My daughter 14 refuses to talk about her seizures and gets cross with us for 'fussing' over her.
she wants to go out with her friends which we want her to do as well, but when we asked if we could talk to her friends to explain what they should do if she has a seizure she got so upset and begged us to let her tell her friends herself.
Obviously we fear she wont tell her friends as she refuses to talk about it & gets upset,
What should we do?
Telling your friends you've epilepsy isn't easy. Never did. I would have been furious if my parents had let on. Let you daughter deal with it herself. My parents shoved a pile of epilepsy advice booklets under my nose in the hope I'd read up on it. I didn't. I told all to a neurologist. He helped, prescribed the right meds and I was OK for 10 years. Epilepsy came back. Switched meds. Had learned to look after myself by then. Never told any friends or colleagues. My wife told a few people. They gave me a wide barge.
Exactly same issue when our daughter was first dx. We compromised with her agreeing to let us talk to their parents. Also ordered lots of mini info cards from epilepsy.org which she gave to her friends. She still doesn’t like to talk to her friends about it but now : two years later she is getting more comfortable with talking
My son is 14, has his first tonic clonic last November. Had another 3 after this and then was prescribed Lamotrigine. He hasn’t had one since being on this medication. Like your daughter, he too refuses to talk about it and won’t let me tell any of his friends. He thinks now he hasn’t had a seizure in 6 months he hasn’t got it anymore and that he is ok.
I was 15 when I had my first seizure but I was with friends at the time and they all rallied around and supported me. I was very careful about telling other people because at the time (1972) there was still a strong stigma around regarding epilepsy. My parents had a bigger problem with the term epilepsy and always referred to my seizures as “turns” or “funny turns”. What I did learn that if someone was a true friend they did not shy away but accepted me for what I am not what medical condition I may have. Once your daughter has accepted her diagnosis she will tell her friends and her true friends will give her support and confidence. I know that you are trying to protect and help her but please don’t cover her with cotton wool because that can have the opposite effect and put pressure on her that she doesn’t need. Her confidence in telling other people will grow as she goes along this journey and all you can do is to be there to help and support through the rough times as well as the many good times your daughter will face in the coming years
Thank you all for your advice and word of support, it has helped greatly to read your experiences. Thank you & take care xx
Honestly, speaking from the point of view of your daughter as I have been in her position.
I wasn’t in denial about having epilepsy, I was just frustrated that people saw the epilepsy instead of me.
My personal feelings towards this are; I don’t like talking about my seizures/epilepsy, what’s the point in talking about something you can’t change and it stresses me out to keep it on my mind, I didn’t tell my friends for a long time, some still don’t know. People judge you, stop asking you to go out places and do things, make it constant topic of conversation when you do manage to go out. Now I get why you are worried, it’s scary for you she’s your baby and you want nothing bad to happen to her, you want to talk about it to clear your mind and make sure she knows how serious it is, but I would just say let her deal with it in her own way, she will tell her friends when she feels ready to (if she has a seizure more than likely her friends would ring an ambulance or get some for of her anyway so it wouldn’t be essential to tell them exactly) and honestly I’d wait for her to bring it up in conversation with you, not the other way around.
I sit now and chat with my mum about it but very very rarely and only when I initiate the conversation 😅
Please don’t take any of what I have said in an offensive way, it isn’t intended! Just that was how I felt/feel in your daughters position. She may feel the same the same way?
Xx
Thank you for your response, it was very helpful xx
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