I was first diagnosed when I was 10, with absence seizures. I would have no recollection of them happening and became quite confused trying to follow what people were talking about.
I was experiencing a lot of absence seizures – daily. People around me were oblivious and as I was so young my school friends didn’t understand. The doctors put me on Epilim, also known as sodium valproate. I remember it being a really dark purple medicine. I don’t remember a lot about my diagnosis at this stage, but I was discharged a couple of years later after starting secondary school. I was free from epilepsy and was off my medication.
Fast forward to when I was 14 years old and I experienced my first tonic-clonic seizure on the side of a busy main road. It all started again from there. I was familiar with this type of seizure because my brother had been having them for years.
I had an EEG that confirmed there was epileptic activity in my brain, and a diagnosis of epilepsy again. As well as having tonic-clonic seizures, the absences returned morning and night. It meant going back on medication.
It all seemed so different this time. I was in secondary school and with being a teenager the reactions varied, some people were accepting, others not as much. I remember being called ‘Shakin’ Stevens’ by someone who was meant to be a close family friend. I laughed even though I wanted to cry.
I remember feeling like I wasn’t normal questioning, why me? I remember my mum feeling like it was her fault. I remember having so many questions but never asking them because it I felt like if I asked them, I’d be accepting it and I didn’t want to do that.
Hard to accept
People were telling me about all the restrictions I would face in life but there was a possibility that I was going to grow out of it so I held onto that hope. That hasn’t happened. Even now, many years on, deep down I am still that scared 14-year-old putting on a front acting like I accept it.
The reality is I don’t think I will ever accept it or the limitations, feelings and injuries that come with it. Although I find it hard to accept, it has got easier to live with. There are times when it’s under control and other times when it isn’t so controlled.
The hardest thing I’ve faced throughout my journey is the denial. My denial was so strong that I didn’t want to take my medication, I told myself I didn’t need it, but in reality I really do need it. I still find it hard but persevere through the bad days and enjoy the good days.
Share your story
If you have epilepsy, get in touch to share your story.
We’d love to hear from you.Get in touch