Hi, My name is Aisha I was diagnosed on my 16th birthday, I was diagnosed With juvenile myoclonic epilepsy, and non epileptic seizures, I have been seizure free for 3 months and I have never had a seizure free year.
No matter how much you know about the conditions yourself. I feel like if you don’t have epilepsy, you don’t really know the impact it has on our mental health, daily lives and relationships with people and 8 years later, I'm still trying to figure everything out.
It’s not something I’ve ever truly accepted, even though I’ve had it for so many years. Because it is one of the hardest things I’ve ever had to deal with. Being poked and prodded at more times than I can count, numerous trips to a&e, electrodes glued at my head and my mum having to film me in order to figure out what kind of seizure I was having and No matter how much support I have around me, I do feel so alone sometimes, I don't feel like I can open up to anyone. But mum I am always grateful for everything you do for me, for sitting in a&e for countless hours, taking me to every doctors appointment, even still at 24 years of age. I honestly don't know what id do without you.
I have that constant fear that I’m not going to wake up in the morning. I have such low self confidence because I can’t do simple things round the house on my own, I can’t shower without someone being home where I’ve nearly died several times, I have no memory whatsoever anymore I have to write everything down in my notepad on my phone, or i will forget. I don’t really have a social life because I am embarrassed In case I have a seizure around my friends, my friends are aware of what to do in that kind of situation, but its the fear of having one. I’m afraid to go outside on my own where I’ve had an absences and nearly been hit by numerous cars/busses and it made me feel so isolated I didn’t leave the house for a month and on top of that, I am constantly, exhausted. But I feel as if I ever tried to explain any of this, as much as people say they understand. They don't.
But As hard as I do try to explain things, Over the years I have pushed many people away, because I think it’s unfair for you to see that side of me, I've pushed away friends, boyfriends. Its not a part of me I want anyone to see.