Dating with HIV: will I ever have sex again?

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Dating with HIV: Will Jessica ever make love again?

What is it like dating with HIV? This is the true story of Jessica, an HIV positive woman, learning to love again after her diagnosis.

[Edited podcast transcript – Sex Like This Podcast | S1 E1 Two Wrongs and Mr. Right]

Jessica

It’s so weird to lose brain function because you just always assume that you will have control over yourself, and when you don’t, and you actually are going out of control, there is no way to stop it.

Nicole Edwards           

There are over 7 billion people on the planet, and most of us are looking for love. So, if we all couple off, you know, unless you’ve come up with a more interesting arrangement, that means there are theoretically about three and a half billion people in the world that could be the one for you, and counting. So, with all of these options, why do we always hear the same love stories? The able-bodied, hetero, storybook version of what it’s like to fall in love is told over, and over, and over again.

Well friends, that stops here. You’re listening to Sex Like This. A podcast brought to you by Uncomfortable Revolution about sex and dating with a chronic illness or disability. I’m your host, health journalist, Nicole Edwards.

Jessica

He was someone who I went to elementary school with. We stayed in touch through junior high school and high school. We both had respective partners. We get together once a week probably, like all of us, just hang out, and yeah, and we just always stayed connected. Honestly, it’s one of those things, it never crossed my mind. I never had a crush on him. It wasn’t a thing. His ex-girlfriend in high school hated me. She was convinced that we were secretly in love, which is not true. Say what you want, because we did end up being together for so long. We would not … It never even crossed my mind, and then it was literally like zero to a hundred, and it was like one of those weird things where you just look at someone, you just see them differently. You just … you’re like, “Hey, I’ve never really considered this guy. Maybe you should consider this guy.”

Nicole Edwards

That’s Jessica. She’s one of those people that’s instantly relatable. She’s bubbly, friendly, mischievous. I’m guessing she was the kind of kid that convinced her friends to skip class in school. Anyways, she and her friend from high school made it official. They moved in together, and after 10 years they even got engaged. But, like a lot of long-term relationships, especially ones that start so young, Jessica was starting to get restless after a while.

Jessica

The problems, the disconnects started to add up. I don’t know, and then I just met someone. We’re getting into it and I’m just sort of like, “Who is this guy?” Like, “What? This is the best conversation and the most electric feeling I’ve had in just such a long time.” And I was just like, “Who is this guy?” Like, you meet thousands of people, all the time, and it’s crazy when all of a sudden you meet someone, and it just feels a thousand times different than those other thousand people you’ve met.

Nicole Edwards  

So a few months go by, and Jessica and this new guy are still talking. One night her fiancé gets a call from work saying that he’s needed on a last-minute business trip.

Jessica

And I think I knew exactly what would happen the second he got on that plane.

Nicole Edwards          

You might be able to guess what happens next. Jessica and the new guy finally scratch the itch and sleep together, but it was messy for them both for more reasons than you’ve already heard. That’s because her crush was also in a long-term relationship when he slept with Jessica, and the situation, they both agreed, was just a little too messy to last, so after a while they ended up breaking it off. Then Jessica decided she was going to tell her fiancé what happened, and the two of them broke it off too. And with that, Jessica found herself single for the first time in a decade.

Jessica

Bumble, Tinder, Feeld, which many people don’t know about it. It’s kind of like if Grindr was for straight people. I just went on as many dates as I could. I just filled like all the apps, and I literally, I think I went on a date with a different person every single day for two months. But basically, on early April, I started to feel like I had a yeast infection, so I went to a clinic. Three days later, I’m sitting in bed and I have probably a 103-degree fever. So, I just, after a few more days, finally went to this clinic, and basically, they take a look, and the lady basically, pops her head up and goes, you have herpes. And I was like, “What? Fuck.” So, they gave me antiviral medication, told me it would go away in a couple of days, and I just start getting sicker, and sicker, and sicker. I couldn’t eat anything. I was shedding weight like crazy. I probably dropped about 10 pounds in two weeks, and my parents are just looking at me like, “Please go see the doctor tomorrow. Something is wrong.”

Nicole Edwards

Then Jessica says she started to feel really confused. She’d been dodging work emails for a while as she tried to shake this fever, but there was this one client she couldn’t put off, so she pulls herself together and gets into a cab, and then when she gets out of the cab she realizes that she told the driver to take her to the completely wrong place. And Jessica knows the city like the back of her hand, so when it dawns on her after she’s gotten out of the car that she’s in the wrong neighborhood, she gets really freaked out by her mistake. She can’t imagine how she could’ve made it.

Jessica

Basically, what’s happening at that time was my brain was starting to get the infection, and I really was confused. I also didn’t know why I was in this wrong place. It’s so weird to lose brain function, because you just always assume that you will have control over yourself, and when you don’t, and you actually are going out of control, there is no way to stop it. Like, it was happening, and I was completely at mercy of it, and so basically, I finally get to this thing, and the second I walk in the door, I faint.

Nicole Edwards          

At this point, Jessica finally realizes that she probably has something more serious than the flu, and she goes straight to the emergency department.

Jessica

I wake up the next morning in the hospital, and my arms didn’t work. I started losing all of my function. Like everything that connects to my brain started going away, so I lost all motor ability in my arms, I couldn’t move them. I started to feel it in my legs. I would get these crazy spells of vertigo and I would literally get thrown to the floor, and I couldn’t move and I’d be in paralysis.

Nicole Edwards

After a few days in the hospital and a bunch of tests, she gets a diagnosis.

Jessica

Herpes encephalitis, which is basically, the idea that you have herpes, and the infection has spread to your brain.

Nicole Edwards  

So, Jessica’s herpes turned out to not be as manageable as doctors had initially thought. That’s because the first doctor she saw didn’t quite have all the information they needed. And frankly, when Jessica wound up in the hospital, she didn’t have all the facts either. She was about to receive one more diagnosis.

Jessica

They come in and they go, “We took an HIV test, and it came back inconclusive. And we’re going to redo the test right now. And we want you to know that the chances of it being a false positive are really, really, really low.” I couldn’t believe it. Like, I could not believe it. Because I was told I had herpes encephalitis, so I was like, “Oh, the reason this is happening is because I have herpes. Cool. Case fucking closed.” And it turned out to not be like that at all. I actually shed the herpes virus. It wasn’t just, “Oh it’s in me.” I was like having an outbreak at the same time when I was experiencing seroconversion, and the combination caused the infection to just erupt in my body, and went straight to my brain, and basically, that just became a super deadly combo.

Nicole Edwards  

Just a side note here, after a person contracts HIV, it takes a little while for it to show up in tests, so, seroconversion, simply put, is when HIV is in someone’s system, and the body is starting to react to it. It’s the point where indicators of the virus become traceable in blood tests. So, Jessica informs everyone that she hooked up with on Tinder that they need to get tested. Then she calls new guy. Remember – the one she met before splitting up with her fiancé.

Jessica

I was like, “Hey, you know how like I’m now in the hospital, that’s because I have HIV.” And he basically, immediately went and got tested.

Nicole Edwards

Turns out that new guy did not have HIV, and after Jessica gets out of the hospital, she stays with her parents for a while, and then finally decides it’s time for a place of her own. Physically she’s on the mend and she has a lot to think about. And it turns out that new guy has been thinking about her.

Jessica

He kept kind of checking up on me and coming over and just like making this really big effort, and I got this bed delivered from Ikea and it needed to be assembled and my arm still didn’t work, and he assembled the bed for me. He’s halfway done assembling this bed, and we’re just sitting on the ground. He’s drinking a beer, I’m drinking a water, and he just looked at me and was like, “People can do what they want, but like I’m not going anywhere. I’m not afraid of you. I’m not going to run away from you. I’m not afraid to touch you. I’m here.”

And he just gave me this huge hug, and we just cried, and I don’t know, it just meant so much to me. And yeah, we just started kind of flirting again, and talking again, and reigniting those feelings again, and then something that just showed so much his character, and just how amazing he really is, and how amazed I knew he likely was, was just his, yearning to learn and to be educated, and to walk through this with me. Kind of navigating, what undetectable means. What are the limitations? What does it mean to be in a sexual relationship with someone who’s HIV positive, and isn’t at an undetectable status yet?

Nicole Edwards

So, being undetectable when you have HIV, basically, means that there’s so little of the virus in your system thanks to medicine, that it’s almost like the HIV isn’t strong enough to jump from one person to another. So, if an HIV positive person who’s undetectable has sex with somebody who doesn’t have HIV, the person who’s negative won’t contract the virus. Someone with an undetectable viral load isn’t contagious. Amazing. Right? But Jessica says, despite what doctors were saying about being undetectable, she was still really nervous when it came to her and her guy having sex.

Jessica

It’s HIV. You just assume it’s fucking rampant, and you can just give it to somebody. And ah, like scary. Things that are huge pieces of this, we had no idea, and so we’re learning it together, and we just both became kind of obsessed with educating ourselves and getting really well versed in everything.

And then by the time I was undetectable, it was like we had been through so much education that we were able to really take that step with real confidence. And yeah, I mean it was a huge process. Those three months were heavy. Like, heavy conversations. And it’s really hard when the doctors are telling you you’ll be undetectable. You can never give it to them. You’ll be able to have sex without condoms. You will live a full and healthy life. You will just take one pill a day and it really won’t inconvenience you. You will live as long as everybody else. And when they’re telling you all that stuff, you just think they’re fucking out to lunch. Like, you just think they’re out of their mind. And it took a really long time for us to both mentally feel like what the doctors were telling us was true, but just internalizing that, and not just knowing it was true, but really believing you really are just in shock. Like, you cannot believe that they have basically, figured this out. At some point you just go, “Okay, well it must be true, because we’ve been having sex for four or five months now, and you ain’t got it.”

Here’s what I want to say. When I was diagnosed with HIV, basically, the person looked at me and said, “You will have sex again. Don’t worry, you will have sex again.” But I think what might be a better build on that is, “You will feel sexy, sexual and confident again. And then because of that, you will have sex again.” And I have lived through it. I have completely realized how true that is, and my sex life now is the best it’s ever been. Yeah. It’s an HIV love story

Sex Like This is an Uncomfortable Revolution podcast hosted and produced by Nicole Edwards.