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Emotional Support

Fri, 04/13/2007 - 23:00
Hi all. Do any of you have difficulty of getting emotional support from other family members? I see many posts of family members and friends wanting to know how to offer support and understnding for those relatives and/or friends with epilepsy. My sisters offer no support to me. I have complex partial seizures. While my friends and co-workers are very supportive and understanding, my sisters are not. In fact, my friends and co-workers feel more like family to me than my sisters do. I was diagnosed with epilepsy in July of last year. Apparently, my sisters did not even believe me when I told them. After a seizure in which I injured myself, they both actually asked me if I was sure that it was epilepsy I had been diagnosed with. I was very hurt by the fact that they did not believe me. I even had to read the EEG report to them. I have tried to get them to look at this web site and others to read about my disorder, so they have a better understanding of me and some of the problems I have to deal with because of my disorder. I do not think either of them have. How do I get through to them that I need their support and help? Thanks. tlh64

Comments

Re: Emotional Support

Submitted by autumn18 on Fri, 2007-04-13 - 23:50
Hey, I'm some what in your shoes....I mean I have complex-partial seizures. I have all family support but mine started as a small 19 month old baby. So why dont they believe you? Epilepsy is real and NOT A MYTH. Even though some people still think it is it really is NOT!! Maybe you just need to have one in front of them or print off some information or blogs from here showing that you know other people that actually have epilepsy to or maybe you need to actually show them that you have epilepsy. Do you think that they would believe you then? I have a couple of questions.......1.) Does one side of your body go NUMB until you come out of it? 2.) Do you remember anything before you have one? 3.) Have you ever been told by a family doctor (regluar doctor) that you "fake" them? 4.) Basically what are your side effects? Well I hope some how they will believe you and it is great that your co-workers and friends support you. "Normal is just a setting on the washing machine, and those that have Epilepsy are far from normal!!!!!" (; Autumn ;)

Re: Emotional Support

Submitted by tlh64 on Sat, 2007-04-14 - 15:09
Hi Autumn. I think they believe that it is all psychological. I do have emotional issues and have for a long time. Additionally,I have been through quite a bit in the past several years. However, the complex partials started after I had one of my ovaries removed and the seizures almost always happened around the time of my period. In addition, this disorder runs in my family. An uncle has it and a cousin had it as a child. I had tried to get my family to read a paper with information about epileptic seizures and female hormones, but they refused to. While it has seemed that something wasn't right with me since I was in my twenties, if psychological issues had been the cause of them, then I would have had the complex partial seizures long ago. One of my sisters told me that it wasn't important why I have the seizures, just that they are controlled. She dosen't understand that it is important to me that they understand why I have them, that there are other effects of epilepsy, besides seizures, and that it is not something that I have done wrong in my life to cause them. One sister has witnessed me having one, more than once, in person, and I had one on the phone with the other. Every time it was around the time of my period, which I have tried to get through to them. Unfortunatly, I do not get any warnings that I am about to have a seizure. While my medication has them controlled for now, I do keep on alert around the time of my period and know there is an increased risk of me having them. Thankfully, I have never had anyone flat out telling me that I am "faking it". However, when I was trying to get diagnosed, since my EEG came back normal, the doctor I was seeing then believed them to be panic attacks. He didn't even read the journal I had kept that clearly showed a pattern to the seizures. They, including the department head, apparently, also did not know about the link between seizures and female hormones. Basically, they all believed that it was psychological. The doctor I saw after that, did read my journal and believed me. An EEG done later, did reveal some abnormal activity in my left frontal lobe. I can remember what I was doing before the seizures, but thankfully not what I do during them. There is also a time period afterwards, where I am awake, but have no memory. Usually, I will find myself in bed, feeling foggy-headed. Most of my seizures happen with others around, so I will call them and ask if I had one. I am told that I say odd things, stare, walk around aimlessly, will sometimes do things repetively, or not communicate at all. I have always been slower at doing things than others. That has kept me from being able to do certain things well. I have tried to tell my family that I can't do things at a pace that others can, but they say that I am just telling myself that. If I do things too fast, I get confused. I never learned to drive because of that. I have read that people with epilepsy do things at a slower pace than others because their brains cannot process the information as quickly. I have coordination problems as well. I just want my sisters to understand what it like to have this disorder. They also need to understand that there is a chance that they, their children and grandchildren can develop this as well and to not treat it as a psychologocal problem. Thanks for letting me vent some. tlh64

Re: Re: Emotional Support

Submitted by Shadow on Sat, 2007-04-14 - 17:18
I'm sorry your having trouble with your sisters. My family is and will be similar to your sisters if it turns out I have got Epilepsy. I've only told my mum as she witnessed a seizure so shes sticking by my side but my family are not very supportive and will openly say I'm faking seizures. This is what I'm dreading so I somewhat understand how you feel. My family thought I had Epilepsy when I was a little girl but this diagnosis was ruled out. When I was little (around 5-6) I used to look at fluroscent lights and pass out or become "funny". I don't know in what way I became funny as I can't remember anything about it as I was very young. But I do remember fainting at School when I was 8 and I was rushed to hospital. I was diagnosed with fainting brought on by lights and tests were performed which came out normal. I remember having wires on my head. Anyway I can clearly remember my cousin saying to me I collapsed on the floor and had a seizure and he mimicked the convulsions. He thought it was something to take the mick out of which I personally find disgusting. I hope you get some more support off your sisters. You could print off information about different seizures, even the very mild ones which most people don't realize are seizures and see if this changes their opinion. I do know a lot of people automatically think of Epilepsy as in collapsing on the floor and Convulsions - I used to think this myself but I know different know. Good luck anyway :)

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