Glasgow graduate praises incredible campaign from Epilepsy Scotland

Glasgow-born Jennifer Bell, 28, was diagnosed with epilepsy when she was just 14-years-old. She has no memory of her first seizure but knows it left her with scarring in her brain.

At such a young age, she initially struggled with her diagnosis as she had never heard of the condition before and feared she would spend the rest of her life living with the sort of seizures she had seen on TV.

“I initially felt quite limited in what I could do because my seizures were uncontrolled at that point. I couldn’t go to school, church or my youth group sometimes due to being ill which upset me as all my friends would be seeing each other without me” she said.

“I didn’t really get a lot of support when I was originally diagnosed because I struggled to accept my epilepsy. I only had appointments with my epilepsy nurse and neurologist but never reached out to anyone else.”

Jennifer, who now works as a youth and adult wellbeing assistant at Epilepsy Scotland, says her parents constantly worried about her after her diagnosis in case she took a seizure, and although her epilepsy is now more controlled they still like her to check-in.

While living with the condition can be difficult and frustrating, Jennifer has found it easier to live with over time. She said: “It’s just learning the right techniques, your triggers, and warning signs. Unfortunately, this may take some time, but it does get better. For me, I know that I can’t have chocolate, alcohol or caffeine. I watch my diet, exercise, and keep a good sleep pattern by not having too many late nights.”

Jennifer says the month-long #StudentSeptember campaign from Epilepsy Scotland is “incredible” and she wishes something like it had been available to her while at university.

The campaign will offer practical advice on all aspects of student life and will see the launch of a podcast and a series of blogs from recent graduates with epilepsy. 

Even though she says she was lucky to have a lot of support from her lecturers while studying Theology at the University of Aberdeen, Jennifer believes she would have benefitted from more support. She said: "I just wish I had it when I was at uni because I just think it would have helped me so much and made me feel less alone. 

"I didn't know anybody with epilepsy, so I didn't even really understand my own condition. I knew I took seizures and I was on medication but that was it, I didn't really get it, I didn't know the side effects."

She added: “Because of my medication I don’t drink, I don’t take chocolate and I have to be careful with sleeping, so I couldn’t go on multiple nights out and I couldn’t stay out late. Whilst I had a good group of friends, sometimes I did feel a bit like I was missing out on the student life because my flatmates would be having pre-drinks in the flat and then going on a night out and I might join them for a drink or just to stand and talk but I couldn’t go on the night out with them because I was too tired.”

Epilepsy Scotland decided to launch the campaign, to share advice and information for students to help increase awareness of epilepsy and its effect on learning, after a recent survey found 64% of respondents believed the condition had impacted their studying. 

Even though many students struggle with living and learning with epilepsy, Jennifer insists they can still achieve all their “dreams and goals”. She said: "I know it can be hard or you might not feel like you need it or you want it but ask for help, the support's there. Epilepsy does not control your life and I know it feels like it does at times, I get it, I do, but you are in control and you can achieve whatever you want to do. It doesn't stop you, you just need a way to work with it."

As well as helping students with epilepsy, Jennifer hopes the campaign will educate others about living with the condition. She explained: "Epilepsy is more than seizures, I don't think people get that to the full point. Building up to a seizure, you might not feel well, you might feel really tired, there are medication side-effects, there's more to it and I just wish people got that. 

"If you're being grumpy, it's not because you're being horrible, there's a good chance you're either going to take a seizure or it's the medication side effect so just give them a break. I wish people knew that and had more awareness of it."

Lesslie Young, chief executive at Epilepsy Scotland, said: "Our recent survey showed there remains a lack of understanding about epilepsy and the support that is needed for people with epilepsy to be able to thrive in further education settings. 

"Our #StudentSeptember campaign will aim to increase awareness amongst students of what epilepsy is and provide information on what to do if someone is having a seizure.

"We are also eager to increase awareness amongst further education institutions and make sure that Universities and Colleges across Scotland have the appropriate support in place for people living with the neurological condition." 

As part of #StudentSeptember, there will be a Seizures While Studying webinar on September 29 for all students with epilepsy, friends and peers, potential students and people who work with students. To sign up, click HERE.