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I have epilepsy, what’s your superpower

By March 22, 2023Latest

Purple Day, a day to raise awareness about epilepsy, is celebrated internationally on 26th March each year. Ahead of this, I thought I’d take the opportunity to share my experience of living with a condition that over 65 million people worldwide share.  

What is epilepsy?

For those who don’t know, epilepsy is a neurological condition that disrupts the normal electrical activity our brains use to communicate with the rest of the body. It is characterised by seizures that cause involuntary movements, shaking, confusion and anxiety.  

There are at least 40 different seizure types, and people may experience one or several of those types. Epilepsy can be caused by genetic defects or structural or metabolic causes. However, around 60% of epilepsies have no known cause. While a lot of people are able to treat their epilepsy effectively with medication, sadly, one in three have seizures that cannot be controlled by current treatment options. 

My story

I was 13 years old when I had my first seizure. I remember I was about to step on a bus, following a sleepover with friends, when I felt extremely disorientated. The next thing I knew, a paramedic was asking me if I could recall my own name and whether I knew where I was. Whilst both should have been easy, I was unable to successfully answer.  

After a night in hospital, I was allowed home and told there would be no further action until I had another seizure. Of course this happened and following various investigations, I was officially diagnosed and placed on medication called ‘Tegretol Retard’. At age 16, I already understood my life would be somewhat different, but being placed on medication with such a name was really soul destroying.  

As I experienced more seizures, common patterns emerged. For example, before a tonic-clonic seizure my arm uncontrollably moves like a Bollywood dancer, and although I can hear what is going on, I am unable to respond. This period usually lasts about 30 seconds but it feels like a lifetime and for me, is the scariest part of having seizures.   

After about 10 minutes, I slip into the type of seizure most people associate with epilepsy, a tonic-clonic seizure. At this stage, I lose consciousness, go stiff, jerk about and bite my tongue. When I wake up, I’m always extremely confused and tired.  

Over the years, my epilepsy has amongst other things, impacted my ability to drive, drink alcohol socially and do simple things like go swimming on my own. Having my driving licence due to a successful seizure free year was amazing, until I had another seizure and had to voluntarily revoke it. Although this may seem somewhat dramatic, I lost a real sense of freedom and was back to using Dad’s Taxi.  

When it comes to friends, family and people in general, I understand that many living with epilepsy feel ostracized and are sometimes even bullied. However, I have been extremely lucky and have constantly been provided with love and support. Perhaps most annoyingly when people discover I have epilepsy, they ask if I’m triggered by flashing lights, but they soon come to know the statistic that only 3% of people are actually triggered by flashing lights. 

With regards to employment, I always feared I would be overlooked due to others coming with less “baggage”. I remember having a seizure on my first day at John Lewis and asking whether I would be sacked. In fact, the complete opposite happened and my manager explained her child had epilepsy, and they would do everything they could to support me. This fear was notably at a peak when I was in an extremely competitive pool applying for a Training Contract (TC). Successfully gaining a TC with Glaisyers ETL has really helped me begin to quash this fear. Glaisyers ETL have consistently encouraged me to do things and been nothing but supportive. I just wish my employment experience to date was the same for everyone.  

By sharing my story, I hope to encourage people to feel comfortable to talk about their condition, rather than hide due to fears. Whilst a response may not always be positive, most will be supportive and want to help in the best way they can. Being diagnosed with epilepsy is not a life sentence. You can still live a full life and achieve amazing things. 

Sophie Hughes

Author Sophie Hughes

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