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What People Need to Understand About My Epilepsy

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It is estimated that 2.2 million people have epilepsy, according to the Epilepsy Foundation.

When I tell others I am an epileptic, it seems the general public jumps to conclusions and that epilepsy is only a condition where people pass out and lose control of their motor movements. But there are many different categories of seizures, and this is often completely misunderstood.

During some seizures, the person remains conscious with less severe symptoms. It’s like a short disruption of a train of thought or memory. Some seizures can pass in only a few moments, and the episode may not even be noticed by someone on the other side of a room. When the episode is over, the person can continue their day.

Other relevant stories:
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Can People with Epilepsy Drive
How Does Epilepsy Affect Daily Life 

Unfortunately, when I tell others this about myself, it often leads to an interrogation from a bystander. People make assumptions, and I am treated with caution or as a liability. For me, one of the main struggles with epilepsy is not the symptoms, but the insensitivity and misunderstanding of people around me.

Because of my condition, I don’t have a driver’s license. It’s upsetting when strangers at the bus stop ask questions like, “But don’t you want to drive?” A former employer once asked me where I parked, and after I disclosed why I couldn’t drive, I was terminated. I have clearance to ride a bike by a doctor, but even after informing people that I’ve never had an episode while riding, they seem doubtful.

I’ve had awkward conversations with acquaintances after they learned I had brain surgery, asking questions about my stage in recovery. In the past, I felt it would help make me appear more capable by disclosing facts about my condition, thinking I was reassuring people. But over and over, I walked away wishing I had said nothing about it.

People don’t realize managing the small things about epilepsy can be hard, like having to explain why my wallet has to be large enough to fit pill boxes or that my phone’s six alarms are actually medicine reminders. Travel limitations in Los Angeles have become a lot easier to handle as their metro transit system acknowledges epilepsy as a disability, and epileptics with partial seizures are granted discounted bus passes, despite having no visible symptoms.

Epileptics can hold relatively normal lives with college degrees, families and children. They can compete in athletics and perform on stages. 

I encourage work towards better informing the public on the wide spectrum of this condition, which will help members of the community dealing with the disorder to better manage something beyond their own symptoms.

Originally published: September 26, 2016
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