And Why I Refuse to Continue Suffering in Silence
“I haven’t been honest with myself or with you that herpes is a deal breaker.”
The words hung in the air between us. My skin started to feel prickly as I processed what he was saying. His admission confirmed my worst fears.
I didn’t hear much beyond that because all I could think about was getting out of there before I lost it. I could feel the familiar tentacles of trauma wrap themselves around me and tighten their grip. All of the deep-seated fears that had sown themselves into my psyche and seeped into my sex life threatening to spill over at any moment.
I grabbed my plate of unfinished chicken kabobs off the table and made it to the sink in the kitchen. The room was spinning and my mind was racing and all I could do was say “I have to go” over and over.
He asked me to stay but I was already grabbing my purse from the counter and frantically searching for my keys. When he wrapped his arms around me his embrace felt defeated and full of sympathy. He knew what acknowledging this truth out loud meant for both of us.
I wasn’t planning on falling for anyone. It just sort of happened. I wasn’t even sure I was capable of it after years of being emotionally cut off from the people I dated. He represented so much of what I wanted in a partner and our immediate connection was undeniable.
The night we met was one of those first dates that I’ve heard about but never experienced. We stayed up all night talking, laughing, and swapping travel stories as I played dress up in his Burning Man outfits and we drank cocktails.
We talked about how many kids we wanted to have, where we saw our lives heading, and listened to Fleetwood Mac on his deck.
“I’m ready to settle down and build a home and have a family.” I stated matter-of-factly. After spending my twenties traveling the world and pursuing my career, I wasn’t shy to admit that I was no longer interested in casual dating.
When he called me an Uber around midnight, it took about twenty minutes for him to text me and ask if I wanted to come back over because it “just felt right”, and it did.
Not planning on being physically intimate that night, I was hoping I could put off the conversation that I always dread.
As we laid in bed talking he turned to me asking point blank, “Have you been tested recently?”
So I told him. Between tears, I shared with him the story of how my longterm boyfriend of seven years had given me genital herpes in my twenties. Although his reaction was better than I expected, I braced myself for the likely chance that I would be ghosted in the morning.
When his name popped up on my phone the next day, I held my breath as I opened the text message. “Hey, so I did some reading and if you’ll get back on Valtrex daily and we use condoms, I feel alright about it.”
The relief washed over me as I finally allowed myself to give in to the excitement I was feeling from the night before. Not only was I impressed at his initiative, but it seemed to be confirmation that he felt the same connection I had felt.
As we grew closer over several months, his palpable anxiety around my STI status became the elephant in the room. One that neither of us was ready to talk about. A self-proclaimed hypochondriac, he was doing his best to work through it while I just quietly hoped our growing connection would become enough for him to see past it.
I should’ve known after a month into dating him, when he lathered his penis in hand sanitizer immediately after we finished having sex. I felt myself emotionally recoil and I’m not sure I was able to recover.
Or another time when he texted me saying, “I’m scared of your vagina, and I’m trying to get over it.” I drank whiskey then sobbed in the bathtub all night.
The connection between us sustained the relationship for a while. It was strong enough that he kept pushing the needle forward, bringing up the idea of exclusivity and introducing me to some of his friends and family. Then we went on vacation together.
We hiked and camped our way around New England & Maine. We cracked up over our novice-level camping mishaps and shared a bowl of mussels while listening to Andrea Bocelli under an awning in the pouring rain. We woke up at four in the morning to watch the sunrise together from the top of a mountain. It was there bundled up with his arms around me and a bottle of champagne tucked between us that I knew I was starting to fall in love.
Then two weeks after we got back he told me.
It hit me hard. I’ve never had to walk away from someone in the middle of falling for them but there was nothing I could do. In the end it was just too much for him and his anxiety was re-traumatizing me at every turn. We both knew we had to go our separate ways.
When he admitted his feelings out loud, it felt like the ground fell out from underneath me. It transported me right back to the moment in 2013 when I tested positive. It was a place full of dark feelings that I had refused to face for years and suddenly, I had no choice.
I was wedged between cardboard boxes of to-go utensils in a utility closet when I found out about my diagnosis. I was waitressing at a high end restaurant at the time and when the doctor’s office called with my test results, it was five minutes before the dinner shift began.
“Is this Allyson?” The nurse practitioner asked.
“Yes” I whispered in nervous anticipation.
“I’m just calling to tell you that you tested positive for Herpes Simplex Type 2.”
As she went on to rattle off information about antivirals and statistics in a cavalier tone, the weight of what was happening hit me. It was as if I was watching life as I knew it crumble before me.
I leaned up against the boxes to steady myself as I suppressed my sobs and tried to pull myself together before any of my coworkers would know something was wrong. I could barely walk because my whole pelvis felt like it was on fire. No one knew.
I was twenty-six at the time, living back at home for a short period while I transitioned careers. Bryan and I had been together on and off for seven years. No matter how toxic our relationship was, we always found our way back to one another. This time was no different.
Before we slept together that October, he told me he needed to talk to me about something. He explained that at one point over the prior year he had gone to the doctor for what he thought might be an STI. After having it examined the doctor had told him, “Well it’s hard to tell but if it is something, it’s mild and it’s nothing to worry about”.
Knowing what I know now about the way herpes is diagnosed and how it presents, I know that I was given a snapshot of the truth. If someone is having an active outbreak, the lesion is swabbed and tested immediately. The diagnosis is very clear, there is no gray area of “maybe it is, maybe it’s not”.
