My diagnosis story

Growing up, I often struggled to put the experiences I had been having (which I now know to be a type of focal seizure) into words.

Not knowing
The experience frequently made me feel scared and confused. Yet when I tried to explain what had been happening to others it was taken as me just ‘sometimes feeling unwell’ – like all kids do at times. Epilepsy certainly didn’t come to mind. My experience was far from the ‘convulsing on the floor in response to flashing lights’ that myself and those around me understood epilepsy to be.

I started to think that perhaps everybody went through this and that I was particularly rubbish at coping with it. This was very far from the truth. As my seizures increased in frequency, became more noticeable to others and became overwhelming to cope with, I finally made it to the GP. I did my best to explain what had been happening. He wasn’t sure but referred me to the neurology department at my local hospital to have further testing.

Getting the news
The waiting lists were long but at least it felt like my concerns were finally being listened to. After appointments with a paediatric neurologist, as well as an MRI scan and several EEGs, I was given a diagnosis of epilepsy.

When I got home I remember curling up on my sofa in tears, although I wasn’t feeling sad. Instead, I had an overwhelming sense of relief; the question which had been prominent in my life for a long time had been answered. I felt validated and finally had an explanation for what I had been experiencing. It also helped others to understand and learn how they could help.

Feeling hopeful
With my diagnosis came hope; I could finally start accessing support and treatment. In my view, receiving an epilepsy diagnosis isn’t a life sentence – instead it can be the beginning of a journey towards getting better. And remember: epilepsy might be something you have, but it isn’t who you are.

Rachel