When I was diagnosed with HSV-1 in 2013, there were few people who shared their herpes status with the general public. The only stories I could find of life with herpes were anonymous and formulaic, usually personal essays that ran in the pages of women’s magazines or on confessional websites like xoJane. These essays always followed the same arc: a woman gets herpes from a one-night-stand, locks herself away in shame-drenched isolation, and eventually learns to love herself again with the help of a nice man who accepts her despite her STI. Reading these accounts of a herpes-positive life weren’t therapeutic for me; they only deepened my fear that I was damaged goods, a tainted exile of polite society.
Seven years later, the herpes community is thriving and unrecognizable. Boosted by the rise of social media networks like Twitter and Instagram, there has been a rise in activism and organizing around identity, body positivity, and feminism. It is easier than ever to talk about the issues that impact our lives, and while herpes activism is younger than other movements, the icy silence has thawed. There are podcasts about life with herpes, and cartoons, and short films. While the community of herpes-positive public figures is still majority white and female, it’s a far cry from the anonymous and negative world that it was.
It brings me so much joy and pride to see people openly sharing their herpes diagnosis. It is an unquestionable sign of progress that we are more comfortable discussing our experiences with herpes despite the powerful stigma it still carries. These public disclosures are powerful and make a huge impact on members of the herpes community who feel alone and broken. I’m grateful for the courage of folks who decide to come forward and put another crack in the ice.
While I have a complicated relationship with the word “brave” and using it to describe disclosing your STI status, I think it’s appropriate here. It is brave to share your STI status. Public disclosure is an act of generosity that is not without risk and consequence.
I invited my friend Emily Depasse to chat with me about how public disclosure has impacted our lives as activists and as normal people. This conversation is our attempt to help others as they consider making the same choices we have made, and to share some of the lessons we learned the hard way. We don’t consider ourselves the final verdict on this topic; we were excited by the prospect of diving into the sticky nuances of public disclosure, knowing full well that there are no right answers. We hope this will be helpful as a resource, and we can’t wait to hear what you think. — Ella
What’s the difference between public disclosure and private disclosure?
Ella: There are lots of ways to disclose your STI status that run the spectrum from intimate to a public broadcast, so “public” and “private” will mean something different to everyone. But in general, I think of private disclosures as the conversations you have with friends, family and potential partners. They’re direct discussions with someone you trust. Your goal is to obtain a sexual partner’s informed consent, or to confide in a loved one because you need support and understanding. These private disclosures are immensely powerful because they can help you gain confidence as you battle shame and fear of rejection, and because you’re directly educating people about herpes who are the most likely to listen and learn from you. Your friends and family already love you and wish you well, and that loyalty will hopefully override any confusion and stigma-influenced judgments they may feel. In an ideal scenario, the person to whom you’re disclosing will join you as an everyday champion against STI stigma because now they know someone with herpes.
Public disclosures can be community-based, where you tell folks in your classes and peer groups that you have an STI and it gradually becomes common knowledge. Public disclosures can also be broadcast-based, where you post your STI status online in a way that’s readily available to your social networks, or even to the whole world. Usually the goal of these public disclosures is a mixture of activism and personal ownership of your status. You want to educate people about STI stigma, and/or you want to take control of your diagnosis.
I won’t fudge the truth here: public disclosures are risky. Your STI status has less and less context the further removed it becomes from you: strangers who don’t know you will draw their own conclusions and are less open to questioning their biases. Your STI status may carry weight with potential employers. The judgment of strangers isn’t fair and it shouldn’t prevent you from sharing your STI status if it’s what you want to do, but it’s important to understand how context (or lack thereof) changes the reception you’ll get.
In my opinion, the only disclosure you’re morally and ethically required to make is to a sexual partner or someone with whom you may come into physical contact—in other words, someone who is at risk of contracting herpes from you. You don’t owe anyone else that information.
Emily: When I think of public versus private disclosures, I think of social media announcements versus in-person conversations or texts. And I think that’s an honest reflection of the world in which we live and what we increasingly witness on social media. There are certainly more available resources that address and confront herpes stigma than when I was diagnosed in 2015. And many of these resources, namely Instagram accounts, have a person behind them, willing to share their story with the world.
