Owning your epilepsy!

[Alwayslovecats]

Hi my name is Amelia, I'm new to this forum I have lived with my epilepsy for almost 25 fudging years now and I hate it! I try to not let it get me down but it does, any advice for someone who wants to own her epilepsy instead of the other way around?

[Adlon57]

Quite frankly Amelia, I know EXACTLY how you feel, having epilepsy for over 50 years, I have a brain, high IQ, but it's the old 'legends' over the years, how people see you if you have epilepsy, you are subnormal, stupid, should be locked up, etc, you've probably heard the stories. I remember a night in my degree class, a fellow beside me proceeded to have a small seizure, I was able to clear the area for him, loosen his clothing, make sure he was comfortable, no blockages in his throat, put him in a recovery position. Three people staring at me sitting on their chairs, "Are you in the Medical profession?" "No" I replied "I have epilepsy!" all three of them in unison drew back their chairs in horror! Their faces, I thought typical reaction?? Are you a member of an epilepsy support group, if not join! Ask your GP or Epilepsy specialist, there is usually one in your local area! The first time I went, very wary, but pleasantly surprised, usually a very open crowd, you are able to relate to your situation "Yes I feel like that..." "I did not know that?" "Where can you get that?" I have had to fight every inch of the way, it's not nice, but your particular victories, no matter how small, you can look back and 👍. I am a qualified cook, had my own genealogical business, a History degree, still writing that true crime history novel, but still fighting my nemesis - Epilepsy! Good Luck!

👍👍

[Alwayslovecats in reply to Adlon57]

I LOVE THAT! 😊Thank you so so much Adlon57 it's exactly that idea, of people putting us in boxes. I guess I have never been able to put my finger on it before. I'm currently doing an MA in fine art, you'll have to give me one of crime novels to read. 👍 Thanks again!☺️

[Adlon57 in reply to Alwayslovecats]

Glad to help Amelia, have been writing that book for 12 years, will definitely be over 13 as local PRONI will reopen in December🙄currently 45.000 words, plenty of info in it! Its peoples reaction to Epilepsy, and how it was 50 years ago to the present day, unfortunately it's still there🥴but getting better!👍

[happy48 in reply to Adlon57]

Will look forward to your book. Everything you said in reply to Amelia is similar to myself. Just add on an extra 10 years.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Amelia

Welcome to the forum! Adlon57 has given some great advice about joining an epilepsy support group. At Epilepsy Action we run a number of groups around the country. You can search on our website to see if there's one near you epilepsy.org.uk/near-me or you can join one of our virtual groups that are open to people anywhere in the UK epilepsy.org.uk/virtual-groups

You might also be interested in our free online course that's all about taking control of your epilepsy, Epilepsy and You learn.epilepsy.org.uk/cours...

Grace

Epilepsy Action Helpline Team

[Alwayslovecats in reply to EpilepsyAction1]

Oh thank you so much!