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Living with Epilepsy: Fake It Til You Make It

Lauren’s Story

I’ve always been good at (somewhat) ignoring the struggle. I guess I’ve made a habit of fake it til you make it to get by with epilepsy. Many people who meet me say I have a calming energy–like I am at peace. This includes co-workers, friends, and acquaintances. I am constantly surprised, because I never quite feel that way. All through college friends and students knew me as this happy, energetic butterfly without a care in the world. Little did they know I was having weekly absence seizures and all the while I was pretending like nothing was wrong. Doctors had attributed these episodes to stress, but I knew they were something more. I would not let people think that my dizzy spells and horrible memory were the cause of stress. My ego was too big. So I faked my way through them.

Faking it til you make it (not always the best plan…)

I had undiagnosed absence seizures from the time I was approx. 13 to 24 years old. How did I have seizures for 10-12 years without people really noticing? I kept moving. I pretended like nothing had happened. These seizures would even happen while I was teaching in front of a classroom during Graduate School, yet I would routinely go to my desk in the middle of a lecture, like I was simply going through papers. I’d come out of them needing to remember where I was and what I was doing, but I found a way to always make it look like I was just in deep thought.

Why this charade? I held myself to the highest standards: I had to graduate, I had to be healthy, I had to constantly be put together; “Normal”, which to me at the time meant having no problems. So, I kept these episodes to myself. I was ashamed of them.

When I had drop seizures, even after breaking bones, I would tell people that I had tripped. I didn’t know what else to say. It didn’t help that the memory of falling in the first place was a blur.

“And you know that when the truth is told
That you can get what you want, or you can just get old
You’re gonna, kick off before you even get halfway through.”

Vienna by Billy Joel

Words of Wisdom

I heard these Billy Joel lyrics, from the song Vienna, shortly after my first Grand Mal seizure at 24 years old, while I was in a horrible state of depression. When I feel like I am not accomplished enough, they help me slow down to this day. Health must always come before reaching my goals.

Loving Myself

While I no longer have weekly absence seizures, it seems like I still am able to “fake it” to this day. I am now on Epilepsy medications that make me feel somewhat manic. I have days where I am anxious, days where I am depressed, and days where I am on top of the world.
The photos are meant to show the difference between how we often feel vs. how we look. When I wake up depressed, I often feel like I am forever stuck in the mental state that I was in during my last EEG: strapped to a hospital bed for 7 days, forced to have seizures, and unable to have visitors due to COVID restrictions.

Yet on days that I feel this way, no one seems to see a difference. I only really reveal it to my parents. When I am with them, they seem to receive the blunt end of it. Why? Because I know that they will love me no matter what. After writing this, I can clearly see that my greatest struggle through Epilepsy has been learning to love myself. I will always work on that.

Fake it Until You Make it?

I still “fake it”, because what else is there to do? I either keep having seizures, or I continue to take these mood-altering medications that seem to prevent them. Risk of seizures vs. mental health issues? There is no right answer. But I know that I am not alone. There are millions of people who are not on Epilepsy meds who suffer from anxiety and depression on the daily. And there are millions of people who might look perfectly happy, but who are struggling beneath it all.

I am very undecided about whether the ability to fake my way through manic tendencies is good or bad. I think it often makes me feel more alone. But that is why we have this blog. I hope that what I wrote will help someone out there feel less alone.

 

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