“Why are you crying?”
Those were the first words my doctor said to me after telling me I had herpes. I was just post-divorce, in excruciating pain, and I thought I would never date again. I think crying was an understated reaction, all things considered.
My knowledge about herpes was limited at the time; I “knew” what everyone “knew.” I knew that herpes was sexually transmitted, that it was an easy punchline and that obviously it was something to be ashamed of.
I knew the language we use to talk about STIs, and that if you don’t have any, you’re “clean,” which means that if you do have one, you’re dirty.
When I texted the only person who could have given herpes to me, given the timing, he denied having it, and then said he’d “still fuck me.” Thanks?
I went home from my doctor’s appointment with a prescription for acyclovir and an inner certainty that my life was over. I called my mom, an experienced RN, who was as understanding as she could be, and gave me advice on how to cope with my first outbreak. (Pro tip: If you have an outbreak and it hurts to pee, pour lukewarm water over your bits to get things moving).
Once I was able to sit for more than a few minutes at a time, I crawled to my computer and asked Google for help. For once, Google delivered.
I discovered that there are two types of herpes, which is caused by the herpes simplex virus (HSV). HSV-1 is sometimes referred to as oral herpes, and that’s its preferred place to live. HSV-2 is sometimes referred to as genital herpes, as that’s where it prefers to live. In reality, you can get either type of herpes in either location.
Planned Parenthood describes getting HSV-1 or HSV-2 around your mouth as oral herpes. Cold sores are oral herpes. Planned Parenthood also says that if you get sores around your genitals, you have genital herpes, regardless of which virus has decided to reside there.
After my initial outbreak cleared, I waited for another outbreak to arrive. I didn’t get another one for six months, and it was very mild. After some testing, I found out that I had genital HSV-1. Since the virus wasn’t living in its “preferred” location, my outbreaks were rare. I honestly don’t remember the last time I had one, and I’ve had herpes now for over nine years.
I know not everyone with herpes has my experience. Some have outbreaks monthly, some occasionally, and a few have serious symptoms during their initial outbreaks that require hospitalisation (initial outbreaks are often accompanied by flulike symptoms). I’m grateful that, despite my shame, I sought out competent medical care, and that Planned Parenthood was also there to support me when I was uninsured.
And to be fair to the person who gave me herpes, he probably didn’t know he had it. Not everyone realises cold sores are herpes, and I wasn’t diligent about asking. I didn’t even know I needed to, and like many, we didn’t use a barrier for oral sex.
My Googling also showed me that I was not alone. According to the Centers for Disease Control and Prevention, more than one in six people aged 14 to 49 years have HSV-2, and almost half (48%) have HSV-1. Like my partner at the time, many people with herpes don’t realise they have it, either because they don’t have any symptoms or because their symptoms are mild and attributed to something else.
Of course, none of that really addressed my most pressing concern: Would I date again? As I searched the internet, I discovered something interesting: dating sites for people with herpes. Some have argued that dating sites for people with herpes are unnecessary and further stigmatising. To be perfectly honest, I didn’t have a lot of great dates from those sites. I didn’t have a lot of great dates from any dating sites, though.
However, I did find posts on those sites about local meetups, and I decided to go to one.
What did I find? A group of remarkably friendly people, which is impressive considering all we have in common is a skin condition. I discovered people who were dating, who had gotten married, all after being diagnosed with herpes. Some had found partners with herpes, some found partners without herpes.
I was also introduced to a vast network of secret herpes Facebook groups, some of which are for dating, but most of which are just for commiserating, chatting, posting memes and asking questions.
As I found the courage to date, I also made a commitment to disclose that I have herpes to potential partners I found in the wild.
I typically disclosed as soon as I thought things were moving in the direction of it being relevant. I also disclosed to past partners whom I thought I might reconnect with in the future. I disclosed in person, by phone or even by email depending on how I usually connected with that particular person. Honestly, I prefer email since I can include links to relevant, accurate and non-shaming information about herpes and potential risks.
When it did go well, that led to another conversation about making sure they understood the risk. First, I would encourage them to get tested, as lots of people have herpes and don’t realise it. They also needed to know that herpes can shed any time, even when there is no visible outbreak. As people get more familiar with how their body acts with herpes, they can usually feel an outbreak starting (there’s a sort of tingly feeling before an outbreak for some people) and they can avoid sexual activities that might spread the virus.
Condoms and dental dams can help, but the virus can spread through skin-to-skin contact from areas not covered by those. I could take a daily suppressive therapy, and I have, and that lowers the risk of transmission as well.
Some people are willing to accept the risk, and some aren’t. That’s okay, though. Dating doesn’t always go well for lots of reasons. Even when someone chose not to date me, I hope they left a bit more informed about STIs.
Eventually, I met a charming, gender nonconforming individual in one of these groups. We talked a lot online and met up at a national event for people with herpes. Yep, those exist too. They’re a chance to meet folks from all over the country, see a new place and have some fun (however you choose to define that). Reader, I had fun. And eventually moved across the country to be with my person.
Honestly, I don’t give a lot of thought to my herpes these days. Since my partner and I both have herpes, we don’t take any special precautions sexually. I know my partner likely has both types of herpes, so there is a risk I could get HSV-2 at some point, but that’s an acceptable level of risk for me.
Herpes and other STIs don’t mean your dating life is over. It’s different, and it’s a bit stressful sometimes, but it’s far from over. Find good medical advice, look for support (searching Facebook for public or closed groups about herpes is a great place to start) and dip your toes back into the dating pool when you’re ready. In the meantime, there’s a whole community of people ready to support you. I promise.
This article first appeared on HuffPost US Personal
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