After 20 years of epilepsy, four surgeries, countless testing, and a ton of hospital visits, I can now say I'm 18 months seizure free. I've been thinking about epilepsy a lot lately and my struggle with the stigma for it. Because my seizures are in check I've decided to go back to school and transition into UX Design. For an application idea, I'd like to create something that can help people with invisible illnesses (aka epilepsy) and help educate people who don't know… read more
NEVER Underestimate The Power Of STUPIDITY, Those Of Us Who Think They Know PREACH Those Of Us Who Actually Do Know TEACH
It's One Thing When People who Are Not Related To You Give You A Hard Time It Down Right SUCKS When Family Does It, I Am Soo Sorry You Are Being Treated This Way NOT ONE Of Us Deserves This Kind Of Treatment. I Mean Seriously WHY Would Anyone Fake A Seizure Just For Attention There Are PLENTY Of Other Ways To Get Peoples' Attention, All I Can Say Is People Are STUPID And IGNORANT
Kind Of Makes Me Feel Selfish I Can Drive But Had My License Taken Away 4 Years Ago. I WILL Be Getting It Back SOON And Coming Out Hear And Reading About People Who Never Could Drive Kind Of Makes Me Feel A Little Guilty About Being Happy For My Own Situation. My Heart Breaks For The People Who Have Had To Endure Such Horrific Experiences, And It Makes Me Realize How LUCKY I Really Am
I've had epilepsy for the past 48 years. I never thought of it as effecting my life but I'm starting to change my mind about that. I think it does tremendously. I was lucky to find the husband that loves and supports me but am afraid to have the seizures and the current surgeries due to our two children. I also wonder if I should because I keep getting mad at our kids for the wrong reasons and later regret it when they are off to school. I am lucky enough to be called back(15 yrs ago) by my previous employee to work with them on contract.
I am open about my epilepsy, however It does look like I scare people when I tell them about it. So I do feel the stigma.
Having a personal driver or someone that helps people with epilepsy do simple house chores would make my life simpler.
Also, having more support groups.
Hope this helps and good luck in your journey. You're doing something I've always wanted to do so, I'm very happy for you.
Very True Mike You Couldn't Have Said It Any Better. Some People I Know Actually Consider Me Handicapped. I Never Thought Of Having Epilepsy As Being Handicapped BUT Of Course I Do Not Have The Condition As Bad A Some Others Who Suffer With It Either So Maybe My Personal Perspective Is A Little Skewed But Don't We Have The Right To Be A Little Skewed. With Everything We Have To Deal With As You Pointed Out Even Family Members Sometimes Do Not Always Completely Understand. What I Don't Understand I Why They Ever Stopped Running The Commercials For Epilepsy On Tv. Back When I Was A Kid There Used To Be A 30 to 60 Second Ad On Tv Stating Something To The Effect Epilepsy "It's Not What You Think", But It Never Went Any Further And Explained What It Actually Was, Maybe People Are Just Scared Because They Don't Know What To Do If They See Someone Having A Seizure. Why Don't They Teach Kids How To Recognize A Seizure And Show Them What To Do When Teaching First Aid In School A lot More People Have Epilepsy Than People Care To Acknowledge And That Kind Of Information Would Be Very Useful