neutral or non-judgmental. It's also possible that health communicators do not wish to reduce stigma because framing genital herpes as no big deal, or nothing to fear, could have negative consequences for prevention efforts because people will care less about being cautious. There may even be perceived incentive to cultivate and encourage stigma in order to "scare" people into practicing safer sex.

Some health resources do address stigma, however, like the American Social Health Association. The ASHA Herpes Resource Center features personal narratives, hotlines, and support groups, with the same prominence as factual information about the STI. They understand that the emotional devastation of genital herpes is as much a part of the experience of the STI as the physical symptoms, and just as important to treat. The ASHA’ s approach could serve as a helpful model for health providers, educators and communicators. The health education community needs to take an approach that not only encourages prevention, but also discourages further stigmatization of the disease. The medical community needs to take an approach that treats not only the physical symptoms of genital herpes, but the social and emotional effects of the disease as well. And as for individuals, we all need to step up and do our part to get educated and put a stop to this pointless discrimination.

I have spent a lot of time really thinking about genital herpes this month because I’ve been writing a paper on it for school. Most of us, though, don’t spend a lot of time thinking about genital herpes, or how many of our friends might be dealing with the shameful secret and how our careless jokes might make them feel. And since sex is like Russian Roulette and any one of us might wind up with genital herpes, helping to fight the stigma, shame, and fear of the disease will help make the diagnosis less emotionally devastating when/if it happens to us, or our friends or partner.

Here are some things you can do:

Add “people with STIs, including herpes” to your mental list of groups that face discrimination (like GLBT folks, people with disabilities, women, Muslims, African Americans, Latino Americans, etc). Recognize their struggle and support them when you see discrimination happening.

Take a stand against herpes or other STI jokes that would make someone who has it feel ashamed or uncomfortable. Step in and say, "Dude, that’s not funny. How would you feel?"

Pay attention to language. Pay attention to metaphors like monster, leper, and dirty or clean. Try to stop using them yourself, and try to get your friends to stop as well.

Pay attention to stereotypes. Correct people when they try to say that being a slut means you probably have herpes, or that people with herpes are liars and cheaters.

Tell your story. If you have herpes, it may be too scary or too risky to come out about having herpes in public or to your friends and family. But you can share your story anonymously either online or using a pen name. Share your experience to help dispel the myths about herpes, and to let others know that they are not alone and that herpes is not the end of the world.

If you’re in college, investigate your health center and on campus sex ed resources. Pay attention to how they talk about herpes and whether or not their approach is reinforcing or rejecting stigma. If you don’t like what you see, try to change it.

When I started this series, I talked about how I was uncomfortable with the idea of blogging about this and forever associating myself with genital herpes. I knew that everyone would be wondering if I had it, because why else would I write about it? Well, I’m not going to tell you if I have it. But it’s interesting to think about – if I did, would that change how you felt about what you read? If I didn’t, would it change it in a different way? I don’t know. What I do know is that most people aren’t comfortable enough to speak out about herpes awareness, but I am and I did it. And my world did not come crashing down.

I hope that this, in some way, gives others the courage to speak out and make a difference. Because when almost 25% of the population is demonized for having a virus, well, it’s just unnecessary. People with herpes are not sluts. They are not monsters. They are not predators. They are not dirty. They are just people, and like anyone else with a disease, they deserve respect and compassion. After all, any one of us could end up with herpes. And when that happens, my friend, the joke’s on you.

Leah Berkenwald is the editor of Jewesses with Attitude and a blogger for Ms. Magazine. Her writing has been published in the Daily Hampshire Gazette, AlterNet, and the Sisterhood blog. She is currently studying Health Communication at Emerson College and muses on health and feminism at talkinreckless.com.