Jolene’s story

Like many, I was confused when I received a positive herpes diagnosis from the doctor. I knew from how uncomfortable I was feeling the previous few days that something was off, but I didn’t think it was herpes. The doctor calmly tells me about the symptoms and how people with HSV-1 tend to have less outbreaks than HSV-2. Great… I guess? She tells me about medications I can take and orders a prescription. Her demeanor was calm, and it made me calm. I told her how I was in a relationship and my partner thinks he has HPV. but he has felt a burning sensation before, which didn’t sound like a symptom of HPV. She confirmed that it is, indeed, not a symptom of HPV and told me men don’t experience symptoms from HPV. I knew what there was to do is tell my boyfriend.  

I was in an exclusive relationship for a few months at that point, so I had to have contracted it from him… but how? He never shared his status with me. We shared so much with each other at that point. How could that not have come up? Thoughts were buzzing around in my head: “How could this happen to me? I’m careful.” 

I really was thinking “Did he tell me this before?” I vaguely remember telling him I had HPV once, but I no longer have it. I believe he said he had the same thing. When was that again?? If I had to think really hard and question myself more than once, the conversation around sharing our statuses was clearly not created as an important conversation. “Thats where I fucked up” I thought. I assumed someone would tell me! Didn’t he say he loved me? How could he keep that a secret?

I text my boyfriend and tell him we have to talk. It is dark by the time I left work. I walked to Union Square Park and found a spot away from people. I sat on a rock, called him and told him about my positive diagnosis. His first question is “How did you get that?” 

Me: “Well, from you.” 

Him: “No, I don’t have that. I have the other thing.” 

Me: “I think you think you have HPV, but HPV doesn’t present symptoms in men.”

Silence

Him: “I’m sorry. I am going to go get tested tomorrow.”

The next day he gets tested at Planned Parenthood. 

Positive. 

He calls me and apologizes. 

The positive diagnosis did not have an impact on our sex life. I felt uncomfortable receiving oral sex, but we proceeded with other activities as usual.

I intentionally kept this news a secret from other people for fear of looking bad and being judged. If you asked me, I thought my friends were judgmental, I would say no. I am grateful for having the most bomb ass, loving community around me. Still, I thought this positive diagnosis made me look stupid and careless. Really, I am so much smarter than this! I didn’t want to hear it. No one in my life ever told me they have herpes. I felt alone. I didn’t know who to talk to about it, so I didn’t. I didn’t have many outbreaks, so it was easy to ignore and ignore I did. For almost 2 years, the only people that knew of my diagnosis were my boyfriend and 2 other friends. I had to tell SOMEONE. I chose my roommate Katelyn. We’ve had very open talks about vaginal health, relationships - truly everything. My gut told me my secret would be safe with her. She was quick to let me know that herpes was super common and sent me a TED Talk featuring a bad ass woman speaking about her diagnosis. Although I didn’t watch it right away, I so greatly appreciated her support. It comforted me that someone out there was open to speak about herpes. 

Fast forward to 2020

My boyfriend and I broke up shortly before the pandemic began. Between the pandemic, schedules changing, baking orders, reading and working, dating wasn’t on my mind until Fall of that year. I felt like hot shit, too. I had my mojo back. All was good in the world! I was having a moment washing the dishes where I thought about how awesome it would be to have some good sex. The unleashed, limitless type of sex. Ugh! I let myself feel that…until a thought came in.

“Girlfriend, you have herpes.” 

All that juicy possibility for a great sex life just disappeared and new thoughts came in. “Unleashed sex life… probably not.”  

“How can you have sex now?” 

“How do I even have this conversation?”

“Where do I start?”

“Dating is going to be a challenge.” 

“It’s really going to take something for someone to be with you” 

I accepted that last thought as a truth. It made sense. It IS going to take something for someone else to be okay with this. After all, they don’t want herpes. 

Fuck. 

