Rachel was first diagnosed with epilepsy when she was 11 years old. She shares how she felt when she was diagnosed with epilepsy, how she felt when she was told that she no longer has epilepsy and how important Epilepsy Scotland and our Youth Group Service are to her.
When did you first get diagnosed with epilepsy?
I got diagnosed with epilepsy when I was 11 years old (roughly 10 years ago). My family and I first noticed the signs of epilepsy when coming back from holiday as I kept shaking throughout the flight home.
My family thought I just had a temperature but then the next day I went to hospital to have an EEG and that’s when I got the result back that I had epilepsy.
How did you feel when you were first diagnosed with epilepsy?
I felt very alone and confused as I had never heard about epilepsy before.
I was scared as I didn’t know what was happening to me and thought ‘why me’ and ‘does anyone else have epilepsy that I know’ I felt very lost within myself.
What challenges did you face?
The challenges I faced was I was in and out of the hospital with appointments that I would stress about, and I was going into high school so I was very nervous if I would be judged or seen a different way because I have epilepsy.
I got bullied throughout high school due to my epilepsy and other stuff which made my seizures worse as stress was a trigger to set my seizures off.
I lost many of my friends as they were all scared, they could catch epilepsy like a cold bug (which you can’t!) but this had a big effect on my social life (and still does) as I was a very shy kid who didn’t feel I could trust anyone or be accepted by anyone.
How has epilepsy Scotland and being in the youth group helped you?
Epilepsy Scotland has been amazing for me.
When I first joined, I was in shock that I was not alone, it made me feel accepted again. I have made great friends who have been there for me every step of the way.
It has made my confidence come back and that it’s ok to have epilepsy.
You know longer have epilepsy, how did you feel when you heard that news?
When my epilepsy doctor (who was amazing) told me I no longer had epilepsy I was in shock.
I remember being so happy, but I felt mixed emotions as I was nervous that I wouldn’t be able to go back to my youth group friends.
My family was very emotional that day as my dad faced epilepsy when he was younger and was so proud to see that I got through it as he did too. It felt like a dream come true!
How did you feel when you came off your medication?
I was very cautious about coming off my medication as I was scared, I would have another episode (shaking) or another seizure.
I talked to the doctor about this, and I came off the tablets very slowly. When I was off my tablets completely, I felt more awake and less tired.
What is life like now and what would you like others to know about epilepsy?
I feel like now still has its ups and downs as does everyone but from now to coming up to 10 years ago I feel I’m a different person. Also, I feel more confident and more accepted within myself.
I do still have to deal with mental health stuff which were caused by epilepsy like anxiety but I’m getting there every step of the way. I’m still very wary of people and social life due to past experiences at high school.
I would like other people to know that epilepsy isn’t something you can catch like a cold. People with epilepsy don’t choose to have seizures or episodes.
But for those who do have epilepsy, I would like you to know that everything is going to be ok, it’s alright to have epilepsy and you are an epilepsy warrior!
Why is epilepsy Scotland still so important to you and what would you say to someone who is thinking of joining the Youth Group?
Epilepsy Scotland is still a huge part of my life as they have helped me through my journey.
Having the Epilepsy Scotland Youth Groups are great because if you have a rough week or if something has happened, they are always there for you to talk and it’s something to look forward to.
The friends I have met there are lots of fun, a wide range of friends that can have a laugh and accept each other for who they are.
I would say if anyone is thinking of joining the youth groups, I would just say go for it.
The leaders are lots of fun and super supportive of everything. I would say I know it can be daunting joining a new group, but everyone is very welcoming as they all have similar experiences of what everyone has gone through.
Please help us to continue to be there for people like Rachel by donating to our Christmas appeal.
To donate text BECAUSE to 70085 to donate £3. Texts will cost the donation amount plus one standard network rate message. Or donate by clicking here.