We hear illness narratives all the time. We invite cancer survivors onto talk shows to tell their stories. We read memoirs written by people struggling with mental illness or disability. These narratives are told for a number of reasons: to help one make sense of his/her/hir illness; to assert control over one’s illness; to transform one’s identity; to justify one’s medical and life decisions; and perhaps most importantly, to build community. Telling our stories of illness helps us relate to one another – to know that we aren’t going through this alone. Because they provide such an important function in our society (support, hope, community, love, strength, etc) these types of illness narratives are an increasingly popular vehicle for discourse about health and illness in popular culture. But what about people with herpes? We don’t hear their stories in the mainstream media.
If you want to hear stories about what it’s like to have genital herpes, you need to go online. Due to the extreme stigma associated with the STI, the “community” of people living with genital herpes exists only on the internet, where they can connect anonymously through blogs and online forums. There are even dating sites where people with herpes and other STIs can find matches who understand. It is not hard to imagine that before the internet, genital herpes was a much more isolating experience.
When you have genital herpes, you have the same reasons for sharing your story as anyone else. Telling your story helps you make sense of what happened (“why me?”); deal with the loss of control over your body; your transforming identity (becoming a stigmatized/tainted member of society); the decisions you now have to make, like telling a sexual partner; and most importantly, it helps create a community where you can find support and connect with others going through the same thing.
There are two distinctive types of stories people tell about having herpes – those that internalize the horrible stigma surrounding the disease, and those that reject it. The first type that internalize stigma (I am dirty, I am a whore, I am a monster) are pretty upsetting. When people believe all that negative stigma about people with herpes to be true about themselves, their experience sounds unbearable. These stories use the same metaphors we talked about earlier. An online forum user wrote: “ I woke up today feeling so empty, alone, rejected & depressed!! … I’m not angry at the person who gave it to me, yet. It’s[sic] my fault.” Another wrote: “ This thing has taken me away from myself… all I’ve been thinking about is being gone. Dead … I just don’t see how I’ll ever be happy again.” These stories are heartbreaking and make it sound like getting genital herpes is the end of the world. And isn’t that what we are all so afraid of?
The good news is that the majority of stories like this come from people who have been recently diagnosed with genital herpes. Narratives from people who have had the virus for a number of years, however, are much more positive. Instead of internalizing all the stigmas and metaphors about herpes, they reject them. They tell their stories with the goal of helping others feel okay about having herpes. These stories are there – just like stories about surviving cancer – to help folks realize that herpes doesn’t have to be the end of your life. In fact, it’s really not that big a deal at all!
These stories often begin by remembering what it was like when they first found out they had genital herpes. A forum user wrote: “ I remember the devastation. I thought it was the end of the world; I quit eating and lost about 5 pounds in two days. I thought I was the most disgusting, gross, infected, worthless piece of trash in the world.” But then he goes on to explain how, with time, he came to regard herpes as something totally manageable: “ I came to realize that, as far as living with it, it’s just like dandruff, psoriasis or some other skin disease for the most part; it breaks out, I get uncomfortable, and it heals in time …. It’s really not a big deal once you learn how to handle it.” Actually, a lot of people living with genital herpes think of it like a skin condition. Another forum user wrote: “This skin condition (personally I really see it as that) is only as big and frightening as you allow it to be.”
In these narratives, people with herpes reject the idea that they are sluts or “dirty.” A forum user made this pretty clear when she wrote “People who take a shower are clean. Those who have herpes are NOT DIRTY.” In this interview on the Tyra Banks Show (a rare case where someone with herpes shared her story on TV!), Michelle Landry made it clear that she wasn’t any of those negative stereotypes.
Many people share their stories as a conscious effort to encourage those who do not yet
have an STI to protect themselves and to provide support for those who do. On Sex Etc., Holly Becker wrote: “So, think about my story when you’re having sex. Ask your future partners the hard questions, too … And think about my story when you hear that someone has an STD. Most likely, if they have one, they are scared and lonely, and could use a friend.” An anonymous message post reads: “I hope my words and experience with this can help others learn to be OK with themselves after being diagnosed with this. Life does go on and you can be happy!!!” More great stories like this can be found at the ASHA Herpes Resource Center.
Some people find the experience of opening up and talking about having herpes as liberating. In an interview about his book Monsters, Ken Dahl said, “ I’ ve got nothing to lose now, and it’ s really liberating. Now I kind of want to do it for everything else in life, because no one can make fun of me. What can they say that I haven’ t already said?” Christopher Scipio, author of Making Peace With Herpes (2006), has become an advocate for this:
Instead of being imprisoned by this disease, I decided to free myself. I am nolonger afraid of saying the word and letting people know that I am one of “ them.”I have herpes, but herpes doesn’ t have me … I am at peace with my place in this world, and I have discovered the joy of encouraging others to liberate themselves from the stigma.
If you try, you can find plenty of stories about having herpes that really convince you that hey, this isn’t the end of the world. Thanks to condoms and suppressive therapy (drugs like Valtrex), you can still have a healthy sex life with herpes. The drugs also help suppress breakouts and make them less severe when they do happen. Herpes will not kill you, and doesn’t really have any serious complications or health risks (except you might need to get a C-section to avoid passing it to your baby). All in all, it’s a relatively mild condition that is totally manageable.
Sounds to me like dealing with the stigma and shame of herpes is a lot worse than dealing with the disease itself. Is it really worth the agony? We’re going to hash it out in Part 6, the conclusion of this series on genital herpes. Stay tuned!
For more in the series: