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I Have Unpredictable Seizures. This Is How I Have Sex

Photo by Jonathan Knowles via Getty Images

A series about sex and stigma.

Talking about epilepsy with new partners can be challenging-a part of you is always afraid. Will he want to go out with me if he knows I have epilepsy? How will he react to a seizure? You can't be sure if that person will understand the condition. You don't know how they'll see you.

Still, I told people I dated right away that I have epilepsy. (I'm passionate about the topic-I actually study epilepsy in my PhD, and I try to spread awareness and fight stigma in all aspects of my life.) I don't think most of the dates I told really thought about what my seizures might mean for sex, though. I had a lot of awkward experiences earlier in life because people didn't know how to respond when I did have a seizure during sex. Stress and fatigue are two of my major seizure triggers. Not knowing how someone is going to handle it if I have a seizure during sex can be stressful, which then makes me more likely to have a seizure during sex. For a long time, it went back and forth in this cycle. Maybe 30 or 40 percent of the time I had sex, I had a seizure, and the person I was with would either freak out and leave or finish having sex, but ghost me immediately after that night.

Chip: Before I met Isabelle, my only exposure to epilepsy was seeing someone have a seizure in my freshman year of high school. I didn't know a lot about the condition; I don't think I picked up on any cultural stigmas against it. I grew up with cousins who had disabilities, and I always got mad when people stigmatized them. Also, before I met Isabelle, I dated other women with conditions like diabetes and . So when we met on Tinder and Isabelle told me she had epilepsy, I was just like, "Ah, OK."

The first time Isabelle had a big seizure around me-a tonic-clonic-was four or five months into our relationship. It was a bit frightening, but she'd told me a bit about them and what to do in those moments. Luckily, for everything else, we have Google. I did a search that led me to Epilepsy Foundation resources , and I followed their guidelines: I turned her on her side, made sure she could breathe, and stayed with her.

Early on, Isabelle had a seizure about once a month. Between experience, reading up on epilepsy, and direct instructions from Isabelle and her doctors, I've learned what to do in response to a lot of different seizure situations-things like when to give her rescue meds , or when to call 911.

Isabelle: We never really had a conversation about what to do if I had a seizure specifically during sex. When I eventually did, we figured out how to handle it using the things we had already done and discussed about seizures.

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Chip: Sometimes, if you said, "I'm not feeling well tonight," I thought about that in terms of an epileptic aura , an early seizure warning sign that some people with epilepsy experience, and would internally decide, Let's wait until some other night to have sex.

Isabelle: If I'm not feeling well, it is more likely that I'll have a seizure during sex-I sometimes still initiate sex, though, and, often, I do end up having a seizure later.

Chip: Eventually, I noticed that Isabelle has more of those staring moments when our sex is vigorous and as we approach orgasm. It's kind of like learning to pace yourself in sports: If you push too hard for too long, it may cause problems. I just learned when to pull back and take a more moderate pace for a bit. When it seems like Isabelle might be experiencing an aura, or when she does have a seizure during sex, I pull away for a bit and ask, "Are you doing OK?" If she is and wants to keep going, then we do.

Isabelle: We've been together for four years. At this point, Chip really knows my triggers and my seizure behaviors. He's usually spot-on in figuring out when that's going to be an issue. Sometimes, my auras fade without leading to a seizure. So, if I think an aura might fade, or I feel it starting to fade, we might continue with sex.

Many times, after I've had a seizure, I'm not sure where I am for a few seconds. I'm blanking out in a different space. We almost never decide to continue with sex after that. If the moment is gone for me, Chip's fine just letting it pass.

Chip: The last things I want to do are trigger a seizure for Isabelle while we're having sex, or have sex with her while she's feeling confused or disoriented after a seizure.

Isabelle: If you have a seizure during a sexual encounter, it can really influence your bond, and how safe you feel during that activity. We both don't want to create this weird association between seizures and sex. If I keep having them before or during sex and connecting those experiences, things could go downhill.

Chip: We can always just have sex some other time. We don't set aside specific times for sex. We're still pretty spontaneous.

Isabelle: Maybe when we get older, we'll have to schedule sex. My memory issues could come into play then. Basically, when you keep having seizures, like I do, your brain cells are dying every time. In 2017, I went into something called status epilepticus . I was in a constant seizure for more than five minutes. I went into a coma, and my doctors thought I was going to die at one point, but I woke up. Since then, my memory has gotten pretty bad. Still, if I put regular sex dates on my calendar I would probably be able to remember, even with this issue.

Chip: Overall: Is epilepsy a thing in our sex life? Yes. Does it really affect our sex in a major way? No. We have a healthy sex life. We have sex a couple of times a week. Epilepsy doesn't define our sex. Honestly, our two cats are really the biggest barrier to our sex life right now.

Chip: Well, we do have to move them out of the room to have sex. That's a bigger thing for me.