Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Emotional Support
Fri, 04/13/2007 - 23:00Hi 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: Re: Re: Emotional Support
Submitted by Betajet on Sun, 2007-05-06 - 02:43
I am so sorry that you are struggling with the support or non-support I will say, of your family. My son is 13 years old and newly diagnosed with JME. He has just begun Depakote 3 weeks ago and I am trying to read and understand everything I can about this. I am a registered nurse but know nothing about epilepsy let alone living with a child who has it. I am trying so hard to understand if the meds are making him moody and irritable or if it is normal 13 year old stuff. I know it must be frustrating for him inside of his body in ways I know nothing about. And you know males....not always the best communicaters, plus I am not sure he knows what he is feeling. Anyway, I am sorry for you, that must be hard.
Re: Emotional Support
Submitted by tlh64 on Tue, 2007-05-29 - 23:41
Hi All.
One of my sisters has agreed to go to my next doctor's appointment with me. Hopefully, getting the information directly from my doctor will clear up some of the misconceptions my family has of my case. My neuroloogist is also her neurologist for her migraines. tlh64
Re: Re: Emotional Support
Submitted by tlh64 on Sat, 2007-05-05 - 21:46
Thank you all for all of your kind words. It helps to know that there are some out there that understands. I had another argument with one of my sisters. She still tells me that it is not important why I have the seizures. As I have stated before, it is important to me that they do understand. When my sisters tell me my seizures tell me that I have seizures because of stress, they make me feel like I am doing something wrong and that it is my fault that I have seizures. Most of my seizures happen just before or during my period. To me that, and the fact that the seizures did not start until after my ovary removal, means that hormones are making a large contribution to my seizures. She also told me off because I dared to do online research and understand my body. SHe made a comment about having other things to do in her life than do online research on ADHD, which her son has, or any other ailment that her family has. While we have other issues between us, I am tired of not being believed by my sisters.