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.
The Hangover
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.
Alexandra D’amour
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.
Thanks so much for sharing!!! My adoration for you had reached a new high as I’m in 2 of outta 5 crew too, and I love that you are doing the work to normalize the stupid stigma, and be an example of freeing yourself of the shame.
You’re right, the stigma is worse than the experience of it. I discovered at 16 after just losing my virginity, but not knowing where it came from as I had two partners is a close period of time and was too MORTIFIED to ask them about it and then reveal myself as a newly inducted “official slut”.
Like you I kept is secret, with only my parents knowing (which devastated my mother to see what it did to me emotionally, but luckily she was very supportive) and we agreed it was safe in our little circle but for my protection to just keep it there for now. For years I avoided relationships, as there was just no way I could say the words. As sometimes it would be dormant for years, I would forget about it and sometimes almost be in denial, and then maybe take too long to reveal to a partner, as it really was not an issue in my life…. at all. But when I finally had the courage to explain myself in the handful of relationships I had…. it was no big fucking deal. Always met with compassion and understanding, and the worst of it being that maybe they needed to think about things overnight and chat later.
I don’t have the bravery you do to be out about it yet. But thank you so much. If I could have read that when I was going through the depression with it as a teenager (or any age really!) it would have lightened the load. The shame is so debilitating and DAMAGING, so unnecessarily. You can live a happy life, you can have relationships, it’s going to be okay and it’s not a big deal. At least when you get cold sores, no one can see them! lol
#NotDirtyJustHerpes
I contracted HSV-1 in the genitals pretty young and the slut shame was real. Still only a handful of my friends know, but your sharing has made me reflect on the transformation of my feelings on it. Outbreaks only come every few years, and they used to keep me locked up, isolated in a mentally dark place until I was all clear and could face the world again. I have grown a lot as a woman, have let go of that shame on myself, and can see how my maturing has integrated into this aspect of my physical self. Last week I had an unsettling conversation with someone that has been toxic to me, though I had trouble seeing it. What do you know, the next day I have a cold sore on the labia. My first thought was “wow this person is bad for my body!” waking me up to take it very seriously. The stress he was causing me, manifested physically, and my body is telling me what my mind wouldn’t. And I was grateful??? I never would have imagined that was possible.
I have had herpes since i was 17 years old (I’m 30 now) and part of my shame was not knowing who gave it to me. At first i was really open about having it. I told my friends and family.. but my family took the news terribly and shamed me into silence. The worst was probably my mom who didn’t admit until months later that she had it too. I tried navigating the dating scene and figuring out when the right time to disclose my diagnosis would be. In the beginning i wasn’t as aware of the risks and accidentally put a few guys at risk- that didn’t go well, obviously. I tried the whole “not telling” thing after my friends would see me heartbroken from a rejection but my truth has never been to be a liar and that didn’t feel good or morally right. It’s only been in the last year that I’ve been able to collect myself a little better and know that i am still worthy regardless of having herpes. It is only now that i know what i need from a partners response to my herpes and know I’m worth asking for those needs to be met. I think all the time about how much I’ve struggled with having herpes for so long and as an adult.. and then i think about all the people out there going through the same struggle and shame and yet we’re so silenced that we hold this shame in secrecy and believe no one we know could have it. If only we could speak up in a safe space and all come together. Think about the 14 year old girl getting herpes and she can’t even tell her parents. She’s so young and probably so scared. Or the people on online forums talking about wanting to kill themselves. This stigma is awful and i appreciate you coming forward and sharing about it. I’ve wanted to as well so that people know they aren’t alone and it’s not a big deal!
Me too. Thank you so much for your vulnerability and for sharing your story! I’ve had HSV1 genitally for 3 years now (I’m 28) and it’s been a long journey of self acceptance. So much love to you!
Thank you for sharing this!! I found out I had HSV2 when I was 22. It’s been 6 years but I remember that day so clearly because I thought no one would else want to date me or have sex with me again. Unfortunately, I have no idea who I got it from. I think it could’ve been the guy I had been dating rang that time but I’m not sure as I never had an outbreak and I still never have. I found out from an std blood test and that shook me to my core because I didn’t even know you can be symptomless! I shamed myself immensely esp when telling my ex at that time as he blamed me. Luckily, I’ve been with my current boyfriend for close to 5 years and he was very accepting when I told him my story. I am still getting comfortable talking about it with people as I realized the more I open up, the more friends say “oh me too!”
