What do you do?

daniella18

I'm epileptic and relive the same day.

Is there anyone else with epilepsy or medical condition that feel isolated?

If so how do you spend your day?

SaraC_Scope

Hi @daniella18

Welcome to the community. I understand the sense of isolation you can feel living with epilepsy. I experienced regular seizures for many years and they were unpredictable. I worked but had to have constant supervision and when I was unwell I spent most of my time asleep or watching TV. Thankfully things are better now, but I still live with the knowledge a seizure can happen at any time.

It's great you've come here for some advice. Have you visited the coffee lounge her on the online community. It's a great space for a general chat.

I found support from Epilepsy Action. They have some great resources and community spaces.

Hopefully when you have moments of feeling okay, you can link up with these community spaces.

Take care.

daniella18

I've tried epilepsy action, society etc I can't work at all, and it's hard to go out as h feel like a burden if you seize and there embarrassing especially when i can't talk and slurred etc

Louloubell1980

Ive had epilepsy since I was little. Many times ive felt isolated. From losing my driving licence 3 times, to losing 3 jobs and 2 friends to epilepsy too. I felt lost. But charities helped me so much. From being there for a chat. (Epilepsy society, epilepsy action and young epilepsy are great). To fundraising for epilepsy charities gave me a purpose. And my eldest daughter wrote her book epilepsy book for kids by layla reid which raises money for epilepsy charities gave me a purpose as i make it into epilepsy information packs for schools. Her book is for young children with epilepsy or have a parent or sibling with epilepsy and last year i wrote my book Jo's hidden secrets which i make into epilepsy information packs for teenagers/high schools. Helping others has really given me a purpose as a few years ago i was in a really dark place. Doing free courses with the council helped me learn topics i struggled with at school too. And helped me meet other people too. Hope this helps

Jimm_Scope

Hey @Louloubell1980, I just wanted to say I think it's amazing what you've done. I don't have epilepsy but my ADHD has meant I have struggled with jobs and friendships. I'm sorry to hear you've lost friends over epilepsy. It sounds like you have met better friends since however and you've really found a good place. I think you're quite inspiring actually!

Jimm_Scope

Hey @daniella18, I understand being embarrassed about the potential for seizures due to the effects it has. It can be difficult to separate that it isn't something that you should be embarrassed about.

Have you had a talk with people you go out regularly about how you feel regarding being a burden? You might find that they don't see it as a burden at all.