Ending the Shame About My Seizures in the New Year


We’ve closed down another year, and my wish for 2018 is that together we end the humiliation many of us with epilepsy feel. To begin, we need to ask the simple question why. Why do we feel this way in today’s culture (at least the culture in the area where I live)? What about other conditions that cause seizures? For instance, are people with diabetes or hypoglycemia embarrassed? They also have seizures.

I hid my epilepsy for more than 30 years before escaping the secret, bringing it to light. I’m open and find most people around me simply want to know more about my condition rather than associating it with something evil, as they may have in days past. However, when I have one of my tonic-clonic seizures, I force down shame, distressed by how ugly it must have looked and if I scared anyone. Did I urinate? Did my eyes roll back? Did I turn gray? Were there children around who were terrified? How many people did I inconvenience or worry? And what did everyone guess was the source of it? Drugs? Drinking?

I wait to venture beyond my house until my head no longer is in a fog. Concerned friends and coworkers ask how I’m feeling. I look down at whatever I’m doing and mumble “fine,” moving on and hoping they will too. Usually they don’t know what to do, and do walk away or change the subject, though only because I’ve made it awkward.

I can tell them I made “a human mistake,” that I forgot to take my meds. In their eyes, I see they’re relieved my episodes are usually controlled. But I also see (or imagine?) an accusatory “how could you?” pass across their faces. How could I be so irresponsible as to have forgotten meds and put everyone else through the drama of my seizure? And so humiliation settles in. It’s this shame of irresponsibility that keeps me from self-acceptance when my epilepsy hits full force. Having epilepsy is nothing that anyone deserves, but I feel like forgetting my meds is wrong.

I’m at peace with telling people about my disability, but humiliated when I let my trigger grab me. I obsess about the fear, worry and inconvenience the seizure may have caused. Sometimes I still feel shame, but at least I’m not ashamed any longer of the epilepsy itself. My seizures are rare, seemingly coming every two to five years. And it is up to me to keep them away. Only then will I no longer feel epilepsy has its grasp on me.

We want to hear your story. Become a Mighty contributor here.

Getty image by Victor Tongdee.


Find this story helpful? Share it with someone you care about.


Related to Epilepsy

Strong confident woman.

Why I'm Reclaiming the Term 'Disabled'

“Disabled” can be a term to empower you. It doesn’t have to be something you see as a burden. I use the term disabled as a way to connect myself to people I feel I can relate to. When I refer to myself as disabled, my family gets defensive. They have been raised in a [...]
Young woman studying at university.

What My Epilepsy Looks Like

A bit of background: I was diagnosed with epilepsy this past summer, in July. I was originally misdiagnosed with bipolar disorder in Novermber of 2016. I’ve had “panic attacks” since I was very little, as well as fainting spells no one was ever able to explain, and I thought the micropsia I’ve always experienced was [...]
woman standing against a wall with her arms crossed

November Is Epilepsy Awareness Month – So Where's Our Coverage?

I have a neurological disorder. It’s a common one that manifests itself in vastly different ways from one individual to the next. Some, like me, are born with it. Others develop it due to brain trauma from an accident or stroke. There are dozens of variants of its main symptom, though most people are only familiar [...]
Williamsville East High School football team

How Football Changed My View of Epilepsy

For many people, Sundays are known for one thing: football. Whether you’re a player or die-hard fan, you understand the game. After years of watching the Buffalo Bills playing and my younger brother play, it occurred to me that epilepsy can easily be compared to football. I bet after you read this article, next time you [...]