The reality is that he downplayed his diagnosis to me and because I loved and trusted him and my boundaries were not the best at the time, I didn’t protect myself. It was a mistake anyone could easily make, and it changed my life forever.
I knew I had it before I got the test results. It was pretty obvious. I called Bryan sobbing, asking him if he would go to the gynecologist with me because I was alone and scared. He refused saying, “I have to work late the night before and I’ll be too tired”. I was shocked at his dismissal. That was the last time we spoke for years.
I had no one and plagued by the shame and stigma I spiraled into a period of darkness. I withdrew and I cried all the time. No one in my life knew other than my mom and eventually a couple of my best friends. In addition to dealing with the fallout of the diagnosis and the implications that it had on my life, I also had to process the end of my relationship with Bryan.
The deep betrayal I felt, the grief, the anger, and most of all the realization that the person I had loved was not who I made him out to be in my mind, made herpes feel even more devastating. The fact that I had lost a piece of myself, my sexual freedom, and compromised my body for this man was too much to handle. It significantly altered the way I approach intimacy.
Each time I have to discuss my status with a partner, every time someone walks away because of it, it’s not just the diagnosis that makes it so emotional. It’s everything it represents to me.
After my recent heartbreak, something in me shifted. In a way, this is the catalyst I have needed to come forward and speak out as an advocate for the millions of people in my situation.
The shame, guilt, and stigma that we’ve placed on herpes culturally has far-reaching implications on both the individuals who have it and also our general population’s public health and safety. It perpetuates ill-informed stereotyping and deters important conversations and real education from happening.
From the outside looking in, most people in my life would never guess I am dealing with this. My social media is sparkly and professional with carefully curated content about women’s health and alternative medicine. The image I portray and the way I present myself is incongruent with what many people assume someone with herpes “looks like”.
But that’s the thing, there are millions of people out there that are just like me. We’re just not talking about it and I’m over it. We simply can no longer afford to not normalize it.
From a public health lens, it is a crisis. The WHO estimates that worldwide 3.7 billion people have HSV-1 and 491 million have HSV-2. In addition, it’s estimated that up to eighty percent of people who have it are asymptomatic carriers unaware of their status. It is not routinely tested for on a standard STI panel and most providers won’t suggest it unless a patient is actively exhibiting symptoms.
Being diagnosed with herpes is more than just an occasional (or if you’re lucky- rare) outbreak. The psychological impact of this diagnosis is something that needs to be discussed openly. The weight of suffering in silence under the stigma is stifling.
Modern dating culture with its swiping, superficial connections, & casual sex, is a nightmare for someone like me. Whereas physical intimacy typically precedes emotional intimacy in our culture, having a positive herpes status and choosing to disclose that to anyone I sleep with doesn’t afford me the option. Being so deeply vulnerable feels impossible much of the time. I often avoid it altogether.
Despite being seven years into having herpes and lots of therapy, there are days when I feel like it hasn’t gotten much easier. I have worked hard to transcend the victim mindset and most of the time I can. I have learned to see this as one of my greatest teachers and an opportunity for growth. It has led me to have a deeper sense of compassion and challenges me to maintain radical self-acceptance. I appreciate the filter that it puts on the people I actually do sleep with. I trust that the right person for me will accept all parts of me, even this.
But I wouldn’t be honest if I said I don’t have moments of deep grief and anger even several years later.
The truth is, I was violated by a man I loved. Plain and simple. It continues to impact my life and I’m left with a recurring and often times physical reminder of it. For a long time I didn’t identify this experience for what it was: trauma. Thus, I didn’t seek help or support.
As a healthcare provider, I see my own experience mirrored in the experiences of the many people I work with. When it comes to integrative health, I feel many people do not identify their experiences as traumatic. That unresolved trauma is stored in the body. It winds up often manifesting itself physically in the body and becoming a contributing factor in common illnesses, disease, and dysfunction.
Expanding upon our cultural narrative around sexual trauma and the experiences inclusive to that phrase is what is driving me to write this essay. I firmly believe that the conversation is too limiting and we aren’t creating enough space for honest, vulnerable, discussions. We need to start thinking beyond rape and sexual assault. Sexual trauma is any experience that alters the way a person perceives or approaches sex and intimacy.
It’s an STI diagnosis, a pregnancy scare, infertility, an abortion, miscarriage, or traumatic labor and delivery. It’s an array of sexual misconduct, groping, objectification, a long term abusive relationship, stalking & harassment. And although necessary of course, it can even be a routine gynecological exam or an invasive procedure like a colposcopy. The list goes on.
In addition, the treatment strategy must be one that is integrative, holistic, and multifaceted. Trauma is psychosomatic in nature. It is so nuanced and complex thus it requires an individualized, whole-body approach. Access to quality mental healthcare as well as alternative modalities like acupuncture and therapeutic bodywork are an integral part of the healing process.
Conversation creates more awareness and subsequently increases demand and access to care. We have to stop shying away from the hard conversations.
We’re all unique with our own set of experiences and our own threshold for processing them. Silence perpetuates shame and stigma. In a time of increased division and isolation, it is imperative that we show up in more authentic, present ways and we cultivate deeper intimacy and connection with one another. We can only do this when we acknowledge our humanness, wounds and all. That’s where the true healing begins.