Epileptic Problems - Blog Posts

I’ve noticed this too but I don’t have frontal lobe epilepsy but since my first seizure I also noticed worsened autism and tic symptoms. I am photosensitive. Has anyone else noticed this?

Just a little something about me. I've had epilepsy for 3 years now and it is tough. This just came to my mind because I have memory loss everytime. That's the name of my epilepsy 'Temporal Lobe Epilepsy'. As I've started my new job, I've been forgetting a lot of things that I've done and when I explain something new to my friends or family, I then forget what I'm saying or what I've done at work 😓. But it's not only work, I lose my memory quick anytime and takes me a while to remember. Good thing that I have an appointment with my epilepsy nurse next month. Need to talk to them more 🤲🏻💖

Today, I was out with my nan, eventually we got to the discussion of me getting a job. My mum doesn’t want me to get a job until 3 months into the school year because I’m doing VCE history in yr 10. I spoke about how ill have to look for an employer who doesn’t care about my epilepsy, which is going to be a bit difficult because there are so many teens looking for jobs rn, and I’m pretty sure an employer is going to choose a non-epileptic person rather than me. I made a comment about how crappy it is having all your friends work and you being the only one not working, my nan then proceeded to lecture me about ‘how it’s just the way it is, and that it’s like your pop, he has PTSD, but he can’t do anything about it.”

I’m so sick of all these people, more specifically adults, talking to me and lecturing me and telling me off when it comes to my epilepsy like they know what I’m going through, like they understand. They can sympathise sure, but only on a certain level, their understanding doesn’t go as deep as mine does, and I’m so sick of them pretending that they have that understanding.

And it’s not just the adults in my life that do it, so do my friends. They try to understand, they try to say things to support me when I’m anxious to the lead up of a hospital appointment. They don’t understand that this hospital appointment could literallly change the way my life is operating, it could change everything. They don’t know that anxiety of whether this hospital appointment is going to be the one when they tell you that your never going to come off your meds. They don’t know the utter disappointment and regret that you feel when you come to consciouness after a seizure and realise what happened. They don’t understand that gut wrenching fear that you feel coming out of a seizure, on the floor, limbs sore, nauseous, with an excruciating headache not having a clue what happened or where you are.

Being a teenager is overwhelming. Being a teenager with a chronic illness who constantly lives in fear of having a seizure while also dealing with the crappy people who tease you for it or force harmful stereotypes on you is a whole other level.

The point of this post is that I’m so sick of people pretending to know what I’m going through, I’m so sick of it that it makes me want to scream. And I’m so sick of having epilepsy.