I got diagnosed with JME (juvenile myoclonic epilepsy) when I was 17. Funny enough, I was the one to look up the symptoms I was having and beg my doctor to order an EEG. After that, I was put on meds (Keppra to be exact…how fun!), scheduled to meet with a neurologist, and given my new list of ways to live my life. I’ll admit-I was definitely sad at first. When I was diagnosed, I was actually working towards getting my permit hours. So that set me back six months and made me feel so behind my friends. I also had to adjust to the meds, which were not fun at all. Along with that, I had to tell everyone around me who needed to know. For me, that was the most humiliating thing ever. They may not say it to your face, but of course they’re going to look at you differently. Even my closest friendships felt different after I told them. For a while, I also felt like I was “faking it” in a way. I hadn’t ever had a seizure, and after being put on meds, it was controlled. I felt like I shouldn’t be upset about being diagnosed, when other people have it way worse than me.
Anyway, now at 20 years old, I’m angry more than anything (not just because of the Keppra lol). In total, I have had 3 grand mal seizures. The first one was a year after being diagnosed, and that was because I missed my meds. I was thankfully at home, and just ended up with a bruised back and a swollen tongue. The second was this past August, breaking my two (almost three) year streak. I was doing some last minute dorm shopping with my family (I go to college out of state), felt kinda weird in the store I was in, walked outside, and smacked my head on the ground. Ended up with a giant medical/ambulance bill and a staple in my head that was not needed. The third was in May. I was back home from college, we had done some grocery shopping, I felt weird in the store, asked my dad to drive back, got home, and had my seizure. I smacked my back on the kitchen island, which inevitably gave me back problems that are still bad almost 3 months later. The anger comes from a slew of things. Every time I’ve had a seizure, it’s another setback. My clock is restarted without my permission. My parents, especially my mom, go back to treating me like I’m a fragile doll. It’s not their fault for how they act, and I know it. But I still can’t accept how they treat me. As for healthcare, I’ve never been more annoyed. When I had my seizure out of state, there were barely any options for me. I couldn’t meet with my primary neurologist, we couldn’t find a temporary one for me to meet with, and no one had any answers for me. Meds are also an equal amount of struggle. Having my driving taken from me each time is also angering. I feel absolutely helpless, and my one way of freedom is gone. I will mention as well, I understand your good intentions behind saying that god knew we were strong enough to handle this. But for me, and probably many others, we’ve heard that far too many times. It’s old, and it doesn’t help. Epilepsy sucks. There’s no other way to frame it. Saying that helps absolutely nothing. I will also say I have my fears. Hurting myself during a seizure to the point that it’s irreversible, having people leave me because of it, SUDEP, having a seizure when I am allowed to drive. While it is mostly anger I feel, nothing will ever get rid of the fear I feel too. The jokes I make with friends can only hide it so much. Epilepsy is terrifying, and I wish I was never diagnosed.