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Personal struggles of dealing with Epilepsy

Thu, 10/11/2018 - 22:02
To those reading this, hello my name is Nick. I’ve currently 26 and have had epilepsy since I was 14. I suffer from both grandmaul seizures and atonic drop attacks. On four different medications that I take twice a day and have a VNS to help control my seizures. I have found over the years that it is often difficult do put into words the effects epilepsy has from a social standpoint as well as the emotional struggles that come with it. Some of us, like myself, may have come to accept what can happen and potential fate. But those that don’t have epilepsy don’t understand, making things difficult and eventually taking an emotional toll. It’s often made fun of in a light hearted way, but deep down it pains us. I personally feel that my epilepsy plays a large roll in how my life has become. Unable to fulfill dreams and ambitions like joining the military. Or even some of the most basic of things that one would not think. It's sometimes a socially awkward thing to discuss and feels like a weight on my shoulders. Some know me as “that guy with the seizures” and nothing more. I know that I am fortunate enough to not have seizures on a daily basis or nearly severe as others, but it holds me back to an extent from being able to be my best. Anyone reading this can agree that the constant visits to specialists, changes in medication, and EEGs all take a toll. Embrace being epileptic but also asking, “why me?” and just wishing that life isn’t controlled by medication. Despite everything that I have had to go though as well as what others have had to go through, I have accepted the fact that I’m epileptic. It often causes me pain emotionally having to try and accept that I am limited from doing certain tasks. I would like to think that I’m not alone in dealing with the personal struggles that come with having epilepsy.

Comments

Hey NRbierman, you're

Submitted by jblfavre on Mon, 2018-10-29 - 18:32
Hey NRbierman, you're definitely NOT alone!  Epilepsy is grossly misunderstood and underestimated by most people, including those in the medical field (not to mention the Police!)  Like you, my daughter was diagnosed as a teenager and spent a bunch of years battling SO hard to figure things out and come to terms with living with E.  She still has down times and struggles to make peace with what is (yeah, and so do I, frankly!) Hang in there and DO seek out support groups/people who can understand what you're going through, and the fears and insights you might have.  Cheers, Julia

Hi nick, your story is kinda

Submitted by Mariah93 on Tue, 2018-10-30 - 15:28
Hi nick, your story is kinda how I feel at times. I have absence seizures and tonic clinic ones. I have JME epilepsy. Juvenile myoclonic. It does kind of suck that people like us with epilepsy are limited from doing certain things. When I was first diagnosed I had a hard time accepting it. I was upset embarrassed and didn’t feel like a “normal” kid. As I got older I finally started to accept it and I feel much better. You are definitely not alone on feeling this way. Hope all is well. - Mariah 

Hi @NRbierman I do understand

Submitted by MalWill on Fri, 2018-11-02 - 16:07
Hi @NRbierman I do understand the struggles and I'm sorry that you're having to go through this. However, you can grow from it and regain your confidence. Everyone has some obstacle, but it's all about your mindset. Please see my recent post. I believe in you. You can accomplish anything.https://www.epilepsy.com/connect/forums/living-epilepsy-adults/epilepsy-does-not-define-youTake care Nick, Malory

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