Welcome to Club H!
Two months ago today, I was on my patient portal reviewing the results of my STI screen. I was most anxious to see the results of my herpes blood test, which I had to request specifically since it's not part of the usual STI screen.
I was in a hotel in Portland with my mother. I’d done an interview that day to gather information for a freelance article I was writing. She and I spent the night intending to spend some time roaming the antique shops in Sellwood the following day.
I saw the result and panicked. I was at the desk on my laptop, and she was in bed across the room watching TV. I started crying, of course I did. She was confused. I told her I’d just read some lab results that were not good, and we’d need to return home in the morning and I’d need to go into urgent care. She told me she was sorry and everything would be OK.
I didn’t tell her I’d just found out I had genital herpes. Normally I don’t keep information from her, we’re very open with one another. However, she’s 83 and deaf. Those factors, along with being a generation behind me, would make it very difficult to educate her to the point she be unconcerned about getting herpes from me.
I went into the hotel room bathroom, where she couldn’t read my lips, and tried to get the on-call doctor. I had to call the after-hours service three times, and the doctor finally called an hour and a half later. He was not helpful. Of course, I was crying hysterically into the phone. I’m rather difficult to deal with when I’m that worked up.
At the same time, I was frantically texting the last man I’d slept with, a lovely man I’d matched with online and met up with a month previous when I was vacationing in Louisville. We’d continued to text after I returned to Washington and had developed a lovely friendship.
I also began texting two girlfriends with herpes, one on the East Coast, and one in Texas, so none of us were in the same time zone. Those women stayed on the phone with me for hours, all through the night, until they were certain I was convinced this was not going to destroy me, it would not ruin my future, and my worth was not based on the fact I now had this disease.
Now looking back, I have one big regret. I wish I hadn’t texted the man I’d been with in Louisville. I even called and left him voice mails – and it would have been around 2:30 am his time. I was beyond panicked and I wanted him to know he’d given me herpes. I took screen shots of the lab results and texted them to him. I was beside myself.
I was never accusatory. I kept saying I knew he wasn’t the type of person that would have had sex with me without telling me first and then railed on and on about how stupid I was for not insisting on a condom.
Right after we had sex, I’d taken one of the antibiotics I take to prevent the UTI I always get with a new partner, joking I’d be able to thank my doctor for the prescription when I got home.
“She’ll be happy for me! But the first thing she’ll ask me is if I used a condom,” I said, laughing.
“Just tell her we did!” he said, laughing with me.
Texting my girlfriends through the night, I had some epiphanies. I realized this was not a new infection. This was something I’d been dealing with for a very long time. Many years, in fact. I had always referred to my recurring condition as “the chronic yeast from hell”, but I realized by morning those episodes had been outbreaks. Although I'd been tested many times, including herpes blood tests, I'd never had a positive result - for any STI. Based on that, I'm assuming I've had a few false negative herpes blood tests.
I woke the next morning to texts from my Louisville friend telling me how horrible he felt and how he’d ruined my life.
“First of all, you didn’t ruin my life,” I responded. “Let’s just wait. I need to get some more information, but I’m thinking now I’ve had this for a while. I don’t believe I got this from you. Regardless, if I did, I know you did not knowingly infect me. You’re a good man, a kind man, you wouldn’t do this to anyone, ever.”
Unfortunately, it was too late to save the friendship. I’d immediately jumped to the conclusion he’d given me herpes when I know now beyond a doubt he hadn’t. I’d bombarded him with texts and voice mails throughout the night, panicked, crying, desperate to talk to him. I jumped to all the wrong conclusions and behaved in ways that made him feel like absolute shit when he’d done nothing wrong. The damage was done. He hasn't spoken to me since.
Here are some of the key things I learned after I saw my positive lab result online, throughout that night, the following day, and in the days and weeks to follow.
I am non-monogamous. When I have sex, it is casual sex with friends and an occasional one time meet. So, I’m sharing what I’ve learned from a point of view and a lifestyle that may be very different from yours.
First and foremost, don’t react immediately. Talk to your doctor, decide jointly if additional tests are needed, and spend a bit of time on the internet educating yourself. If you have friends that have herpes, talk to them before you draw any conclusions.
In other words – no sudden moves!
If you’ve had more than partner, do not assume the last person you slept with is the person who infected you. Wait a bit of time before you speak with them. Get centered, get calm, get a bit of knowledge under your belt. Then contact your last partner and ask. Don’t accuse them, just ask. As calmly as possible.
If they tell you they don’t have herpes, ask them to get tested. Educate them on the type of test to request – as there are some outdated tests that have very high false negatives, namely the IgM. If they’re decent, they’ll get tested and share the results with you. If they’re not decent, you probably won’t hear from them again. And that’s OK. Be thankful and keep moving forward.
Decide if you are going to share your diagnosis with previous partners. I decided I would. This is a very personal decision – I am not making a recommendation to share or not to share. I decided I would disclose because I had decided to go public with my diagnosis.
Most of my previous partners are also friends with whom I have remained in contact. When I told them, I did not get one single negative or shaming response. So that was a key learning – even men with whom I’d had casual sex treated me respectfully when I disclosed. In fact, they all thanked me for letting them know. Either I’m lucky, or I generally choose kind men of good character to have sex with. The latter for certain, because I don’t believe in luck. (And the fact I’m no longer attracted to bad boys has a lot to do with it too, I’m sure.)
I recommended they get tested and shared with them information about the type of test to request. I don’t think any of them did get tested. I asked one friend a couple weeks after I’d let him know, and he responded, “Nah, we used a condom and I’ve never had any symptoms, so I’m not worried about it. But I’m glad you told me.” Then we discussed getting together next time I was in town. So, how’s that for surprising?
Furthermore, I have always held the belief if you expect the best of people, you will find it. You will occasionally be horribly disappointed, and even horribly hurt. But I firmly believe most people are decent. I also believe because I most often give people the benefit of the doubt, I draw kind people of good character into my life. And that will not change, regardless of the fact I have herpes.
And that leads me to the most important learning:
Herpes doesn’t change who you are as a person.
You are not defined by herpes, just like you are not defined by the color of your eyes, or the size of your ass! You are defined by your character. Character speaks for itself.
Just two months post diagnosis, I have a lot more research to do and a lot more to learn. I’ve joined several support groups as well as several social groups – not just singles groups – but all-inclusive groups.
All of the groups are private, and you have to know someone that knows someone to get an invite. And thanks to my girlfriends that spent that first night on the phone with me, I’ve gotten some great invites to some great sites full of great people.
I’ve already had some great conversations, with both men and women. Lots of support, incredibly positive support, and lots of education. I'm learning about the myriad of ways people manage their condition medically and mentally. Armed with this information, my doctor and I have collaborated on a way to manage the condition with prescription drugs and supplements.
I saw a meme today something along the lines of:
“All you single people are wondering where all the good looking, smart, fun people are, since they’re not on your dating sites anymore. Well, they’re all over here with us!”
It’s not the club I would have picked for myself, but I’m glad I’m part of the party. I am coming to terms with all of it, slowly, but much faster than I initially anticipated. To my amazement, getting this diagnosis and coming to terms has been a far more positive experience than a negative one.
I have great hope for my future. Because I am who I have always been, and character speaks for itself.