How I Became Internet Famous for Having Herpes — and Why I’m Retiring

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.

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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.

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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.

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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.

Talk at office

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.

TEDx talk

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.

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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.

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Ella Dawson is a rowdy millennial who cares too much about The Bachelor. Her passions include sexual health and education, feminist erotica and social media.

15 thoughts on “How I Became Internet Famous for Having Herpes — and Why I’m Retiring

  1. Ella you’ve done well! You got the story out, you rode the chaos that ensued – from what is a really difficult topic to discuss – & you worked out that you’re more than all this. Some people never work that out before they die & you’re not 25 yet! You didn’t let is swallow you up & you’re moving on. Well done! And enjoy what you do next. X

  2. Since I am the Mike you referenced and since you some of the truths I was telling you actually got through to you, I felt it necessary to post to you one more time in congratulations on your self reflection and the choice you have come too as a result of it. I takes courage to admit how you let your activism go sour due to the hate you have both received and engaged in on your twitter from time to time to change you and your focus. It also takes courage to admit, that someone like me, whom you desperately do not want to agree with on anything because, more than any other reasons, I am a man, and I do not have an STI. So bravo and kudos to you on that.

    Now the real question becomes…..What do you do now? Oh and just to clarify, you have described yourself as an erotic author, and you have also talked several times about writing a book. So I’m sure eventually you will end up writing an erotic novel, even if you haven’t done so yet. Whether it will be popular or not, I let you know if and when it end ups on the New York Times Best seller list. Back to the question at hand though. What now? You have goals and projects you want to do, no doubt. You say you want to tackle the subject of the consequences, in terms of harassment, that activism has brought upon you, but are you really done with the issue that gave you the key to that first door of recognition for you? I wonder.

    In order for you to truly be done with herpes activism, especially since you did not achieve the goal of ending the stigma. If anything in a lot of ways, thanks to the alt right the stigma is worse now than when you began your activism. In order for you to be done with that part of your career there is still 2 things you need to do. 1:) You need to acknowledge how it is your herpes and your subsequent activism about it that opened the doors for you that really got you noticed and your career started. You say you worked for Ted Talks before your herpes work began, but lets not kid anyone here Ella, you really didn’t stand out in the crowd until you put your struggle out there. 2:) How can you be done with your herpes activism, when you now want to talk about all of the negatives that your herpes activism brought you? Talking about the consequences of a subject still necessitates that you discuss the subject itself.

    If you want to actually be done with herpes activism, which I think does a serious disservice to those who supported you and your herpes activism and still do, aren’t you in fact turning your back on them? Basically you are saying to them that because some people attacked you online, made your mental health struggle even worse, and subjected you to harassment, that standing up for their cause, which was also yours, isn’t worth it to you anymore. You are saying they aren’t worth it to you anymore. How many other activists do you think went through harassment for their causes? Do you think you are the first? A quick look through the history books would show you differently. If women would have quit fighting for the right to vote because men treated them like crap and harassed, bullied, and hurt them, they wouldn’t have that right today. If The south had won the civil war, African Americans might never have won their freedom from slavery, and 100 years later if people like Martin Luther King JR, Malcolm X, and others had not been willing to lay down their lives for their cause we wouldn’t have any form of civil rights in this country at all, even though because of our current bigot in chief in the oval office we are almost there again now anyway. My point is your suffering for your cause does not in anyway compare to those who suffered for causes before you. I agree you are a strong woman. It takes one to stand up and fight as you have. But you are still barely an adult and already as soon as life gets too hard for you, you want to back off your convictions and hide.
    If you want to fight the hate you got for standing up to end herpes stigma then fine do it, but don’t turn your back on herpes work just because you cannot handle the price you must pay in order to do it. If you run from the cause that got you the success you enjoy now, and then wish to complain about the price you paid in terms of backlash you got from it, then how is anyone supposed to take you seriously. What would have happened if Rosa Parks would have happily gave up her seat on the bus, all because she did not want to face the backlash, and then turn around and try to fight that same backlash later? If you cannot stay true to your cause and fight the backlash, then you really shouldn’t be an activist or advocate for positive change at all because all you are doing is feeding the very cycle you say you wish to end. Activists do not walk away when things get tough, they stay, they stand, they fight. That’s what they do, and that’s who they are. So Ella Dawson, who are you? What do you do?

    1. Edit to add, since your blog here does not have an edit post function. Forgive the typos. It seems my grammar check was not as thorough as it should have been when writing this. However, with that being said the main points are still valid and typed as I meant them.

