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I Thought my Epilepsy was Something I had to Hide, now I’ve Accepted it

TW: This article contains use of an ableist slur

I was 17 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 decided I didn’t need to tell anyone. Whether a blasé attitude as I thought at the time or more likely one of closeted denial, 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. I couldn’t hide it any longer and the shameful secret I’d fought to hide came out. The monster was out there for the world to see.

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 shup up as there were no tests without these missing symptoms. Maybe the monster would go. Maybe it wouldn’t. Seizures were daily occurrences. A new and unwanted part of my life.

Then thank GOD for one seizure; I bit my tongue so severely it bled and was hideously swollen. I was taken to the GP by angry parents who were amazing enough to demand tests. Months of EEG’s, brain scans and heart monitors later gave me the answer:

I had epilepsy.

Giving a name to the monster didn’t make me feel better. The name was a big one. A scary one I associated with straight-jackets and ‘asylums’. I tried to carry on as normal. But this made the stigma I felt worse. Hearing ‘sp*z’ insults knowing they’re referring to someone like you 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. There’s a range of medications and you have to try them to find what works for you. The first one made things worse. I was having seizures every few minutes. Things came to a head when I had a 30 minute long seizure and passed out. I woke up not knowing where I was (at home) or knowing who these people were staring at me (my parents). We decided to change medications and thankfully after a few weeks, the seizures fizzled out. My last ever seizure at a Christmas Fair in North Yorkshire.

There’s a misconception that medication magically cures everything. That when you’re on medication you’re ‘normal’ again. This isn’t the case. 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’d have had a seizure just now if it wasn’t for my medication”. 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 epilepsy was accepting my identity. I was no longer “Cath”, but “Cath with the Epilepsy”, something I’d told myself was a stigma to be kept secret. Changing this mind-set 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 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 epilepsy as a badge of honour to be worn with pride rather than something to be hidden. Without my epilepsy 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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