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5 Steps to Telling Others about Your Epilepsy!!!

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CAVEAT: The following is necessarily simplistic. I acknowledge that having epilepsy and life’s experiences are different for everyone. Nonetheless, I hope there may be a few nuggets useful for you as you enter unknown territory.


Here’s the thing. There are many of us who want to be free of the burden of hiding our epilepsy but are afraid to do so because of prejudices. If your condition isn’t already obvious by the life your epilepsy forces you to live, you owe it to yourself to step out and shed the light on your epilepsy – in doing so, joining in the fight to end the stigma. There are a few ways that have worked for me, and maybe they could help you, too:

1)  Accept yourself.
  I know. This can be the hardest step of all. For example, I lived for years feeling that I was a weirdo, “the other.” Somehow, I thought that I didn’t deserve anything I got and any successes were just examples of my fraud of a life. I was in hiding with misplaced shame and pretty successful at it, too (except …

"Please don't let it be epilepsy!"

Reaching back to when I was diagnosed with epilepsy, I remember being in a hospital bed, the glare through the window masking all that was natural.  The doctor didn’t visit me for a long time, and the nurse told me he was in the process of determining why I had had a seizure.  I had had a seizure???  What???? I don’t remember being afraid, but instead felt distanced.  Somehow, though dispassionately, inane, culture-induced prejudice took over: “please don’t let it be epilepsy, please don’t let it be epilepsy….”  I can’t say for sure, but it wouldn’t be far-fetched to think I’d have preferred being diagnosed a fatal disease.  “Epileptics” were the weird ones who lay on the outskirts of our world.  They were lesser people.  They were scary.  They had no control over themselves.  When the doctor announced my diagnosis, I snapped.  I howled.  Then, my memory stops.
That was in 1976.  I was a high school senior and had had my first tonic-clonic seizure in the middle of the hallway while c…

It was time for me to shed the light on my epilepsy...

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In 1976, I experienced my first seizure.I was in my high school hallway between classes (read:  teens all around), having felt all morning as though I was disconnected, somehow reading everyone’s minds.What an aura.
The next thing I knew I was in the Concord, NH, hospital, while they tried to determine if I was “an epileptic.”And so began my feeling of being the other, of being weird, and of humiliation. My cognitive abilities just weren’t what they used to be.Was it the epilepsy or the Phenobarbital?Regardless, it was me, and I was less of a person to my way of thinking.
Fairly soon, I moved onto more effective meds, which allowed me control.My self-esteem stayed damaged, though, and, like so many, I hid my condition. I only dealt with it when I would forget to take pills and have a full-out grand mall seizure – usually with people who didn’t expect it because, that’s right, I hadn’t told them about my epilepsy.
What a waste.Not only was I in a dangerous part of the shadows, I wasn’…