TO TELL OR NOT TO TELL

08.29.14 9:45 AM ET

The Silent Shame of HPV

HPV is the most common STD in America, but we still aren’t talking about it. Part of it is the shame associated with the virus, and part of it is the lack of education.

When New York City council speaker Melissa Mark-Viverito discovered she had high risk human papilloma virus (HPV), she quickly took what is, for many women, the hardest step of the diagnosis: disclosing it. And not just to her sexual partner, but to everyone. “To say I’m not wee bit worried = lie,” she tweeted, with the clarification “'High risk HPV’ can POTENTIALLY but NOT [sic] definitely lead to cervical cancer.”

Mark-Viverito was met with praise for sharing she had HPV. But millions of women face the challenges of discussing HPV with their partners in less public arenas—ones that often leave them more vulnerable to rejection and pain. Like Mark-Viverito, they face the difficult task of explaining how a strain of HPV could potentially lead to cancer, or that it could lead to nothing. These conversations occur with partners and loved ones as they grapple to understand a virus so deeply surrounded in controversy that it often obscures what little medical clarity exists.

Erica was 22 when her doctor called her and said she had an abnormal pap smear. “The doctor was very curt,” she recalls. “I just remember hearing cervical cancer and that there was some procedure I could have later on down the road and that it could make it difficult to get pregnant. I just remember being super terrified.” Erica was especially concerned because she had received the available HPV vaccine. “I was completely aghast,” she says. “What [my doctor] was telling me was a lot scarier than I thought.”

Jane* describes the experience of being told she had tested positive for HPV “a frustrating ordeal in its own right” because her gynecologist was vague and nonchalant about how to proceed, both in terms of her health and her dealings with sexual partners. She was 30 at the time and just beginning a new relationship, and it was before they had been sexually intimate. “I kept asking more questions,” she remembers. “I kept asking my gyno if this was something I should share with my partner, and she said ‘That’s up to you.’ There wasn’t much she said about what she thought I should know. She just said come back in a year.”

HPV is by far the most common sexually transmitted infection. According to the CDC, 79 million Americans currently have it. Considering the 2013 U.S. Census Data lists the national adult population as 242,542,967 (PDF), about 32.5 percent of Americans 18 and over have some strain of HPV. Most sexually active American men and women will have it at some point of their lives, though they may never know it. Of the over 100 strains, the majority are harmless and a healthy immune system will fight it without a person ever realizing it.

But despite how common it is, HPV is still deeply misunderstood and, as a result, stigmatized. Most Americans know of the virus from either the controversy surrounding the vaccine—especially when the ever-helpful Michele Bachmann piped up—or Michael Douglas’ claim that it was responsible for his throat cancer. While these incidences increased the general public’s awareness of HPV, they didn’t bring calm or understanding.

When HPV vaccines became available in the U.S., the news devolved into a puritanical debate whether girls as young as 11 should be inoculated against an STI because, heavens to Betsy, they have sexual contact one day. Bachmann only fanned the flames when she falsely claimed during the 2012 Republican presidential primary that HPV vaccines led to “mental retardation”. Lost in the controversy were some very important considerations, such as the high cost of the vaccine ($130 for each of the three doses in 2013) and the fact that the vaccines protect against the HPV strains that cause 70 percent, not all, cervical cancers. In fact, during the course of the reporting for this article, I encountered multiple women who had been vaccinated before becoming sexual active and still screened positive for HPV.

Boys are now starting to get inoculated, which is certainly a positive result of Michael Douglas disclosing how HPV negatively affected his health. But while it got more Americans to realize boys should get inoculated against the virus, it also stoked a tremendous amount of fear that an HPV diagnosis was tantamount to cancer.

Jane said she told one of her partners about her HPV status just as Douglas’ story was making national news. “The timing was weird. The big unknown was: does oral [sex] put you at risk for throat cancer?” Jane said she told her partner the status. He said he knew he didn’t have it because he “was tested,” never realizing that there isn’t a regularly available way to diagnose men with HPV strains. “I was like, ‘No, that’s impossible,’” she says now with a laugh at his insistence.

Many women have to face the challenge of explaining HPV to their partners when they themselves know little about what their diagnosis means. But some don’t even get that far along in the conversation.

Robyn was in her senior year of college in January 2008 when she found out she had an abnormal pap smear. Further testing revealed it was due to HPV strains. She, too, had received the Gardasil vaccine, and says she always practiced safe sex with condoms. She tried to tell the guy she was seeing at the time. “I thought I was being responsible. He said, ‘But we used condoms,’ and literally hung up on me,” she says.

Erica’s first experience telling a partner wasn’t much better, even though he purported to be, in her words, a “hipster feminist.” She had the conversation before they had sex, and he accused her of being irresponsible in her sexual past. When she tried to explain to him that he himself could be a carrier, he “willfully ignored what [she] said.” It was during this first conversation that Erica realized how much stigma her HPV status had. “I think he thought I was ‘dirtied’,’ and he didn’t think I was a voice of authority. I think he thought I was trying to defend myself with false facts,” she says.

