As Told To: The stigma of STIs is no match for Jenelle Marie Pierce

'We tend to project our own values and beliefs onto others and thus, the cycle of fear and shame continues,' says the founder of The STI project.

As told to Sadaf Ahsan 5 minute read February 8, 2022
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"I remind others that an STI doesn’t hinder your love life or ambition by example, and by showcasing the things I'm thankful for in my life," says Jenelle Marie Pierce. SUPPLIED

Jenelle Marie Pierce is the Asheville, NC-based founder and executive director behind The STI Project, an online resource and movement dedicated to dismantling stigma by reclaiming STI narratives through awareness, education and acceptance. The STI Project advocates informed decision-making by sharing the stories of those who have sexually transmitted infections or diseases. She is also the spokesperson for Positive Singles, the world’s largest herpes and STD dating and support community. Although she lives with genital herpes and has had HPV, she wants to remind the world that she was still able to do it all, including getting married, auditioning for American Idol, skydiving (three times), running a 25k, starting multiple successful businesses, completing two degrees, and so much more. This is her story.

I had low-risk strains of HPV when I was a child ­— warts on my fingers and toes — and I hated them because I thought they looked gross, and they were a little uncomfortable. But they weren’t particularly embarrassing, because I knew they were common in children. [My parents and I] tried to have them removed with creams and through some procedures in the pediatrician’s office, but they just returned until, eventually, my immune system learned to suppress the virus.

By the time I was in my 20s, I had a few abnormal pap smears and, at the time, I was assured that it was completely normal to have an abnormal pap smear, but I wasn’t told that it was because I had HPV. I didn’t learn that the vast majority of all abnormal pap smears are caused by HPV until I began working as a sexuality educator. I even had a colposcopy performed to examine the abnormal cells, and not once did anyone mention HPV. I wish they had because I would have had a much better understanding of how common it is to contract an STI, and I think providing that information would help reduce STI stigma overall.

I finally learned that I had had HPV when I became a sexuality educator in 2012. At that point, I already had a healthy distrust of healthcare workers, because I had experienced some trauma when I was diagnosed with HPV some years before, so this just further emphasized the need for consumers to be their own advocates. While I understand why some of this information is often left out of the discussion when performing a pap smear, the rationale is flawed and does more harm than good. Knowledge empowers people to make the decisions that are best for their bodies and their partners’ bodies, and providers should instead err on the side of ‘there’s no such thing as too much information.’ What you don’t know can hurt you, and it can hurt others, too.

‘We don’t offer inclusive sexuality education’

STIs are highly stigmatized by the public, and even a fair share of health care providers, because sex is stigmatized and anything that is related to sex holds shame. Although our culture uses sex to market everything from TV shows to toothpaste, collectively, we don’t offer comprehensive, inclusive, medically-accurate sexuality education, and we don’t communicate from a place of empathy and compassion. Rather, we tend to project our own values and beliefs onto others and thus, the cycle of fear, shame and stigma continues.

HPV wasn’t much different for me later in life than when I was younger, because I wasn’t really aware of the association with anything shameful until after I had cleared it, which is sometimes a justification for keeping people in the dark. However, if everyone were educated about HPV, it and other STIs, it might not have the same stigma it does now, so there wouldn’t be a problem to shield people from it in the first place.

So I created The STI Project because I saw a need for a resource that challenged the narrative and provided a comprehensive look at what it’s like to live with an STI. Essentially, it’s the resource I needed but didn’t exist when I was diagnosed years ago. My motivation to do this work and to fight the stigma is my inbox. I’m flooded with emails and direct messages every single day from people who have watched all of my videos, taken my courses, or who follow me on social media, and they are all similar — people who have felt isolated, misunderstood, shamed and stigmatized without anyone saying, “Hey, you’re ok. This doesn’t define you, and you are still worthy of healthy, rewarding, and pleasurable relationships!” Knowing that I’m able to help someone feel better about themselves, to provide them some much needed hope for the future, and an alternative and uplifting perspective makes all of the hard work worth it.

I remind others that an STI doesn’t hinder your love life or ambition by example, and by showcasing the things I’m thankful for in my life. Although my experience is not the experience of all people, and I can’t possibly be a voice for or represent all folks who have an STI, showing people aspects of my life that I never thought were possible when I was first diagnosed can help others question the negative beliefs they’ve adopted about themselves, and it helps challenge the cognitive distortions that get perpetuated by STI stigma.

Sadaf Ahsan is a Toronto-based culture writer, editor and stereotypical middle child. She can be reached here.
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