Epilepsy,  Marriage,  Personal

Breaking the Ice on Intimacy and Epilepsy

Yep, I’m going there. That awkward, not-often talked about subject coupled with epilepsy. When epilepsy and seizures decide to kill the mood for intimacy in a relationship. Sometimes we might feel self-conscious of our bodies, our emotions, or a deep sense of worry that a seizure will interfere. Sometimes, we might not feel anything at all. A lack of desire to want to be intimate with our partners.

We shouldn’t punish ourselves with guilt and shame for these feelings. This is not uncommon for anyone living with epilepsy. As many as two-thirds of people with epilepsy face some change in sexual desire. Have you ever found yourself questioning why you lack the desire to want to be intimate with your partner?

After two years of being on epilepsy medication, adjustments and changes, I took notice of a change in my behavior when it came to intimacy. I became mildly self-conscious of my body and worried of the thought of a seizure striking in the midst of intimacy. I felt as though someone had pulled the plug and my emotions began to fade over time. At the time, I couldn’t make sense of it. I bottled my suspicions but they silently continued to gnaw at me. I was concerned that my behavior was sending the wrong message but how could I explain a behavior that I didn’t understand? How do I research that? Where do I begin?

I’d built a wall around myself because eventually, I became emotionally dull when it came to intimacy. Yet, inside I was screaming for answers and a way out of this hell. Finally, I couldn’t take the gnawing any longer and I broke down to release my suspicions to my husband.

Had it dented our marriage? Not one bit. We decided that it was time to talk to the doctor.

Doctors often are reluctant to bring up such topics during a visit, and it’s not always comfortable talking about intimacy. According to one study, only 13% of epilepsy patients have had a conversation about intimacy with their doctor.

It’s important that we start that conversation with our doctor. Be sure that they know about all the medicines we’re currently taking. We might not even realize that our medication is affecting our sex drive until we have switched to a different medicine. A change of medication could be all that we need.

Whatever the reasons behind the silence, there is no need to suffer.

Tiffany Kairos

I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!


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    Way to go for broaching this subject! So many medications affect desire – be they birth control pills, antidepressants or anxiety meds, seizure medications, and I’m sure others, but those are just the ones I’ve had experience with affecting me. It’s so important to keep the communication lines open with your husband or wife so they know you are not rejecting them. And I think it’s also good to remind ourselves marriage with epilepsy is going to look different than the average marriage we see and hear about – and that’s okay!

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    Alethea Fye

    I absolutely have to agree, there is no reason to suffer! Thank you! Excellent article about your journey of epilepsy and intimacy. I feel you, Tiffany, have given those of us with any chronic illness, steps that we can use to help ourselves when intamacy is lacking in our relationship. You relate to many of us even though we dont all share epilepsy, or we are not close in age. That to me, is a strong talent in your advocacy.
    Thank you for coming out from behind that wall, that is possibly the toughest part, realizing there is an issue or better yet, being able to discuss the issues. Communication with our partners is key to strong relationships especially when it concerns intamacy or it should be. Then there’s the communication between doctor and the patients . I wasn’t really shocked to see the small % of individuals with Epilepsy who actually talk to their doctors about such a sensitive, emotional, and extremely important issue. I’m sure the low numbers apply to other illnesses as well.
    Thank you again Tiffany for this very informative article. It definitely made me think about my situation and what I need to do to improve it. I’m sure others will as well.

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