'When I Was Diagnosed With Herpes, I Thought My Life Was Over. But It's Given Me Purpose And Direction In My Career.'
n July 2015, I had recently graduated from college with my degree in gender and sexuality studies, along with a promising internship in my field. My self-confidence as it related to my career, my body image, and my impending future was at an all-time high.
Then I woke up one morning with pain around my vulva and told myself every possible explanation for what it could be—every reason that it couldn't be an STI. I arrived at the urgent-care center with my thoughts racing and heart in my stomach. Deep down, I knew it was something, but I still held onto the hope that maybe it was really just an allergic reaction to that new pair of underwear. But testing confirmed my positive herpes diagnosis—and my newfound identity as a herpes-positive woman.
From the moment the word herpes left my doctor’s lips until about six months later, I questioned everything about myself. Not all the time, but a lot of the time. Disclosing that I had herpes to potential sexual partners felt like an impossibly embarrassing burden. Dating didn’t feel like an option. Informational pamphlets felt insincere and outdated. Health-care staff felt like they were being intentionally cold and demeaning.
Slowly, I began to unravel another six-letter word that changed my life: stigma. Once I understood how much (unnecessary) stigma surrounds herpes, I was able to see the condition for what it really is: a common STI that impacts my life, but not at all in the terrifying way I had thought it would.
It took a lot of time, research, self-reflection, and education, but I no longer identify with the stigma surrounding herpes. If someone told me a few years ago that my herpes diagnosis would positively influence my work and drive my purpose in this world, I would have scoffed at them in disbelief, just like I did at those outdated herpes education pamphlets my doctor handed me. My herpes diagnosis was one of the defining moments of my life, but it is no longer my self-definition.
Here's what I wish I would have known when I was diagnosed five years ago.
When I got my diagnosis, my health-care providers reminded me that herpes is much more common than you'd think (more than one out of every six people aged 14 to 49 have genital herpes), gave me sets of facts and figures, and told me that eventually I'd be “just fine.” For some, this might resonate, but for me, it produced additional feelings of isolation. It didn't answer my questions about what my love life or health would be like in the future.
The more I scanned the herpes informational pamphlets I was given, the further removed I felt. The photographs of happy partners with hopeful futures seemed fake. I wondered how much they were paid to pose for the images. After all, the only media representations of people with herpes that I recalled involved rejection and humiliation.
So I did what anyone with questions and elevated levels of anxiety does: I turned to the internet. I remember nights when I stayed up until two and three o’clock in the morning scouring forums, blogs, and the crevices of Google search results for answers to questions like, “what is my rate of transmission to sexual partners?” and “how many outbreaks will I have going forward?”
But a lot of these questions don't have definitive answers. That's one of the most difficult aspects of being diagnosed with herpes, or any STI. While there are estimates of transmission rates and studies on the impact of suppressive antiviral therapy, everyone’s body responds differently to the virus and treatment methods.
You also likely won't be aware if you are experiencing asymptomatic viral shedding, which means the herpes virus is active and still transmissible without visible symptoms.
Amidst nights of bathing in uncertainty, I began to learn just how little my sex education and undergraduate coursework had actually taught students about herpes.
There's also inadequate information for anyone diagnosed with herpes who identifies as part of a minority group. I've found trans and queer representation in pamphlets and resources to be nearly non-existent, leaving many doctors without recommendations and guidelines to share with these patients.
This lack of resources led me to create my website and instagram, SexELDucation. It's dedicated to redefining the narratives around herpes and other STIs and relationships. I also created the Resilience Affirmation Deck, a card deck with thirty-three affirmations for those working to reclaim their identity and overcome the stigma around STIs. It’s a tangible tool that can be used in medical and therapy offices, with partners, and most importantly, with yourself. It’s more than just a set of statistics or government guidelines; it’s something that lets herpes-positive people acknowledge, confront, and work through stigma in their own time. Additional new resources for herpes-positive folks have also popped up in the years since my diagnosis.
Below are a few of my favorite resources (ones I wish I had had when I was diagnosed):
American Sexual Health Association: More user-friendly than the CDC’s website while maintaining itself as a source for facts.
Ella Dawson and her TEDxTalk: Although Ella Dawson is retired from herpes activism, her work remains as a foundational resource for those working through the effects of herpes stigma and their partners.
@hsvinthecity: A virtual, inclusive support group that hosts women and all-gender meetings each month.
@positive.results.us: Another virtual support page that provides empowerment to women living with herpes.
Something Positive for Positive People podcast: Podcast turned non-profit, Something Positive for Positive People, hosted by its founder, Courtney Brame, holds a library of over 100 herpes and other STI-related interviews with individuals sharing their stories.
In addition to creating a space and resources that helped me get my voice and reality into the world, dating—which felt unimaginable right after my diagnosis—also helped me feel more like myself. I started dating again six months after my diagnosis, and in 2017, began a relationship with a partner (who wasn't STI-positive).
Even though I'm no longer with that person, even the way it ended is significant to me. I once thought that my herpes status would be responsible for my relationship’s end, that I would eventually be rejected or left because of the virus held beneath my skin—but that wasn't the case. We broke up for a completely different reason.
I believe that my ex’s acceptance of my diagnosis contributed to the revival of my confidence. I not only felt safe sharing my status, but my desires, hopes, and dreams. I now see that my disclosure created an opening to talk about more than just what I wanted or needed in bed. It provided a foundation for how I approached all relationships in my life going forward.
My herpes status is public, so a formal disclosure isn't always necessary with new partners. But it wasn't always that way.
Right after I was diagnosed, I remember feeling the urgent need to tell my then-partner that I had not only tested positive for herpes, but that I suspected that it originated from him.
I sent the cliché, “We need to talk in person," text. He talked around it and said he was busy, and my urgency quickly became palpable. He initially suspected that I was pregnant, but was surprisingly empathetic when he learned the reality of the situation.
A post shared by EMILY L. DEPASSE (she/her) (@sexelducation) on Oct 29, 2019 at 6:46am PDT
As much as we try to plan disclosure, it might unfold in ways you aren’t prepared for or didn’t predict. While in-person disclosures may work for some, these situations might present safety issues for others. Texting is also a viable option. My only caution in sharing an STI status via text message or dating app, like anything we share or post online, is that these conversations can be captured in a screenshot, shared, and misrepresented.
Still, disclosing digitally can ease anxiety for some, and resources can be linked within the text for partners to do their own research on having sex with a herpes-positive person.
I remember one particular night, sitting on the floor of my bedroom and reluctantly signing up for a herpes-positive dating site. It felt like my only viable option. Signing up felt embarrassing. It was another website filled with smiling partners claiming to have found love despite their positive status.
While some people appreciate these types of apps, I quickly learned that it was not the right space for me. As years passed and my understanding around stigma grew, I couldn't help but feel that herpes and other STI-specific dating apps might be further reinforcing social stigmas.
By limiting the dating pool to positive singles, these websites immediately present STI-positive people as outliers in society. While detaching the need for disclosure might seem appealing at first, I would argue that it also removes the opportunity for the communication—and the trust you build from that—that are necessary for short and long-term relationships.
With transparency and communication, STI-positive people can find love with STI-negative partners. I know, because I've experienced it.
Emily L. Depasse is a sexologist and sex educator redefining the narratives around sexually transmitted infections (STIs). Follow her on Twitter and Instagram @sexelducation.
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