Healing in Community: Why We Speak Out About Herpes

Breaking the Stigma: Why Our Herpes Support Community Matters

As always, I love our support group calls. If you're in the Secret Society Support Group and not jumping on the calls, then you are totally missing out on meeting your community friends and healing along the way. If you're not a member of the Secret Society Support Group, then you need to jump on board! We are a community of people from all over the world who are joined together by one thing: a herpes diagnosis. One of my favorite parts about our community is that some members have been here since the beginning—that’s 2017! Others have had herpes for decades and love to share their advice. Then there are people who were just diagnosed within hours and have found their home here in our community. Regardless of where we are in our journey, we’re all here supporting one another, holding each other's hands as we jump through these diagnosis hoops. So yes, I love our community, and our community makes me so proud.

On the topic of community and herpes, I want to get a bit controversial and talk about an Instagram post that one of our members shared. Here's the link for you to check it out. It’s a stitch taken from another herpes influencer, Christopher Pickering, who is someone I respect and admire in the herpes influencer world. In the video, a guy expresses his shock that there are now herpes influencers. I took some time to watch this video—actually, I watched it a few times and read through the comments before I gathered my thoughts. We even watched this video in our support group on Monday. So, here are my thoughts on the stitch.

My initial reaction is that I get it. Talking about herpes is very controversial. It can trigger a lot of emotions in people, and yes, when we’re talking about STIs, it’s a taboo topic. I’m not at all blind to the fact that herpes is a word that makes people’s skin crawl. It opens the door for rude remarks, mean jokes, and the isolating feeling that you’re alone on an island. So, I can only imagine that if you don’t have herpes and you’re scrolling through TikTok or Instagram, and you see someone like myself or other herpes influencers talking about how common herpes is, it can be very triggering. You might think, "Wow, what have we come to?" or "Why are people sharing their sex lives on social media?" or even, "Why should I care that you have herpes?"

As I write this, I realize that I’ve never had the opportunity to scroll through social media as someone who doesn’t have an STD. My vantage point is completely different. I see it as, "Wow, this is something that can help me," or "This is what I’ve been looking for," or "Wow, these are the answers to my prayers." I no longer have to feel alone with this diagnosis. But I understand that not everyone sees it that way, and not all the content out there is delivering the same message.

To really understand where this guy is coming from and why he totally shot down Christopher Pickering’s post, I have to try to look at it from his perspective. He doesn’t have herpes. He doesn’t know what it’s like to be diagnosed. He doesn’t know what it’s like to get that call and be told you have a lifelong STD, that you are now the subject of society’s dirty STD jokes. He has no idea whether we got it from a promiscuous lifestyle, which is often assumed, or if we got it from a committed relationship. So yes, when you’ve not experienced what it’s like to find out you have herpes, you can never really understand.

And to continue understanding where the stitch commentator is coming from—in my personal opinion, there are many raunchy videos out there with herpes influencers promoting their good looks, their hot bodies, and portraying the vibe of, "I have herpes, so what? I’m still hot, and I can have sex with whoever and whenever I want." So yes, this is a vibe that is being flaunted by some herpes influencers, and this can completely give the impression of, "Why are you promoting your sex life?" or "Why are you saying that herpes is okay?" and even "Why are you spreading herpes?"

Before I completely tear down what the stitch guy is saying, I have to look at it through his lens and agree that there is a lot of raunchy content out there, and if you don’t have herpes, you’re just never going to understand.

To be honest, I don’t like the term "herpes influencer," but I guess that’s something I stumbled upon. It’s funny, when I think of what I’ve created with Life With Herpes, I think of Dr. Seuss’s book, Oh, The Places You’ll Go! I never thought I’d have herpes, nor would I speak openly about it. I didn’t go to college to do this, I didn’t work in corporate America for 15 years to do this, and I didn’t get my master’s in theology to do this. It just fell into my lap, and I knew I had to do something about it.

When I got herpes in 2011, I was devastated. That’s an understatement—I was crushed. My self-worth was less than the scum on a portapotty. I know you know that feeling because you felt it too. But I knew I had gifts, one of which is being on camera, and the other is sharing my voice. I believed that I could help other people like myself who have been diagnosed with herpes. So, that’s what I did, starting in 2017. I was a pioneer, almost putting my head on the chopping block. Did I receive scrutiny? Yep, some. And probably a lot from people in my inner circle, behind my back, wondering why I’d do this. But in my heart of hearts, I knew that I was helping people.

So, to go back to the video that started this blog post rant, I want those who oppose or think it’s wrong to talk about herpes to understand a few things. Firstly, if I or other herpes influencers trigger you, that’s your problem, not ours. I invite you to do some deep work on yourself and understand why you have such an issue with us educating people on herpes. To be honest, if I didn’t have herpes and I came across our videos, I’d probably be triggered too. I’d think, "How disgusting," and "Why were you so promiscuous?" and "Why are you flaunting this lifestyle?" But you see, that would have been me being ignorant of the message and distorting it to fit my beliefs. So, what I’m saying is maybe this is an opportunity to work on yourself.

Secondly, what I have to say is that by talking about my herpes diagnosis, I know I’m saving lives. I’m making marriages happen, I’m helping babies be born, and I’m healing deep wounds that people have around their own personal beliefs. I know that I’m healing so many people by speaking out, and I’d never look back on my decision to do so. If you’re new to my work, and maybe you don’t agree with what I’m doing, I invite you to look at what I say and what I stand for. What I’m not doing is promoting promiscuity. What I’m not doing is talking about my sex life. What I’m not doing is glorifying herpes. I’m here to show and share that yes, I was where you were. It hurt, and it was really, really low. But through self-work, trust, believing in God, and making a commitment to myself, I’ve been able to overcome the stigma. I’m married to the love of my life, I’m a mommy who carried my pregnancy and delivered my son vaginally. Herpes doesn’t get in the way of my life, happiness, marriage, parenting, or my health. In fact, I believe it made me stronger, more caring, more understanding, more confident, and more resilient.

So, my question to you is, what does herpes mean to you? Are you reading this as someone who doesn’t have herpes (or doesn’t think you have herpes because you’ve never had an outbreak) who is appalled at us herpes influencers? Or are you someone like me who has herpes and this is exactly what you needed? Hopefully, this post will ease some of the pain you’re feeling and will open doors for you to heal, lead with compassion and humility.

Remember, I’m here, and the Life With Herpes community is here for you if you need us. Also, if you’re not a member of the Secret Society Support Group, the original herpes support group, then I’d love to invite you.

Sending you all my healing vibes. xoxo