Steph was diagnosed with epilepsy when she was 14 years old. She shares the challenges she has faced and how Epilepsy Scotland’s Youth Group service helped her.

How did you feel when you were first diagnosed with epilepsy?

This was actually a relief at the time. Teachers would say that I’m not listening or paying attention when as far as I knew I was. Now I know that was most likely because I was having absences.

What type of seizures do you have? How does it affect you now and in the past?

I was diagnosed with juvenile myoclonic epilepsy. I have three types of seizures. My most common are absences and the others are myclonics and tonic-clonics.

What challenges have you faced since being diagnosed with epilepsy?

Where do I start? When I was diagnosed and my school teachers were told, they instantly thought it meant I’d have tonic-clonics all the time and that my shy and nervous nature could be due to it.

They ended up trying to get people to be my friends (which had the opposite effect).

Near the end of high school, I was going to do an exam and saw on the paper it was a lower grade then I was expecting.

I spoke to the teacher, and she stated that she did put me down a level without me knowing as she thought she was doing me a favour for someone with my condition!

That being said my most challenging time so far was actually last year. I lost a friend to epilepsy (way too young and same age).

I then went on to have five bad tonic-clonic seizures during the course of the rest of the year which was unheard of – at most would usually be one tonic-clonic in a year.

Also, during these seizures, I broke my finger, nearly lost my sight, and nearly lost my hearing. The hardest part of it all was not the injuries but the worry I caused my family.

Can you remember how you became involved in the youth group?

I joined another group called enlighten which unfortunately didn’t last and then I was referred to the group through one of the youth workers coming to the hospital and telling me about what they do.

What do you remember about Epilepsy Scotland?

I wouldn’t be where I am today without it. I remember meeting new people, joining all these exciting events, for example, laser tag and adventure holiday, but the best part of it all was the friends I made and feeling my confidence grow.

When it was my time to leave, it didn’t stop. I ended up helping the group out at times with some activities and it was amazing to see members grow in confidence.

Where do you think you would be without Epilepsy Scotland’s youth service?

Hard to say. I would be struggling more than I am now to make friends. I might not really have understood what having epilepsy meant and I would have probably felt very alone.

In what way did the support help you with your diagnosis of epilepsy?

Making friends was a big thing for me at the time. I found it incredibly hard, very much an outcast.

I had recently gone through situations with people pretending to be my friends to make themselves look good and me being oblivious to it.

When I joined the club, without even really thinking about it, I started to make friends.

The information you got and hearing about other people’s experiences was a massive help not only for me but my family.

What would you say to people thinking about using Epilepsy Scotland’s youth service?

Do it!! As cheesy as it sounds it will change your life for the better.

Being with a group of people who are going through the same thing builds a natural bond as well as being able to get questions answered by the amazing staff when you need it.

It will also help your loved ones and put their minds at ease.

What would you say to others who have been recently diagnosed with epilepsy?

It’s important to understand that epilepsy can look different on each person but more importantly it doesn’t change who you are!

Never forget you are just as capable to do anything a non-epileptic can do.

Find a passion and surprise yourself through learning it! This has been a mantra that has worked for me.

I took a chance to pick up some weights to see what I could do and now I’m a training strongwomen. You will surprise yourself.

To find out more about our Youth Group Service, please click here.