We ask the question so often. Why don’t more people ‘Talk about It’? In other words, why is it so difficult to speak freely and honestly about Epilepsy and seizures?
Greg Grunberg has done an excellent job of pushing the issue, as have organizations like the Epilepsy Foundation of America, its affiliates, CURE, The Danny Did Foundation. But really…is it so tough to be frank about this? Apparently, yes.
A friend who is deeply involved in Epilepsy programs and advocacy said something to me yesterday that really stuck. She said that it will be the young people that bring Epilepsy out of the shadows. In other words, they seem to have shed the fear and have made the commitment to help erase the stigma. They recognize that some won’t accept their situation, but still, they move forward. When you look around and really examine all of your relationships with advocates, those who live with Epilepsy and those who care for people living with Epilepsy, isn’t this the case?
I’ve mentioned before in other posts that I have no issues speaking freely about my illness, either to others in the Epilepsy world, or those who have no affiliation. I’ve suffered greatly for this; lost friends, sacrificed the trust of co-workers, and raised some eyebrows among other things. But, I committed myself to honesty because this is truly the only way we can help raise awareness and erase the stigma. And, I see so many others who have approached this in a similar way.
But, when I see or read about young people like Kaitlin Nolte or a young man named, Michael Hutton, winner of the 2010 Dakota Pequeno Memorial Scholarship from the Epilepsy Foundation of Michigan, I’m amazed at how open they are about their Epilepsy. They have courage and strength that is so admirable. Not only do they live with their Epilepsy, but they are fighting to make a difference and to raise awareness. Chances are, they suffer like so many of us do, but they don’t let their pain stand in the way of their goals.
It might be too late for many to begin to talk openly about their Epilepsy, but we can certainly support the young people that are fighting to raise awareness and bring more attention to this condition. Whether it’s a $10 donation to their campaign for an organization’s event, the purchase of a purple beaded bracelet or simply reaching out to send them a note of hope, we can support their efforts. Helping them will help us all!
Jeff Nelson
July 24th, 2010 at 11:31 am
Yeah…it’s interesting how I keep seeing these adds on T.V. saying how 1 out of 8 women will be diagnosed with breast cancer in their lives, so please help…blah, blah, blah! Now, I’m not going down on those who’ve had cancer as my wife’s mother has had it, though I keep thinking to myself, now if you take all those who will have it, and add to it all those who will get Parkinsons disease…..you still won’t reach the number of those who will come down with Epilepsy!!! So why in the world do we never hear about this!!! Somethings wrong here!
Anita Peterson
July 24th, 2010 at 12:36 pm
This is evident by the group our local EF office has formed. It’s a group of teenagers who have epilepsy or are affected by epilepsy in their life (my daughter attends because I have epilepsy). They are forming outreach events and are planning on presenting to their schools this coming year. My daughter also educated her teachers and friends about epilepsy on Purple Day this year. She rocks
Personal Care 101
July 25th, 2010 at 3:34 am
The Efforts of the Young will Bring Epilepsy out of the Shadows?-…
I found your entry interesting do I’ve added a Trackback to it on my weblog
…
Robin Tengelics
August 1st, 2010 at 12:03 am
I’m 25 and was diagnosed with Juvenile Myoclonic Epilepsy when i was around 11 or 12 (ask my mom, she could probably tell you the exact date). I’m very open about my epilepsy and will talk about it any time to anyone, but for some reason, it always makes people uncomfortable. nobody is uncomfortable talking about and asking questions about diabetes or cancer for some reason. if anyone ever asks me about epilepsy, it is with much trepidation as though they think they will embarrass me or make me feel awkward. it is okay to talk about!
Alysse
August 1st, 2010 at 7:57 am
Robin,
Absolutely!! Thanks for your comments. I always say–the more we talk about epilepsy, the better we are…ALL of us!
Alysse M.
Kaitlin Nolte
August 2nd, 2010 at 9:16 am
My parents have taught me that when life hands you lemons- make lemonade. It’s much easier to feel sorry for yourself when faced with an obstacle but doing something positive about it seems to make one feel better about the situation. And besides, it IS time to bring epilepsy out of the shadows!
Brooke
September 1st, 2010 at 9:06 pm
I’m 13 and I was told i had Epilepsy when I was about three. I found out later, that my neighbor has it too! It was a big help for both of us to talk about it. But, for some reason everyone at my school would ask me about my surgery and why I had it, and then after I told them I have Epilepsy, everyone would like have a silent moment or something… I think we SHOULD get Epilepsy out in the open! My mom and I did a fund raiser earlier this year and earned $100.00 but it just doesn’t seem like enough!
Robin Tengelics
September 15th, 2010 at 12:40 am
Brooke, when i saw you mention the “silent moment”, i actually laughed! i laughed because i know that silent moment so well! People are so weird. my future father in law has epilepsy too and when i found out, i felt bad because i was excited to have someone like me in my life.