This is beautiful in the sense that we are bearing witness to a sense of normalcy in these disclosures that was not present five years ago. This is change. Considering that so many of these accounts are run by white, cisgender, heterosexual women, I am especially enthusiastic to see marginalized folks share their experiences so that others can see themselves in these spaces and be heard. It’s been challenging to find resources that extend beyond my own privileges. Government agencies and sexual health organizations are woefully behind in disseminating guidelines for LGBTQ+ folks. It’s something I hope to see change sooner rather than later (more like yesterday).
Along with the increase in public disclosures, I’ve seen a recent surge of folks expressing pressure within the HSV+ community to publicly disclose. If your goal is to raise awareness around herpes stigma, public disclosure isn’t a requirement. Certainly, if you feel that’s the right avenue for you, follow that instinct. But if you’re feeling apprehension, or finding that doubts of publicly disclosing outweigh your passion or enthusiasm, listen to that. Like Ella said, the only time that you ever have to disclose is with your sexual partners or anyone who is at risk of contracting herpes from you.
How did you decide to publicly disclose?
Ella: I publicly disclosed my herpes status in stages. A year after I was diagnosed, I gave a presentation in a psychology class about STI stigma. My classmates were surprised but supportive, and several approached me privately to confide that they also had STIs. Then I wrote a personal essay about herpes for an English seminar about Memoir Writing, and my classmates workshopped it with professional respect— they didn’t acknowledge the unusual subject matter. I’m grateful for how open-minded my peers were. Their willingness to just roll with it gave me confidence at a time when I had next to none.
Two years after my diagnosis, I wrote my first essay online about herpes as part of a discussion about safe sex within erotica. This was the first time I disclosed in publicly-available words that I had genital herpes, and again the response was overwhelmingly positive. That experience gave me the stones to write an essay for Women’s Health about herpes, my sex life, and why I enjoyed publicly disclosing. The title of that essay was oddly prescient: Why I Love Telling People I Have Herpes.
My early public disclosures had two motivations. First, I was righteously angry about herpes stigma and the absolute lack of conversation about it, even within the social justice communities I called my home. I wanted to fight back and change things, and at age twenty-two, I was energetic and fearless enough to throw myself into the ring. I understood myself as uniquely equipped for this challenge as a sex writer and a Feminist, Gender and Sexuality Studies major. It felt like fate.
Second, I just needed to talk about it. I’ve always been a person who works out her pain and confusion through writing, and I had no choice but to do the same when it came to my herpes diagnosis. Being a rebellious loudmouth is my nature—to not publicly disclose was to go against my personality and instincts. While I didn’t consciously know that my activism was a therapeutic exercise, it definitely was one.
Emily: About a week before Christmas in 2015 (aka five months post-positive diagnosis), my then-almost-partner broke up with me on a Snapchat text. This was the same person who gave me herpes. The same person who was unable to support me emotionally through the ups and downs of receiving a positive diagnosis–largely, because he could not support himself.
Initially, my reaction was fueled with anger alongside a deep period of grieving. I was mourning the relationship and its potential in addition to what felt like my future love and sex life. The same question I asked myself upon diagnosis “Who will love me?” creeped its way back into my mind.
I tend to reflect significantly about a relationship’s ending, long after its expiration. I grasp at my emotions and feel my way through what remains. This investigation was layered with the complexity of sharing a positive diagnosis with this person. I divided my processing into three sectors: Us Before Herpes, Us During Herpes, and Me After Herpes. When looking back at these phases, it became clear that my positive diagnosis shaped the remainder of that year in ways that distanced me from myself. My sexual self-esteem and desire were non-existent. My motivation, zest, and hopes for higher education were extinguished. I was drinking more and could count far too many nights that I couldn’t remember. I did not seek therapeutic support, largely because I felt that a therapist could never understand my experience. I was in the midst of self-destruction.
So, in an effort to take back the remaining days of my year, and ultimately, myself, I decided to publicize my diagnosis. It felt right. I wrote a vague blog post several months prior that spoke to a darkness that I experienced, but I had not yet named that darkness as herpes stigma. Since my diagnosis, I spent hours upon hours researching herpes into the wee hours of the night. I spent time on message boards, social media, and blogs–anything that I could get my hands on that wasn’t a government guideline or screening regulation. Somehow I stumbled upon Ella’s blog, which subsequently served as inspiration for my public disclosure.
