I’ve been told that when you Google my full name, the search engine will sometimes auto-populate “herpes” afterward. For a long time I found this hilarious. When I was diagnosed four years ago, no friendly faces popped up during my first “genital herpes” Google search. My goal in writing about herpes was to be the person I needed at 20 years old, petrified and confused in the nurse’s office at the school clinic.
I am not ashamed of having an STI—that my name became synonymous with herpes was a sign of how much success I had, starting a mainstream conversation about sexual health. But after being out of the work for as long as I have been, it becomes a source of frustration. Once the Internet decides who you are, you have little room to grow.
I don’t know if I’ve ever written the story from start to finish of how I became Internet famous for having an STI. There is the cute nutshell version I trot out at parties, but the full story is a bizarre series of events and choices that all made perfect sense at the time. If it’s alright with you, I’d like to skip the messy origin story of how I was diagnosed—if you want to hear about that, it’s well-trod territory elsewhere. Let’s dive right into the part where the digital world gets involved. That’s where the fun starts.
Way back in January 2015, I was an aspiring erotica author. Within seven months of graduating from college, I had lined up the publication of three short stories in small-press anthologies. I become a familiar face in the sex blogging community, set apart by my young age and willingness to piss off more established writers. I had a lot of opinions, especially when it came to the ethical responsibility of erotica to depict healthy, consensual sex.
Young, idealist Ella was particularly annoyed by a conversation about whether or not it was censorship for publishing houses to require condom usage in fiction. From my perspective, this was a stupid debate between a bunch of people without STIs bleating about free speech and propaganda. STIs were a part of my daily life, and condom usage—its presence or its absence—was always deliberate in my writing. Seeing safe sex as the enemy to good erotica struck me as uninspired at best and prejudiced at worst.
And so I bit my lip, sucked down a bunch of Diet Coke and wrote about my perspective as an author who also happened to live with genital herpes. After conversations with my parents, my boss and my ex-boyfriends about whether or not I should go public with my STI status, I hit publish.
It was a relief not to keep the secret anymore. My friends, family and several coworkers already knew that I was STI positive, and I’d talked about it openly during my final semester of college. But there was a different kind of relief in writing about it online without the shield of a pen name. Maybe a few thousand people read that first blog post. The Earth did not fall out from underneath me, and the only messages I got about it were positive and grateful. A few girls from Wesleyan, my old college, reached out to say thank you. They had herpes too, and they all thought they were the only one.
Once herpes became a word I wrote in public, the last dregs of shame I felt wore off. I decided to keep going. My sense of humor about herpes developed into fun anecdotes and riffs, little ways to own it and find meaning in this shitty thing that had happened to me. For this brief window of time after blogging but before freelancing, I felt free. In those three months I had privacy but few secrets. Importantly, I was not a public figure, a distinction already difficult to make in the age of social media.
In early April I was asked to write about herpes for Women’s Health. It felt like the natural progression of my blogging and I immediately agreed, figuring maybe 10,000 people would read it at most. I cranked out a draft at my kitchen table in Brooklyn, where I’d moved after TED hired me full-time. “Why I Love Telling People I Have Herpes” was my funny, honest fever dream, and also my first essay to be published anywhere for actual money: $75 (or maybe it was $50). I’ve since learned this was an embarrassingly low rate for such a personal story, not to mention that it went viral, but I’m getting ahead of myself.
The article went online on a Tuesday afternoon around 4PM. By the end of the day, dozens of strangers with herpes had sent messages to my personal Facebook account. By the morning, I had hundreds of messages in my inbox. A very nice reporter from The Washington Post reached out to me the next day for an interview. That article went up on Thursday morning, and from there it just exploded: Yahoo News, Huffington Post, Jezebel, The Independent in the UK and so on. The Daily Mail stole photos from my Facebook, cropping out my dad blowing out candles on his birthday cake. I did not read the comments. Even if I wanted to, there were too many.
