Addressing the sleep deficit, NOT one person at a time

The more I learn about health and wellness, the more convinced I am that sleep is magic.

Not only does getting the recommended 7-9 hours help you feel awake and refreshed in the morning, it also helps regulate your metabolism and improves your memory, focus, judgment, problem solving, and athletic performance.

New and terrifying research links not-enough-sleep (the 5-6 hours most Americans currently get) with weight gain, increased risk of cold/flu, diabetes, cancer, and ADHD-like symptoms. Additionally, not getting enough sleep results in poorer cognitive abilities (lack of focus, concentration, ability to remember what you’ve learned), poor judgment, and impaired driving on par with drunk driving. It’s also correlated with depression, anxiety, and other mental illness.

When I saw this New York Times post basically summing it all up (and providing links if you want to check out the research) I was ecstatic and all “That’s what I’ve been saying!” Then I read the comments.

“You assume it’s a choice, that people actively choose to get less sleep and, if they want to, can choose to get more. That may well be true of upper class people who can hire others to do their work for them – housework, tutoring, etc. As for me, a middle class shlub, well, I would LOVE to get more sleep. But I am a single mom. I have to get up at 5:30 am for my job. And I have to work or I will land in the street with my kids. ANd I have to stay up at least until 10:30 pm most nights to get this or that child hither and thither, help with homework, and son on. I cannot hire anyone to do any chore– lawnmowing, housecare, homework, driving, shopping, bill paying, college planning for kids, etc etc etc etc. Basically, I work from the moment I get up until the moment I sleep. I have no time to exercise either.”

And it hit me. The sleep deficit is a lot like the obesity epidemic; it is a systemic problem that cannot be solved by encouraging individuals to make healthier choices.

I work with college students who probably could get more sleep if they spent a couple fewer hours playing videogames.

Shit college students say.

Of course, some of my students work more than the recommended 10 hours per week and can’t choose to sleep more. But in general, I feel okay about trying to encourage them to prioritize sleep over partying or more time on Reddit because they can usually make changes without too much trouble. For the general adult population, however, this really isn’t the case.

The comments on the New York Times post read like a laundry list of reasons why Americans are not sleeping. Parents are kept up by new babies. Physicians-in-training are working 28-hour shifts. People who travel constantly for work (flight crews, journalists, musicians, etc.) are forced to keep irregular schedules in different time zones. Single parents are working full time jobs in addition to the “second shift” just to make ends meet.

But it isn’t just our jobs, families, and full schedules that are keeping us up. The world has changed. Energy drinks and caffeinated latte drinks are sold on every corner and and marketed either as health supplements or entertainment. We are constantly connected, if not tethered to, our phones, tablets, and the internet — whether it’s for work, entertainment, or connection. A recent study found that the light from backlit screens can disrupt sleep by suppressing melatonin, a hormone that helps regulate our circadian systems. But this is even bigger than a gadget issue.

Our circadian rhythm, which is how our body knows when to sleep and when to wake, is informed by both light and temperature. Darkness and cooler temperatures let our bodies know it’s nighttime, and therefore bedtime. So what happens to our circadian rhythm when we live in consistently temperature-controlled environments? And about that darkness thing? Yeah. We don’t really have that anymore. Just check out these NASA images of the world at night.

Captured in 1994

Light pollution projected growth in 2025

So basically our artificial environment is really screwing with our circadian systems, and we wonder why no one can sleep? Some scientists are even concerned that light pollution is killing off wildlife.

Animals need sleep too.

It’s no wonder that the New York Times post, which encouraged readers to get more sleep and discuss the issue with their doctors, made some people angry. For so many of us, sleep is simply outside our realm of control. Before I’ve made the argument that our obesity problem should not be addressed through individual behavior change because it is a systemic problem that can really only be solved through systemic changes to our environments and our policies. When we try to treat obesity as if it were simply an individual problem, it manifests as shaming people for things beyond their control. When we consider that sleep and weight are inextricably linked, it’s not surprising that the same thing happens when we tell people they need more sleep.

And, just like weight shaming can cause people to develop eating disorders or depression/self-esteem issues that lead to further weight gain, warning people about the health risks of sleep deficit can actually make the problem worse:

“As a law school graduate studying for the New York Bar and planning an impending move to NYC–without yet a job, praying to find one in public interest law–I lie awake every night, worrying. But at least now I know all of the harmful things that are happening to me.”

“Constantly counting the number of hours of sleep I got each night hasn’t been good for my mental health either. It’s like counting calories. It made me obsessed. So I stopped.”

“One thing that would help me sleep is not being constantly told how awful it is not to get it.”

