Category Archives: Health Communication

“All Adventurous Women Do”

HBO's GirlsOn the third episode of HBO’s new series, Girls, the protagonist Hannah (played by creator Lena Dunham) is diagnosed with human papilloma virus (HPV). Distraught, she tells her best friend, who replies with the most revolutionary phrase ever uttered on television regarding STI stigma: ”All adventurous women do.”

STI stigma is not difficult to understand. Since STIs are sexually transmitted, they’re easy to interpret as punishment for promiscuity. People with STIs are often characterized as slutty, dirty, trashy, or stupid and reckless. And when someone is diagnosed with HPV–no matter how confident she is in her choices, no matter how careful she is–she’s faced with the crushing weight of this stigma. She must try her darndest not to internalize it–not to believe that she is being punished for her sexuality, not to believe that she brought this upon herself, or that this viral infection is indicative of poor moral character. This is extremely difficult because no one has prepared her for this, and she will almost certainly go through it alone.

Since HPV and STIs are treated as a shameful secret, we don’t ever talk about what the process of diagnosis and its aftermath is like, and as a result, we never hear what it was like for someone else. We each have to figure out how to cope on our own, in silence, without the comfort or guidance of those who have been there and can understand. There are no celebrity spokespeople for HPV. No star athlete role models. And so very few narratives in television, film, or literature.

It’s rare to see STIs on television. Rather, it’s rare to see STIs on television outside of medical and crime dramas where STIs are used as a “who done it” plot device to reveal some unexpected twist regarding infidelity or some otherwise inappropriate sexual behavior. It’s rare to see a character simply living with an STI–getting diagnosed, experiencing treatment, navigating relationships, and dealing with shame and stigma in every day life. It’s rare, but it shouldn’t be.

HPV is the most common STI in the United States. The CDC approximates that 20 million Americans currently have HPV, with six million new infections occurring each year. (For reference, 20 million people is roughly the population of Beijing, New York state, and the entire country of Australia.) The CDC estimates that 50% of sexually active Americans (men and women) will contract HPV at some point in their lives, although the American Social Health Association thinks it’s closer to 75-80%. For women, the rates are even higher: the CDC estimates that, by the age of 50, at least 80% of women will have acquired sexually transmitted HPV.

So, if at least 50% of Americans will one day have the experience of being diagnosed with HPV, shouldn’t we be doing something to prepare them for that moment so that the bottom doesn’t drop out from under them? Shouldn’t we let them know that this is a shared experience and that they don’t have to feel so alone? Shouldn’t we be working to combat stigma at the social level so that we can reduce the emotional damage it inflicts?

Writing HPV and other STIs into television narratives is a great way to challenge and combat stigma. Especially when the character is able to make peace with the diagnosis, providing a model for the rest of us.

“All adventurous women do.”

In that one glorious sentence, Girls let us know that HPV is common and that instead of a being a sign of poor character, it’s a mark of an adventurous spirit. This one line erases the stigma and reframes HPV as something normal, even positive. “All adventurous women do” allows Lena Dunham’s character Hannah to own the diagnosis, to embrace it, to wear it as a badge of honor. And it teaches the rest of us–all of us girls who have felt the waves of shame and guilt crashing on top of us, suffocating us–that we are okay. That HPV, much like traveler’s diarrhea, is just another part of the experience of being an adventurous woman in the 21st Century.

Positive body image won’t make you fat: The case for body positive health promotion

I’m currently designing a social marketing campaign to improve body image among undergraduate women at a major university. On three different occasions, my classmates—a cohort of public health, nutrition, and health communication students in leading graduate programs—expressed concerns about my project, asking “Aren’t you worried that you’re promoting obesity?”

There seems to be a dangerous misconception in the public health community that the goals of positive body image promotion and obesity prevention are at odds. That somehow, by helping people feel better about their bodies, we will inadvertently “encourage” obesity.

But body image promotion isn’t about glorifying fatness, just like obesity prevention isn’t (or shouldn’t be) about the glorification of thinness. More accurately, body image and weight management are interconnected elements of holistic mind-body approach to health and ultimately, the public health community has more to gain by thinking of them as complementary rather than competing interests.