Public disclosure felt like it was the next step in my personal and professional journeys, which I think is an important distinction. I held career aspirations and a path forward within the human sexuality field prior to my positive diagnosis. Suddenly, my experience with herpes and my undergraduate background in Gender and Sexuality Studies started speaking to one another. I began to see what was missing in my sex education background, as well as sex education throughout the United States. I began reflecting on what I would and could do differently as an educator as it relates to herpes, STIs, and their associated stigmas. I thought back to a specific moment of vulnerability along my journey. The moment when I thought, “Maybe I should talk to someone.” That moment later became the inspiration for my graduate school application essay and specialization as a sex therapist.
What happened next?
Ella: To be brief: my essay in Women’s Health went viral and I became a herpes poster child overnight. I joined the ranks of Adrial Dale, Jenelle Marie Pierce, and the handful of other activists who publicly owned their herpes status. Because I worked in media, my writing was picked up quickly by mainstream publications like BuzzFeed and the Washington Post.
The aftermath of my public disclosure was an extreme example of what can happen. I received thousands of messages from strangers sharing their STI stories with me. The CEO of the company where I worked shared an interview I gave with Huffington Post Live on his Twitter feed and said he was proud to have me on staff. Everyone in my life read about my most traumatic and intimate secret, and it was a relief to not have to tell people anymore—they already knew! It felt like a massive weight had been lifted from my shoulders, and shockingly, people thought I was a badass.
But healing in public is a complicated experience. There were thousands of hateful comments on social media calling me a disgusting slut. I received dozens of unsolicited sexual messages from men wanting to have sex with me. There was hate mail, and bloggers on the Religious Right wrote weird posts that tracked down my high school tumblr account. Because I was still insecure about my herpes status, having thousands of strangers voice my worst fears about myself was its own kind of trauma. I was a live wire, a raw wound, and I was diagnosed with an anxiety and panic disorder soon after.
Finally in April 2016, I started a social media campaign called #ShoutYourStatus with an amazing group of herpes-positive activists and writers. For a beautiful day or two, we encouraged strangers to talk about their STI status on Twitter, many of whom doing so for the first time ever. But then our campaign was discovered by conservative reactionary trolls who viciously attacked us and took over the hashtag. Humiliating videos and articles were posted about us on Infowars and Breitbart. Years later, #ShoutYourStatus is still mocked on 4chan and Reddit as an example of the worst of feminist activism.
The Alt-Right takeover of #ShoutYourStatus scared the shit out of me. It also felt like a personal failure of leadership. One of the women who participated in the hashtag blamed me for putting her at risk, and she wasn’t wrong. I was too inexperienced as an activist to understand how to open the internet truly is, and how quickly our small conversation about STIs would leave the safety of the sex-positive community. While I’d been inspired by #ShoutYourAbortion, I hadn’t done enough to warn #ShoutYourStatus participants that we might see the same backlash. I also felt bitter: I’d taken immense heat online alone for the last year. Could no one else stomach it with me?
(Now that I’m older, I understand that no, not everyone has the privilege or the safety to willingly expose themselves to online hatred and mob violence. Not even me.)
Emily: Several days after Christmas, I published my diagnosis first as a Facebook status, and then as a blog post. To some extent, I felt like I owed my family and friends an apology for the person I became after my diagnosis. I also felt that it was an opportune moment to shed light on the psychological and emotional impact of herpes stigma. Close family and friends met my initial disclosures with empathetic support and listening ears, so I did not necessarily have any apprehensions about posting publicly, but there was that subtle reminder of what if lingering in the back of my mind. In response to my Facebook disclosure, I received strong messages of support from friends old and new. Some of whom I had not spoken to since elementary or high school. Some even felt so compelled to share their own diagnosis stories with me through private messenger. Little did I know that these messages would soon become the norm.
What were the unexpected advantages and consequences?
