Sex and Epilepsy

Friday, April 14, 2017

Dear Patrick: I am a teenage guy who has epilepsy. Is it okay for me to have sex? I am really worried that it might make me have a seizure. I am still living at home with my parents, and it’s usually my mom who takes care of me if I have one. I take the medication like I am supposed to even though I don’t like how it makes me feel. Someday I’d like to be able to live independently, partly because want to have enough privacy to be able to bring somebody home! Right now, when my girlfriend visits, it’s “keep your bedroom door open” rules. I’m 19, for heaven’s sake!


Dear Shaky: Epilepsy can have a lot of different effects on sexuality. The most troublesome or common are probably social things like gathering enough confidence to be able to approach someone you want to date,  figuring out how to tell someone you like that you have epilepsy, having your plans disrupted by a seizure, or adjusting to taking medication when some of its effects are not enjoyable. The central question that everyone wants to ask, however, is whether having sex will cause seizures. The answer to that is: yes and no. Despite the fact that sex is a well-nigh universal human pleasure, and one that we are often prepared to take great risks to enjoy, there is very little research on the neurochemical changes that might control or at least affect things like libido, sexual performance, orgasm, etc.

Anecdotal evidence is that some people do have seizures during or after sex. But we don’t know whether this is due to sexual behavior or desire alone, or whether it is also caused by going without sleep, forgetting medication, changes in eating patterns, being tired, feeling any strong emotion, etc.

What does seem clear is that being able to talk about epilepsy is important to your future as a sexually active person. You need to be able to clearly and briefly explain it to a person who knows nothing about the condition. And you need to decide when you want to tell somebody about it. Generally, in close relationships, the earlier you make disclosures like this, the better. But of course, the trick question is: How do you know it is going to become a close relationship? I prefer to have as few secrets as possible, so there are a great many people who know things about me that others might consider too personal for public consumption. Unless you think something bad could result from telling people, I don’t think this is a thing that should worry you. It isn’t your fault that you have epilepsy, you are not a dangerous person, and the worst thing that could happen is you might have to ask someone other than your mom to help take care of you.

Many people with health issues feel concerned about this. We can feel quite guilty about it, as if we were putting an unreasonable burden on our loved ones. I would ask you to remember that we ALL need care. We all need help. There’s no such thing as a human being who doesn’t need other people to give them a hand now and then. So don’t worry about letting someone know what your symptoms are, how frequently you might have seizures, what one looks like, and what they ought to do for you while you are not thinking clearly. The stereotype of epilepsy is based on the worst possible sort of seizure, so be prepared for some catastrophic thinking that you can correct with accurate education.

Anxiety is the enemy of sexual arousal. (Well, it’s actually one of the enemies, along with resentment, self-hatred, and homophobia.) I bring it up here to just point out that if you have a seizure that screws up a romantic evening, or if you have one during sex, that can cause worry for you and your partner. So it’s very important to talk about it. You shouldn’t think, well, if I can get through just one awkward talk about my illness, that’s all I need to endure. Ongoing health issues require ongoing conversations. Partners of people with disabilities often think of themselves as the exclusive care-givers. But in a healthy relationship, everybody takes care of everybody else. You can provide comfort and a nonjudgmental ear to a partner who says, “I got really scared when this thing happened. I don’t know if I want that to happen again.” This isn’t necessarily a blanket rejection, so listen calmly and be sweet to them. Let them know how important they are, and how sorry you are that he or she got frightened. But also let them know that they did the right thing, you are okay, and they can relax about it all.

Men with epilepsy report that they have greater than average problems with sexual desire and with the ability to maintain an erection. Women, too, report lower-than-average libido, problems experiencing orgasm, and issues with vaginal dryness and pain during sex. These problems may be due to the illness itself or to the medication. It’s important to have a doctor you trust so you can go to that person with any concerns you might have. Caring partners can do a lot to help with all of these issues. Sexuality is a gift, so enjoy it (safely) as much as you can!

Every teenager (which you technically are) has important decisions to make about when to start being sexually active. One signpost is, can you take responsibility for preventing disease and conception? If you are not old enough to be able to cover these basis, sex needs to wait till you can manage it. (By the way, on the basis of this rule, some of my friends in their thirties ought to consider waiting a bit longer.) Your parents need to understand that every child becomes an adult. The adolescent years are a good time to start taking on appropriate adult responsibility and learning how to be more independent of your family. If your girlfriend wants to be sexually active, and you do too, it may be time to talk to your parents about the fact that the two of you need more privacy. Does she know how to take care of you if you do have a seizure? If so, then I think privacy and locating it will become a priority, with or without parental cooperation. In this regard, you are no different than any other person your age.

Please feel free to write back if you have any concerns that were not addressed.

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