It’s the main thing I’ve taken from my experiences since I spoke for the first time about having epilepsy recently. The number of people I’ve met who, because they now know about my epilepsy, are more open about their friend, ex-girlfriend, brother etc who has it too…. That’s been one of the loveliest things about becoming a public advocate for this kind of thing.
Had a rake of e-mails too from people who wanted to tell me their own stories. Most requested anonymity but I’m going to excerpt a few just to illustrate the kind of pressures someone with epilepsy goes through every day…
In early October I found out I had epilepsy… and I cried because I was scared. I didn’t know what it was and no-one that I know has it! I’m now on medication and their doing a grand job! I haven’t had a seizure since October! Ive also found out that im the only person in my whole school with epilepsy… and im ok with it! I thought id email you to say thank you in a way! With you helping people all over Ireland to understand epilepsy it makes me feel proud to be who I am now and not to be afraid of what people might think of me!
Over the years when counselling patients and families about epilepsy we did not have someone here in Ireland with whom people could relate to in relation to epilepsy. Not every child can relate to Julius Caesar, Handel or Alexander the Great (just some of the famous people who had epilepsy)!!!!! So maybe now with you on board with ‘Brainwave’ we can look at making epilepsy more ‘touchable’ and less scary. We needed to have a person who can carry on their daily life, being in the spotlight to some degree, and living happily with their epilepsy.
As I am so private about it, I can only imagine it must have been a bit of a decision for you to come into the spotlight. I only wish you were around in 1995 when I found out and didn’t really have much information. (My Mum registered me as a member of Brainwave and I used to throw their letters in the bin!). I truly believe that the fact that nobody really talks about epilepsy, coupled with the odd story along the lines of ‘I saw someone having a fit once and it was so scary looking’ – type thing, that makes the condition a more stigmatised/mysterious one!
Thanks for ur commitment to brainwave. Our son who is 12 has epilepsy, he is very impressed. Congrats
Like you, I developed epilepsy in my teens and probably spent too long asking why. I’ve gotten over that now and for the most part have learned to live with it. But I’m not so sure I’d have the courage to go public as you have so well done on that.
Your interview with Ryan was great, and I’m sure your involvement will be encouraging for lots of people. I have very little knowledge about epilepsy, so must check out the website later.
It’s been the loveliest and most positive experience 🙂 Remember if you want to find out more you can check out Brainwave HERE.
As a final thought I want to apologise about the interview in this morning’s Irish Daily Mail. While a full page in a national newspaper for the cause is always great, through whatever miscommunication there was between the journalist in the UK and the paper here I’m quoted as talking about having “fits” and calling myself “epileptic” – the very kind of terminology that is impossibly old hat these days and the sort of thing I’ve tried to correct in interviews so far.
The piece is written in the first person as if it’s my own handiwork (although I’m sure me talking about having my first seizure on “Boxing Day” might be a giveaway that it wasn’t written by me) and I’d hate to think that anyone thought it was anything other than an interview given over the phone that (as anyone who deals with print media will tell you) is open to misquotation.
Well done on raising awareness, Rick.
I have 2 friends with epilepsy – as a medical student I never thought twice about epilepsy in terms of stigma, but their different experiences really illustrated it for me.
Both were diagnosed as teenagers
One had a perfectly normal upbringing – she was in charge of taking her tablets and just lived normally (depsite having poorly enough controlled epilepsy).
The other is still slightly ashamed. when she told me, there was such drama and shame I was shocked. Her parents told her not to tell anyone and there was always letters to teachers etc.
The funny thing is that her parents have a medical background.
I’m sure your story will be empowering for many more who are who will never email you……and break down the stigma.
Thanks Auds 🙂
I know you don’t want to go into it much more Rick, but I did wonder whilst having a peek at the Mail today what happened with the story. It is interesting that they are using UK based journalists to write copy for their Irish publication.
I know that a lot of the paper is UK sourced stories but its interesting to realise that (many of?) their Irish stories are being written in the UK and probably copyedited there too. Well done on the patronage of Brainwave and the positive impact you have having for those with epilepsy.
It’s a weird one alright Suzy; I was interviewed by a journo in the UK because they don’t have any health writers here. I did get slightly worried with her seemingly almost total lack of any knowledge about Ireland. I had to spell RTE for her…. Seriously.
It just rubbed me up the wrong way because I spent time with her, as I have done in all the interviews for this, explaining the terminology that’s used these days. I suppose “fit” is a shorter fit on a headline than “seizure”…
But, as we’re a relatively minority interest group we have to take whatever coverage we can get.