The Health Belief Model of behavior change tells us that if you scare people about a health issue without providing a clear solution for how they can prevent or treat it, they are not going to respond well. Telling folks the dangers of not getting enough sleep without providing realistic solutions will cause them to feel like it’s hopeless and shut down. This issue cannot be solved by telling people to try to get more sleep.

So how can we address the sleep deficit at the systematic level? In college health we have an advantage because we have a fair amount of control over the environment our students inhabit. We have the ability to provide a campus that encourages and supports healthy behavior. We can close down our libraries, gyms, labs, and campus centers at 10 pm. We can ban 8 am classes to let our students sleep in later. We can mandate quiet hours in our residence halls. We can ban Red Bull and 5 Hour Energy from promoting their goods on campus. It’s a little more complicated in the real world.

What could some of those systemic changes look like? Is it even possible to regulate light pollution in urban areas? How would we accomplish that? We could tax the crap out of energy drinks like we tax cigarettes. We could create similar disincentives for 24-hour service availability. For example, in Spain, most businesses are closed during siesta in the afternoon. People simply have to run errands another time, and they make it work. We could also place stricter regulations around the “full time” (read: eligible for benefits) work week, reducing it from the standard 4o-45 hours to something closer to 35. (Again, a lot of Europeans do it this way.)

But beyond regulation, true systemic change requires a culture shift. We need to foster a culture that doesn’t reward employees for putting in extra hours, or make anyone feel like they need to put in extra hours to keep their job. In industries where it’s possible, like in most office jobs, we need to institutionalize flex time and let workers telecommute in order to snooze that extra hour it would take to commute. We need to change the norm from one where we lie in bed with our phones checking email to one where that kind of behavior is uncommon. We could stop creating reasons for people to stay up late, like scheduling evening events earlier and no longer airing popular TV shows after 10 pm.

But this kind of societal change takes decades and requires tireless efforts from public health folks and other advocates. Perhaps the first step of that work is recognizing that the sleep deficit is bigger than you and your insomnia, her and her new baby, or him and his ridiculous work schedule. For those who can make the choice to sleep more, doing so will definitely improve their health. But the focus of public health messaging and health journalism should not be to scare or shame people who, for whatever reason, can’t get enough sleep.

TL;DR sleep zombie friends?

What I’m really trying to say is that the only way to really address the issue is to treat society’s sleep deficit as the gigantic, systemic, clusterfuck of a problem that it truly is.

Goodnight.

My new identity as a college health educator

Oct23

I returned from South America in late August, unemployed and not at all sure where I’d end up or how long it would take. I could not have imagined that in only three weeks, I’d have landed my dream job. I finally get to combine my personal interest in health with my training in health communication and my love of education as a bonafide health and wellness educator at a college in Boston, MA.

In my new role, I teach classes and workshops, coach students in individual sessions, design and run education campaigns and behavior change interventions, plan events and programming, collect and analyze student data, and advise a student group of peer health educators. My new world revolves around alcohol and drugs, sexual health, stress management, sleep, nutrition, fitness, eating disorders, mental health, and wellness.

I absolutely love, love, love my new job. And what’s more, it’s prompting me to think about a lot of new things and considerations. For example.

My role as role model

So, like, can I never mention drinking in a tweet ever again?
Must I now avoid bars where there might be undergrads?
If I choose to get drunk, does that make me a hypocrite?
Will people be watching my personal health/eating habits more closely?
Does it reflect poorly on my authority/credibility as a health educator/expert if I am overweight?

Serving a population that is 85% male and 15% female

How do I make sure to dedicate enough resources to women’s health topics when women are such a minority?
Opportunities for sexual assault prevention aimed at a male audience (bystander education)
Making sure that sex ed/sexual assault/body image/eating disorder programming reflects feminist perspective
What men’s health issues do I need to learn more about?

Education vs. social marketing

Social marketing has traditionally not been used at this college; in what cases is it worth pushing for change?
How much time/effort/money do I dedicate to educational initiatives when I believe behavior change interventions would be more effective?
How much time/effort/money do I dedicate to the complicated process of designing behavior change interventions?
When is it worth designing original materials vs. using materials already available?

Health vs. Wellness

What’s the difference?

Pretty great stuff, right?

I look forward to exploring the intricate details and delicate dilemmas involved in college health education with you at Talkin’ Reckless. In addition to my usual gender- and health-related ranting.

“All Adventurous Women Do”

May21

On 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

Apr30

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

Feb20

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

Jan23

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

Jan3

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

Nov24

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

Oct22

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

Oct22

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

Talkin' Reckless

Thoughtful blogging with a renegade twist

Category Archives: Health Communication