So much is shared publicly nowadays. Promises and moments of affection between lovers, glimpses of babies’ lives from overjoyed parents, radical opinions of those to whom humanity has little left to thrive on, etc. You name it. We all know what it feels like to press “enter” after we’ve shared a piece of something that makes us a tad more vulnerable, yet very proud. And just a month ago, I felt it like never before after publicly disclosing that I have genital herpes.
Many people asked me why I opted for sharing it publicly as opposed to sharing it with my immediate circle. Those who know me closely know that I am (believe it or not!) a very private person, so it made even less sense to them that I would vent about private experiences in the public arena of social media. And while I got tremendous support from friends, family, co-workers and lots of others whom I didn’t think would even bother to just care, there was certainly a risk of running into hate from exs or blunt astonishment from people in my social network.
I am very grateful for the unexpected support I’ve received, but I was not searching for comfort. I was not looking for anyone to make me feel better about having genital herpes. Had I wanted that, I would have reached out to the handful of people whom I am confident could love me unconditionally through any iteration of who I am. What actually pushed me to openly talk about it was the realization that, whether they know it or not, it’s an issue that directly affects more than 45 million Americans. That’s roughly 1 in 6 American around you. And yet no one openly talks about it. It is a virus that at worst causes occasional outbreaks, 4-5 on average a year, which often look far, far less scary than what your Google image search results would show you. How do you think 90% of people who have it don’t know they have it*? Because it is very easy and frequent not to notice herpes sores! Yet it is perceived as a critical and terminal illness.
Below are a couple of stats I’ve pulled from a poll which included 503 U.S. adults with genital herpes and about 1,400 other adults who said they didn’t have genital herpes**.
- In a list of taboo topics, such as HIV, gonorrhea, mental illness, obesity, substance abuse, and cancer most participants — 64% of those without genital herpes and 56% of those with genital herpes — said they didn’t think any of those topics were taboo.
However, genital herpes was the top-ranked “taboo” topic.
- Participants ranked genital herpes second for social stigma, out of all sexually transmitted diseases (HIV took the top spot for STD stigma).
Here’s a digestible one sentence recap:
45 million Americans (or 1 in 6 American) have genital herpes, yet no one talks about it because most of us consider it a taboo topic despite being aware of the enormous stigma that is attached to it.
Doesn’t this sound deeply wrong and somehow unfair?
And here’s the blatant icing on the cake: unlike other stigmatized attributes that have been fought in the past such as homosexuality, mental illness and others, the players who are typically most prominent in creating or perpetuating the stigma are in this case actually demystifying it. In fact, media have long told the story of how the most challenging aspect of genital herpes is dealing with the stigma rather than the virus itself*** ; doctors are also unanimously talking about genital herpes as a skin condition that is far from being medically relevant, saying things like “Herpes is, in fact, the same disease as our cold sores and fever blisters around the mouth, but we don’t react emotionally the same way.”****
Still doesn’t sound deeply wrong and somehow unfair?
It did to me when I opened up on Facebook, and it still does. Media are saying it, doctors are saying it and I was myself craving to walk the talk that having genital herpes is no different than having any other viral physical discomfort, and as such that I felt no shame letting anyone know as I would if I have a cold, or a gastroenteritis.
Erving Goffman, one of the most influential sociologists in modern society defined stigma as “the phenomenon whereby an individual with an attribute which is deeply discredited by his/her society is rejected as a result of the attribute. Stigma is a process by which the reaction of others spoils normal identity”. By speaking up and making it clear that shame doesn’t come from having genital herpes itself, I was also making clear that it actually comes from people. By putting my story up for attention, I was also inviting anyone to confront their internal reaction and draw the consequential deductions as to why they rarely hear people talking about it. Hopefully, it’s also an encouragement to revise what they think they know about it in favor of what there actually is to know about it.
In a nutshell:
Genital herpes is something one should be careful about, but certainly not ashamed of!
Through the past and the present, the journey to understanding how stigma is formed, how it spreads and how it affects people is too fascinating to end quite yet. Genital herpes happens to be a stigma that is personally relevant to me, but it is only one of the many examples that encapsulate bigger truths about how we, humans, relate to each other. For curious minds, more to come!
Anyone, feel free to comment or DM me. I speak French and Italian in addition to English. I am not a doctor and won’t be able to answer specific medical questions but this is a two way conversation and I am very interested in learning from people who have experienced similar situations, whether they have HSV 2 or not. Also, for more HSV 2 related experiences, I have recently discovered Ella Dawson’s blog “my business is generally pleasurable” and would recommend anyone to visit it.
**(stat from webmd)
*** (The Atlantic, the overblown stigma)