Obesity prevention efforts may appear to benefit from a status quo that stigmatizes fatness and worships thinness, but the evidence just doesn’t support it. We live in a culture that idolizes underweight supermodels and relegates fat actors to fart and food jokes, and yet none of it has done anything to make people healthier.

A lot of people worry—myself included—that without body dissatisfaction, we would lose our motivation to slim down. It’s an easy trap to fall into because, for many of us, negative thoughts are the only motivation to lose weight we’ve ever known. It’s scary to imagine life without our internal “fat talk”; it takes work to imagine using positive feelings as a source of motivation.

But contrary to popular belief, shame is not a good motivator. In addition to reinforcing an impossible, demoralizing standard of beauty, using fat shame as motivation will always backfire. Fear, shame, and self-disgust may prompt people to change their habits temporarily, but once they start to feel better and the bad feelings dissipate, they are bound return to old habits. Motivation-by-fat-shame doesn’t create a culture of health; it creates a culture of yo-yo dieting and January gym memberships abandoned by March.

Not only does fat shaming fail to help people get healthy, it actively hurts people, leaving maelstrom of negative body image, low self-esteem, depression, eating disorders, and other pathological eating and exercise behaviors in its wake. This is no small matter, as these conditions cause pain and suffering for millions of men and women, of all ages, all over the country and the world.

Obesity prevention efforts that reinforce the thin-ideal status quo are doomed to perpetuate a broken system where body image dissatisfaction is normative, obesity rates keep rising, and the multi-billion dollar weight loss industry capitalizes on both. But obesity prevention efforts that embrace positive body image promotion, on the other hand, have a chance to break the cycle.

Meaningful body image promotion encourages women to reject the tyrannical and reductive thin-ideal portrayed in the media, and to understand that pursuing a healthy lifestyle for its own sake is much more rewarding than obsessing about dieting and weight loss. After all, “thin” doesn’t translate to “healthy.”

For example, the Health At Every Size (HAES) movement is based on the understanding that weight does not determine health, and that exercise and good nutrition are beneficial, whether or not they result in weight loss. Instead of using BMI, HAES advocates using more specific measures, like blood pressure and cholesterol, to determine one’s health status.

Instead of relying on body dissatisfaction, HAES teaches us to draw motivation from positive sources, like the desire to explore new hobbies (yoga, archery, kickball), to achieve new goals (run a 5k, learn to surf), or to enjoy the flavor and feeling you get from nourishing your body with healthy foods. This is the kind of lifestyle change that keeps people engaged and motivated for the long haul, and it will keep us healthier, whether or not we’re overweight. Also, it’s fair to say that by letting go of the “impossible dream” of one day looking like the (photoshopped) people on the cover of magazines and by learning to accept and love our bodies as they are, we’ll be happier too.

This type of holistic approach—incorporating positive body image, mental health, physical activity, and good nutrition—is actually sustainable because it promotes an understanding of “health” as a lifelong process rather than a set of restrictions or punishments to be lifted once you reach that magic number on the scale.

We know that there are no health benefits to negative body image. So why would we limit the scope of obesity prevention to exclude the potential benefits of positive body image?

Encouraging positive body image does not “promote” obesity. Rather, it helps people let go of the shame, fear, and unsustainable weight loss behaviors that are keeping them trapped in a state of bad health.

The MBTA should not allow advertising from crisis pregnancy centers

The MBTA is where you’ll usually find ads for Jamba juice and Jansport backpacks, local research studies, and public health campaigns. Currently, though, much of this highly-coveted space is occupied by ads for Daybreakinc.org, an anti-abortion crisis pregnancy center. The ads don’t tell you that Daybreak has an anti-abortion agenda; they claim to offer “compassion,” “empowerment,” “hope,” and most inaccurately, “options.” This is in fact the major criticism of crisis pregnancy centers—that they misrepresent themselves as neutral parties. They are not, and they should not be allowed to advertise their heavily-biased and manipulative services on the MBTA.

The point of a crisis pregnancy center (CPC) is to keep pregnant women from having abortions, often by delaying them with offers of pregnancy tests and ultrasounds until it’s too late. What is truly sinister about CPCs is their use of untrue or misleading information to scare women away from choosing abortion, with false claims such as: abortion causes breast cancer, abortion is psychologically damaging, abortion can lead to sterility, and birth-control pills cause abortion. A 2006 Congressional investigation found that 87 percent of the centers surveyed provided false or misleading medical information.