The Facebook messages I received tipped over into the thousands, or at least that was how it felt at the time. I got emails, too. My tiny blog flooded with comments. I felt bombarded and overwhelmed, and I left work early to call my ex-boyfriend, crying from a curb in the West Village. This is what I wanted, he patiently reminded me, this was my goal. Sure, I thought, but not all at once. I’d achieved my lifelong goal of starting a conversation about herpes stigma— practically overnight—and it was fucking petrifying. It seemed childish and ungrateful to want it all to slow down, to want to be left alone. I was only receiving positive coverage, after all.
After my ex hung up, out of minutes in a Turkish hotel lobby, I called the guy I was actually dating. He told me to go to Five Guys for a burger and count each bite, savor the taste and focus on the present. I took a train to my mother’s and she drove me to a walk-in medical clinic, where I was diagnosed with a panic attack and given Xanax. As the pill settled into my bloodstream, I took a nap on the living room sofa, and the world was a little quieter when I woke up, at least for a weekend.
No one from Women’s Health reached out to me to ask if I was okay, or to offer advice, or even to tell me how the article was performing. I’m sure if I had asked my editor for help or information, she would have tried. I don’t harbor ill will toward the magazine that spring-boarded me into the limelight, but I was a prime example of the way digital publications use women’s confessional writing for clicks while exposing them to the volatile scrutiny of the Internet. I was just lucky that the interest I received wasn’t cruel—it easily could have gone the other way.
The following week I went on Huffington Post Live for my first ever (Internet) television interview. My hair looked terrible but I discovered I was good on camera, easily able to articulate my thoughts and fond of the adrenaline rush. In the next few weeks I would call into an African news broadcast, Skype into Girl Talk Live on MTV, do any number of podcasts, and write two more pieces for Women’s Health.
People kept telling me not to let any opportunity pass me by, that this was my shot and I couldn’t sleep on it. Other STI activists reached out to me, some offering kindness and support, some interested in capitalizing on my media coverage for their own ends. Even though my brain was screaming at me to slow down, that this was too much attention, I thought it would be cowardly to turn down opportunities.
I was acutely aware that I had been given a chance to change things, to fight the stigma that had hurt me so much. I wouldn’t just be letting myself down if I stopped: I’d be letting down an entire community of millions suffering in silence.
I read every email and message sent to me, missives full of pain and self-harm and panic. Women in their 50s who had been celibate for decades because they were convinced no one would ever love them. Teenage girls who had contracted the virus from their rapist wanting to know why they shouldn’t kill themselves. Men in their 30s who wanted to sue their cheating girlfriends for giving them herpes (those emails made me very uncomfortable). I read every single one until I felt like my heart would explode under the pressure of so much suffering.
I eventually closed down my email and cloaked most of my social media accounts after receiving too many messages from men who wanted to fuck me, love me or redeem me. But it wasn’t just the sexual harassment that made me go unreachable, if I’m being honest. It was the second hand trauma of a community that had so few people who understood it, and who saw me as something between a kindred spirit and a savior. I was only 22 and barely hanging on to my own stability.
In May I turned 23. Dating in New York City was a non-starter when I was constantly fielding interview requests about my vagina. I began writing weekly blog posts and counting traffic to my website, calling out publications and television shows that ran stigmatizing content about STIs. I tried to use my platform to boost the work of other brave writers with herpes, but I wasn’t a professional freelancer and stepped on toes more than once.
It was obvious to me, and probably to other activists in the community, that I was popular partially because I was a pretty white girl from Connecticut who worked for a famous media company. I was respectable, innocent looking, and didn’t make conservatives uncomfortable with my sob story. I had always used condoms and I worked for Planned Parenthood and my herpes story was easily marketable, simple, safe. That I’d been an erotica author who ran my college’s sexuality magazine was left out of the coverage.
I spent most of 2015 waffling between the kind of arrogance required to fight a cause as deeply entrenched as STI stigma, and crippling impostor syndrome that I didn’t deserve any of the praise. The truth was somewhere in the middle: I was hardworking, funny, talented and uniquely positioned to tackle the issue as a sex writer. I was also privileged: secure enough financially, socially and professionally to put my name and face to something so “shameful.” I was also putting myself at enormous risk. I was sacrificing more than I could ever know at the time.
