THE SOCIAL STIGMA IS FAR WORSE THAN THE DIAGNOSIS.
When I was 23, while examining my newly waxed bikini line, I noticed what looked like a small ingrown hair on the left side of my outer labia. It didn’t hurt, but I could feel it throbbing. I grabbed a handheld mirror to further inspect it. I panicked when I saw what looked like a tiny blister, and I immediately ran to my best friend’s room, also my roommate at the time, to ask her if she could analyze it.
“Dude, do you think it’s herpes?!” I anxiously stood in her doorway, in my undies, waiting for her to comfort me like she had since I was 13. I sat on her bed, spread my legs, and showed her what my mind couldn’t stop worrying about.
“Just go check it out,” she calmly encouraged, as she stared at my vagina. “It’s probably nothing. I get ingrown hairs all the time too.”
A few days later, it was confirmed. I had contracted genital herpes. When the phone rang from the doctor’s office, I felt like my world was crashing into a million pieces. As he told me the diagnosis and continued on about treatment, all I could see were flashes of Google images that I’d frantically scrolled through while I awaited the results days prior. Worry swarmed my mind. What is my vagina going to look like?! No one is ever going to want to have sex with me. Receiving the news was challenging, but the aftermath was worse. I contracted genital herpes from my boyfriend, who had recently cheated on me. My self-confidence plummeted for months afterwards.
What happens in Vegas, stays in Vegas. Except for herpes.
I felt dirty, undesirable, and utterly gross. The stress of my diagnosis, his infidelity, and our future only aggravated my outbreak. Prior to the diagnosis, we were working our way through the lying and cheating, on the road to repairing our relationship. But the diagnosis only made it worse: I didn’t feel like I had a choice, I had to stay with him now. “Who else would want me?” I would think to myself. “I’m damaged goods, for good.”
While I eventually left the boyfriend months later, the effects of him and our relationship stayed on my body long after we parted ways. Every time I had an outbreak, I’d see images of her, the woman he cheated on me with, and I’d be filled with rage and sadness all at once. Angry his mistake ruined my life forever, and devastated by my choice of men. I blamed him, but I blamed myself more.
I punished myself and avoided dating all together. Navigating life as a single person, with herpes, was emotionally taxing. Even though I had support from my best friend, it felt isolating. No one I knew could relate to what I was going through. I was drowning in shame and fear for my future. I convinced myself I’d never get married. The shame triumphed my desire to be loved and cared for. I convinced myself no one would ever love me, that my diagnosis meant I was stamped “unworthy” – and I blamed myself for it.
People with genital herpes aren’t thought of as victims; they’re thought of as sluts, monsters, lepers, or just stupid.
The word herpes is often interchangeable with dirty and promiscuous. And the societal messaging about it is clear: If you contract herpes, it is your fault. And the stigma is far worse than herpes itself. While 20% of Americans have contracted herpes, I can assure you that what most diagnosed-people fear is the stigma. I can’t tell you how many times I’ve had to awkwardly laugh along when someone tells a herpes joke. Or listen to friends gossip in disdain about people they’ve heard have it. Being around people who shamed people with herpes furthered my isolation. Each joke and insult only deepened my internal shame and desperate desire to stay quiet about my own diagnosis.
When I was on a road trip with my best friend and three other girlfriends, something surprising happened. I was driving, and a friend in the back seat anxiously told us she had terrible news: She had contracted herpes. I drove in awe of her ability to share it with us so frankly. At that point, I had only told my best friend and now ex-boyfriend. As she continued to share her story, I stared back at her worried face through the rearview mirror. She had convinced herself life was over, a feeling I knew all too well. “Someone else I know has to have herpes,” she protested, going on about how 2 out of 5 people have herpes. I made eye contact with my best friend in the seat beside me, and she nodded me encouragement to speak up.
“Well…,” I hesitated. “I make up your 2 out of 5.”
She perked up immediately, and the worried look on her face softened to relief. We laughed about it the rest of the road trip – eventually dubbing ourselves “the 2 outta 5 group.” Openly talking with my friends helped relieve immense shame for me and my friend. It was going to be okay for my friend, and slowly, I started believing that I would be okay too.
While I eventually left the boyfriend months later, the effects of him and our relationship stayed on my body long after we parted ways.
Today, almost 10 years after my diagnosis, I’ve learned to embrace the power of speaking my truth as a way to navigate myself out of shame, and I’ve often wondered when I would find the courage to talk about it – with more than a car full of girlfriends. While the social stigma left me in hiding for years, I don’t feel ashamed anymore. But writing these words, and sharing them out loud, makes me feel incredibly vulnerable. Whenever I’d think about sharing this piece of my story publicly, I’d worry so much about people’s perception of me. Will I be the butt of the joke at the next social gathering? Will my husband’s friends have something new to quip about on their text thread?
My own internalized hate about what it means to have herpes showed up even when I thought about how I would share it. “I should lead with sharing that I haven’t had an outbreak in over five years. People must know you’re not walking around with an infectious vagina all day long!” I thought.
But of course, I know none of that matters. Controlling the narrative, how and when l contracted it and how long it’s been since an outbreak, doesn’t change the facts: I have herpes. What I’d rather control is owning my truth as a way to remove stigma and shame. In the United States, 1 in 8 people have herpes, which means just over 40 million people are living with presumably the same shame I did. We’re very far from alone. People shouldn’t be ashamed of having herpes. I shouldn’t be ashamed.
While I’ll always have herpes, it currently lays dormant in my body. Just like my shame about it does too. And my hope in sharing this is that it helps alleviate some shame for anyone struggling with the stigma of herpes. Because the only way we can fight stigma is by normalizing it. There is life after a herpes diagnosis, and my journey is evidence of that. I’m married, and someone decided to love me knowing I had herpes. But most importantly, I decided a long time ago to love myself through the stigma and shame. It wasn’t my fault. I’m not dirty. And I’m not unworthy of love. Like a friend of mine recently shared: “It’s really not a big deal. In a few years, we’ll all have herpes anyways.”
Please comment down below if you have herpes, or share your story online using the hashtag #NotDirtyJustHerpes. There’s power in numbers. And the more people talk about their diagnosis, the less stigma and shame herpes will have.