Finding & Creating Support
Support can look like a lot of different things. It can be an organized group, it can be a phone call or an online chatroom, it can be a book, a podcast, or even just a friend. This post is here to help you find the support you’re looking for….or maybe even give you the tools to create it for yourself!
Finding the “right-for-me” support after my diagnosis was pivotal. Before I made a point of seeking out support, only one other person knew of my diagnosis and honestly- it was too much for the two of us to carry. My support was my lover.
We had started having unprotected sex just prior to my initial outbreak and I had exposed him to HSV2 before I even knew that I had it. The guilt and fear that I had potentially transmitted to him was more than I could bear and I disclosed to him immediately. Long story short- he accepted me. We sort of fumbled through the next few days, weeks, and months learning about the virus together. I started anti-virals, we used barrier methods, and we refrained from sex every time I had any sign or suggestion of prodrome. I had survived the impact of the biggest crash of my life and my partner was helping me sort through the rubble. He was patient, loving, and understanding… but I still needed more support.
You know, I even feel guilty typing that last sentence. Often when we’re diagnosed with herpes, we stop believing that we deserve things. Things like love, sex, and even support. I had it pretty good- a great man who adored me, a pretty active sex life, and very mild, infrequent outbreaks….what the hell was I complaining about!? But listen to me sis- just because we have herpes does not mean we aren’t allowed to have our needs met! And although I had a boyfriend - I still needed lots of fucking help. “Landing a partner” is not the pot at the end of the rainbow.
What was really lacking for me was a sense of empowerment, self-forgiveness, and just ONE other person to say, “I have herpes too!” I kept reading the statistics that herpes was everywhere but nowhere could I find someone who I could relate to. Until I found Ella Dawson. She was a young, empowered female who was disclosing her herpes status from the TedTalk stage… and she blew my damn mind. Even though I’ve never met Ella Dawson and she probably has no idea who I am- she was a big piece of my support system. After I saw her speaking her truth, I knew I needed to speak mine.
About a year or so into my diagnosis I wasn’t quite ready to share my herpes status into a microphone nor in front of a room full of strangers (though I have since then…twice!) But I was ready to share my secret with someone other than my partner (who at this point I had separated from.) I told one friend. And then another. And then MY MOTHER. And a handful of other really caring, accepting friends. And after about 8 disclosures, I finally found somebody who said, “me too.”
Again, here I go talking about positive reactions, tons of acceptance, and lots of love and support - but it still wasn’t quite enough for me. Although one friend did tell me she had HSV - it turned out to be oral HSV (and many kudos to her for knowing that cold sores are in fact herpes!) but it wasn’t quite the same- I needed someone who shared my experience of contracting and living with genital herpes. I was getting warmer and warmer to what I was in search of so I just kept looking.
At this point I had been disclosing enough that I wasn’t nearly as timid as I had been previously. I was starting to get curious about support groups in my area and found one that met frequently with LOTS of members- surely there I could find a 20-something year old womxn who was struggling with the same thoughts that I was constantly chewing on: “Can I still enjoy casual sex? Oral sex?” “Is having children still on the table?” “If 1 in 4 womxn have HSV, where the fuck are they all!?!” So I RSVP’d to their next newcomers Meetup.
Okay- YIKES. I loveeee that there is a very well known support group with nearly 1,000 members here in Austin but their meetup was just not for me. It was in a dimly lit library room, with 12 people sitting in a circle, talking about how awful life was with herpes. It was sad, there was lots of inaccurate information being circulated, and “empowered” was not exactly how I would describe this group. I was surrounded by plenty of people who had been diagnosed with genital herpes but not a single one of them were talking about how it changed their lives- only how it had ruined them.
Needless to say, I couldn’t find exactly what I was looking for. So you know what I did? I created my own damn Meetup! Positive Results was born in July of 2018 with the intention to attract other womxn who wanted to turn their positive test results into positive LIFE results. Cheesy, huh? But really! Why should herpes have to mean my sex life was over? Why should it have to mean I was sentenced to a lifetime of shame and embarrassment? Why should it have to mean that I had to be hidden away in the back room of a dark library to commiserate with my fellow “heeps” (by the way, I hate that term) It DIDN’T.