That September I was the top trending story on BuzzFeed for a few hours, and my website received more traffic that day than it has on any day since. That BuzzFeed article became fodder for meme accounts on Instagram and ravenous Men’s Rights Activists on Twitter, but there was no real violence in the criticism yet. Just laughter, ha ha, herpes. I wrote scathing blog post after blog post, drained but exhilarated, thrilled that we were getting somewhere. Things were really changing.
But there was more to the story, to my story, and gradually I began to talk about my ex, the not-so-nice one, and all of the things he said when I was diagnosed. Gaining confidence as a writer—and as a young woman—allowed me to paint a fuller picture of my experiences with abuse, shame and stigma.
Telling this additional truth was as liberating as it was terrifying. People rarely talk about how abuse and STIs are woven together: the violations of consent, the emotional and/or physical violence that an STI makes acceptable. We rarely talk about how we think we deserve it because we are ruined, we are life-ruining, we should be grateful anyone will touch us in the first place. The idea of a book started to knock around in my mind, but the legalities of “he said she said” made me nervous. More than that, the idea of untangling that part of my brain, sticky with trauma, didn’t appeal to me. It still doesn’t.
In December, many of my colleagues at TED gave talks about personal projects they’d been working on after hours. I presented my herpes activism project, and I found myself absorbing the laughter and applause of some of the people I respect most in this world. Soon after that, the student organizers of TEDxConnecticutCollege invited me to give a talk about herpes stigma that spring.
I began talking to myself constantly, turning over lines and points and jokes under my breath until I had the structure of the talk perfected. Because I worked at TED, I knew how a single 18-minute talk could carry across the entire Internet. This was make or break, the golden opportunity. I could not, would not, fuck it up.
Around the same time, my mental health began to deteriorate considerably. I stopped leaving my bedroom, taking bizarre, unhealthy lengths to avoid my perfectly nice roommate. I became sensitive to noise. My mother took me to dinner at a nice restaurant and I had a panic attack, crying silently for no real reason. I also developed a temper I’d never had before, infuriated by bad tweets and strangers who over-shared their trauma with me in my inbox. These were all classic symptoms of an anxiety disorder.
If I was on the edge of a breakdown, the Internet decided to give me a shove. In April 2016, I started a hashtag with some friends for STI Awareness month: #ShoutYourStatus. That hashtag had maybe 24 hours of quiet beauty. A few young women disclosed their STI status for the first time and told us how proud they were to follow in our footsteps. But I was frustrated more people weren’t coming forward, frustrated that other people found it so difficult to shrug off the shame and admit to this incredibly common skin condition. A cruel, wounded part of my brain wondered: If I could do it, why couldn’t they?
Then I remembered why. I still don’t know how the Men’s Rights Activists, Alt-Right trolls and other Internet fuckwads found the hashtag, but they did. And they terrorized it. They terrorized us, harassed anyone who had been brave enough to talk about their status using the hashtag I’d partially created.
Quickly and viciously, our anti-stigma campaign was broken, distorted by men who exaggerated our message beyond the point of recognition. We were crazy feminists trying to glorify herpes, bragging about our degenerate behavior, sluts with no shame who needed to be punished and exterminated and branded and murdered. Men made YouTube videos to scream at us, scream about us, many with cloaked voices. One man, a proud InfoWars “journalist,” read excerpts from my blog and Twitter feed, spittle bursting from his lips. The video views numbered in the hundreds of thousands.
I’d experienced hatred before, heard it in the voice of someone I mistakenly thought might love me. But I’d never experienced hatred like this: hundreds of YouTube comments, thousands of tweets tearing my work to shreds for fun. I filled folder with all the slurs and threats sent to my Twitter and Facebook accounts.
I couldn’t take it. I was already so brittle and could do nothing but lock my accounts, log off and hide. One of the other women being attacked called me a coward for going dark online. I wondered if she was right but knew I didn’t have a choice. I had nothing left to give, and part of me wanted to die if for no other reason than it would all end. There is no fighting an Internet hate mob.
