Two people smiling while a transparent version of one woman tries to hide her pain.

Hiding Epilepsy From My Family and Friends

Last updated: October 2022

Do you try to hide your epilepsy from your family, friends, or loved ones?

Yes. I do hide my epilepsy auras. This is something that I frequently do. I do talk openly about my health condition with my family, my partner, my friends, and my boss. However, I often keep them in the dark about my health status.

Hiding my epilepsy symptoms

Hiding my epilepsy from my family, friends, and partner is not a healthy practice. I don't hide because I'm ashamed. I do it so I can handle it on my own. I like to deal with my epilepsy myself. But I end up dealing with my epilepsy in a really unhealthy way as a result.

My family is aware of my diagnosis and they genuinely care about my health, but I don't enjoy talking about my epilepsy on a regular basis. Epilepsy is a part of me, it has an impact on how I feel in my body, on how I think, and on how I live. But it is a struggle to change everything about my life based on my health. And let's not forget I have to manage my dystonia at the same time (another condition I live with). It's a combo deal!

My epilepsy symptoms are scary for my loved ones

I have this deep pursuit of being independent. There is an unsatisfactory feeling of not being able to deal with things on my own. I struggle so much to explain my condition and feelings to my family and friends, as they don't know how to react or they are simply not in the same situation as I am in.

When I really can't handle it on my own, I do let them know. When I tell them, it is typically in the midst of a crisis because I can no longer control my symptoms. Then, panic breaks out in my home. My mother's expression changes as she dashes into the kitchen to prepare me a hot cup of chocolate. I have my sisters watching over me constantly to prevent a sudden fall.

But I want to be independent

I remember being alone for a month across the country without my family. My epilepsy was not in control as I had seizures twice a day. During this month away I had more than 5 times as many seizures. This never happened when I was with my family. There are a lot of factors that caused my seizures during that time. But I often wonder: Can I stay alone again? Can I be independent? All of these questions run through my mind.

I don't want my seizures to get in the way

I also don't want my epilepsy to impact others. Sometimes I feel like I'm ruining an entire event if I say I am feeling my aura. I don't like feeling like I'm putting this on my family and friends.

If I feel like I might have an epilepsy aura while my family is driving, I usually need to be alone or take a long walk and they need to stop the car. They have to wait for me until I'm feeling better from aftereffects, but they don't mind – but I can't help but feel bad. I respect how much they care for me and the time they devote to me. I've learned to really appreciate those who are around me.

Always trying to grow with epilepsy

I'm constantly wondering whether or not I'm living my life how I want to. Obviously, I choose to be happy despite my epilepsy. It's a gift to be the way I am. But it takes work to develop the necessary skills to live independently. I am aware of my limitations, so all that is left to do is concentrate on acquiring the necessary skills.

I believe I need to figure out how to solve this puzzle. The beauty of life, in my opinion, is discovering our individuality within by continually developing ourselves.

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