I reserved a well-lit (yet very cold, lol) room in a different library on the other side of town. I advertised my meetings on Meetup as well. Seemed a bit unoriginal but it’s definitely the most cost effective and private way you can do this sort of thing. My first few gatherings were ROUGH. Luckily, I had actually met one 20-something year old friend at that last, less-than-inspiring, meetup and sometimes she came to sit with me when no one else attended. I’ll admit, many times it was just me in that library room, with no attendees, feeling a bit discouraged, but still determined to find other womxn who felt like I did….because I knew they were out there. So I kept hosting and eventually, I found what I was looking for.
Every now and again, a babe or two who fit the description (around my age, living with genital herpes, tired of the stigma, and looking for a sis in the same boat…) would walk through the door. We’d sit and share our experiences, I’d lend whatever helpful information or resources that I could, and we’d agree to stay connected. Sometimes we’d ditch the library to have dinner together across the street or go for a walk around the neighborhood. And once I had rounded up about 5 or 6 womxn from those gatherings, I invited them all over for a “meeting” at my place.
Oh my, that meeting was fun. We cracked open a bottle of wine (maybe a few) and shared our stories. We laughed and laughed, we may have even cried, but we were just a bunch of gals, LIVING with genital herpes. From that point on, that’s how the meetings went (except that one time we met at my apartment’s pool instead.) It was like nothing else out there, and it was exactly what I was looking for.
At that point, I had taken down my Meetup group. It had come time to pay the annual fee to keep the page alive and we hadn’t had any new members find us on there in awhile. The “Monthly Positive Results Gatherings” had unofficially turned into “Herpes Book Club” and it continued to grow even without the Meetup page! It grew because every now and again one of these babes would bring a friend along with them who they had met because of those “I have HSV, too!” conversations (ah, the sweet power of disclosing to other womxn.) And just last week, at our final gathering before my move to Oregon, I had 9 amazing womxn sitting around my living room, laughing, sharing, and supporting one another. “Herpes Book Club” was exactly what I had set out to create. At last, my heart, and that support void, had been filled to the very top.
Below is a list of my suggestions for finding and creating support in your own world.
Check out Meetup.com or the app
Herpes support groups are pretty good about confidentiality and requiring approval for their groups. If you’re scared of putting your REAL self out there at first, create a pseudo account!
Another site that can help you find support groups your area (US, Canada, and Australia)
My favorite way to find support. Of course I know its not for everyone (yet!) but it could result in finding support in your family, social circle, or other communities you’re already involved with.
I had found a tremendous amount of support through books, podcasts, other herpes activists, and online resources. Find the ones you love and visit them often! You can check out my Resource Page for some of my personal favorites.
Start a blog about your experience
It can be public, anonymous, password protected, or even for your eyes only! (Creating support doesn’t necessarily mean you HAVE to support others, maybe it just means creating an outlet where you can further support yourself!)
Create an Instagram page
I see more and more accounts popping up for HSV+ people who are looking to empower or support others in this community. Again, it can be as public or as private as you’d like
Lead a group
Whether it’s an online chat room or an in-person support group - you can certainly lead your own. It does not require any sort of credentialing or years of experience! Sharing your story and creating a safe space for others will not only help the attendees on their journey, but will also catapult you down the road of self-discovery and fulfillment (Trust me! Check out HSVintheCity if you don’t believe me!)
If NONE of the above is what you’re in search of, I encourage you to figure out what it is that would fill you up and find it. If you can’t find it, create it. Because at the end of the day - we don’t deserve to have a hole in our hearts, feel like we’re not fully supported, nor feel stagnant on our journey to find peace and acceptance with our diagnosis.
I hope you find what it is you’re looking for. Because you are worthy of it!
This post is dedicated to my Austin, TX babes.
My heart is truly full, thanks to you. Thank you for trusting me with your stories, for being brave enough to set out in search of YOUR support, and for supporting ME through this journey. I love the lot of you more than you can possibly know, and I’ll miss the hell out of you. You know who you are and you’re always welcome to come sit around my living room, where ever that may be.
Okay- now I’m sitting over here crying my eyes out…I love y’all.