I was diagnosed with Generalised Epilepsy at 12. It changed my entire life in a matter of minutes.
I had to have a sense of maturity immediately at a young age, having the responsibility of taking medication 2-4 times a day by age 13 and understanding I was not the same as my peers. Juxtapose that with being wrapped in cotton wool by my entire family until age 16.
At first, it wasn’t so bad I was mainly having tonic-clonic seizures (the big ones everyone thinks of) in the evenings. However, as I came up to 14ish I was having multiple types of seizures* 2-4 times a week, most of them taking place at school.
This is when my social life and mental health began to deplete. No one wants to hangout with the girl who has seizures. I think they felt like it was too much responsibility and were probably slightly scared, and looking back now I can understand why, but being a teenager and not being invited anywhere is painful.
At the height of my illness I was having 2-4 seizure a week, between the ages of 14-15. I was told by an Epilepsy Consultant at 15 that I “would never have a normal* life” and “would never drive a car”, I believed her. I thought this was going to be my life forever, isolated, and unsure.
This knocked my confidence hugely. I was terrified of going to school. I was behind academically (when I wasn’t exactly ahead in the first place). My school were close to no help whatsoever and I only left school 6 years ago! I had a seizure in lesson once and a teacher told me to drink some water instead of going home! If that doesn’t illustrate that big changes need to be made in regards to ableism, I don’t know what will.
Fast forward to age 16, I’m put onto a very new medication (that is very scary for a young woman who some day wants children). This is my miracle drug; It quite literally saved me. I have not had a seizure since February 16th, 2018. Almost 6 and a half years.
I am living my life*. I can drive. I have fab friends and a fab social life. And generally, I am happy.
However, I tend to forget that I have a chronic illness because I no longer experience the main symptom (touch wood). So, I end up being hard on myself for the symptoms I do still experience, such as fatigue, brain fog and bad memory affecting my every day. * Sometimes I need my mum to remind me why I’m so tired and that I need to just take some time to rest.
My life would be so different if I didn’t have Epilepsy. I probably wouldn’t have taken the same paths to have my current job. I probably wouldn’t be with my current partner, and I probably wouldn’t have met some of my closest friends. Granted I wouldn’t have any fake teeth at 22, but I wouldn’t be the same without having Epilepsy and neither would my life.
* Tonic-Clonic and absence seizures
*Whatever that means!! Normality is relative!
*My life is normal to me!
*The weirdest symptom I still experience is Phantosmia, olfactory hallucinations, phantoms smells essentially. Every now and then I will get a strong smell of blood and meat like a butchers for around 10-15 minutes. Strange!
