Why I Shouldn’t Be the Only Face of Herpes

So this was my Friday afternoon...
So this was my Friday afternoon…

A crazy thing happened last week: I became Internet famous.

Yeah, I know, that’s a gross thing to say about yourself. But it’s kind of the truth—within 48 hours I went from being a blogger in my relatively quiet corner of the Internet (other than that one time I infuriated the entire Outlander fandom by calling out domestic violence and my website hits went through the roof) to having to Google myself every 10 minutes to see where my name had popped up next. I seem beloved in Australia. My Twitter follower count finally passed 1,000. I made the front page of Digg.

Let me rewind. On Tuesday, April 14, my essay for Women’s Health Magazine about dating with herpes went online. The title, “Why I Love Telling People I Have Herpes,” is admittedly clicky, and I intended it to be. I work in social media, so I know what catches the eye. Within the next few hours I received a couple dozen messages on Facebook from herpes-positive strangers who wanted to say thank you and share their stories with me. Although honored by their response, I wasn’t surprised to be getting some Internet love: personal narratives about living with herpes are rare in mainstream publications (and even in fringe, independent ones), and it’s even less common for a piece to not be published anonymously. I was delighted but unsurprised to see people liked the article, and that other folks living with herpes found it meaningful.

What happened next was what surprised me. There was an interview with the Washington Post, which resulted in an article, which was then aggregated internationally. A post on Jezebel. An article on the Daily Mail. Shout-outs from Feministing, Dame, and Autostraddle. A follow-up piece in The Independent. Coverage in major media publications around the world. And, my personal favorite, a hilarious write-up from a right-wing website that called me a “liberal whack job.” Hey, if the shoe fits.

With each piece that went online, there were more messages of support and gratitude. More stories, some heart-warming, some steeped in pain and isolation. I had given thousands of strangers around the globe permission to be honest, to tell me something many of them hadn’t even told their families: I have herpes, and I am scared, and thank you for making this a little less scary. One of my favorite messages from a stranger on Facebook reads, “You are making so many people, including myself, feel human again. Thank you.” The response I have gotten is overwhelming, satisfying, reassuring, and deeply moving. I am floored and very touched by the kindness the Internet has shown me, and the international receptiveness to the conversation about STI stigma I nudged along. Clearly we’re ready to break the silence surrounding sexual health and finally talk about herpes, without judgment and without shame.

But watching my story, my face, and my “too ridiculous to make this shit up” headlines (“Why does this woman tell everyone she has genital herpes?”) proliferate across the media was… I have to be honest, terrifying. Agonizing, actually. With every aggregation of my story to a new site, it morphed a little more. The Daily Mail pulled photos of me off my Facebook page, cropping my dad out of a picture of us taken on his birthday. The Internet treated me with kid gloves and I haven’t faced any significant backlash, a fact I am so, so grateful for. But I was no longer in control of my narrative, something that means the world to me, and I hadn’t mentally prepared myself for that possibility. Maybe I should have, but who could predict one article turning into this?

On the Thursday I went viral (pun always intended), I found myself sitting on a curb in the Village, making an SOS call to a friend. I explained to him that I was scared, so scared, and I didn’t understand why. I was having trouble breathing because there was a golf ball sitting in my throat, and my racing heart roared louder than passing cabs. I had this terrible fear that the Internet was going to (finally) notice the fact that I write erotica, and that I went to the horniest school in the United States (sup, Wesleyan?), and that I regularly make jokes about having bros in different area codes on my Twitter. It was catastrophizing rooted in rational worry, and I was having a panic attack.

This is what I have wanted for so long, I said. It is just so… soon. I’m only 22 years old.

“Hey, it could be worse,” my friend said, his voice full of wry, familiar warmth even through the crackly connection. “You could have herpes. That would suck.” I laughed so hard I nearly cried, and then I did cry, simply overwhelmed.

The next day I met my new friend Xanax, and while my physical symptoms of anxiety softened I still worried something was about to go seriously wrong. After a solid week I finally figured out why: I don’t want to disappoint anyone.

I’m human, and that’s the point. I’m a fully-fledged, flawed, multi-faceted human who writes erotica and grew up on social media and calls her mom crying at least once a month. My skeletons aren’t in my closet; they’re littered across Tumblr as evidence that being a teenager in a conservative town sucked, and my heart has been broken and healed time and time again. I cannot promise you a perfect, shiny herpes heroine fresh from the box. But who needs that anyway? We need real people who battle with shame and mistakes to make us all feel less alone. We need real people to normalize and explore the experience of living, dating, fucking and falling in love with herpes. We need to not only put a face on herpes, but many faces, and honest ones at that.

So hi. Hello there. My name is Ella and I will keep telling my story, because apparently the media has decided my voice is a valid one, but I don’t want to be the only voice heard. There have been so many tireless activists fighting herpes stigma for much longer than I have, and I hope to spotlight and collaborate with them in the upcoming months. When I redesign my website this summer, I hope to have an awesome page of resources for topics I’m less well versed in (I’m the wrong person to ask about treating outbreaks, for example, because I get them so rarely). Feel free to leave recommendations and links in the comments below.

Thank you, all of you. Thank you to the herpsters, to the sex+ community, to my friends, and to the journalists willing to boost this issue. I read every message I get, and I’m so excited about what the future holds. But I’m human, and I can’t promise not to let you down. Thankfully I’m not in this alone.

Watch me talk about herpes stigma on HuffPost Live here.

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Ella Dawson is a sex and culture critic and a digital strategist. She drinks too much Diet Coke.

