Epilepsy, a neurological condition that causes seizures, affects one in 26 people for at least a portion of their lives in diverse and sometimes unpredictable ways. The causes, visibility, frequency, and overall effects of people’s seizures, and the things that trigger them, often vary from case to case. The lack of uniformity among experiences of epilepsy contributes to misconceptions and stigmatization among people who don't have the condition, which may lead them to socially exclude people who do, including as potential sexual partners.
About half of men and a third of women with epilepsy report that it has notable and highly varied effects on their sex lives. Some people say they have lower-than-average libidos and increased trouble with erections, bodily lubrication, or orgasming. Many people have seizures during sex, just as they might at any other time. In some cases, elements of sex itself, like orgasm, or something parallel to the sexual experience, like stress, physical exertion, or intense emotions, can directly trigger seizures.
Researchers don’t yet understand what causes most sexual symptoms among people with epilepsy; any one symptom could stem from multiple causes related to the condition. A lack of sex drive may reflect the effects of epilepsy on areas of the brain associated with sexual functions or on hormone levels, or it could derive from the effects of medications used to manage epilepsy. Researchers do know that, in many cases, epilepsy’s effect on sex either stems from or is exacerbated by stigmatization: Social exclusion can cause or exacerbate anxiety and self-confidence issues, which can translate into sexual issues. The fear of partners' adverse reactions to seizures during sex can lead to the very stress that may increase seizure risks in the moment.
No matter their origins, many of epilepsy’s potential effects on a person’s sex life can be mitigated or navigated with the right mixture of support and treatment. Although sex-focused resources were hard to come by until relatively recently, modern epilepsy groups publish guides to the condition’s potential effects on sex and how to talk about them with their partners and doctors.
People with epilepsy are increasingly speaking out about their sex lives. VICE recently talked to Isabelle, who has epilepsy, and her husband, Chip, about the condition’s effects on their sex life.
This interview has been edited for length and clarity. Isabelle and Chip’s real names have been withheld to protect their privacy.
Isabelle: I’ve regularly experienced multiple types of seizures throughout my life. Some are absence seizures, where I temporarily lose awareness and stare off for 10 to 15 seconds, then resume normal consciousness. Others are focal seizures, where I stare off and make small involuntary gestures or motions—I usually turn my head to the left.
Then there are tonic-clonic seizures—those are the ones you see depicted in the movies. I shake. I become very stiff. Foam comes out of my mouth. My eyes roll back in my head. After those things happen, I wake up, and I still can’t move my limbs or talk. Or, if I can talk, I slur. Usually, I’m out of commission for a day or two after those very traumatic events. If I'm actively seizing for more than five minutes, I have to go to the hospital.
I’ve never experienced any problems with my libido or arousal, even though I’ve been on almost a dozen different medications and sexual side effects are an issue for many people on some of those medications. I do have seizures during sex sometimes. I don’t think I’ve ever had one of those big, terrible ones—usually, I just stop responding and stare off.
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 IBS. 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.
Were you ever afraid to have sex with me because you thought it might trigger a seizure?
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.
Isabelle: Our cats are not a barrier.
Chip: Well, we do have to move them out of the room to have sex. That’s a bigger thing for me.