Ella: I went from nobody to a huge public face overnight, so I’m a weird example, but I was not expecting the deluge of attention and messages from other people with herpes. It was both wonderful to feel supported and valued for my writing, and terrible to be overwhelmed by that level of attention. I received thousands of Facebook messages, emails, and comments on my blog filled with traumatic personal stories from the herpes community. It’s hard to explain how even positive feedback can be grueling and upsetting: the human brain isn’t built to process that level of attention. The messages I received were often triggering and unwelcome, and occasionally graphic and sexual, even when they weren’t unkind. Even becoming a micro internet celebrity demolishes your boundaries and your privacy.
That being said, it’s a tremendous relief to just have my herpes status out there in the world. I rarely have to disclose to anyone directly while dating or making new friends because they just already know. Thankfully that means I have a self-selecting group of friends and romantic partners, which means I rarely encounter direct rejection or judgment.
It is also always a joy when a stranger stops me on the street to ask if I’m Ella Dawson. A few months ago I was on my way to Target to buy groceries. I’d just quit my job and I was feeling really low, my self-esteem in the toilet. We’re talking dirty hair and pajama pants on a Wednesday night kind of low. I was carrying out my shopping bags full of Diet Coke and my new antidepressant when a girl stopped me in the vestibule. She recognized me and immediately became emotional. We chatted for a while and swapped Instagram handles and hugged it out. It was this random moment of intimacy and connection. At a time when I was really struggling with myself, she reminded me who I am and what I believe in. It restored my confidence in the choices I’ve made in life. I think about her a lot.
Emily: Professionally, my disclosure served as a gateway for developing a niche expertise within my field. Personally, my disclosure increased my communication skills and level of vulnerability, especially with sexual and romantic partners. People are always surprised when I share that I have never experienced a direct rejection because of my herpes status, but to me this is unsurprising. A simple Internet or social media search will lead friends and strangers alike to my work. It’s not something that I hide on my personal networks. Additionally, it’s a disclosure that tends to happen organically. For example, when a prospective partner asks about my graduate studies or how I found myself in this work, I speak to my personal experience and journey–including my herpes diagnosis.
I was naive to think that my public disclosure wouldn’t be targeted. Candidly, I never believed my work would reach the levels that it has. Largely from Ella’s support, my blog gained traction, as did my writing. I remember the moment that I saw my name in a headline. And it wasn’t the headline that anyone aspires to see themselves represented in. The article was written by a member of the Alt-Right who clearly had too much time on his hands. His Internet search led him to my Facebook, LinkedIn, and other social media pages that were not private. He found my college. He found my high school. He researched their tuitions and made claims against my parents’ ethics and values. I was visiting a now-ex-boyfriend. We had just walked into a party. I remember stopping in the dining room as others made their way to the kitchen. I remember him looking back and asking what was wrong. I remember the emptiness that echoed on the hardwood floors. I actually think Ella found the article and sent it to me so that I was aware of its presence and could take any necessary precautions. Even though at this point, it felt too late.
Shortly after the article was published, I became a target of “hit it or quit it” forums. One user commented that they’d “Depasse on that.” That’s a comment that I never really spoke about, but it stuck with me. That one stung. It was around this time that I stumbled upon yet another forum of men scheming to message me on Facebook hoping to lure me into conversation. It was here that I discovered an image that someone made with herpes sores photoshopped across my face. These incidents occurred less than six months after my public disclosure.
I try my best to remove myself from the comments sections on articles that I write, but it’s a difficult boundary to set and maintain. Sometimes it’s hard to look away. Sometimes I read what someone writes and simply wonder, “How can you not see my humanity?” I’ve even had to remove myself from engaging in the comments section of my Instagram posts because no matter the commenters’ intentions, they’ve become too overwhelming for me to engage with on a daily basis. I’ve been forced to set a lot of boundaries, some I never really imagined would be necessary. For example, I’ve had multiple people send me photos of their genitals asking if they have herpes. Some may laugh as they read this, but I understand the motivations behind pressing send.
These folks feel incredibly stigmatized and embarrassed. So much so that they’re likely either afraid to make a doctor’s appointment or do not have the necessary means for care. This communication is a desperate attempt to connect with someone whom they feel “gets” them. While I understand where they’re coming from, it’s a complete violation of my personal and professional boundaries. It’s certainly something I never thought I’d have to outline on my social media platforms.
