Let’s talk about epilepsy

On 10 May, Emily is competing in the challenging Nuclear Race to raise money for the Epilepsy Society, after benefiting from treatment at the Chalfont Centre. Here she tells her story and explains why she is determined to raise awareness of epilepsy through radio interviews.

Emily was first diagnosed with epilepsy aged 8 and told that she had idiopathic generalised seizures. She has tonic clonic seizures. Having been seizure free for three and a half years, when aged 24, Emily started to have regular seizures again last June.  She had five seizures in the space of two months but they happened in her sleep.  

Emily was referred to the Chalfont Centre at the Epilepsy Society and had a 24-hour EEG which showed that her seizures are focal and many occur while she is sleeping. This has meant she has had to change her medication and that involves her weaning off one prescription before starting another one.   

While she is hopeful that the new medication will control her seizures, Emily found herself in a very dark place mentally, struggling with the side effects and feeling tired and anxious. Emily works in the motor industry, really enjoyed racing and found having to give up her driving licence meant she needed to rely more on family and friends. 

However, even when feeling at her lowest, Emily realised that she needed to talk about her condition. She passionately wants to make people understand that epilepsy is more than just seizures, that there is help available and the more people have this knowledge, the less fear and stigma will be attached to this serious neurological condition.  

Emily has set up her own Instagram account, @epilespy_essex and has contacted her local radio stations to talk about her experiences and to encourage other people to talk about epilepsy.   

What would you say to someone newly diagnosed with epilepsy?  

That you are never alone you might think it but there are helplines and other people to talk to. Do not allow this condition to rule your life. You rule it and it doesn't stop you from achieving what you want to achieve. 

 It's okay to talk about your condition because there are people who are actually interested in learning and with your help you will be spreading more awareness without knowing you are.  

How do you feel living with epilepsy? 

I did feel lonely and isolated. People are judgemental and automatically assume that that my epilepsy is to do with photosensitivity.  

I have lost my independence as I can no longer drive. I love cars and work in the automotive industry but now I have to rely on friends and family. When I lost my licence, I also learnt who my real friends were as after I lost my licence, they didn’t even message or call me. 

 I have also felt frustrated when people don't understand where I'm coming from. For example, when I try to explain something, I have noticed that I can struggle to articulate my words since my most recent seizures.  

What would you say to people with epilepsy who are worried about sharing their condition with other people? 

You’re never alone, you might think you are but you're not. Epilepsy doesn't define who you are, there's more to you than being an ‘epileptic’. It's okay to talk and explain what epilepsy is and not many people understand it like us. Just imagine what you felt like or what your families felt like when they heard the word ‘epilepsy’ so many questions were asked ‘what is that’ ‘what causes it’ ‘is it going to affect their or our lives’. Then you and your families were educated by the neurologist and the epilepsy nurse. So now it's our turn to embrace out condition and educate people who we work with, go to school with and our friends. Please don't be worried because we know exactly how it feels to be in the unknown and having epilepsy. Just remember, there's always people to talk to even if you just say, “please don't say anything let me just talk and let me get everything off my chest” You’ve got this! 

Why are you reaching out to local radio stations to share your story? How did you go about doing this?  

I’m reaching out to my local radio stations to share my story because the more people know about it the less stigma there is attached to epilepsy. By also going on local radio stations we are educating people because nine times out of 10 someone will learn something just by explaining what epilepsy is and what to do when someone is having a seizure. 

You are running the Nuclear Race on 10 May this year – why have you chosen this tough obstacle event to raise money for Epilepsy Society?  

The reason why I have chosen this Nuclear Race is because it is tough and fun at the same time. It is also showing that you can do anything even with epilepsy ‘the world is your oyster’ nothing defines you. Epilepsy Society is a charity close to my heart because without them and the Chalfont Centre I wouldn't have got the explanation I had got about my epilepsy and it explains everything we have been searching for a while. 

If you would like to sponsor Emily, details of her Go Fund Me are here.