You’d think that once you’ve come out as having herpes on the CBC, as well as publishing a blog about having herpes that the work would be done. But, in reality, I think about having herpes all the time and worry that people will judge me, find me unattractive, think I’m diseased and therefore disgusting all the time, no matter how often I say it out loud.
Tonight I was at a gathering, and it was really fun and someone asked me what my ‘claim to fame’ was. I said it was telling the world, through the CBC that I have herpes. He was a lovely young man and his response was ” wow, you have herpes”. Since he’s an aware and wonderful person, he meant it like ‘great, so many people do but I never meet anyone who actually says it’ kind of way. But I clenched and felt judged. Which is my stuff, not his and I wonder if I’ll ever get over it. And then I wonder how people who keep herpes a secret manage to tell others or come out about having herpes when it feels like such a challenge to me, even after telling the whole world about it.
If you don’t have herpes, it’s likely you haven’t spent a whole lot of time thinking about where people get them. Yes there’s the mouth or the genitals, but there’s a whole lot more to consider than up or down. Some of the various sensitive bits are more sensitive than others, so when you get painful sores on the more sensitive bits, it’s much more uncomfortable than it might be otherwise. As someone with genital herpes, I get sores all over the place, from my butt cheeks to my labia to my mons. The first day with herpes usually means I won’t sleep very well and will feel generally cranky and under the weather. But if those sores are near my clit or my ass, one day of discomfort can stretch into three with the first two being so painful that I take tylenol and can’t ride my bike. I find this moving about business to be pretty strange and frustrating. Do others have the same experience? I was lead to believe when I contracted herpes that I would get sores in the same place, the place of first contact over and over, and I’ve read almost nothing that talks about this phenomenon. So, is it just me? Or do you also have a wide range of eruption sites? I love the term eruption sites, I think that was what the very first pamphlet I ever read called them..
I have genital and oral herpes—and I swear it saved my life. It sounds weird, I know, but it’s true.
I contracted herpes as an undergrad at Berkeley in the mid 80s. My boyfriend had a cold sore on his lips after the first sunny day of skiing. Since childhood he would get the same little blister after the first day on the slopes, so he didn’t think much of it. Both of us ignorant of the potential transmissions to genital areas, he went gloriously down on me.
If I hadn’t contracted herpes in college, I think I would have engaged in a lot of stupid, unsafe sex. I’d likely have contracted far more serious sexual transmitted conditions. Let’s be serious, I’d be… Dead.A week or so later my entire vulva erupted in horribly painful oozing sores. The nurse practitioner at the university health clinic coldly declared the diagnosis and bluntly dismissed me with a prescription slip. She was neither helpful nor comforting for this scared kid. Judgment hardened her face.
This initial outbreak lasted for a couple of painful weeks. For the next few years I suffered frequent and debilitating outbreaks. Why did I suffer so when others with the same disease got away with hardly an itch?
As I struggled with feeling contaminated and crippled during that first year, I was accepted into an excellent seminar on the mind-body connection in the Psychology department. As a coping mechanism of the grieving nerd, I decided to make herpes recurrences and triggers my research topic. Since this was before the Interweb, much less Google or medical information sites, it wasn’t uncommon for the average citizen to be totally in the dark about their medical conditions. Armed with treasured access to the university library, I combed through card catalog (how archaic!) databases on disparate current research. This research process, supported by a non-judgmental and brilliant professor, helped me to better understand the disease, manage outbreaks and, most importantly, normalized the situation for me.
But that’s not how herpes saved my life.
In college I claimed my sexual rights as an adult and became very sexually active and very experimental. I continued in my sexual growth as I moved from Berkeley to San Francisco. This was during the death-filled days of the AIDS pandemic. Having herpes was just so common that it just wasn’t a big deal under the shadow of HIV’s certain death sentence at the time.
My Herpes—yes, I saw the disease now as mine; the very bugs that would now live in my basal ganglion and share my body with me, as common as the bacteria in my stomach and mitochondria in each of my cells, were part of me now. My Herpes became the little annoyance that gave me the best reason/alibi/excuse ever to whip out a condom or dam or gloves with that new hottie I hooked up with. I’d smile and tell them I have herpes and talk about it as a common nuisance. I’d then tell them I was hot for them and don’t want to harm them so I’d like to use a condom. I figured that if anyone had an issue with hot latex sex with me because of My Herpes, they didn’t like me, the whole person. I wouldn’t want to hang out with such a shallow sob.
It never caused a problem and no one ran away. With each occasion I felt stronger, smarter and sexier.
If I hadn’t contracted herpes in college, I think I would have engaged in a lot of stupid, unsafe sex. I’d likely have contracted far more serious sexual transmitted conditions.