Have we ever had “buyer’s remorse” on that decision?
Ella: I’d be lying if I said I never have moments of regret. When I decided to “retire” from herpes activism a few years ago, I did so out of deep exhaustion and anger. My mental health was in tatters and I needed to restore my privacy and identity outside of that girl with herpes. But even then, I didn’t regret the choices I’d made. I just wanted a break. The end goal of herpes activism is to have herpes understood as no big deal, just a skin condition, just a virus like anything else. It’s not a consequence of immoral behavior or a huge stain on your character. It shouldn’t be an identifying characteristic at all. But my writing and weird micro-fame had made herpes my largest public identifier, and in my worst moments it felt like I’d sacrificed myself for the cause.
Now that I’ve had some time to myself, I don’t feel like that anymore. I can be a part of the herpes community without making my herpes status the center of my life. And I know that I made the right choice for myself by publicly disclosing. I’ve always been a sex writer and a self-righteous pain in the ass. Writing and organizing around the issues that impact me is my way of empowering myself through difficult circumstances. I feel I have a responsibility to other people with herpes to agitate for change. Even though herpes isn’t my main project anymore, I want to be a public figure who has herpes to normalize it and give others hope. We need known faces for the newly diagnosed to look up to and learn from, and I have the privilege and the experience to take on some of that weight.
That being said, it’s not always easy or healthy to be so strongly associated with a stigmatized illness. I’ve lost job opportunities and been judged. I’ve had to help more than one partner walk their parents through the practicalities of herpes and assure them that we’re being safe and smart. Being harassed online and used as a punching bag by sites like Infowars, Breitbart, and obscure right-wing blogs fucking sucks.
I don’t want to scare anyone out of publicly disclosing their status. I just think folks should understand that there’s no one correct way to be an activist and make change when it comes to herpes stigma. Not everyone is in the position to become a poster child. It comes with weird sacrifices and violated boundaries, and it’s important to know what you’re signing up for. You have to make the right decision for you and for your family. You can’t put the herpes genie back in the bottle.
Emily: Whenever I make a big decision, I always wonder if it was the “right” one. My public herpes disclosure is no exception to that thought process. Some time ago, I shared in a moment of vulnerability with my mom and asked her about a decision I made, unrelated to herpes. She said, “Emily, whenever you’ve made decisions like these, how did things turn out? Have they ever really gone wrong?” This is a conversation that I return to when spending time in moments of reflection. To my mom’s point, no matter the circumstances, I felt that I made the best decision I could in that moment with the information that I had available.
I do think that my background in the sexuality field and desire to further my education propelled the role of disclosure and its purpose in my work. If I were not involved in this field, or did not have plans to be involved, I doubt if I would occupy this space in the same way, if at all.
What do you wish you’d known before publicly disclosing?
Ella: When I decided to go public with my herpes status, I thought through the decision as far into the future as I was able to. I believed that anyone who wouldn’t date or hire me because of my STI status wasn’t someone I wanted to date or work for in the long run anyway. While I still believe that and think my principles were right on the money, I didn’t expect how much the opinions of unimportant people would hurt and frustrate me. I didn’t anticipate how much my public disclosure as HSV+ would be weaponized against me as a political activist, or how dangerous the attention of the Alt-Right would be. How could I? The Alt-Right didn’t have a name in early 2015. I had no idea that my activism would eventually be seized upon by conserative extremists as the perfect example of “social justice warriors” going too far to normalize our depravity. You never meet the backlash or consequences you expect. They’re always random and infuriating.
Emily: Aside from echoing Ella’s sentiments, I’d say that there is always an expectation to explain oneself. Whether it’s to family members, partners’ family members, or even professors. It’s something that’s remained a constant in my life since publicly disclosing, no matter how professional or established I appear. People don’t get it. They don’t have to understand it, but they also feel entitled to answers. There are moments when I feel like a specimen, a spectacle, a case study. I don’t fit society’s script or mold, so I am labeled as an other. I’m someone that needs to be “figured out” with the ultimate goal of understanding “what went wrong.” My career interests in human sexuality are enough to elicit glares of judgment, but adding my public herpes status to the conversation…it’s enough for people to distance themselves from me, and some of them have. There are lost moments and relationships that have drifted beyond repair. It’s easy to say they were “never meant to be in my life,” but that doesn’t negate the hurt or longing for those connections.
