Epilepsy and fears related to it
I think it is really important to talk about how epilepsy has caused me to be constantly afraid of having a seizure, constantly afraid of falling and humiliating myself in front of others.
afraid of dying of course.
i know it happens in a lot of other illnesses as well but at least for me, i am terrified of having a seizure. I also think it is really important to understand how we treat ppl with epilepsy bc sometimes they need to laugh about it but also sometimes to cry and it is difficult and challenging. But definitely don't ever treat them like a "sick kid" and not only ppl with epilepsy but with every illness idk if you felt it but it effected me so much ppl Only talk to me about things related to epilepsy I know it's because they're worried about me but it doesn't matter I'm a human being epilepsy is not my personality it does not define so talk to me about me! Not about epilepsy because we are not the same!!!!!!! Djsksjss im sooo alone so sad and so scared as i am writing this but this is so important and ppl need to know this - it made me feel so far away from the people i love bc it made me feel like I'm nothing but sick, like they don't see me as anything but as sick. I love my family and friends but i wish they would never talk to me about epilepsy agaaaiinn never again!
I am sorry you feel that way @Lolala and I agree with you nobody's disability defines there personality and I understand that it was difficult for you to write this but I am glad that you have because it carries such a strong message.
Keep going One day at a time your amazing.
@Lolala I get very afraid bein’ by myself an possibly having a seizure. So much so I have my phone in da phone case which I wear on my belt but on da case it self I stapled emergency numbers an what hospital I go to. while having epilepsy is scary as well as my having osteoporosis which if I were to fall could cause big problems in itself but I have lived wit epilepsy since I was 6 months old. As a child I really didnt know what it was all About an my Ma never talked to me About it so of cause I didnt think of it. I was removed from meds at 14 of age supposedly doctor claoimed I out grew it so I had no reason to believe doctors 30 plus years later dat I had epilepsy. somethin’ I couldnt understand bein’ I supposedly out grew it at 14. I got admitted an doctor an I were chattin’ when he asked me how I was when I was in school. After several minutes not only did da doctor say once Ya have seizures it really never goes away. Dey c’n go silent but all while I popped I no longer had it I was having absent seizures which explains why I would remember going in da class but not know one thing da teacher taught ‘cause I had zoned out. After da seizures returned active again it is different from when I was a child. As a child I simply fell to da ground unconscious but now I c’n do both falling unconscious as well as be wide awake an it will happen. YET dat bein’ said I do my best not to allow it to identify who I am I am not da epileptic da person I am a person first who happens to have epilepsy an I do my best not to allow it to dictate how I live my life. I take my seizure meds an as long as I do dat I Wanna to still live my life da best I know how.
