March 26th was Purple Day – the international day of epilepsy awareness – and I was privileged to be able to share my story in the Birmingham Mail that day.
I talked about the shock of being diagnosed with epilepsy at the age of 20 and some of the feelings I wrestled with at the time and later, as well as the precautions I took to minimise the risks to my unborn child when I was planning to become a mum.
Ever since it went to press I’ve been thinking of other things that I wish I’d said, so here are a few extras for you:
- I’m sad I’ll never be a truck driver like Long-Distance Clara
- I hate being referred to as “epileptic”
- A former employer wouldn’t let me work from home
- MRI scans are soooo much better when the machine has periscope-like mirrors to let you see out
- I’d love it if more celebrities “came out” as having epilepsy (come on, there must be more of you!)
- I can’t believe that some people still think epilepsy is demonic possession
- I’m not terrified of having a seizure in public anymore but I wear a MedicAlert bracelet all the time – just in case
- I worry that my son might inherit epilepsy (although it is a low risk)
- I don’t mind one bit if people say “brainstorming” in front of me (“thought-shower” is way more offensive, although mostly at a linguistic level!)
I got some positive comments on the Mail’s Facebook page, although a few people seemed to think that I couldn’t truly speak about epilepsy as my seizures are controlled. To which I say, yes, I know I am among the fortunate 52 per cent of people with epilepsy who live seizure-free – and I know that many people face daily struggles that I am lucky to avoid.
However, I hope that my story can be seen as a giving a positive take on living with epilepsy, and shining a light on an often misunderstood condition, but one which is surprisingly common (one in every 103 people in the UK has epilepsy).
Hannah Hiles 