I still had to give my TEDx talk, though. While people called me a diseased cunt on the Internet, I woke up at 7AM on a Saturday to put on my makeup and drive to TEDxConnecticutCollege. For 16 adrenaline-fueled minutes, I was fully present in my body and I loved it. I left every ounce of strength I had on the stage, all of my personality and facts and practiced jokes. It was the best moment of my life up until that point. As soon as I walked off the stage, I knew I was done. I had nothing left to say about herpes.
I had a new story I needed to tell, a new cause I wanted to fight: the abuse I received for speaking out. I’d never been more aware of the price women and other marginalized folks regularly pay to have a voice on the Internet. I announced I would take the summer off from herpes activism to prioritize my mental health, and I knew even then it would be permanent.
I started taking Lexapro to treat my anxiety, after it occurred to me it was not normal to feel afraid in my own home. The medication worked, but I became numb. Numb and sad and distant from the core parts of myself. I was a writer who wasn’t writing, a sex writer who wasn’t fucking. A million other problems, as well, too tied to other people’s privacy to discuss here.
Parts of myself came back to life when a friend invited me to volunteer with Hillary Clinton’s presidential campaign. The fight became personal when the same men who attacked at me for #ShoutYourStatus began attacking her. Hillary gave a speech about the Alt-Right, calling out specific publications that reveled in attacking my work. I watched her read actual headlines from Breitbart and I cried. Deeply moved, I wrote an essay on Medium thanking her for recognizing the threat of online harassment that everyone else told me to ignore, don’t read the comments, just log offline. Through some miracle, Hillary Clinton read my essay and wrote me a letter to thank me for my work and my courage. And then she lost the election.
I spiraled out after that. Every day I relieved that night at the Javitz Center, relived the Internet bile and the brutal attention now suddenly gone. I had nothing left to say about herpes, but the online harassment that I wanted to fight? Their ringleader won.
The world was chaotic. While adjusting to the fucked up new normal, herpes felt so small in comparison—to the Muslim ban, to the transgender ban, to disappearing protections for sexual assault survivors on college campuses. I was a newly out queer woman in a suddenly dark, unfamiliar world. And so I retreated into the quiet of my own life, listened to NPR and played The Sims 4 and joined a gym. My boss, noticing the light had gone out of my eyes, gave me a week off and urged me to unplug for all of it. I spent the summer repairing my relationship with the Internet, making an effort to transition back from public figure to private citizen. I rebuilt my old habit of writing for myself—no clicks, no traffic, no retweets, no quotes for journalists.
I stopped taking Lexapro and looked up calls for erotica submissions, wondering when I’d abandoned that dream of writing a best-selling novel about women’s sexuality. An old flame from college stayed with me for a weekend and gave me something to write about. I felt the numbness lift, remembered what it was to want skin and words and city views and to turn 25. I didn’t want to be alone anymore and none of the people I’d already met would do. On a Thursday night, I met someone new, someone brilliant and sweet and generous, and writing about the small details of falling in love became the fun part again.
Meeting someone new is also an opportunity to meet yourself. I was surprised—and not at all surprised—by who I found: a young woman at a crossroads. Without even realizing, I had grown up and gotten angry and gotten even and broken down. I’d become a woman worth reading and following and loving, a woman who is more than a fuck or a hot take or a headline or a “u up?” text. Who is so much larger than a skin condition or a stigma. Who has so much else to say, but is afraid no one will want to hear it.
A few weeks ago, a man who identified himself as Mike left a pretty scathing comment on my blog. I haven’t stopped thinking about it since. Most of his attacks on my character were unfounded and bizarre: I have never done this work for money or to build my professional career. If anything, I did it in spite of the risk it posed to my job and my family and my personal life. I made maybe $250 total for the articles, most of which I published for nothing but exposure of my message.
