words & graphics by Emily Depasse (she/her)
I’ll never forget the chill of the examination table on that day in July 2015. The way the words left the doctor’s lips. This looks herpetic. The certainty as she closed my legs and removed her gloves. The first tear that slid down my cheek and met the corner of my upper lip. The overwhelming feeling that this was it. In my mind, this moment was the end of my relationships and sex life as I’d just come to know them in my early twenties.
No matter how many times I’ve shared my diagnosis story over the last four-and-a-half years, the response from others echoes a similar theme. A uniform sense of gratitude and near disbelief that there’s someone else in this world who’s been there, who knows the shame, isolation, emotional rock bottom and eventual rebirth that often follows a positive diagnosis. That there’s someone else who has searched the depths of Google and Reddit boards scrounging for answers that the Centers for Disease Control and Prevention (CDC) failed to provide. That they’re not merely a statistic spouted off by yet another healthcare clinician. That their experiences are valid, and more importantly, that they are seen.
In the United States, the CDC estimates that more than one in six people between the ages of 14 and 49 have genital herpes. Due to the lack of mandated reporting, overlooked symptoms, and fear around self-disclosure, this number is likely higher. Despite how common herpes is, its stigma still lingers. Society equates herpes with dirtiness, uncleanliness, and promiscuity. I felt these words reflected back at me almost immediately following my diagnosis and struggled for nearly six months to reconcile my identity within them.
Although the herpes simplex virus (HSV) is socially shunned as an outlier, many people fail to realize its familial bond with the viruses that cause chickenpox, shingles, and mono. Even more shocking is how many deny that cold sores are herpes, too—so let’s break it down.
There are two types of HSV: HSV-1 and HSV-2. Both viruses can present genitally, however, HSV-1 is the virus most often associated with oral herpes, commonly referred to as “cold sores” or “fever blisters.” The world is quick to categorize these types as either “good” or “bad,” and “better” or “worse.” Even among those diagnosed with HSV, there is the temptation to alleviate the internalized shame through what I label as type stigma. For example, someone who has HSV-1 might say, “At least I don’t have HSV-2.” In reality, HSV-1 and HSV-2 share more similarities than differences.
In the last two years, I have refrained from sharing which type of herpes I have for these reasons: It doesn’t really matter which type of herpes I have and it may further work to enforce type stigma and herpes stigma as a whole.
While there is an ultimate desire for certainty in our late-night Google searches around the whens, ifs, buts, and hows of our diagnoses, our individual experiences of HSV cannot be summarized through statistics. There are some stories that the facts simply fail to address, which is why they deserve such a prominent space in our discussion.
As I started brainstorming affirmations to include in the Resilience Affirmation Deck, I returned to many of the moments mentioned here and asked myself, “What would I want to hear from someone after my diagnosis?” From patience around healing, acceptance, sexual pleasure with others, and touch from the self, the Resilience Deck caters to those shared feelings of stigma, shame, and isolation in hopes of making a connection. In hopes of going a step beyond the statistics and above the stigma.
Meet the Author
Emily Depasse (she/her) @sexelducation
Favorite Form of Self Care: Indulging in a bubble bath and surrounding myself with tea lights while sipping a glass of champagne. Bubbles and bubbly!
Other Articles by Emily: 10 Steps to Supporting Someone with Herpes
This article was originally published December 19, 2019 to mark the 71st anniversary of Human Rights Day (HRD), a day celebrated around the globe to advocate for and defend human rights in whatever capacity that may be. This year’s theme “Stand Up for Human Rights” aims to celebrate the potential of youth as agents of change, amplifying their voices, and engaging in a broader range of global audience through education and media.
Only through educating ourselves can we tackle the stigma surrounding a positive genital herpes diagnosis.
The most important thing to know is that you are not alone. And we’re here with you.