THE BLOG

Why I Kept My Epilepsy Hidden for So Long

13/04/2016 16:25

I have lived with epilepsy for as long as I can remember. I was diagnosed when I was six months old. But I have always kept it hidden to all but my closest inner-circle. Friends, employers, colleagues and even boyfriends may have known me for years, but my epilepsy was never something I spoke about with them.

My early childhood memories are full of seizures, nasty medicines and hospital trips. I had tonic clonic seizures when I was asleep and absence seizures during the day. I lived on a cocktail of drugs while the doctors tried to work out what would work best for me. My seizures have been mostly controlled from the age of eight, but the effects of my epilepsy didn't stop there.

You see, when you live with epilepsy, there is an under-lying fear present every day. The fear that you might, once again, have a seizure is always with you. The side-effects of the medications can also be really nasty. I spent a few years in my teens feeling like I was in bubble because the medicines made me so foggy headed. I also had to live with the reactions of others that did find out that I had epilepsy. It felt like people constantly tried to wrap me in cotton wool.

When I was 13, unbeknown to me, my mum told a few of my friends' mothers about my epilepsy and this information trickled down to my friends. There are a lot of misunderstandings about epilepsy. One is that everyone with the condition is photosensitive, affected by flashing lights. This is far from the truth. Only 4% of people with epilepsy in the UK are photosensitive, and I am not one of them. My teenage friends, however, didn't know this. When Titanic was released, I, like most other teenage girls, wanted nothing more than to go and swoon over the story of Jack and Rose in the cinema. My protective friends were so worried that the flashing in the film might cause me to have a seizure that, despite my protests that this would never have happened, none of them would come with me. I ended up going to see the film alone. This was massively frustrating. I hated being different.

This is the vicious circle I grew up with. I felt uncomfortable speaking about my epilepsy, and so those around me never had their misconceptions challenged. This meant that their reaction to me when I did disclose my condition, while well-meaning, was often misinformed and totally off the mark. And this, in turn, made me keep my epilepsy and even more tightly guarded secret. It was easier to just not bring it up. I know that I am far from being alone in experiencing this unhelpful cycle. A recent survey by Epilepsy Action revealed that one in five people with epilepsy do not feel comfortable talking about their condition with their friends, and one in seven feel uncomfortable talking even to their family.

This year, I have decided that it's time for me to do my bit at breaking this cycle. I am running the London Marathon for Epilepsy Action, and 'coming out' about my epilepsy at the same time. My whole life, it has felt like my epilepsy has been holding me back. I have always been told what having epilepsy means that I can't do. Now it's time to show what I can do. I can run the marathon, and I can speak out about my epilepsy.

I revealed my reasons for wanting to support Epilepsy Action on my fundraising webpage and social media. It certainly wasn't easy to do! Having kept it quiet for so long, I was really nervous about how people would react, but everyone has been really positive so far. I would encourage everyone with epilepsy to be brave and speak out about their condition. I know it could be a really scary prospect, but I think it's the only way we're going to get more people to truly understand what living with epilepsy is really like.

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