Hello, Epilepsy world! I’m Leila (pronounced Lee-lah, unlike Eric Clapton’s “Layla”) and I’m thrilled to be writing to you about my experiences with Epilepsy, stigma, and crushing false notions of individuals living with Epilepsy. Before I begin all of that, I’d like to introduce myself.
I was born and raised in the small town of North East, outside of Erie, PA. I grew up in a tightly knit family, including my wonderful parents and two older brothers. Currently, I live in Pittsburgh, PA while attending graduate school full-time and working part-time. Keeping such a full schedule presents challenges to my diagnosis which I’m sure I’ll share later on. I had my first seizure at 8 years old and was soon after diagnosed with Epilepsy. My diagnosis is partial seizures but, like many, I’ve experienced tonic clonic events and even have some events that doctors can’t clarify yet. Still, I continue to take medication and remain controlled.
In the writings I share with you, I’ll be talking about Epilepsy and associated stigmas. Why? Well, Epilepsy remains largely untouched in society as a whole. Even among my peers, I have found old myths that are still believed to be true. My goal is to empower those with Epilepsy through information and encouragement, while educating those who do not have it. My hope is to open discussion without judgement and increase understanding.
Expect the Unexpected
“You don’t look like you have Epilepsy” and “I didn’t expect you” are terms I’ve heard repeatedly after telling people about my Epilepsy. My response is usually some variation of “what were you expecting,” accompanied by a confused and sometimes impatient tone. When these individuals feel confident and comfortable enough to respond, I hear a slew of stigmatized ideas about people with Epilepsy, some of which are true for me and others that are not. I’ll dive into those in later posts, but my point is this: stop generalizing. Stop assuming that the “rules” spoken about those with seizures apply to all of us. Don’t expect a specific type of person just because he/she has a label of Epilepsy. We don’t all look, speak, act, or think the same way. Quite frankly, we’re just like any other human being; we just happen to have a seizure disorder to manage.
As a person with a diagnosis, I feel it’s my job to educate others about it. I can ask or even implore that others educate themselves, but information is really transmitted better between people. So, here I sit: finding another way to pursue my passion of educating others about Epilepsy and removing the painful stigma attached. I look forward to sharing my thoughts and discussing them with all of you.
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.
I want to thank you for blogging about your seizures. I have had seizures since I was 2 years old, and now I am 46 and still have them. I totally agree with you about how people think. There are a lot of people who do not know I have seizures because I look just fine. But, because of my seizures I cannot drive. (a lot of people think I am just lazy) Since I live in a small town, there is not much public transportation which limits me to where I can go. I usually have to wait until my husband comes home to go somewhere. I would be curious to hear what your employer thinks about your seizures – when I tried to get a job they would not hire me because I did not have a license or because I had seizures.
I look forward to reading more of your blog!!
Thanks Lori! Being from a small town, I understand the difficulty finding public transportation. I had to wait to get my license but thankfully am now able to drive. I’m sorry to hear that Epilepsy impacted your job search; that’s so frustrating! I would say that previous employers worry more about my Epilepsy than my current ones due to the nature of the jobs. Maybe you’ve given me a new post! 🙂
Glad that you are adding your voice. It’s clear and strong.
Jessica Keenan Smith
Thanks for encouraging Leila as she tackles epilepsy stigma!
Thank you Bryan! I appreciate the support!