Almost 20 years ago, Genital Herpes happened to us. In the 90s, “The Big H” was the subject of massive stigma created by the media in the 80s. It was even called “The New Scarlet Letter” in Time Magazine. People could barely talk about it with their doctors, much less friends and family. The isolation people felt, becoming social outcasts over a simple, very common virus was a real and devastating situation. People went into hiding from relationships and from public acknowledgement of HSV. Afraid of stigma and ostracism, they went anonymously onto the internet for solace, community, and support.
“Herpes” became the term synonymous with HSV in the genitals, while “Cold Sores” was the term for the same viruses on the face. This division exacerbated the stigma. The idea that having the virus “down there” was somehow dirty and wrong but that others who have the same thing on the mouth are perfectly normal and fine can be extremely difficult to deal with.
The very real and very dramatic shame felt by people diagnosed with a genital herpes infection caused some to give up on social interaction, love, and some even to commit suicide. Being told your love life is forever “damaged,” and that you were a bad person because you inadvertently got a virus, was a trauma that many could not handle. Getting herpes in the 90s sucked!
What has changed in the Herpes World since 1994?
There are more studies showing how common herpes infections are. There are more medications to help prevent outbreaks. There are new testing methods to give people answers and reassurance. There is progress towards a vaccine. There are more people than ever who have oral, genital, or both. HSV-2 is no longer the only herpes considered “genital herpes” it once was as transmission rates of HSV-1 to the genitals have risen to 30% and even 50% of genital herpes diagnoses. There are communities of people banding together to fight the stigma and shame associated with STIs.
Individual emotional progress and evolution to peace and acceptance. Herpes symptoms ease up over time. The outbreaks become fewer and less annoying. You find people in life who understand, who don’t care about your “HSV status,” who love you no matter what little virus you may have. You realize that the MAJORITY of people in the world have one or both herpes simplexes, and you feel less alone as a result. You find that you don’t care as much, because it’s not who you are – it’s almost like having a cold or the flu. Those viruses don’t define people, and herpes doesn’t define you, either.
The Stigma Stays the Same
And yet, so much has stayed the same. The social stigma remains the same. Stigma caused by a lack of knowledge about what HSV is and what it isn’t. Ignorance of the way HSV is transmitted. The fact that Genital Herpes is on the sexual organs. Ignorance of the fact that anyone can get herpes, that it has nothing to do with sexual morality or lack thereof, and that herpes is non-discriminatory about who it affects. Ignorance that “cold sores,” “fever blisters,” and “herpes” are the same viruses: herpes simplex virus 1 & 2. Hundreds of of millions of people have it, and yet the shame remains.
And the stigma seems even worse in 2014 because the internet, while providing more information and resources for support, also gives the ignorant and the haters a bigger, louder, more visible platform for their meanness and stupidity. The shame seems deeper, the hate seems more pervasive and omnipresent. In these days of bullying awareness and the anti-bully movement, people with herpes are still bullied daily by the media, by random strangers, and people they work and socialize with. It’s not easy to live in today’s world with herpes when most people around you think it’s one of the worst things ever.
So while we have much progress to be thankful for over the past 20 years, there is still much work to be done to bring the Herpes mindset out of the dark ages.