What are the right reasons to publicly disclose? What are the wrong ones?
Emily: I’ll speak to the one reason I see most often that I feel comfortable labeling as “wrong.” If you’re looking to make a profit off your diagnosis by marketing your story, public disclosure isn’t the space for that, especially if you’re coming from a space of privilege. It really frustrates me to see accounts (namely white, cishet women) that market themselves as herpes coaches, labeling their story as the only story. Charging astronomical values for coaching sessions with the promise of returning a desperate, marginalized community. Removing herpes stigma isn’t a sustainable career. If your goal of public disclosure is to eradicate stigma and you’re hoping to make X amount of money from this population, your goals work against one another. What happens when stigma is removed?
Ella: What Emily said. If your end goal is to end herpes stigma, you can’t tie your income or your career to herpes stigma, otherwise you’ll reach a point where you have to choose between your values and your bank balance. By all means, create products and resources for our community—we need them! But traumatized populations are easy to exploit, and there’s a thin line between snake oil “holistic” cures for herpes and uncertified “herpes coaches” charging hundreds of dollars for a Skype call.
To go back to the original question, I recommend making two lists of the reasons why you want to go public with your STI status. The first list is of noble reasons, and the second list is of embarrassing reasons. Wanting to reduce STI stigma and misinformation in your community? Noble reason. Wanting people to find out that your ex-boyfriend gave you herpes? Embarrassing reason. Being honest with yourself in advance is a great way to remain true to your noble reasons for wanting to disclose publicly, and to be aware of and avoid the dishonorable or harmful reasons.
Is it easier for some people than others to publicly disclose?
Ella: Public disclosures, especially broadcasted disclosures, are fundamentally easier the more privilege you have. In my early 20s I didn’t worry about how my HSV+ status might impact my hireability because I was a white, upper-middle-class, straight-passing cis woman who never worried much about money in the first place. At that age I had a financial safety net that made me feel immortal. My race shielded me from the nasty sexualization and objectification that women of color face when they talk about — or merely live in — their bodies.
Public disclosure was easy for me up until I began to write about my STI status in conjunction with my politics: feminism, gender, pleasure and access to healthcare. Then it became a target on my back. But even then, I had the financial resources to keep myself safe and seek the support I needed. I didn’t have children I needed to protect, and my parents were able to shield themselves from harassment.
When my mental health struggles became more severe, it was increasingly difficult to be a herpetic public figure. It was harder for me to manage the attention and the constant boundary-violation of micro-fame, and I had panic attacks and anger issues. At that point I no longer had the resilience (or the financial security) to maintain my work.
Emily: Ella pretty much sums it up. There is a reason why this space is predominantly occupied by white women–it’s already a safer space for disclosure and acceptance. I did not walk into this community with the level of awareness of my privilege that I hold now, which I also think is important to claim and acknowledge. My presence and awareness of how I occupy the HSV+ and sex education communities has evolved over the past five years. There has been a significant amount of learning, but perhaps even more unlearning. When looking back at my early herpes work, I cannot help but see gaps, lapses, and ill-informed perspectives. While this is a point of growth and opportunity to update that work, it’s also important to share these vulnerabilities with these communities. If you do decide that public disclosure is in alignment with your journey, know that missteps and oversights are inevitable, and how you navigate them speaks to your character.
How can you prepare for going public if you’ve decided it’s what’s right for you?
Emily: After you’ve made the decision to go public, I recommend spending some time in self-reflection, especially if you’re someone that doesn’t often sit in that space. Envision what going public looks like for you. Whether that’s through deep thought or putting pen to paper and coming up with a plan. Ask yourself, in an ideal world, what does life after public disclosure look like? Is it an Instagram account dedicated to teaching others about STIs, screening, and stigmas? Is it hosting a space for other folks to submit and share their stories? There’s no one way to go public, but I think it can quickly become overwhelming if you’re without a plan.
Even if you do not consider yourself as a part of the human sexuality field, this disclosure will change that by default. Sexuality, like herpes, is highly stigmatized, misunderstood, and judged. Prepare for the fact that some friends and family members may not understand the journey you’re about to embark on.
