Amy was diagnosed with epilepsy in 2022. She shares how her diagnosis impacted her mental health, education and how she has created a Twitter account for anyone who is struggling with epilepsy.
How did you feel when you were first diagnosed with epilepsy?
I felt like it was the end of the world. I felt like I was never going to be the same person I was.
It was like losing everything I’ve ever known basically. I thought it was the end of the world. I felt like I was slowly losing myself.
Hearing the words “You have Epilepsy” made me feel an overwhelming feeling that I can’t really describe.
I thought I was going to never be okay again. I felt a massive pain every day and felt so useless, until I finally accepted the fact I have it and its not going to affect me in every way.
What type of seizures do you have? How does it affect you?
I have tonic-clonic seizures and if affects me massively. Also, I have terrible auras, such as my right thumb tucking into my palm and I can’t move it, I have the feeling like I am going to be sick any moment and I also have cheek numbness and my full body tightens and after all those auras I go into a seizure.
I hate my seizures because I can feel it and I can see everything; I know what is going on and it basically feels like I’m dying.
Also, I can see everyone’s face and hear what is going on and it makes me miserable. I get terrible flashbacks everyday to my most terrifying seizures and it makes me so scared in case I have another one.
What challenges have you faced since being diagnosed with epilepsy?
I have faced lots of challenges. After getting diagnosed I felt like a completely different person.
I didn’t even feel like myself in anyway and started having massive panic attacks and anxiety tics and those have never gone away.
I struggled going to school for the longest time and didn’t go for about 10 months and then I tried to start going again and I hated it.
Also, I didn’t feel safe at all and I had panic attacks every class. It was such a struggle because I wanted to go but I couldn’t cope.
I had to leave school again for this reason and then me and my best friends clashed about me not going to school and we had this massive falling out and I ended my friendship with them all which affected me massively and it made me feel even more alone.
After this I got depression and I still have it.
Depression mixed with anxiety and epilepsy is one of the worst feelings in the world. It feels like its all connected sort of.
I suffer everyday with the struggles of anxiety and depression and all the effects with epilepsy makes it harder.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Yes definitely! Epilepsy is so much more than seizures; it affects me in every way possible. It affects everything in my life.
My social life got bad after getting diagnosed. It has got gradually better but at the start of my diagnosis I was terrified to see anyone that wasn’t my mum. I was terrified in case I had a seizure in front of anyone especially my family.
I hated thinking about what could happen if any of them saw me have a seizure. Thankfully that has got better, and I see my family all the time now and I’m not scared at all for them to see me having a seizure.
I am still terrified to go out in public and have a seizure in front of strangers. That would be my worst nightmare. I don’t even like talking to anyone I don’t know now.
I used to be very sociable before I got diagnosed and would be very cheery to strangers to cheer up their day but now, I can’t even talk to strangers without panicking.
Also, my mental health is a massive part of my epilepsy experience. My mental health got worse as soon as I had my first seizure.
After getting diagnosed I changed completely. My head was all over the place, and I couldn’t control it at all.
After a few months after everything happened and I struggled with everything going on in my life I started to have suicidal thoughts.
I thought all my family would be better off without me and I cause them too many problems and thought my life was pointless now that I couldn’t do anything, and I hated everything about my life. I felt so alone and felt if I talked to anyone, no one would understand me.
After a few months I came out of that very dark place, and I realise now I can still live my life with epilepsy.
Yes, I still have bad mental health but that can’t stop me from being myself and doing the things I love.
I now have therapy and it helps me so much with everything and I’ve finally accepted my epilepsy and it can’t stop me from doing anything and I want to help everyone who is struggling and going through the same thing I went through, and we can all help each other.
What kind of support do you receive from your teachers and the school as a whole?
I didn’t receive the support I needed and wanted when I went to school. I felt a lot of pressure from my teachers to catch up, which I fully understand but I needed extra support for my epilepsy and anxiety and that’s one of the reasons I left.
Thankfully a teacher I had stepped up and helped me get my NAT4s and all I had to do was go to the library to work there for a few weeks.
She was amazing and understood everything I was going through and helped me a lot when I was anxious and didn’t feel good. Apart from her though, I wish I got more support and extra help to get through.
How do you cope with studying, stress and anxiety that comes with that, as well as managing your epilepsy?
When I was doing school and went to the library for my NAT4s I coped with studying okay actually. I found it really stressful and some points but I got through by thinking I just need to do my best and ill get through this.
It was really hard but I had my teacher reassuring me and when I had panic attacks due to stress I just had to calm down and focus on something else completely for a while and take a break then get back to working on my NAT4s.
What more do you feel schools can do to provide support for people living with epilepsy?
I think they should not pressure you to do any work if you are already stressed enough.
One of my triggers for seizures is stress so whenever a teacher pressured me and said I need to focus unless I won’t pass my exams.
I felt so nervous and stressed and that didn’t help with my epilepsy at all so I think schools should realise the amount of stress and emotions people with epilepsy are going through and help them with their work instead of pressuring them.
I also think if someone feels anxious or feels like they are going to have a seizure, I think they should go to an unused classroom with their friends and do their work there and help them relax a little instead of being in a crowded classroom with screaming teenagers.
What would you say to others who have been recently diagnosed with epilepsy?
I would like to say to others diagnosed that the feeling you have right now, won’t last forever.
It is so hard, and you don’t feel like yourself anymore and that’s completely understandable. Any reactions to this recent news is okay. You’re allowed to react in anyway.
This will not affect you for the rest of your life and if you never need someone to talk to, I’m always here on my Twitter account.
This feeling won’t last, and your epilepsy doesn’t change you as a person, people won’t look at you differently, your personality will not change.
Epilepsy is a daily struggle, but you are strong, and you will get through it and be okay at the end of the day.
Is there anything else you would like to add?
My Twitter account is for people struggling and so spread awareness for epilepsy. This is a hard journey, but we can get through it together.
Anyone diagnosed knows the struggles and knows the pain we have all felt and its normal to feel like this, do not hide the pain and there’s always someone here to talk to you and be there for you.
Don’t give up.
You can follow Amy’s Twitter account called epileptic struggles by clicking here.