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Helping my family
Mon, 02/05/2018 - 23:08Hi everyone,
I was diagnosed with epilepsy when I was 22 years old; it has been really hard for me but I think my family has had more difficulty dealing with it. I think I accepted my diagnosis one and a half years later. However, everyone around me has big issues about how to cope with it, the problem is that it's frustrating for me because they don't like talking about it; and that is precisely what I need. Can anyone tell me how to help them understand it? I don't know how to bring it up without everyone looking away so they don't feel bad for me.
Comments
Thank you very much, will do.
Submitted by Iocando on Tue, 2018-02-06 - 19:14
Thank you very much, will do. Specially because I need my family to be my main support group.
I get it. I had a hard time
Submitted by mereloaded on Wed, 2018-02-07 - 17:58
I get it. I had a hard time accepting as a mother of a child with epilepsy for a variety of reasons:anger, fear, shock, afraid of the future etc. It was traumatic for me too, and whether way I thought I was “helping” was in fact making things much worse!One of the things that helped me was joining this forum to communiticate with other parents without fear of people freaking out about it. Another th8ng, my son told me that i was freaking him out and that he felt uncomfortable by me watching his every move, asking him a million times if he was okay, asking him if he took his medication, worrying 24/7 , crying and being afraid etc.etc.etc I did not realize that I was hovering, limiting his independence and making him feel like a freak. I was part of the problem. After that I changed my tune for good! Never again! I’m glad that he told me, he was very sweet absolutely it too! My suggestion is that you tell them what bothers you .Good luck
see if there is a local
Submitted by rnemt69 on Tue, 2018-02-06 - 09:12
see if there is a local epilepsy support group nearby-they can be helpful with teaching materials and support if there is a group nearby. Learning more about epilepsy will help increase confidence in how to handle living with epilepsy. It seems others have a harder time than the one with epilepsy! The foundations web site has a ton of helpful information-perhaps they need to see that people can and do live well with epilepsy-share the content with them. Good luck!