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Frustration with 'The Fam'.
Fri, 10/13/2006 - 20:54Hi!
After many years I am finally getting some answers for my conditions as I have found a fab Neuro (he suspects TLE and Partial Complex Sezuires). For 7 years I was told I was having panic attacks. Ek!
I have been like this my whole adult life (from the age of 17), and it has been horrible and very difficult to deal with. I am SOO excited I am now on the right path, and I am also scared.
Don't get me wrong, I have a very supportive boyfriend who comes to all my Neuro appointments etc, and my family is great. ALthough I get the very strong feeling that they get sick of me talking about 'it'. I like to understand what the tests are that I go for (for example the Telemetric Study) and it's almost as if they get angry at me for talking to them about it. I also want to FULLY understand what is happening to me - this also seems to annoy them. Before I was speaking to my mum and was saying how the heat sets me off and makes me feel awful (its really hot here today in Sydney!), and I almost feel like she thinks I am making it up or that this has just started happening since I started reading about TLE. So I have become paraniod or similar. I then start to doubt myself and become really critical of myself.
They all seem to think i should just let it be and not even really care. How can I do that when I have had this for 7 years and it has almost completly wrecked my life?
Is it normal to have such a interest? Am I over doing it? Am I wrong for wanting to understand everything that is happening to me?
I tend to think to myself they just dont understand. Which I suppose is the case. Does anyone else have this problem? Is there anything I can do? I'm thinking there might be a support group I can join.
Thanks for listening.
Bedge
Comments
Re: Frustration with 'The Fam'.
Submitted by Elysia on Sat, 2006-10-14 - 12:26
I think some people, mothers especially have that underlying feeling of ultimate responcibility and the reaction of "my child in normal!" They don;t want people to think their bodies, or something they did caused their child to be "awhh, oh my god, epileptic!" Hush hush.
What parents and family need to come to terms with is that our E does not make us outcasts, less capable, or stupid. I think those of us with E are smarter, determined and well educated about our symptoms, meds and tests.
I remember in elementary school a girl I knew would have grand mals and she usually had some type of injury as a result of her convultions. Even the teachers got to a point where they would just walk away from her, lying there on the playground, jerking and foaming at the nose and mouth, because "she was trying to get attension". If that was today, the school would be sued (although her parents didn't believe her either). No child will physically bloody themselves let alone make spit and snot come out all over there face because they need attension. Finally in highschool when she has a seizure driving, they woke up.
Educate yourself, don't let fam or others keep you from learning. Dont let them make you think you are making a bid deal out of nothing. Lean on us when you are down! :)
Hey Elysia, That is such a
Submitted by Bedge on Tue, 2006-10-17 - 02:21
Hey Elysia,
That is such a sad story about the girl at your school. I don't understand how people can honestly think someone would do that for attention! This is not the first time I have heard of people passing it off with that attitude.
Even my Neuro commented about the possibilty of me having some possible sudo sezuires mixed in with the TLE. He went so far as to explain how people do think 'why would they do that to themselves'. Obviously this is a common thought process. I am so glad I have such a great Neuro who really seems to understands me.
I think my parents might possibly think that its easier for me to dwell and take comfort in this illness rather than constantly pushing on and batteling through it. I think I am going to take the parential unit to my next Neuro appointment after I have the 6 hour EEG.
I have decided that my Dad can take me to the hospital and wait with me while my poor brain gets hooked up for the EEG. Maybe that will scare him. hahahah. Does that sound mean??? hah. I feel like maybe shocking them out of a reaction will do the trick.
Oh god! Susan! That's
Submitted by Bedge on Sat, 2006-10-14 - 09:04
Oh god! Susan! That's hectic! It's all really strange, I have never had this problem before with my fam. I'll say something to them about the big 'E' and it just gets completly passed off or brushed over. It's like - next subject please! So much has changed, but nothing has really changed at all! I almost feel they are not even happy for me for finally getting diagnosed (informally) .. and its like they think my telemetric study might subtrack from the fact my original EEG has peaks in my left temporal lobe and my symptoms are that of partial complex sezuires. I don't know what they are 'wating' for. Have you all found that time changes these situations? Is there any way I might be able to approach them or 'it'? Thanks for all your experiences so far.