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This Woman Wants To Inspire Other People With Herpes To 'Live Out Loud

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The underground tunnel that separates the 1/2/3 trains from the L/F/M at 14th street was crowded with commuters. Still, Devin Elise Wilson, surrounded by friends and family members, openly spoke about being diagnosed with herpes to any passerby who could hear. Accompanied by a keyboard player, Wilson and her friends sang Broadway show tunes to celebrate not only her two-year “herpaversary,” (anniversary of her diagnosis), but also her birthday.

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Wilson was diagnosed with genital HSV-1 in August of 2015. She was at a time in her life where she felt confident and sexy and wanted to explore those feelings. She was volunteering at MoMa PS1 when a cute guy gave her his number. She was texting him all day and then, very out of character for her, she went to his place that evening. It was that night that she contracted herpes. The guy didn’t know he had it, and she believed him. Still, Wilson couldn’t help blaming herself for contracting this virus.

Wilson stayed with this guy for five or six months, though she knew they wouldn’t end up together long-term. She described this brief relationship as a “safe haven.” At the time, she didn’t know anyone else with herpes and was worried no one else would understand. She lived with feelings of loneliness and isolation, not even talking to her roommates about her diagnosis.

When things ended with her “gifter” (the guy who gave her herpes), she was scared to date. She was struggling with self-acceptance and didn’t want to have the disclosure conversation with another man. If she couldn’t accept things herself, she figured, why would random men she went on dates with accept this about her?

In the first year and a half of her diagnosis, Wilson told a total of three friends. Her family members didn’t know until recently. She struggled with how she would be perceived — would her intelligence and judgment be questioned?

After her diagnosis, Wilson’s anxiety was through the roof. As she couldn’t control her HSV+ status, she tried to control everything else around her.

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Fast forward to now. Wilson is engaged, and her fiance was perfectly fine with her HSV+ status. She used to constantly think about her diagnosis, and now it’s rarely something that’s on her mind.

When Wilson finally told her family about her status, she was pleasantly surprised by how supportive they were. She initially thought they would disown her, or at the very least be upset with her for keeping this secret from them. Neither was the case.

Wilson first publically spoke about herpes quite recently, just earlier this year. She was attending a self-development workshop and finally got the courage to go to the front of the room and ask advice about the “medical issue” she was dealing with. When the woman running the workshop said she had to be more specific, she swallowed her fear and said she had herpes for the first time in front of over 100 people.

She was surprised by the response she got — two people came up to her after the workshop and told her they, too, had herpes. Even non-HSV+ people thanked her for sharing her story. It was then Wilson realized that maybe this is her life’s path. She created a MeetUp group for HSV+ people to join, share their experiences, and meet other HSV+ people in person.

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“This is what I’m meant to be doing — living my life out loud so that others are inspired to do the same,” Wilson tells me.

When it comes to other means of support, such as secret groups on Facebook for HSV+ people or dating apps just for people with STIs, Wilson doesn’t really see the need for them. “I don’t think we need to be in a hidden Facebook group,” she states. “I don’t think we need to be in a pool of just us. We don’t need to be segregated.”

In terms of advice, Wilson would give someone newly diagnosed, she says, “Try to be as kind and understanding to yourself as possible.” She also doesn’t think one should be afraid to seek advice or support, as it can be a very mentally exhausting thing to struggle through alone.

And indeed, support exists. People with herpes don’t have to suffer silently and live in fear. As Wilson does, we should all live out loud.

Follow Devin Wilson on Instagram.

Photos courtesy Devin Wilson

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Rafaella is a graduate of The New School, where she majored in journalism and minored in gender studies. She's passionate about feminism, LGBTQ+ rights, combatting online harassment, and ending herpes stigma. Visit her website: ellagunz.com

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