A patient’s perspective on STDs.

In 2012, Jenelle Marie Pierce founded The STD Project, a multi-award-winning website and progressive movement encouraging STD awareness, education, and acceptance. In honor of World AIDS Day this month, we’re excited to feature Jenelle and her inspiring story in today’s blog post. We asked her a few questions to learn more about her experience dealing with a sexually transmitted infection. Here’s what she had to say.

When did you first realize you had genital herpes? What was that experience like?

I contracted genital herpes when I was 16 years old. I didn’t know it was herpes right away, but I was in the middle of my first outbreak, and I was extremely uncomfortable, so I knew something was going on down there. Many folks never have an outbreak, but for those who do, the first one is typically the worst, and my experience was no different. I finally asked my mom to look, and she scheduled an appointment for me that day. We went in to my family doctor, and he took one look at my genitals and walked out of the room. He came back in with a prescription for Valtrex. He told me I had herpes, and it was the worst case he had ever seen before. He provided no resources, information, or statistics. Nothing. I cried the entire way home from his office, convinced no one would ever want to be with me again. It was a horrible experience, and looking back, I now know how unprofessionally I was treated. But at the time, I thought I deserved it. For a long time after that – read: years – I was convinced I was damaged goods, dirty, and trash. None of that was true, of course, but it took me a long time to move past the initial shock and shame.

What’s a common misconception of genital herpes?

A common misconception is that you’ll know if you have herpes or if someone else has herpes. In reality, most people don’t know they have it because they never have symptoms. People assume they’ll be able to tell by the way a person looks – clothed and unclothed – or by the number of partners they’ve had, and there’s just no way to know for sure. People from all different walks of life, with varying numbers of partners, and with a myriad of different sexual experiences have herpes. There is no defining characteristic that indicates someone has an infection. Millions and millions of people have genital herpes, and billions have oral herpes. You can contract herpes from your first partner or from oral sex – both of those things happen all the time. And because most people never have outbreaks, there’s no way to know for sure without a blood test, and blood tests are not currently recommended by the Centers for Disease Control and Prevention.

How has your life changed since you were diagnosed?

Since my diagnosis, I think I’ve grown as an individual. It sounds cliché, but I’m a much more open-minded and empathetic person because I’ve learned that everyone has shame, everyone harbors secrets or skeletons in their closets, and everyone just wants to be understood. At the core of every person on the planet is the desire for human connection – knowing that someone understands, respects, and/or empathizes with how you feel, and having herpes has helped me to be better at connecting with people. While we are all unique, we are more alike than we are different, and it’s those similarities that help bond us and ensure we survive. If you think back to the beginning of humanity, when we were hunter-gatherers in small tribes, those who survived were those who banded together and worked in harmony. While society is very different now and we can more easily isolate ourselves, it’s when we work together for a common cause that we thrive. The same holds true for herpes activism and STI activism. Those of us who are living with an STI are not recognized or supported as individuals because we are isolated and easy to ignore. But when we come together to do our advocacy work and promote awareness, we are much harder to stigmatize, and the communities we form help each of us individually.

Has having an STI hindered your relationships?

Most people assume that an STI is going to be the end of dating or a healthy sex life. However, in my experience, that’s rarely the case. Personally, herpes has never impacted my relationships – none of my partners have cared at all. But it took me a while to realize that my assumptions about dating with an STI were inaccurate, and for a long time, I was petrified of disclosing to new partners.

Why did you start The STD Project?

I launched The STD Project because there were very few resources available that spoke to the gray areas around living with an STI. There were a lot of factual resources available, but those sites felt clinical and sterile, and they didn’t help me approach the ambiguity around dating and sex with an STI, or how to deal with jokes and stigma, and all the other things that come up when you are living with a long-term incurable infection. The factual resources are good and necessary, but I wanted to create a safe space for people to share their stories, and I felt that I could help people by being open about my experiences. I wanted to link people to other comprehensive and inclusive resources that would further empower them to make the decisions that were best for them.

What patient perspective can you share with doctors and clinical researchers?

Language choice is number one when trying to advocate for prevention, safer sex, and testing. People immediately shut their ears and stop engaging when you tell them what they should and shouldn’t be doing with their bodies and their partners. You must take the word “should” out of the conversation entirely. Instead, provide your audience with practical information that includes relevant risk and ways they can reduce risk. No one is going to listen to you if you approach them from an authoritative, clinical perspective, no matter how accurate or useful your information – it just won’t feel applicable. Instead, meet your audience where they are, and help them make the decisions that are going to be best for them without any judgment leading the conversation and seeping out through small nuances in your word choice.

Jenelle Marie Pierce is The STD Project’s executive director, founder of the herpes activists’ network HANDS, spokesperson for Positive Singles, and a tri-chair of the Communications Action Group at the National Coalition for Sexual Health (NCSH). Learn more about The STD Project on their website, or find Jenelle on Facebook, Instagram, and Twitter.

Any questions? Want to know more?

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