Let’s be serious, I’d be…
Herpes is most contagious right before an outbreak and continues to be transmittable through the outbreak. You may or may not know when you’re in a pre-outbreak stage. Some people feel a tingling sensation, others don’t.
If you want to know more about the real facts on herpes, the CDC’s website has some great info. One stat reads that 1 out of 5 sexually active adolescents and adults have herpes. That one may be you without even knowing it.
While not everyone with herpes experience recurrences, people with recurrent herpes usually have particular triggers or sets of triggers. These will vary from person to person. Obviously the college boyfriend was triggered by first exposure to bright sun light. Others are triggered by nuts, chocolate, stress, etc. You have to observe your own patterns.
My triggers turned out to be a combination of sleep deprivation, negative emotional stress, and a lowered immune system. So when I have an outbreak, I take that as my body’s alert system to get some sleep, consider the blessings in my life, pop some vitamin C and take care of myself. My Herpes behaves as my personal stress watch-bug.Herpes is a pain and a hassle—but in the dating world I turned it into an advantage to stay healthy, ethical and joyously sexual.
Yes, My Herpes saved my life.
Printed with permission.
As the owner of the Lisgar Street sex, health, and education shop, Venus Envy, Shelley Taylor has been spreading messages of sex-positivity and talking openly and educationally about all things sex-related for years. Recently, Taylor has given others the opportunity to speak up. With her blogspot, “passtheherpes” that she says is “really more of a community forum” Taylor is encouraging discussion on a sex-related topic that often remains hushed and taboo: herpes.
Passtheherpes gives people the opportunity to discuss their experiences “living with herpes, contracting herpes, avoiding herpes, their experience with a partner who has herpes, whatever!” By creating this blog Taylor says that “I want people to see herpes as something normal. I want people with herpes to feel like they are one of many, many people in the same position so they don’t feel isolated and shameful about having herpes.”
When Taylor found out at the age of 18 that she had genital herpes, she was devastated. “I felt dirty and disgraceful and ugly and I believed that it meant I would be alone for the rest of my life”, she writes. Even after getting over the initial shock and becoming calmer about her diagnosis, Taylor still had feelings of isolation and of being damaged and unattractive. Living with herpes was something that Taylor kept to herself except when she disclosed to a potential intimate partner. Several years later, when being interviewed by a paper about the reasons she opened Venus Envy, Taylor officially “outed” herself as a person living with the virus. She told the journalist that one of the reasons she opened the store was because she had contracted herpes when she was young and “wanted to promote safer sex as well as sex positivity to reduce the chances of transmission but also minimize the shame that can come with having herpes and other STIs”. After this act of openness, Taylor was amazed by the response. She states that her coming forward like she did “seemed to make people feel better about their status”. In starting her “forum”, Taylor is allowing this act of openness to be even more wide-reaching and hoping to combat the stigma that is so prevalent towards the virus.
According to the sexual health resource website sexualityandu.ca, Genital Herpes is a sexually-transmitted-infection (STI) that is transmitted through skin to skin contact. There are two types of the Herpes Simplex Virus (HSV). HSV-1 typically results in cold sores, and HSV-2 typically affects the genitals. However, transmission can still occur from mouth to genitals and from genitals to mouth. The result of the infection can vary from person to person. Some people with genital herpes have no symptoms, while others may experience outbreaks of small blisters in the genital or anal area varying in severity and frequency. These blisters can often burst and lead to painful sores. In very rare cases, herpes can pose serious health risks. This risk is heightened for infants who acquire the virus during childbirth. However, in most cases “HSV-1 and HSV-2 are generally not considered a serious health risk”.
Although physical health risks may be limited, herpes can have a tremendous psychological affect on those infected. Even for Taylor whose work has helped fight the stigma associated with this virus, the stress is still there. She writes, “I still feel worried each time I put out into the world that I have herpes. I almost passed out before going live on the CBC to tell all of middle Canada about having herpes. It was very scary. So clearly I haven’t gotten entirely past the feelings of shame or embarrassment yet”. Taylor says that much of the stigma surrounding herpes stems from the fact that the virus is usually spread through sexual contact. “Consider that there’s almost no shame in having the exact same virus on your face, but when it’s on your genitals, it’s something completely different in how we relate to our bodies and how others relate to us.”
Originally printed in the Leveller, a Carleton University Publication
I hadn’t heard of this website before, but it covers a really broad range of topics about herpes. From treatment information to health studies to legal issues, this blog is an interesting collection of stories. It seems to be connected with a site that’s selling a herpes ‘cure’ and perhaps some other stuff, but you can ignore that and just read the news stories, I suppose. I can’t vouch for the validity of some of what’s there, but it’s worth a look at least.
This site seems to be both news stories and a discussion group, but the discussions seem to be interrupted regularly by people promoting their herpes dating sites:
And finally, a solid collection of articles, but not updated all that frequently: