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  • Saskia Müller

I Thought my Seizures Were Something I had to Hide, now I’ve Accepted it

TW: This article contains the use of ableist slurs.

I was 15 when it first happened.

I was in my bedroom when I suddenly lost all control of my body. I could feel my arms, legs and jaw violently convulsing. I could only watch in hopelessness as my body gave way and I collapsed. Still conscious and watching helplessly, I was trapped in my own body and simply had to wait for it to be over.

I’d seen them before so I knew what it was: a seizure. I told my mum and my stepdad and they told me I was lying. They believed I was attention-seeking and told me if I kept lying about stuff like that I'd be punished. I faced seizures alone for 3 months as they grew in severity and frequency like a monster growing inside me. Eventually, things came to a head: I had a seizure in front of my parents and it was all over. They finally believed me.

The GP wasn’t helpful; I hadn’t bitten my tongue or wet myself so it was tough luck: I had to put up and shut up as there were no tests without these missing symptoms. Maybe they would go. Maybe it wouldn’t. Seizures were daily occurrences- a new and unwanted part of my life.

Then THANK G-D for one seizure; I had a seizure after doing my English Language GCSE and smacked my head on the table. My nose was bleeding and crooked so I was taken to A&E by angry parents who were amazing enough to demand tests. Months of EEGs, brain scans and heart monitors later gave me the answer: I had Non-Epileptic Attack Disorder.

Giving a name to the monster didn’t make me feel better. The name was a scary one I had never heard of before. I tried to carry on as normal. But this made the stigma I felt worse. Hearing ‘spaz’ and 'retard' insults knowing they were referring to someone like me and overhearing jokes about people like me confirmed my fears; what I had was shameful and not to be discussed.

There’s no cure or quick fix. Because it wasn't epilepsy there was no medication I could take. There was nothing I could do but reduce stress.

There’s a misconception that reducing your stress levels magically cures everything. This isn’t the case. Sure, I haven't had a seizure in four months, but I still get dizzy. I constantly monitor my triggers; alcohol, lack of sleep and hormones mainly. I still get bad days where I think, “I’m going to have to be careful today” or, “I’m pretty sure I would've had a seizure just now”. I have to accept that this is something I’ll have for the rest of my life; I have to manage my disability rather than cure it.

More challenging than learning to manage my seizures was accepting my identity. I was no longer “Saskia”, but “Saskia with the seizure disorder”, something I’d told myself was a stigma to be kept secret. Changing this mindset took years. I don’t know how I did it – a realisation moment or several smaller moments but one day I understood the stigma was in my head, and the heads of ignorant people.

I now realise the monster inside me wasn’t a monster at all, just a different part of me I’d yet to understand or appreciate. Not a monster at all but a friend that never leaves you. I now see my diagnosis as a badge of honour to be worn with pride rather than something to be hidden. Without my diagnosis, I wouldn’t be the person I am today. The friend made me a better person and gave me opportunities that gave me the life I have now.

I just wish I’d realised sooner that I didn’t have to hate or be ashamed of this part of myself.

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