• Breaking the stigma of genital herpes


    “I’m 98 percent positive it’s herpes. But don’t worry, you’re not alone. I know of a 70 year old woman who’d been widowed for 10 years and never had an outbreak until one day…”

    That’s when I stopped listening to my gynecologist trying to make me feel better as I’m legs-spread-baring-it-all on the examination table, bawling my eyes out. I was so far into denial about my first outbreak that I blamed my newly bought, unwashed pair of underwear I’d been wearing as the culprit. I must’ve had an allergic reaction, right? I mean, my boyfriend was clean. All my other boyfriends were clean. There’s no way I could have herpes, being the invincible 20-something year old woman that I am. But unfortunately, both my culture and blood test came back positive for HSV-1Herpes simplex virus 1.

    Every sexual encounter I ever had suddenly flashed before my eyes. How could I have been so irresponsible as to not put my wellbeing and safety before anything else? Isn’t that what my mom had been drilling into my head ever since I first found out what sex was?

    It all started a few months ago. Stress had been controlling me for quite some time due to constant fighting with my former boyfriend, getting back into the swing of being a working college student, and having to deal with my dysfunctional family. I started to notice rash-like symptoms that I immediately wrote off as either a rash or a yeast infection. It was totally manageable, no reason to get worried.

    A few days later I began to notice red bumps. That’s when I started doing Google searches and filling out symptom checkers online. The red bumps quickly turned into pimples. I tried retracing my steps — I bought new jeans and never washed them, and also bought new underwear too. That had to be it. But the more searches I did, the more I started to notice how eerily similar my symptoms were to those of herpes.I started freaking myself out with the images of herpes I found too.

    The pimples became so unbearable and painful that I almost called in sick to work. Finally, I broke down and called the gynecologist. I remembered telling my boyfriend about my symptoms and just praying it wasn’t an STD.

    Fast-forward to after my appointment… I was driving to my boyfriend’s apartment and having the worst mental breakdown I’d ever had and that he’d ever seen. I felt dirty, ugly and disgusting. My once normal-looking vulva had morphed into an unrecognizable monster that caused me pain and discomfort. I couldn’t even go to the bathroom without wincing or crying. I thought more about taking my own life that day more than any other day of my life. That sounds overly dramatic now, but that was my reality at the time.

    How could my boyfriend love me anymore, and what if I gave it to him (or vice versa)? After going to the bathroom, I’d run the hot water until it steamed and would wash my hands at least twice. Even after that, I’d immediately use hand sanitizer, just in case. To this day, my hands haven’t healed from that and are incredibly dry.

    My boyfriend had no symptoms, so I knew it wasn’t him. I jokingly blamed him when the red bumps started, but I didn’t believe it. I told him that if his blood test came back negative, he should just dump me and find someone who wouldn’t be such a hassle to have sex with. He reassured me that he loved me and still found me attractive no matter what. That eased my suffering.

    When I felt ugly, he reassured me that I was beautiful. But all of that changed when his blood tests came back negative, and the paranoia set in. How could someone go a whole year having sex with someone and just now have an outbreak unless, of course, they’d cheated? It seemed pretty logical, except for the fact that I’ve never cheated on anyone in my entire life. Especially not on the man I so desperately wanted to be with for the rest of my life. So, I knew I was one of those cases where you have it and it just lies dormant until one day it decides to make itself known. Honestly, I don’t blame him for thinking that way and there are no hard feelings. I would have thought the exact same thing.

    Once my outbreak finally cleared up, thanks to the viral suppressants my doctor prescribed, it was surprisingly easy to go back to being intimate with my boyfriend. If you’re wondering about whether I cried or not, the answer is “yes.” I finally started to feel human again.

    So, now I’m left to think about who actually gave me herpes. My morals are being challenged by not telling these people, but at the same time, I don’t really see it as my responsibility (I can already hear the negative comments for that one). It was their responsibility to get checked in the first place and it’s also their responsibility to get checked now. Especially, since I hear rumors about one of these guys is starting a family. I’m not friends with, or seeing, or even speaking to any of these guys anymore. I think I know who it was, but I have no proof, so I can’t point the finger.

    So, here I am now, HSV positive and single, and feeling stronger and wiser than ever. I have no support system other than my mother, with whom I’m very close, and am so relieved that I can tell her about my diagnosis, and also my therapist. Yes, I have my doctor, but she’s mostly there to give me the cold, hard facts. I wish so badly for a friend I could tell. Don’t get me wrong — I do have friends, but the way my closest friend jokes about STDs, I don’t see myself ever telling them; also, they’re gossips, and I’m sure everyone would know about it before I was ready.

    Why is it okay to joke about sexually transmitted diseases but not about other diseases? Is it because people associate STDs with being a slut? I think so.

