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Hi, I’m here to find some people I can talk to about my experiences with epilepsy. I couldn’t find a community in my own city or even online. I was diagnosed 6 years ago with generalised tonic-clonic seizures, but had my first seizure 12 hours after I was born. Hope I can meet others here. I sometimes feel a bit outcasted or misunderstood by the people around me, since I’m the only person they know with epilepsy
@notthere Hi there. I don’t have epilepsy (I do have really bad migraines) but I half raised my niece who does (I was the one who took her to specialists to figure out what was going on as her guardian at the time). She has turned into an amazing person who has traveled to live in other countries to teach English and has an incredibly full life. Hang in there, and follow your dreams. I hope you find the community support you’re looking for :)
Thank you so much for replying :) hearing others surmount their disabilities is always inspiring. I’m glad she’s doing great. I feel like my life has paused since my second seizure (at 16). I used to be active in school, friends, extracurriculars etc. I could memorise 10 minute speeches and do several activities in a day. Then there came one seizure after another and things shifted. I grew unsure of myself. My memory has declined as well as my body coordination for some reason. People have pointed it out and would joke about it. It’s funny, but sad because it’s true. I feel like I’ve lost a part of myself, or a part has been left undeveloped. I realise now that since I was 16 I’ve been making decisions with the mindset that I’m not good enough for the role, the internship, the relationship, and that I’d just disappoint myself by trying.
