One of the most difficult obstacles I have faced since I was diagnosed with epilepsy back in 1992 is surprisingly not the side effects that I deal with…not the looming threat of seizures that I worry about…and not the judgmental people that I have come across…but rather my own self. Weird huh?

I suppose it’s hard to describe how your own self can act as an obstacle to yourself but, believe it or not, it is very possible. When I was first diagnosed, to say that I was upset…well that doesn’t even begin to explain it all. A surge of emotions that I never experienced before was rushing through my body…and I hated it! Everyone in my life…family and friends…they were doing the best they could to comfort me…but all I could say, and think, was: “YOU JUST DON’T UNDERSTAND!”

The reality may have been that they didn’t, but they were trying to understand, and that’s all that matters. But life was different back then. And to put things into perspective, you must compare what it is like to be diagnosed with a disability now versus over 20 years ago. In 1992 there was no Facebook, no Twitter, and the internet was so new that no one really used it like they do today. The ADA laws were still in their infancy, and there were no health insurance protection laws for people with pre-diagnosed medical conditions.

There weren’t any support groups where I lived and my first neurologist…her suggestion for my parents? Well…instead of telling all of us about the New England Epilepsy Foundation…hmm…she told them to send me to a shrink…gotta love some doctors. I can remember going to my school library and taking out any and every book about epilepsy and the brain that I could get my hands on just so I could simply understand a little about what was happening to my body. The more I learned, the more I wanted to tell everyone that they didn’t understand!

The more I focused on people not understanding me, the more I pulled away from everyone. I felt alone…scared…angry…and as a result, I hurt people because I was having a hard time loving myself…let alone anyone else. I just kept pushing people away until they stopped coming around.

You’re probably going to want to ask: “Why the hell would I do that?” Well…obviously I didn’t realize at the time that I was doing that. I guess I was just so wrapped up in my own head space that I didn’t realize I was hurting those around me.

For example, there was this boy…he was my first boyfriend…he was such a sweet guy…so cute…and a good kisser too (ha). We met in junior high (before I was diagnosed) and were friends all throughout my high school years. I remember every time he told me that he loved me, I broke up with him. Ugh….I swear I’m not an awful person…I’m just really bad with emotions and relationships…if only I was as good at talking to people as I am at writing…but that’s beside the point…

So back to this boy…we would always get back together…but then I changed…epilepsy happened…it was like I felt I needed to disconnect my emotions from myself…from everyone…just to function…just to survive…

I still remember the last time I broke his heart…he brought me roses for Valentine’s Day and left them at my locker. I barely acknowledged him and what he did for me. I was going through so much at the time and I didn’t know how to tell him, let alone anyone else, how I felt…I guess maybe I pushed him away on purpose.

The reason I’m telling you all of this is in hopes that you learn from my mistakes. I still have days when I want to be anti-social…but now those days are few and far between. And I still can’t always articulate whatever the heck is going on inside of my head at any given moment (ha)…but now I try.

I genuinely feel bad for anyone I hurt and pushed away while I was going through everything when I was younger…the amazing thing about this story is that all of those people found their way back to me. All of those friends I ran away from…all of those guys that I hurt…all of the family I ignored…they are still there for me now. Ironically, the one thing I didn’t have as a tool for expression and support assisted me in finding many of these people years later after I graduated high school (Facebook).

So chances are, if you’re going through anything serious right now, you’ll say exactly what I did: “YOU JUST DON’T UNDERSTAND!” But I’ve learned it doesn’t matter if they understand…what matters is if they WANT to understand…what matters is if they love you…are there for you…what matters is if they ARE understanding…this IS WHAT MATTERS!


Add yours

  1. Hello when I was diagnosed with epilepsy I felt the same way. Those feelings I think are natural. Epilepsy just swooped in and has changed your life as you know it. I was 23 when I was diagnosed. I just like you didn’t understand myself and the emotions I was feeling. Just know you are not alone! There are many of us out here. Try to be positive, smile on the outside even when you want to cry on the inside. I did this for the last 16 years it helped. Two weeks ago I had brain surgery to become seizure free because the 3 medications I was on could not control my seizures. The only thing that got me through this journey was being positive and humor.

    Liked by 1 person

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