    When I first found out I was positive, I went to lunch with a friend. We were splitting an appetizer and she said to me, “I hope you don’t mind that I’m a double-dipper. It’s not like I have herpes or anything.” I wish I knew what my face looked like when she said that to me, because I’m sure it was a combination of a forced smile and complete and utter embarrassment. I thought to myself, “How ignorant and uneducated are you?”

    I can’t talk too much though, because I’m sure I’ve made a handful of STD jokes when someone who actually has one was in earshot or even worse, said it right to their face. Whether or not people mean the jokes about herpes, I take it to heart 100 percent.

    Through many long nights on the internet, I’ve come to the conclusion that I’m not alone. I just finished reading a graphic novel by Ken Dalh called “Monsters,” and I encourage anyone who has an STD, or even someone who doesn’t, to read this book. It will open your eyes and make you feel so much better.

    Dahl talks a lot about dating — something I fear but also invite. I’m scared that someone will judge me, and if he does decide to stay with me, can he handle it? I’m not really sure how I would’ve reacted to someone telling me they had an STD, so I really couldn’t blame anyone for being hesitant.

    STDs are not something people talk about openly, and I really wish that would change. I don’t want the negative connotation associated with STDs anymore. I’ve become wiser and stronger since finding out my diagnosis, and I think we should all come together and share our stories, struggles and success. I want to start a chain reaction from reading people’s stories, sharing mine, and reading someone else’s. We could all learn a thing or two from each other. Let’s start to break the stigma together.

    (Editor’s note: “Rose Amore” is not the writer’s real name. She requested anonymity as a means to writing about a very sensitive and personal topic in the most genuine, honest way she could.)

    • hello, my name is amy ferris, and i have herpes…
      gorgeous piece.
      truly. thank you thank you thank you! THANK YOU. all my love

      • davidlacy

      • May 3, 2013 at 9:57 am
      • Reply

      Great piece “Rose.”

        • mike

        • September 10, 2018 at 7:56 am
        • Reply

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    • I dated a guy with herpes and never got it. Most people who have it let you know and work very hard not to pass it along.

      • Maya North

      • May 4, 2013 at 5:20 pm
      • Reply

      Hello, my name is Maya North, and I have had herpes since I was 16. It’s a strain that doesn’t cause bumps. My initial case caused ulcers the size of dimes and required I be hospitalized. I was down with it for a month and after that, I had a period that lasted two weeks and bled through multiple tampons and pads. Yeah, TMI.
      Since then, I’ve had a daughter, and a marriage of 28 years in June. My husband does not have it.
      Your call about the connection between stigmatizing this culture’s hatred of women’s sexuality is dead on. It also connects firmly with a hatred of sex in general and of women, being sexual or no.
      On a historical note, herpes came before AIDS. At first, herpes was the new plague and many of us who had it simply wanted to die. When AIDS came into the picture, a surprising number of people started to shrug and say “It’s only herpes. It’s not fatal.” And indeed, it is not. A very sweet life is possible after herpes and I have great confidence that you will have a great one.
      Big hugs and nose smoochies. (And also to my Amy Ferris Angel, who gets it as well as I do.) XXXOOO

      • Rose

      • May 5, 2013 at 8:55 pm
      • Reply

      I would just like to personally thank everyone for reading my article. I love all the positive feedback! I was really nervous that people wouldn’t respond nicely but I was mistaken..and I’m glad about that 🙂 It makes me so happy to hear about the wonderful lives you all have and it fills me with so much hope that I too can have a life like that.

      You guys are fantastic!

      • Boomer Chick

      • October 21, 2013 at 9:14 pm
      • Reply

      Here’s something to think about: You have your very first herpes outbreak when you’ve been married to the same guy since 1988, divorced, and haven’t had sex for the past 10 years.

      So the hot date you’re supposed to bravely admit that you’re HSV positive to MAY VERY WELL UNKNOWINGLY HAVE IT TOO, at the same time as he’s recoiling from you in disgust and horror. And to top it all off, you now have no control over whether the shameful little secret is revealed to your social community. Goodbye life as you’ve known it – over one cold sore.

      The doctor’s advice? “BY FAR the worst thing about HSV is the stigma. With one outbreak every 25 years (or longer), the chances of passing it on are remote. Use a condom and keep your mouth shut.”

      • Hope

      • December 3, 2013 at 2:21 pm
      • Reply

      I am sick off thinking about this. The world is full of people who sleep around and never use condoms. I am now single, after breaking up from a 10 year long monogamous relationship. So guess what happens to me ? I sleep with 2 guys I know and I get Herpes. Now that just seems ironic and unfair as I am still young and in search of a nice man. My day to day life at the moment is tainted by H,H, H. AND WHY ? Because of this stupid stupid STIGMA that the whole world has attached to a virus that gets caught so easily! When I think , actually most of the people in this world have it and don’t even know ! Most people probably are spreading it around without knowing .
      I am fed up of the stupid idea that I have to tell men before sex. If its not active its not there.
      I am guessing the two “friends” I happened to sleep with have no idea they have it , or maybe they just had a mouth cold sore !! Or maybe I had it for years but just surfaced because I was stressed ? We need to work together at this. Its like Chicken pox, its dormant unless it flares up. SO WHAT!!!!! Over it. …… Boomer chick I agree with you…… I REFUSE to spend the rest of my life worrying about admitting I have A MINOR SKIN CONDITION .

