“If I tell you something please don’t be mad at me,” Jean tearfully pleaded over the phone to her older sister. Just hours before, Jean, a junior from Kansas City, Missouri, found out she was HPV positive. Even though deep down she knew her sister would react compassionately, she was still worried.
“Everyone is super sympathetic, and I know I will be ok, but it’s just hard because of the stigma around STDs and STIs,” Jean says.
By the time that Jean went for her first pap smear in October 2020, she had been sexually active for two years. Three months after that visit, a nurse from the office called to tell her that she tested positive for the human papillomavirus (HPV). HPV is a viral infection mainly affecting women that is spread through sex or intimate skin-to-skin contact, sometimes causing genital warts or cervical cancer. Most women are tested routinely through pap smears after they turn 21, and if positive, their test is flagged as abnormal.
After she received her diagnosis, Jean immediately broke down. Fear of judgement consumed her, and she worried about other people finding out. She says in the days after, she hardly recognized herself and couldn’t understand how she had let herself contract it. She felt dirty and less worthy of love. She worried about having to tell her future partners.
However, the thoughts that once altered her self-worth diminished and she learned to look past her diagnosis, just as her sister, mom and friends did from the get-go.
In a 2007 study, some women associated their initial lack of knowledge regarding HPV’s prevalence and its link to sexual activity with stigma and shame. However, women who understood how common HPV is reported feeling fewer negative feelings towards an HPV diagnosis.
Similarly, Aysia Padilla, a junior from Topeka, says that before she learned about HPV’s prevalence, she was unsure how she felt about the infection. After taking introduction to women, gender and sexuality studies, her feelings towards the infection changed in a positive way.
“I didn’t know a lot about HPV. I thought it was something that stayed with you forever. It wasn’t until I came to KU and took an intro course to women, gender and sexuality studies and we learned about STIs that I understood just how normal an HPV diagnosis is, and I was no longer as afraid of it like I was before,” Padilla says.
According to the CDC, each year in the United States there are an estimated 14 million new HPV infections, and roughly 80 million Americans are living with HPV – making it the most prevalent STI in the U.S. However, for the majority of individuals, it resolves on its own over time and oftentimes presents no symptoms or requires treatment, especially in men.
Yet, regardless of its high prevalence and positive recovery trends, it's still stigmatized. In a 2019 study conducted by Censuswide, a London-based international research firm, 39% of women said, if diagnosed with HPV, they would not want others to know they had it. Additionally, 37% believed that an HPV diagnosis would affect their confidence and 35% reported that it would affect their mental health. These results partially stem from the negative language surrounding HPV and other STIs, especially when paired with women.
Emerson Karsh-Lombardo, a senior from Denver, Colorado studying human sexuality, was diagnosed with HPV her junior year. Like 90% of first-time HPV diagnoses, her HPV cleared up on its own (10% of cases and recurrent HPV may require treatment). She says that these things happen and that it’s no one’s fault, but that women with an HPV diagnosis feel stigmatized due to the language surrounding HPV and other STIs. She says if she went to a doctor and got an STI screening panel and the doctor told her she was “clean,” that would imply to her that if she had an STI, she would be “dirty.”
“There’s a lot of language that goes into it that further stigmatizes and puts blame on the people engaging in the [sexual] act, when people should be able to engage in their sexual activity, obviously with safe precautions, but without having the fear that they’re going to be judged or deemed impure or immoral,” Karsh-Lombardo says.
Watkins Health Center has also worked towards de-stigmatizing STIs through changing the language. The term “sexually transmitted disease” (STD) has been used since the late 20th century and is still used by organizations such as Planned Parenthood and the CDC. However, Watkins stopped using the term and replaced it with “sexually transmitted infection” (STI). Jenny McKee, Watkins’s Health Education Resource Office’s (HERO) program manager, believes that the term infection is more appropriate than disease.
“The word ‘infection’ more accurately describes what we’re talking about. When you hear the word ‘disease,’ you hear someone is going to die. The truth of the matter is, is that all STIs are treatable, and most of them are curable or they go away on their own, which is 100% true with HPV,” McKee says.
In addition to negative connotations paired with the term STD, McKee says that there is also a systematic lack of education regarding HPV and other STIs. Failing to comprehend how someone can still live an enjoyable life while having an STI can lead to people further stigmatizing HPV. In the study conducted by Censuswide, it was found that 43% of women said an HPV diagnosis would negatively impact their sex life. McKee disagrees.
“People have long, healthy, sexually romantic lives with herpes, with HIV, with HPV. It’s not a death sentence as much as society makes you feel like it is,” McKee says.
McKee encourages people to find the source of their sex-negativity and pinpoint where that message came from. This can allow us to better understand and reverse why we feel dirty or shameful about having HPV or another STI, when we don’t feel the same way about other illnesses.
“We don’t talk about people when they get the cold or the flu, like they’re unhygienic or they’ve really been around without a mask on. We don’t shame people about getting sick in any other way,” McKee says.
In addition to changing the language and increasing education regarding HPV and other STIs, another key factor to de-stigmatizing HPV is to lessen the reactions given on both the physician’s and patient’s sides.
Samantha Durland, a board-certified obstetrician and gynecologist in Lawrence, Kansas, believes that physicians and HPV-positive patients shouldn’t overreact to an HPV diagnosis or attach shame to it.
“We are animals,” Durland says. “At the end of the day, we are human beings, and we are animals. We all have this stuff, so it doesn’t make us sexually promiscuous, it doesn’t make us bad people, it just makes us human.”
The CDC has established an STD Awareness Week from April 11-17. It will be dedicated to reducing STI-related stigma, discrimination, and fear – further raising conversations and providing tools necessary to overcoming the United States’ view of STIs.