Daybreak is guilty of this type of misinformation, although they are careful not to appear so on their website. It’s no wonder they are covering their behinds—legal action has been taken against CPCs in a number of states regarding their deceptive advertising in New York, California, Ohio, Missouri, and North Dakota.

According to their website, Daybreak claims to provide “accurate information about pregnancy, fetal development, lifestyle issues, and related concerns” as well as offer “accurate information about abortion procedures and risks.” They say “our advertising and communications are truthful and honest and accurately describe the services we offer.” But when you dig in deeper, you will find a sample if misleading and just plain untrue “facts” on their website:

  • Daybreak claims: “[Plan B] It may alter the uterine lining which prevents the fertilized egg from implanting, resulting in an early abortion.” (This is wrong—the dissolution of a fertilized egg is NOT “early abortion.”)
  • Daybreak claims: “Complications may happen in as many as 1 out of every 100 early abortions,” when according to the Guttmacher Institute, “the risk of abortion complications is minimal: Fewer than 0.3% of abortion patients experience a complication that requires hospitalization.”
  • Daybreak claims: “Women who have experienced abortion may develop the following symptoms: guilt, grief, anger, anxiety, depression, suicidal thoughts, difficulty bonding with partner or children, eating disorder,” when the American Psychological Association’s Task Force on Mental Health and Abortion reported that “the best scientific evidence published indicates that among adult women who have an unplanned pregnancy the relative risk of mental health problems is no greater if they have a single elective first-trimester abortion than if they deliver that pregnancy.”
  • On the particularly appalling “For Men” section of the Daybreak website, they write: “Many women who have had abortions report that they were waiting for their boyfriends/husbands to stop them. Some even say that they sat on the table hoping the father of their baby would ‘rush through the door to rescue me and take me away somewhere safe.’” (Um, citation needed?)

I’m not trying to make the argument that free pregnancy counseling is a bad thing or that the people at Daybreak are “bad” people, but pregnancy counseling, or any counseling for that matter, should be unbiased and informative. No where on the Daybreak MBTA ads are women informed that the the “free pregnancy counseling” is actually anti-abortion counseling, and that is dishonest, manipulative, and ultimately wrong. Women facing unplanned pregnancies need to know all their options, without the implication that one is better than another, and they need real medical information, not the “facts” listed above.

The MBTA is currently under fire for proposed fare increases and service cuts. They may be desperate for funds, but that does not excuse this moral misstep. CPCs are a growing threat to women’s health and the MBTA is the last place Bostonians should be exposed to anti-abortion propaganda.

“Shame and Blame: Facing the Unintended Consequences of Health Messaging” on Huffpost

Today my op-ed on shame and blame in health campaigns was published on the Huffington Post. Check it out!

Shame and Blame: Facing the Unintended Consequences of Health Messaging

A solemn black and white poster shows a picture of an obese girl with copy that reads: “Warning: It’s hard to be a little girl if you’re not.” Another poster displays a woman’s naked legs with her panties around her ankles and the word: “She didn’t want to do it, but she couldn’t say no.” The first is part of the Georgia “Strong 4 Life” campaign to prevent childhood obesity; the other is part of the Pennsylvania “Control Tonight” campaign to reduce excessive alcohol consumption. Though the campaigns are unrelated, they have one thing in common: disregard for the effects of shame and blame — the frequent unintended consequences of health campaigns.

The promotion of health and social welfare is one of those noble causes that attracts people who want to “do good.” Physicians are taught to “First, do no harm,” but health communication professionals take for granted that their work is “doing good” without considering that it might cause unintentional harm. For example, stigmatizing sexually transmitted infection (STI) prevention messages may make people with STIs too embarrassed to seek treatment or too ashamed to tell their sexual partners. Not only can health promotion messages lead to such negative health outcomes, they can also promote destructive social values, like fat stigma and rape culture.

Read the rest at the Huffington Post.

Quick hit: Shaming fat kids doesn’t solve anything

Strong 4 Life campaign

According to the Georgia Strong 4 Life childhood obesity campaign website, “Ignoring this problem is what got us here.”

