For me, being diagnosed with epilepsy at such a young age was difficult. It was very strange at first. There was suddenly lots of new information, new routines and things that had to be put in place for me as an individual and I felt very isolated. I felt like I wasn’t myself anymore. Having a physical disability is hard enough, but then adding another thing into my life. Wow. That took some getting used to.
I am bubbly, funny, talented, caring and fun. I’m not usually a talker when it comes to my feelings and thoughts so I naturally kept them to myself. When seizures happened for me, I would feel very upset. I reached a point where I thought that no one was around me. I became very snappy, angry, off and just alone. Not being a talker back then was great as I then convinced myself that keeping those thoughts locked away was a good thing. Not being around other young people who had epilepsy at the time made it worse. I wanted to just be alone.
I wouldn’t really sleep. I became really anxious when I was around close friends and family because the possibility of having a seizure ran on my mind constantly.
I became very paranoid when someone would ask me if I was alright as I just didn’t want to feel like I was burdening someone else with my problems. I would spend hours up at night. Not really going to sleep. Resulting in me having headaches. I would then head to college feeling tired. Even though tutors and support staff were there for me, I still felt alone.
I think it was also because I wasn’t ready to sit and talk to anyone yet. My defense mechanism was to just say I was ok and then shut the conversation down. Then I would go into a college toilet and cry. My mental health really suffered at that point too and I thought that putting a smile on my face was ok. For me, that was normal. When I looked at someone who was ok, I thought, ‘You have no idea what I have to go through.’ I’d retreat back to how I was before and just keep myself to myself.
Asking for help was really the turning point for me. I got to a point where everything became too much and I knew that talking at my own pace was going to be the best option for me in the long run. Wanting to talk was very daunting. Once I opened up, I immediately thought, ‘Oh no. Why did I say that?’ I can now be fully honest when it comes to feeling rubbish. Feeling isolated was hard, but reaching out to others and being able to let people help me was a massive step that I took.
Shining a light on the issues that I faced as a young person helped a lot. Things do become better. You are amazing. You’ve got this!