15 thoughts on “Why I Shouldn’t Be the Only Face of Herpes

  1. Hi! I am so glad I found you 🙂 I have been living with Herpes for 20+ years now. When I first found out I felt like my whole world came crashing down. It was my first sexual experience with my boyfriend too. Well I have learned to not let it dictate my life. Herpes does not define me! I have a son and I did not pass it on to him even though I had a vaginal birth. I control my outbreaks by taking medication on a daily basis. Herpes has a big stigma and now I have to find a way to tell my son as he has started talking negatively about people who have herpes. I want him to know that all the negative stigma he reads and hears is from people who are uneducated. To everyone who has herpes, stay positive as it is not the end of the world. Don’t let it control you, control it!

  2. I just stumbled upon your articles as I attempt to cope with the diagnosis. Depression, anxiety, and then herpes on top… suicide has been the only thing on my mind since the diagnosis and I have never even gotten an outbreak yet (blood test confirmed. Not sure when the first outbreak will be). I Google search “living with herpes” finding you and this blog, you, someone who doesn’t personally know me is the only way I’m comfortable with even talking about it. I feel as though my life is over … Well actually it may be if I ever decide to tell anyone in my life. I can’t even find the words to say to you that accurately describes your bravery.

  3. Hello everyone! I cannot believe I stumbled upon this tonight, as I quite literally just got off the phone with my best friend after having another anxiety and sadness stricken episode of my situation after a disclosure talk. I am a SURVIVOR (trying to keep it positive) of a year and a half and am so grateful to have found this site…Ella you are an incredible young lady for going public…something I wish I had the courage to do as I know how many people it could help. You should also check out http://www.pinktent.com for a site that helped me a LOT when I was first diagnosed. Adrial is my other favorite face of herpes and I am so happy to hear that you are doing a collaboration with him 🙂 As a college girl in your shoes, with a similar situation, THANK YOU.

  4. I have lived with this for 9+ years and after reading this… I have hope. It eats away at me. I feel.. not “normal” like I should be walking around with a huge H on me. I now feel… at ease.

  5. The year was 1969! Drug, sex, rock and roll…and a shitload of STD’s. No one knew what this stuff was. I was very ill with fever, lesions, a hell of a lot of pain. My mother took me to an ER. They put me on a gurney spread eagle and peered between my seventeen year old thighs. They didn’t know what this was. They were stumped. Multiple health care practitioners and students (gotta love a teaching university emergency room) gave their opinions. The best one was that I had a bad case of acne “down there”. They sent me home confused, embarrassed, and in shame.
    The young man I had sex with came to visit me while I was sick and he told me he had these little bumps on his dick. I was not shocked. He had just returned from a tour in Viet Nam. I believe this is a casualty of war.
    Time doesn’t necessarily heal all. I went to a dermatologist who put me through a series of ultraviolet light therapy. Ha, viruses are living organisms hell-bent on staying alive. This would be my partner for life. So, I live with it. Acyclovir has helped.
    I had two children. The doctor’s told me I would pass it to them during childbirth. I had two C-sections. I never gave it to my children. I never gave it to my husband. I have kept it to myself. My husband and children always have known I deal with episodes.
    Many times things happen so you can help others. My daughter became ill and spoke openly with me about what was happening. She had had oral sex with her boyfriend. He had the start of cold sores on his lip. Yep, she was infected and hurting. Our doctor was knowledgeable and got her on acyclovir immediately. Because she was able to hit it with the acyclovir quickly and it was type 1, she never had a recurrence. She still lives as if it could come back. She is honest about it.
    There are so many ways this virus has effected my life. It changed my spontaneity, my personal hygiene, my openness with new acquaintances, subtle ways of self-esteem…
    You are appreciated. Thank you for using your voice to open a door. We are not alone.

  6. I saw you on HuffPo and I wanted to say thank you. I was also diagnosed about 2 years ago in February. I became very depressed and thought my life was over. In the last 2 years I have learned a lot, mostly that it’s more common than people realize. Please continue to do what you’re doing as it will help everyone with herpes feel just that much better about themselves as it becomes more accepted and less shameful.

  7. Hello hello! I can’t believe I stumbled upon your interview (which was insanely awesome). I have questions!? I couldn’t DirectMessage you on Twitter sadly, but it got me to your blog so that’s good. Is there a place I can email you? I will be brief as I know you’re quite busy 🙂 Thanks for doing what you do, so much admiration & respect.

  8. Herpes, the infection, is not new – but the stigma is. Project Accept, an advocacy group, asserts on its website: “Herpes was merely a cold sore in an unusual place until the 1970s.”
    Being positive is always a nice method to fight against herpes, however, finding a partner similar to you can totally solve this problem, and the best way to have a partner is joining a club according to the psychologist, and here recommend http://herpesdatinggroups.com, there are a great deal of real and active members to have a talk or even a date, and the key point, there is the most strict privacy policy and it will protect your privacy very well!

    1. Which psychologist are you referring to?

      The best way to have a partner is to learn about what you have and accept it as not a big deal. Don’t limit whom you date to fellow Herpsters. There is nothing wrong with having a very common, mostly harmless virus so don’t let it stop you from being with whomever you want.

      There are many h dating websites out there, but they cannot guarantee that you will find a quality partner.

    2. There is not a strict policy on those sites despite what they say – I was outed by a member on the internet after I broke up with them. When I called to file a complaint with the website they never returned my messages (phone and email) and did not take the member off the site.

    1. Hi John! I personally don’t use chat forums often but I’d love to include the site in my resources list when it goes online. Thank you for reaching out and for reading!

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