Being diagnosed with epilepsy as a teenager

 

Our Youth and Adult Wellbeing Assistant shares her story of being diagnosed with epilepsy as a teenager and what the wellbeing service has taught her.

My name is Jennifer and I work as the Youth and Adult Wellbeing Assistant for the Wellbeing team in Epilepsy Scotland. I was diagnosed with epilepsy when I was 14 years old.

At the time I was reluctant to acknowledge my condition and refused to tell anyone I was epileptic. Only my close friends knew because they had seen me taking seizures in school.

When I was 18, I was out for drinks with friends from university when I took a seizure. I have complex partial epilepsy, meaning that I lose my speech but am still aware of my surroundings.

This meant I was unable to tell my friends what was going on, so they just thought I was drunk, because of this they tried to take me back to campus, not realising I was in a potentially dangerous situation.

One of my friends realised that I wasn’t drunk and called an ambulance as I struggled to walk and talk. After that incident, I accepted that I had to tell people as it could have been a serious situation.

I was ashamed of my epilepsy as it made me different from everyone else and stand out from the crowd.

Epilepsy

 

Wellbeing group

My role in the Wellbeing team is to help organise and run our Breathing and Relaxation and Support groups as well as support people’s emotional and mental health through one to one support sessions.

I wanted to work for Epilepsy Scotland because I have a passion for working with people and wanted to support others who had epilepsy.

The Wellbeing Service and its participants have taught me to be proud of my epilepsy because I have been able to find a job I love and raise awareness for the condition.

I know being diagnosed with epilepsy can be difficult and if you’re like me, may not want to acknowledge or understand the condition.

I would recommend calling our helpline, even to get leaflets if you don’t feel ready to ask questions or talk yet.

If you do feel at that stage then our helpline is fantastic for answering any questions or concerns and can signpost you if needs be.

Our Wellbeing Service is also available if you are struggling and is also a place where you can meet others who have epilepsy. All of our groups are drop in and there is no commitment to speak in any.

If you are interested or would like to find out more, contact Bruce, Viola or Jennie at wellbeing@epilepsyscotland.org.uk or call 0141 427 4911.

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