      • Rose

      • December 3, 2013 at 3:00 pm
      • Reply

      I thought a lot about what Boomer Chick’s doctor told her. Since being diagnosed, I’ve had sex with two different people. The first one I told and the second one I didn’t. These people we are hooking up with/in a relationship with could very well be hiding the fact that they too have an STD. I feel guilty about not telling the second one because they do have a right to know just like I had a right to know the person who infected me had it. I don’t want to be like that person. I don’t want to go around infecting people and not telling them – but the stigma changes my mind every time.

      I’ve been writing a second piece to the Breaking The Stigma story I have going on. I hope to get it out soon. It’s mostly about how uninformed people are about how the cold sores on your lips are the same thing I have on my lips – just not the same lips. At my work, I had two customers talking about it and I almost ALMOST said something but couldn’t bring myself to say anything. They could freely talk about their cold sores in front of a stranger but I can’t bring myself to. Do they even know that cold sores are herpes?

      • Aj

      • February 14, 2014 at 4:08 pm
      • Reply

      I’ve had HSV1 since i was a young child in primary school. I’ve had around 3 outbreaks in my whole life, the most recent was in 2011 on my forehead and as far as I know i haven’t spread it to my genitals (from what i have read, this is now shown to be possible).

      After reading an article delving into the science of HSV1 and HSV2 Ive been on a researching binge about the two virus’ and how each is perceived and stigmatized. In short, I’m amazed. This article about summed it up for me – http://www.herpes.com/hsv1-2.html

      I have to agree with the statement; “Use a condom and keep your mouth shut.” This seems to be the overall approach to Oral herpes, so why not with those below the belt? And if you just answered that question with “well, its different” you have bought into the stigma, and you need to look into the science.

      The whole stigma around HSV2 has nothing to do with the virus its self, and everything to do with sex. More importantly, how people (90% of global cultures) view sex. The two virus’ are the EXACT same for all intensive purposes, the only minor difference being where each “prefers” to live, one in a nerve near the ear, the other in the lower spine. So if the two are the same, why is one refereed to as “just a cold sore” and the other as “genital herpes.”

      I have never informed a partner about the fact i have HSV1, and no partner has ever informed me either. Why? because its considered to be trivial, a common, non life threatening short lived skin irritation much like a myriad of other conditions. Ive never told a partner i have athletes foot, a hemorrhoid, jock itch, diarrhea, a pimple on my butt, a wart on my toe and so on.

      So why then in the case of HSV2 is there this moral imperative to reveal that you have had cold sores on your privates? I can completely understand abstaining from sex while experiencing an outbreak (for a bunch of reasons) the same way you wouldn’t general go out and hook up with someone with a cold sore on your lip. Yet, i really don’t think it helps the stigma around cold sores below the belt to sit you partner down before you have sex and broach the subject like one would HIV. (a far more serious virus with life long and life threatening implications)

      In fact, explaining to a date or partner in the same way you would if you had HIV, helps propagate the stigma that cold sores on your privates is something to fear, to loathe and to be disgusted by. (The similarities in posts on HIV forums and Herpes forums are astounding)

      By treating it like a big deal, you are making it a big deal and buying into the stigma. I’ve read countless posts where time and time again people feel the need to justify that they acquired the virus through no fault of their own, a cheating partner, a lying partner, ONE sexual encounter, all of this feeds the stigma that only those who are dirty unfaithful sex fiends acquire the virus. As a society we continuously and unrelenting treat sex as something to be ashamed of, and if you ever catch an STI you are being punished for such dirty shameful behavior. Ever spent the night out passionately kissing some stranger only to come down with a cold or flu? Why isn’t there such a wretched stigma around that?

      I think its time humanity grew up. Sex is no different to eating, drinking, farting or sleeping. Its a biological necessity for a healthy mind and body. Drop the fear and loathing and embrace sex as a vital and joyous part of life. Engage in it safely and if you experience an STI, don’t be surprised, its sex, it can happen. I’m not saying don’t use protection, you should. What I’m saying even with safe sex, there is a risk we all must accept and acknowledge that we can obtain viral and bacterial infections when ever we engage in intimate behavior with another human, its all part of it, and protection isn’t 100%. Should any of us really be that surprised?

