I'm 17 years old and I'm terrified of having to live the rest of my life with this huge epilepsy monster towering over me.
Please will you help?
I started having absence seizures when I was a toddler. The doctors were puzzled, but said I'd grow out of them. Thankfully I did.
But then, when I was 13, I began having blackouts which turned into severe tonic-clonic seizures.
The first one, I remember going into the toilet at school because I thought I was going to be sick. I don’t really know what happened, but I wet myself and bit my tongue.
Afterwards, I felt everyone knew about it. People wouldn’t want to sit next to me or walk with me in case I fell over.
From then on, hearing the doctor say it could happen again, I was constantly on edge. When it did start to happen more frequently, it took over my life.
It was just hell, putting me in hospital every few months, leaving me with multiple injuries and emotional distress.
I remember the first school trip I went on in years. I ended up having two seizures and missed our bus. There must have been about 15 of us, and my teacher was annoyed because we had to wait an hour for another bus. I felt so guilty. Although I can’t control it, I felt it was all my fault. Everyone was late home because of me.
My school always made me feel like a problem. One teacher told me I had to go and work by myself in the library every lesson because our GCSEs were coming up and I was going to make people fail their exams. I always just felt like I was a massive issue in everyone’s life, and I didn’t want to. I used to lock myself away in the toilets at lunchtime because I was so worried about having a seizure and causing a problem.
That impacted on my mental health. It’s made me even doubt why I live sometimes. When they were so bad, I felt like I didn’t really have a life. My seizures were ruining everything. It was awful.
Then one day at the hospital I picked up am Epilepsy Action leaflet. Because my seizures were so bad and it was really affecting my mental health, I wrote down the Helpline number and called it when I got home.
It was just so nice to talk. They understood! They didn’t judge me, they weren’t nasty like some people were at school. It was really nice.
Speaking to someone on the Helpline really helped me feel like a normal person, like everyone else. I don’t think I’d be here today without that call.
Epilepsy Action really gave me the confidence to fight for more help and more answers.
It only costs around £18 to answer a call to the Helpline. Please donate today so Epilepsy Action can be there to help someone else, just like they were for me.
Because in the beginning, when I started having the tonic-clonic seizures, the doctors weren’t really doing anything about it. They were just saying, “You’re a teenager, and teenagers faint.” Their advice was to wear a helmet to school and drink more water! It was pointless.
People would tell me there was nothing to be embarrassed about, but I always felt so much humiliation. I felt like I wasn’t normal, and everyone else could do things but I couldn’t.
So when I called Epilepsy Action it was nice, because the lady on the phone had obviously spoken to a lot of people with the same condition. She made me feel like I wasn’t alone, like I wasn’t crazy.
She never judged me, she let me talk, and I felt so much happier when I got off the phone. I just felt good about things for once.
When Epilepsy Action shared my post on Instagram, I got hundreds of messages. People saying their son had epilepsy, or they did and this was the first time they’d opened out about it. It’s nice to be able to help people and make them feel less alone.
It was nice to know I’m not alone either, that there’s other people out there who’ve had similar things.
Because that does change lives
I felt so lost before. But I’ve always felt I connected with Epilepsy Action. I’ve always found reading other people’s stories really helpful. It’s helped me through it.
By donating today, you can help Epilepsy Action change more lives by reaching more people who feel lost because of their seizures.
In February last year, I had the scariest seizure I've ever had. I was at school and had seized for 13 minutes, leaving me unconscious for over an hour. I was admitted to hospital, where I continued having more seizures.
I decided then to fundraise and boost awareness for Epilepsy Action, because they've held me together and given me hope on the days I've felt like giving up. They provide with me with helpful information and always remind me that I'm not alone.
Without my family and Epilepsy Action, there's no way I would get through my tough battle of having seizures.
When the doctors were just pushing me back and forward with different things, Epilepsy Action were always so understanding. They’re my backbone at my worst of periods. They've been here when I've felt as if my seizures were ruling my life and I could no longer continue. They've been a shoulder for me to cry on when my down days were becoming too much.
Please, if you can, donate today so they can help even more people who need them.
In my first few years of having tonic-clonic seizures, they sent me so much information to help me understand my condition. There are countless awesome charities in the world, but Epilepsy Action has definitely been the one to give me the most hope! All I really want to do is say thank you. Not just for helping me, but the thousands of people in the UK living with epilepsy also.
If you can, please donate whatever you can spare - and help Epilepsy Action get this awesome support to more people who desperately need it.
Thank you so much!
An Epilepsy Action service user and supporter