    2. Blimey, Mike – give the woman a break! She’s really put herself out here and I respect her limits. It’s important that we understand the huge price that women pay for activism when there are alt-right trolls out there (as well as well-meaning men who prod and prod).

      Ella – big thanks. As a bisexual woman with bipolar and herpes, I get where you are coming from. I feel like I am drawn to every taboo going, so it’s great to hear from people who have owned these, but salutary to understand the price paid.

      I’m looking forward to hearing about your erotica novel, however long it takes, does let those of us on your subscriber list know. In the meantime, Blessed Be!

  3. Thank you, Ella, for what you did. You have paid far too high a price for doing this, which was totally undeserved. You have an absolute right to retire from your activism and I wish you much happiness in your future. x

  4. Thank you for everything you’ve done. You gave me hope and something to hold on to during diagnosis and I’m sure you did that for a lot of people. That doesn’t make up for all of the trauma you went through, but I think it’s safe to say you gave us all a voice and someone to look up to, so I am forever grateful for that.

  5. Mens Rights Activists are horrible– totally get that…don’t ever comment on their pages…or visit the lead man’s abode…I will not post that page name as I refuse to even give any possibility of a random visit to fill any ego needs of that group… WHoohoo– on taking back your privacy. Retire. Perhaps choose to be reborn, someday- a lovely opportunity many of us should take, but don’t? or won’t? Best wishes. and Thank you. You are wonderful in so many ways. Cheers- Ret

  6. Interesting story! I had read that before Herpes became “medicalized” it was just a common issue that lots of people have, and of course, lots of people have it and it really isn’t a major deal. It’s too bad there’s a stigma around any disorder, really, STI or not — they’re pretty easy to get.

  7. I just came across your blog today on Twitter. I must have been living under a rock for the past few years because I have never heard of you or your movement, let alone the negativity and backlash you have endured.

    I think that it’s very brave of you to end your journey in the fight against the stigma around herpes. Our lives are not defined by one thing, just like you and I as humans are not defined by this virus.

    I wholeheartedly think that in order to truly end this stigma, the education system needs to change. I don’t know about your school, but when I took sex ed, it was all about abstinence. we weren’t educated on birth control or viruses or infections, we were just taught that HIV, HPV, HSV, chlamydia, etc. were bad and disgusting.

    I came across a facebook post the other day, it was a video about a girl showing a makeup tutorial on how she covered up her cold sore, and all the comments were seriously repulsive – the fact that I went to school and interacted with people who felt that way about a virus that nearly 80% of the population has disgusted me.

    But it’s all just ignorance. All the blacklash and hate from every corner of the internet are full of ignorant, uneducated people. But I know that your bravery and courage to be a voice for those of us who felt shame and deserved to be unloved has brought an unmeasurable amount of respect in my eyes and the rest of us living with HSV.

    Since this is the end of your time as a voice for Herpes, I want to end my comment with this – I think that it’s great that you found that spark inside you again, I think it’s so wonderful that you found someone to love and have felt inspired to write your book. I hope that you get it published soon, I can’t wait to read it.

    Keep doing you, boo.
    xoxo

    Katelyn

  8. Thank you for your hard work. And thank you for your generosity with yourself, in both senses: sharing your essence with us, as well as trying to be generous to yourself via self-care. I have found your voice immeasurably helpful when educating others or guiding their healing, and you voice has also soothed my heart on days when the uninvited guest living in my body invites the stigma inside, and I fall into feeling blue. I can’t wait to see what you come up with next, and how you use your space and bright beacon to bring in the voices you know need to be heard. There’s a whole world outside social media, and outside the national boundaries you find yourself in, and you have friends everywhere. Mi casa es su casa, mi sofá es su sofá. Resistance is real and everywhere. Thank you for doing what you need to do to be strong, because we need you, and because you need you too.

  9. Hi Ella. I’ve been following and admiring your courage since I contracted HSV-2 for my 40th birthday. Woohoo! Hell of a way to face the big 40. But you know what? Life goes on. I often think that it isn’t fair because I’ve only been with 11 men, but what really isn’t fair is the stigma. I have a BS from a prestigious school, gifted program since 4th grade, 150 IQ, killer job that allows me to live alone in a big home with a big yard and ve comfortable. Yet, if anyone knew….instastigma. I wish you all of the best in your retirement. I hope that the work you’ve done will lead to more knowledge of the reality with your generation than it did mine (I’m 42).

    Thank you for all that you’ve done. ❤❤❤

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