It’s true that childhood obesity is a big problem, but you know what DIDN’T cause the childhood obesity epidemic?

Ignoring the problem.

You know what did?

  • Income disparity
  • Food deserts
  • Fast food advertising
  • The whole fast food industry
  • Corn subsidies
  • Policies like the one declaring that pizza counts as a vegetable in school lunches
  • Lack of safe outdoor play space for inner city kids
  • Video games
  • Lack of funding for physical education
  • Poverty

You know what this ad does?

  • Help families alleviate/prevent childhood obesity
  • Blame this kid for being a fatty fat.

Know what blaming kids for being fat does?

  • Makes them lose weight
  • Encourages a culture of fat stigma and fat shaming that fuels bullying
  • Increases negative psychological, emotional, and health outcomes among overweight and obese children, such as low self-esteem, body image disturbance, eating disorders, and even suicide.

Way to go, Children’s Healthcare of Atlanta.

We’re coming to vaccinate your children: the moral case for compulsory HPV vaccination

Are there moral grounds for compulsory HPV vaccination? Joseph E. Balog, PhD, MSHYG, certainly thinks so. In an article in the April 2009 issue of the American Journal of Public Health, Balog concludes that compulsory HPV vaccination is not only morally justified, it’s a social justice issue.

Some are opposed to compulsory HPV vaccination because they are concerned that vaccinating teens for an STI could be seen as condoning or encouraging sexual activity, undermining abstinence messages and providing a false sense of security about protection from STIs. The scientific community is also skeptical of compulsory vaccination, arguing that the mortality rates of cervical cancer are too low to be considered an “imminent harm” and that the benefits might not outweigh the financial costs, as well as the costs to individual liberty.

Balog argues the “rightness” or “wrongness” of compulsory HPV vaccination should be determined by key ethical principles: whether vaccination would reduce harm to individuals and society, and whether vaccination would produce benefits that are at least as good as the alternatives for prevention of death and disease.

HPV meets the standards for compulsory vaccination
In addressing the concern that mortality rates of cervical cancer are too low to be considered an “imminent harm,” Balog argues that HPV still meets the precedent set by other diseases for which we mandate vaccination, such as polio and measles.  The risk of a fatal outcome from HPV is relatively low, but it is still comprable to that of polio or measles.  The HPV vaccine fits comfortably within the precedent already set for compulsory vaccination.

Eradicating disease trumps the preservation of social ideas
Balog rightly points out that the conservative folks who oppose HPV vaccination because they believe it might promote sexual behavior are more concerned with upholding moral values than they are with preventing real, physical harm. From a public health perspective, prevention of harm is the first priority, especially considering the fact that the types of prevention offered as alternatives to vaccination (abstinence) have been been studied and proven to be ineffective. As Balog argues, it would be wrong to deny teens a real solution in order to uphold a symbolic ideal.

A child’s human rights override parental rights
The law generally respects and protects parental rights over their children. But when it comes to the health and safety of the child, the state may sometimes step in. When it comes to child vaccinations, the state generally upholds the child’s right to healthcare. Since the health threat of HPV affects the child directly and the parent only indirectly, the right of the child to receive the vaccine outweighs parental autonomy. We don’t often think of it this way, but from Balog’s point of view, access to preventative healthcare, like vaccination, is a human right. Of course, any compulsory vaccination program must follow the legal precedent that includes the right of states to allow individuals with medical, religious, and philosophical objections to opt-out. A compulsory HPV vaccine would, of course, include these exceptions.

Compulsory vaccination is a social justice issue
I’m not sure if you’ve seen the ads for Gardasil (the first HPV vaccine on the market), but they are clearly directed to white, middle class women. The reality is, however, that there are huge racial and economic inequalities in rates of cervical cancer and cervical cancer screenings. In the US, incidence of cervical cancer is 50% higher among African American women and 66% higher in Latina women than in white women. While they have the greatest risk, these groups are the least likely to receive cervical cancer screenings (PAP smears) and are also the least likely to get vaccinated. A voluntary vaccination program does not guarantee universal access; the vaccine is prohibitively expensive without health insurance coverage. Public health professionals understand that mandates are not only the most effective way to ensure that the disadvantaged women have access to the vaccine, but also the most effective means of protecting these women from cervical cancer.