I finished washing the dishes and carried on. 

I finally decided to start a communications course work paid for, so I could receive support on handling a work conflict. They presented us with this concept of being with "what is so" in your life. Even though the examples being given were around the “What’s So” in communication with other people, I managed to apply this to my own self talk around my herpes diagnosis. The "What's So" is that for the last 2 years (at that point), I had one outbreak each year and the outbreaks lasted about 7 days, including figuring out I was having an outbreak and taking the medication. In total herpes impacts me about 7 days out of 365 days...which meant for 358 other days I experience no noticeable symptoms. Framing my status in this way had me see I was making my diagnosis a HUGE part of my identity and was letting it take up more mental space than it needed to. What there was to do was communicate the numbers statement to future partners. I can do that! 

I finally gave myself compassion and liberated myself from the idea that something was wrong with me. I got that my status has nothing to do with my identity. That truth I accepted while washing the dishes? Total bullshit. I DESERVE a great sex life, simply because I say so. Period. Not in spite of anything. No. I want it because I want it. I felt free. 

Shortly after the course, I began to educate myself. Millions of people have herpes - WHAT?! Millions. How could it be that so many people have this condition, but no one talks about it? That annoyed me. I wondered if other people felt as alone as I did. Intuition and probability alone told me yes. That’s how life is. Something happens and people believe they are now undeserving or unworthy because of it. Like me, they accepted a truth that dating will be hard because of their positive status. I imagined how many people out in the world who are not fully self-expressed as a result of their status. I felt a much larger sense of compassion. I wished more people could feel the freedom I was feeling. 

It is so normal to withhold thoughts or secrets that may make us look bad. For me, it meant keeping my status a secret. I realized if I continued to keep my status a secret, there was zero possibility of creating freedom for others. I was not okay with that. I tested my sense of freedom, and I began telling more friends and family about having herpes, one conversation at a time. 

I couldn’t tell you how many conversations I had over those next 3 months, but what I can tell you is I did not receive a single criticism. I received nothing but love. My sense of freedom expanded tremendously, and I no longer felt I was carrying a burden. 

Shortly after, I began to date, which was fun for the first time ever. When I disclosed it to him, he was super supportive and understanding. I truly could have asked for a better outcome. 

My curious mind wondered what other people say to their partners. when they are disclosing their status. I did a Google Search and was underwhelmed with the resources that showed up. I wondered why the stories were short. I wondered why there were no faces featured. I wondered why people didn’t actually say the lines they used to tell their partners - what the heck! 

It wasn't until I had an outbreak shortly after I had sex with Mr. Wonderful (and I do not mean the guy from Shark Tank) that I began to notice him distancing himself from me. I was sure this situation was new for him. He was likely uncomfortable. This was new for me, too. After maybe 2 weeks of a bunch of back-and-forth texts, he decided we shouldn’t have sex anymore. What he doesn’t know is that I was already checked out because I will not have sex with someone who isn’t a hell yes to having sex with me. One of his parting lines was he didn't want to compromise his health. Yeah. Got that. I guess if you are single and you have an option to be without concern for contracting an STI from a partner, you should do that. “Logical”, I told myself. 

 A few days later, I really thought about how a line like "compromise my health" could hurt someone's feelings. Because we are not taught how to have conversations around STIs, even the most well-intentioned and kind people do not know what to say in these scenarios. As much as it sucks, it is not anyone’s fault they don’t have experience talking about this. 

One month later, I woke up one morning with the idea to make a documentary featuring people living with STIs. I was buzzing.". They [people with STIs] would tell people what to say and what not to say" is what I told my friend Leonel as he picked me up to take a COVID test. 

That was February 2021.

Fast forward to January 2022, the No Shame in this Game documentary filming is complete, and we have now expanded into a platform of the same name. I could not have done this without the support of my family and friends and larger community. Thank you to every single person who held space for me (and continue to do so) while I’ve navigated this entire process.