Ask an Epileptic: “I’ve wondered if you realize how annoying it is to be called epileptic?”
DEAR EPILEPTIC: The word “Epileptic” is annoying to some of us who do suffer from epilepsy! There are other ways to get the word out. I’ve done so myself by telling my own story. I was misdiagnosed originally and as a result, suffered 2nd and 3rd degree burns while coming out of the shower. This was my first big time Tonic/Clonic seizure. And after being in the hospitalfor two months and undergoing multiple tests and surgeries, I was finally diagnosed with epilepsy. I have complex partial seizures with secondary generalized tonic/clonic seizures. I’ve had brain surgery, tried numerous medications, and now have the VNS to control my seizures.
It has been hard enough to deal with the stigma plus depression that goes along with Temporal Lobe Epilepsy. I’ve wondered if you realize how annoying it is to to some of us on the “inside” to hear the word ‘epileptic’? I am a person who happens to suffer from epilepsy.
DEAR CINDY: I’m sorry the name of the column annoys you – really. I am also a person who lives with epilepsy, but I wanted to find a way to reach as many people in as short amount of time as possible. I was also hoping for a vehicle that had “legs,” so to speak. I needed a vehicle that could not only get the word out about epilepsy, but that could grow and continue to have a broader impact. My career in marketing has proven that catchy headlines work.
Through Living Well With Epilepsy I’ve seen the positive impact personal stories have on readers, both newly diagnosed and those who have been living with epilepsy for years. I’ve also seen the importance of establishing a community – even a virtual one.
But I was hoping for a broader reach. I wanted to get the message out to people who don’t know anything about epilepsy.
In my intro to the column I touched on the fact that the term “epileptic” is not ideal to many people living with epilepsy. Here’s what I wrote:
Listening to NPR the other day, I heard the journalist Gustavo Arellano mention his nationally syndicated column, “¡Ask a Mexican!.” This is Arellano’s forum to answer any and all questions about America’s spiciest and largest minority (his words, not mine). Now I’m not Mexican, but the title of the column got me thinking. I wondered if there was anything like an “Ask an Epileptic” column out there.
I did a few searches and wasn’t surprised to find that no one had taken this on. Then, I thought the word “epileptic” might really annoy some people. But I figured if people actually read the questions and answers then it is worth annoying some to help many.
I do apologize for annoying you.
I hope you will hang in there while we give this a try to increase awareness about the devastation caused by epilepsy to millions of people around the world.
Call for Questions
You can submit questions for the next Ask an Epileptic until August 14 at Noon ET on facebook and twitter, comment below, or you can use the form here.
- If you have a question you want to ask now, just comment below.
- If you have epilepsy and want to submit a question you are asked all the time – go ahead.
- If there is one myth that you come across all the time submit it. (as a question)
- If you have always wondered… submit it.
You get how this works.
I will gather up questions from the form below, comments, twitter and facebook. The deadline to submit questions in this round is August 14 at Noon ET.[contact-form to=’email@example.com’ subject=’Ask an Epileptic’][contact-field label=’Name’ type=’name’ required=’1’/][contact-field label=’Email’ type=’email’ required=’1’/][contact-field label=’Your question’ type=’textarea’/][/contact-form]
Founder and CEO
Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.
Hmmm…I think it used to be annoying to many people suffering from diabetes to be called diabetic but it is a much more accepted term now. I think the same is true of the label ‘epileptic’. I think the dislike of the term is only part of the stigma. And I think you can have a little stigma even if you have seizures or are part of a family that is affected by them. Spoken as a proud epileptic of 48 years! (without intention of offending anyone)
Thanks for your comment. It’s helpful to know I haven’t completely frustrated everyone.
The term “epileptic” as in “an epileptic” still carries stigma which will not disappear. I think the better alternative title for this column is “Ask the Epilepsy Expert.”