Ella: Give a head’s up to the people who love you. Be prepared for friends and family to push back and question your choice: they will do so out of concern for you and a desire to protect you. But whether or not they agree with you, they deserve advance warning, and this gives you an opportunity to explain your reasoning and ask for the kind of support that you need.
How can you protect yourself before going public?
Ella: Lock down all of your accounts. I say that as a social media manager: look at your Facebook profile pictures, your Instagram accounts, your Reddit comment history. Make sure everything is either private or scrubbed. Decide which accounts are public and which accounts are just for your friends and family. I didn’t get ahead of my social media boundaries before I went viral online and the Daily Mail took a bunch of pictures from my Facebook profile to use in an article about me. It was humiliating. Now I have a public Facebook Page for my writing and activism and a private Facebook Profile for my friends and family and boyfriend—same goes for my Instagram accounts.
I also no longer receive messages online from strangers unless they’re public comments and tweets or professional emails. I don’t read my Instagram DMs. I just mentally can’t handle hearing other people’s stories about herpes or reading their requests for advice—I still receive dozens of messages a week. Even if I wanted to help, I would run out of time, energy and sanity. So I’ve put up that boundary. If people do want to get in contact with me, I have a PO Box on my website and an email for professional inquiries. It’s worth thinking through ahead of time how open and available you want to be to the world.
Emily: Aside from differentiating public and private social media accounts, I would also consider what other platforms you may be forgetting to label as “social.” For example, LinkedIn or similar job networks that you’ve signed up for that are easily visible to a prospective employer. This is especially important if you hold a career outside of the sexuality field. When I was searching for jobs long after I publicized my diagnosis, I made it to a certain round in many interviews only to be ghosted. While I cannot prove that an Internet search was responsible for these abrupt closures, it certainly makes me wonder if my online presence was the nail in the coffin.
As my Instagram presence grew, so did my need for boundaries–both online and in real life. Many of my followers are unaware of the life I lead outside of Instagram and what it takes to maintain an online account–especially one that produces free content on a regular basis. In the last year, I’ve developed a self care routine that supports me through my journeys in academia, client work, and beyond. A large part of that self care routine is also knowing when to take time away from social media and return to myself. I believe that self-awareness is a key to mitigating burnout. Toward the end of 2019, I began taking additional time off from Instagram, removed myself from the comments, and stopped accepting direct messages.
Any final thoughts?
Emily: Your feelings about maintaining a presence in the HSV+ community may change and fluctuate with time, but publicizing your diagnosis is permanent. All too often, I see accounts with great hope, promise, and intention fade away leaving a vulnerable community behind. If you do publicize your diagnosis, I think that it’s imperative to consider what role, if any, that you desire to take within the HSV+ community. If you plan to take time away from your accounts, or plan for a more permanent departure, it’s important to let your communities know beforehand and have alternative supports lined up.
Ella: Just as there’s no one correct way to publicly disclose your STI status, there isn’t a specific amount of information you need to share. It’s tempting to include every single detail to prevent people from misunderstanding you, but you don’t owe anyone the full story. You do not need to explain how you got herpes, what you did “wrong,” what you’ve “learned,” who gave it to you, or any other part of your experience. Those details do not change the fact that you have herpes and you are a valuable person who shouldn’t be judged for your STI status. Share as much or as little as you feel comfortable sharing, and remember that you don’t have only one shot at this. It’s okay to start with: “I have herpes, and that’s what’s up.”
Ella Dawson is a sex and culture critic. She speaks to the crisis of miscommunication in our lives, from our dehumanizing culture of casual sex, to how shame keeps us silent about our mental and sexual health. Her TEDx talk about fighting herpes stigma has been viewed 650,000 times, and her activism has been featured in the Washington Post, HuffPost, and New York Magazine. Follow her on Instagram @brosandprose.
Emily L. Depasse is a writer and sexologist redefining the narratives around STIs and relationships. She holds a BA in Gender and Sexuality Studies and is entering her final year in Widener University’s MSW/MEd Human Sexuality program as a future sex therapist. Learn more about her work at emilydepasse.com and follow her on Instagram @sexelducation.