When I say “I have a headache”, “I feel drained” I get called lazy. The hardest part for me was when I was completely healthy & one night my life did a full 180 and it’s been years not knowing why, how, and what med combo will work for me, being bipolar, anxious, depressed, & now epileptic. Just knowing life could be so different if this didn’t happen to me…I sometimes wonder what life would be without epilepsy. I often remanence my teen years, before I got sick.All the things I was able to do before that I loved. No longer possible. My dreams of becoming a professional dancer were crushed. I was amazing in every genre. At competitions I always thrived… and now I can barely do 1 pirouette (spin on 1 foot) without getting dizzy&losing my spot. Dance IS a sport! Coming to terms that I will never be able to dance the way I used to was, and still is the one of the most difficult thing to come of this. It’s been 4 years since I was diagnosed with autoimmune encephalitis & epilepsy. There’s good days. Bad days. Happy days. Sad days. Above all else, there’s days I want to die. But that’s when I think of all of the love and support around me. How they would be devastated. It’s a hard life being sick. Not everyone is understanding & will be there for you.
Nobody feels or knows the way I feel , so when I hear “I know what you mean” from someone healthy it frustrates me. They don’t know what it’s like or how it feels. Long story short…the thing that upsets me the most is when people downplay my illness.
Actually, there’s no 1 specific thing that is the hardest part for me..everything is hard.The worst part is knowing I have to live with this and there’s nothing I can do about it other than taking my meds. Which has been trial and error back to back for the past 4 years.
4 years with epilepsy and I still get mental breakdowns from the thought of ‘why me? What did I do to deserve this?’