In the hierarchy of medical issues that carry stigma and fear, HPV has a unique place. While not considered remotely as “scary” as Ebola, MERS, or HIV, it is still a sexually transmitted infection. As a result, it is generally more embarrassing to discuss with a partner, and automatically carries a connotation of promiscuity and irresponsibility. While both men and women face this stigma, Dr. Adina Nack, a Senior Research Fellow for the Council on Contemporary Families and author of Damaged Goods? Women Living with Incurable STDs, argues that women are more often shunned when it comes to an STI.

“The root of STD stigma is the gender-based double standard of sexual morality: male social status typically increases as their number of sexual partners increases, whereas female social status typically decreases. As a society, we still place a high value on female virginity/chastity and on male sexual conquests,” she explains in an email to The Daily Beast. “My research found that infected women most often used the word ‘dirty’ to describe how they felt after receiving an STD diagnosis. Women have more concerns about this than men because of our society’s exist double standards.”

Not only do they often face disproportionate stigma, but also disproportionate responsibility. “I feel women in general with sexual health are the canaries in the coal mine when it comes to heterosexual relationships,” says Jane. Women have (or are supposed to have, at least) an annual doctor’s visit to specifically monitor their sexual health, so they are often the first to know in a heterosexual relationship when there is an STI risk.

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It’s a double-edge sword for both men and women. While women are often better informed about their health, that means they bear the burden of broaching the topic of HPV. While men suffer from the risk of not realizing they have been exposed to or already have a strain of HPV, it is also easy for them to play the accuser—as shown from the anecdotes above—or live in “ignorant bliss.”

I hesitate to use “ignorant bliss” to describe the state of not knowing if you have an STI, but the thorny truth of being diagnosed with HPV is that it could mean you’re at risk for developing cervical, vaginal, penile, throat, or neck cancer. Or, it could mean your immune system will clear it out, and you’ll test negative for it in a year with absolutely no detrimental health effects.

In fact, Dr. Mary Rosser of the American Congress of Obstetrics and Gynecology says that the standard protocol for women under 30 is to do nothing when HPV shows up in a pap smear. “Without any treatment, those positive tests will most likely become negative without a year of treatment,” she says. When talking about HPV, Rosser stresses the importance of vaccination before becoming sexually active, but also keeping a cool head and recognizing that with 100 some odd strains of HPV and at least 30 that infect the genital area, most sexually active people will carry HPV at some point—and it will have absolutely no effect on their health.

But she also recognizes that it places women who are told that they screened for HPV in a frustrating limbo. “Women are like ‘Wait a minute, I have an STD, and there’s nothing I can do about it?’ I’m in a loving relationship and I have to wait a year [for the next pap smear]?,” she says. When women themselves don’t know how serious, if at all, carrying a strain of HPV is, it is difficult for them to figure out how to explain it to partners. “I think that’s what causes people to be nervous and anxious,” says Rosser. People do not realize HPV is “common and transient,” which adds to the stigma and, in turn, deters people from talking about it and recognizing the need to be vaccinated.

But still, HPV carries a lot of unknown health consequences, which makes it scarier. I asked Rosser if she would advise a male loved one to refrain from sex if his partner disclosed she had HPV. “I wouldn’t. Not at this point,” she says. Her first response would, in fact, be to tell him “If you’re already sexually active, you might already have it.” She would advise him to get the vaccine if he hadn’t, but felt it was okay to proceed with safe sex. “We want to make sure they’re keeping their numbers of partners low and using as much common protection as you can.”

HPV is so transient because no form of safe sex is fool proof. That means even sex with proper condom use isn’t totally effective, which is baffling to most people (or, at least to this reporter). Rosser explains that so many sexually active adults will have HPV at some point because it is highly contagious and spreads skin-to-skin. You may not always be cognizant of it, but “when you put a condom on, there is still skin touching,” explains Rosser. In fact, the oft maligned, but making a comeback female condoms are more effective “because they cover more area.”

With HPV so easily spread, it makes the need to talk about it all the more important. It’s not just a pure issue of health and protecting a partner, but collectively de-stigmatizing a virus that many people reading this article have and don’t know. “My gut is always to disclose,” says Jane, who was ultimately one of the millions of women who tested negative for HPV at her following pap smear. “I remember when I was getting mixed messages, a friend said ‘I always take the opportunity to disclose because it’s an opportunity to raise awareness.’ That rang true to me.”

Of course, as many of these women’s stories show, it’s not just a matter of talking about HPV, but listening.

Robyn still thinks of the ex-boyfriend who hung up on her when she disclosed her status. Six years later, she has had to monitor her health with regular pap smears and biopsies. She had to remove part of her cervix because her strain of HPV proved to be one of the more serious ones. “I think of him, knowing that it’s [her HPV strain] not one of the harmless ones and about the partners he has had since me,” she says. “I worry about them. It really scares me.”

*Name has been changed.