      For most people HSV rears its annoying head about as often as many other conditions do, pimples, warts, yeast infections, fungal infections, constipation and so on, and for those who have the genetic short end of the stick, and suffer more frequent and severe outbreaks, I feel sorry for you, the same way I do for those with chronic acne, eczema, warts, bad breath, dry eyes, hemorrhoids and so on. Life can be a lottery in this regard and we all have to play the hand we are dealt.

      Nonetheless, don’t give into the stigma, frequency does not change the scientific fact. Changing social opinion and stigma isn’t easy, but giving into it, and feeding it with HIV like guidelines definitely wont change it. Those of us with HSV should be the ones proactively pushing the science and pointing out the double standard at every oportunity. Our catch cry should be; “its just a cold sore” repeat it, memorize it, use it, shout it. Lips, chin, bum or balls, vagina or forehead, hands or penis, it is after all, just a cold sore.

      • Sherri

      • March 24, 2014 at 9:11 am
      • Reply

      Wow, I’m so glad I stumbled across this. Thank you, Rose, for bringing up a subject that I feel has pretty much destroyed my life. And it was great reading all the comments, especially AJ’s. AJ, you summed it up so well! It’s just a cold sore!

      I had a very bad case of chicken pox as a baby (it was everywhere, even in my genital area, my mom said) and I even came down with Shingles when I was 15 years old – almost unheard of. I contracted HSV2 from my boyfriend 7 years ago. We had only been dating about 6 months by then. He says he didn’t know he had it and apologized profusely (he subsequently got a test which showed he had it). We stayed together for 6 years after that and I never had another outbreak and don’t take any meds. And he never had an outbreak during that entire time. We broke up about a year ago, unfortunately.

      I almost forgot I had it until I starting seeing a guy I’ve known for over 20 years and have had sex with in the past. When things started getting heated and I knew he wanted to have sex, I felt that I should tell him that I have HSV2. I told him about the statistics, the fact that I’ve only had that one initial outbreak, the low likelihood of him getting it from me, etc. I even asked him if he had ever been tested because it’s not part of the standard STD screening tests, I later found out, and I suggested he get tested. He later said he did and he didn’t have it. But he almost immediately ceased all contact with me. We’ve kept in contact all that time – through his marriage and divorce, through my relationships, etc., because I thought we were friends. His response to me pretty much destroyed all faith I have in ever again having a normal sexual relationship. There’s another guy I’m getting close to now and I’m actually slowing things way down because I don’t know how (or if) I should tell him. I’d feel completely guilty if I didn’t – yes, the stigma has a hold of me. I want to be able to tell him and he understand it like AJ explained it, but I’m so scared to take that risk. I don’t want to go to a herpes dating site. I want to meet people on my own and not have to worry about this stigma.

      I have a trusted girlfriend that I told about this, but as open as we are about absolutely everything on this earth, it’s painfully obvious that she is uncomfortable talking about herpes. If I can’t talk to her, there’s absolutely no one I can – except others who have it, I guess. My own sister (who doesn’t know), made a comment recently. She said, “I’m glad I was never the type to screw around with a lot of guys and end up getting something like herpes.” And she had such a disgusting tone when she said it. All I could say is, “you don’t have to sleep around to get it. It only takes one encounter and it could be with someone you trust.” She kind of blew it off and went on to something else.

      I read an advice column on Facebook where people write in about relationship issues. Once a woman wrote in about an issue and mentioned that she has herpes. You should have seen the negative comments! It was so hard for me to read. One brave commenter, though, said “I’ve had herpes for 15 years, it’s no big deal, get over it people!”. I even wrote to that columnist (she never publishes anyone’s name) about the unfair stigma of herpes and the fact that people need to educate themselves asking her to post it, but I don’t think she ever did.

      But thank you all for this… I have a little hope now. Still torn as to if I should tell or not.

      • Esa kemet

      • July 28, 2014 at 3:02 am
      • Reply

      I try so hard to help people overcome the stigma, and I discover the stigma is a symptom of a co-disease. The jokes about herpes we see on sitcoms, the look on a person’s face when they discuss herpes, not knowing you have it, the images we’ve seen is the second disease, call it HSV-bully. The second virus is a teaser, it gets in your heart and mind causing fear, loneliness, bitterness, regret. For those that want to fight back, take a deep breath and share that you have herpes, doing this knocked that bully out for me. I faced my fear and won. At first I wasn’t selective about who I told. I placed the thought in my head that I was cautioning people then let it rip. Next I told family, my sister first. It didn’t go as planned cause my 13 year old niece over heard and we weren’t on good terms – oops. The whole idea for me was to fight the second virus – those sick feeling I wasn’t me anymore put there by the bully. 2

      • monica

      • June 5, 2015 at 8:55 pm
      • Reply

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      • July 3, 2015 at 3:53 pm
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      • lily

      • August 28, 2016 at 7:06 am
      • Reply

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