Just like children faced the threat of polio in the 1950s, our adolescents are in need of protection against HPV and the array of cancers it can cause. Withholding that protection is unethical, and supporting abstinence as an alternative is both unrealistic and ineffective. But making the HPV vaccine available on a voluntary basis is not enough. It is only with a compulsory vaccination program that all adolescents, regardless of their parent’s values, race, socio-economic background or insurance status, will have real access to the vaccine. Then, and only then, will cervical cancer prevention reach the groups that really need it.

Genital Herpes (part 6): Conclusions

This is the final post in my series on genital herpes.  We we have discussed the fact that genital herpes is the most stigmatized STI – even more so than HIV. We know that herpes jokes are overwhelmingly common and popular, and that anyone offended or hurt by those jokes is silenced by the risk of exposure.  We know that people with genital herpes are thought to be sluts, cheaters, and liars.  We know that people with herpes are described as lepers, monsters, or “dirty.“ We also know from listening to people’s stories that it is a traumatizing and unbearable experience to find out you have herpes, but that after a few years, you go on with your life and it’s not so bad.  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?

If that’s true, then why don’t messages about genital herpes from sexual health professionals fail to 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 is also possible, however, 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. Perhaps the best example of a health resource that acknowledges and addresses the stigma of genital herpes well is 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.

So 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, Muslim Americans, African Americans, Latino Americans, etc). Recognize their struggle and support them when you see discrimination happening.
  • Take a stand against herpes 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.

If you have other ideas, please share them in the comments.

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.

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 4): Herpes 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 is not 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.” On Yahoo Answers, a user writes: “ I feel like a monster.” Another user wrote: “ I’m a monster and I don’ t deserve living.”

Let’s just back up a second. This is a monster:

These are people who could have genital herpes:

There is a difference.

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 here 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 fuck a monster… and become a monster themselves,” Dahl writes.  In a panel where the protagonist is drawn as Dracula hiding from an angry mob under a bridge, he writes: “ 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 of evil, 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. 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 in the discourse surrounding genital herpes 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 bring our friends back to demonstrate.


Which one is the victim, and which one is the dirty, disgusting pig? Hmmm…

The dirty metaphor is also used by rapper Immortal Technique in the song, Industrial Revolution: “My metaphors are dirty like herpes but harder to catch.” This example identifies another interesting use of metaphor in which herpes becomes a metaphor in and of itself. Susan Sontag wrote: “First the subjects of deepest dread (corruption, decay, pollution, anomie, weakness) are identified with the disease. The disease itself becomes a metaphor. Then, in the name of that disease (that is, using it as a metaphor), that horror is imposed on other things.” So, herpes is 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.”

(For the record, I am really upset that the only clip of Joan Rivers was put up by those awful, nasty, people behind the STD Carriers website. JERKS!)

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 (“well, I know I’m not a slut or a monster or any of those bad things because I don’t have herpes!”) 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?

In case you missed them, check out:

Genital Herpes (part 3): More than 51 million Americans are cheaters and whores, apparently

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. This stigma is so, unmistakably pervasive throughout American culture that I hardly need to give examples, but I will.

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 the 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 The 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 the 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.  If the US population is 310,519,000 (all stats taken from Wikipedia), then that means there are over 51 million Americans with genital herpes right now.  That’s more people than there are Latino Americans (46.9 million) or African Americans (37.6 million).   What’s the likelihood that 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 (I couldn’t get the embed code to work, sorry!) of a Valtrex commercial plays with this stigma. In the sketch a husband (Alec Baldwin) and wife (Amy Poehler) are sitting together on a couch and it is obvious that the husband has been unfaithful. When the wife says that 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 inthe midst of their divorce. In an attempt to overturn a prenuptial agreement, DavidHasselhoff’ 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 diseasesor 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, relatively mild condition with hardly any health complications that can be managed quite well with medication.

And speaking of running away screaming, my next post will discuss the different metaphors we use to talk about herpes and the people who have it.  *Read Part 4 here.* If you need to catch up, check out part 1 and part 2 of the series.