I was paid nothing for the talks or the interviews or the videos. I have a tip jar where strangers can give me a few bucks if my writing helped them, but I set that up well after the viral attention died out. I was already an erotica author before I went viral, and I already worked at TED. I got here with the support of a generous community, yes, but mostly because of who I am. I will not undermine how much I earned this. I am the woman I needed when I was in pain and I will not apologize for that. But I’m more. I am more than this summary and I am more than any cause and I am more than some hero’s journey.
In some ways, though, Mike was right. He commented:
“When you began your journey, you had so much compassion, not just for those who struggled with herpes, but for those afraid of contracting it. You’ve let the hate you have received turn you into a more cynical and less compassionate activist, and that’s sad… It’s interesting because reading through your articles you can see the change happen gradually in your online personality going from an understanding, full of compassion woman with an STI trying very hard to reach out to others with the STI and others who do not have it to educate and lead, to someone who has become so infected by the hate she has received that its turned her into a cynical person whose words are now less filled with compassion and understanding and more laced with anger.” [sic]
I have lost much of the compassion I started this project with. After taking backlash alone for two and a half years, the empathetic curves of my personality are worn down to brittle edges. I have been stalked, harassed, threatened, outed as bisexual at work, and given the heavy responsibility of fighting on behalf of millions. And I lost touch with the pain and fear of the herpes community, because this work demanded steel nerves from me. I cannot weather the violence of the Alt-Right and remain a tender and generous leader, it’s just not possible.
No one can know what it’s like to go viral overnight unless they experience it firsthand. For the first hour it’s fun and gratifying, this mad rush of acknowledgement of who you are and what you’ve worked so hard to accomplish. But when journalists and fans and critics alike trample over your boundaries, it quickly turns frightening. Family photos on the Daily Mail, creepy “love” letters in the messages of your personal social media accounts, journalists emailing you for comment every time a celebrity STI scandal breaks. Being endlessly asked about the worst moments of your life. Being endlessly asked, “So are you seeing anyone?” and being afraid to say no because it might undermine your entire point.
You cannot prepare, you cannot anticipate, and you cannot make it stop. The moment you go viral, you lose all control over your story, your privacy and, in some ways, your future. I will forever be defined by an essay I wrote at 22, unless I do something even more spectacular by the Internet’s standards. I have no regrets, but I did not see any of this coming when I wrote that first draft. One essay in Women’s Health, and 48 hours later I am the face of a movement I didn’t sign up to lead alone.
When I say I’m done, it’s not because I don’t care anymore. It’s not because I don’t think this is a fight worth fighting. It’s not because I’m scared, either. I’m retiring because I have nothing left to give, and this movement needs new leaders with diverse experiences and different perspectives.
I haven’t had an outbreak in over two years, and I cannot speak to the more severe symptoms that many in the herpes community have. I fear I’ve talked over you in my attempt to destigmatize this virus, and for that I am deeply sorry. One person cannot and should not advocate for all of us. Please read the work of Sarit Luban, Britni de la Cretaz, Lachrista Greco and Emily Depasse, who have been there for me when I have not always been the friend and collaborator they deserved.
We also desperately need the voices of queer people, people of color, asexual people, survivors, kinksters, health professionals and STI negative partners in this fight. I am tired of straight or straight-passing white women defining what it’s like to live with herpes, and I include myself in that category. Even if I had anything left to say on the topic, it’s time for me to shut up. I want to listen to you. I want to share your stories, your concerns, your opinions, your work. This conversation doesn’t need me anymore. It needs all of you.
Please know that I am beyond grateful for everyone who has been supportive of me. I am indebted to this community for trusting me and sharing my work. Everything I’ve written about herpes will remain online as a resource, and I’m sure I will still have the occasional opinion about STI stigma. I hope I do not sound bitter or resentful, because I’m not. I am just the kind of exhausted that scares me sometimes. This is me saying goodbye to a chapter of my life that, in reality, came to a close a long time ago.
You might see my Google search results and think you know me and that’s fine, I’m not ashamed. But that’s the thing about living with herpes: it is only a small part of who we are. The goal has always been to not have this virus define us. I want that for myself as well.