I loved this sorry so much! Very much dealing with this shadow in my life, as an ex passed it along after my immune system was affected by chemo therapy at 21. I was devastated and struggle to be intimate with anyone over my shame of having it. I struggle to laugh at the jokes and haven’t dated in some time. When you think about it, it’s literally in the same spectrum as chicken pox and shouldn’t be that big of a deal. Love your conversation and appreciate your vulnerability ❤️❤️
You’re so strong for sharing this despite not knowing what the consequences or backlash would or could be. Thankfully this piece was well-received, and I’m glad it was. You’re speaking out on behalf of so many women. I don’t have herpes, but I can only imagine how isolating it can be. You’re a tough cookie <3
Reading this was like looking in the mirror! I was diagnosed with genital herpes when I was 20, and it downright ruined my Sophomore year of college. It turned what was once simple test anxiety into full blown social anxiety, which was horribly confusing to navigate as a very social person comfortable in her own skin. It broke me, and even though I knew it was just a skin rash, I also knew others did not see it that way (all of those damn herpes jokes, there are way too many of them!). I am now 28, in a happy and honest relationship, but still struggle when having an outbreak with the thought of “I am not enough.” I feel as if my body has betrayed me once again, and those feelings of insecurity and shame start to resurface. But you know what? Not one single person in my life gives one single shit that I have herpes. It is a part of me, yes, but it does not define me. In a way, herpes has made me a stronger person both mentally and emotionally. It has been a way to weed out the negative people in my life, clearing a path for only positive energy and honesty. I AM ENOUGH, and so are you 🙂
Really great, courageous article. There’s a cure in the works now.
https://news.cornell.edu/stories/2019/04/crispr-cas3-innovation-holds-promise-disease-cures-advancing-science
Thank you so much for writing this. I contracted HSV2 one year ago. To this day, only the guy who gave it to me knows. Nearly all of my friends have made herpes jokes in the past year that I too just had to weakly laugh along with. I’m scared to tell anyone, and I don’t know how to get the courage to share my story to even just a friend. I remember after my diagnosis, my doc told me how common genital herpes was. I read how many people have it and how many don’t even know it. In the past years I’ve accepted the diagnosis and personally know I am not gross and #notdirtyjustherpes — Just hoping one day soon I can share my story with a loved one so I don’t have to hide every time I have an outbreak and put on like everything is fine.
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I was diagnosed with Herpes for 2years ago, due to this my lover left me, i lived in pain with the knowledge that i wasn’t going to ever be well again i contacted so many herbal doctors on this issue and wasted a large sum of money but my condition never got better i was determined to get my life back so one day i saw miss sanders post on how Robinson Buckler saved her from the VIRUS with his herbal medicine i contacted Robinson Buckler on his email address Robinsonbuckler yahoo. com, we spoke on the issue i told him all that i went through and he told me not to worry that everything will be fine again so he prepared the medicine and send it to me through courier service and told me how to use it,after 14days of usage I went to see the doctor for test ,then the result was negative,am the happiest woman on earth now. he also brought my lover back with his spiritual powers, i never knew he was a spell caster too, this testimony is real.thanks to Robinson Buckler God bless you.
Thank you so so much for sharing Alex, I have followed you for over a year now and really admire your bravery for sharing your experience and it has helped me immensely!
I am also that 2 in 5, I was diagnosed with genital herpes 2 years ago at the age of 23 i think I contracted it from my ex partner of 5 years (child’s father) we were on and off at the time he was diagnosed after a very small outbreak and then a few weeks later I experienced the worlds worst outbreak and symptoms.
It has taken such a mental and emotionally toll on my life, it’s something I think about everyday and it consumes me. How will someone ever love me, how will I ever be in a relationship again, how will anyone ever accept me and not think I’m dirty. A slut. Or disgusting. I still to this day have not said the words out loud that ‘I have HERPES’…
I feel so much shame and embarrassment that I don’t think I’ll ever be able to speak those words out loud to anyone.. I can’t wait for the day that my diagnoses doesn’t hold a dark cloud over my wholebeing!
You are right the stigma is the worst of it all the amount of times the word herpes has come up in conversation with close friends and groups etc as a joke or did you hear so so has herpes etc. I live with serve anxiety of passing it onto someone else and destroying someone else’s life like it has destroyed mine!
I can not wait for the day I feel comfortable enough in my own skin to speak out about my diagnosis and how I over came the shame-fullness and embarrassment!
I can’t wait for the day I am FREE!
#NotDirtyJustHerpes