I'm SO frustrated at my family's inability to try and understand.......

[Grazianina]

They all believe that I should fit some cookie cutter mold and that with a little meds be fine. I've had tonic clonic Epileplsy for 31 years and they are all still SO afraid of it. So much so, that they don't want me to do anything a normal person would do. Before being diagnosed with E, my IQ was 147. I had it re-tested recently to see how bad I've fried my noggin over these years and came back as 132. Still very respectable given the challenges. My meds have me pretty controlled. Although lately there have been some rough spots, but nothing I can't take care of. My parents are livid that I will not try to get on Social Security Disability. I have tried to explain that as long as my seizures are controlled, I am a perfectly funtioning member of society. The times I am not controlled is usually short lived. My mother thinks I'm selfish and not thinking of others. That my will to work....even if it's partially at home, puts myself at risk. So what should I spend my life doing.....watching soaps and getting fat?????? There are people out there with a genuine need who's seizures are completely uncontrolled. I don't want to take benefits away from them. However, I'm so sick of my family not getting this after 31 years.

[moonchild1970]

It is not selfish to accept the way things are. I myself have been having problems since 1997. Dr's blamed it on the Fibromyalgia- "A trashcan disease" as it is labeled. Where everthing is blamed on it.

Just recently diagnosed I am at the understanding that it is probably not going to get much better, as it has been going on for so long. And I have really gone downhill. Plus often hurt myself, (fallin down-etc.)just trying to live a normal life.

I myself use a cane and on occasions a wheelchair. I still feel there will always be those worse off than me but since I just cannot hold a job so be it. After all, we do have to pay bills too.

[Crystal11]

It might be something difficult for a family to understand. I've had Absence seizures since age 6 and now have complex partial seizures- my Mom didn't really understand until EEGs and education about it was given to her. Its hard to believe a person is in a seizure when they don't convulse or do the typical things. I don't look like I'm having a seizure when I really am. Most people think I'm sleeping or out of it, or God forbid, think I'm drunk or high on something. That is one major reason I ware an Medic Alert ID!
Anyways- my family is more educated about it now, I explained it in simple terms too. My twin sis has Epilepsy too and is visually and hearing impaired like me too. We both support each other. My best friend has Epilepsy as well and all of us live together. Kinda stressful at times but we are strong.

For someone to get SSI, their seizures would have to be at such a point, that they are having them just about everyday and can be shown on EEG. Most times, people take medicaitons but those don't seem to help at all either. Most people are denied becuase they have worked before- they are still able to work even though their seizures are getting in the way. You would have to litterally be stuck at home, having a seizure just about everyday and need some form of assistance. My friend applied for SSI and was denied. It would have to be pretty serious to get it. I have SSI myself.
I plan on finding work- since I know I'm capable of doing work. I am 26 and just graduated college with a B.A. and am ready to contribute to society and be even more independent. Seizures and my other disabilities gets me down sometimes but I know it could be so much worse.
Anyways- with so many people trying to apply for SSI, its real hard to get it now-a-days.
Anyways- you surely can give it a try and appeal for it as well, or you can see what can be done as far as working around the seizures you have.
There are also other services within the community or state that might be able to help out such as Vocational Rehabilitation. This is what my degree is in. They usually have an Epilepsy program for each state and they deal with people that have Epilepsy and want to work and maintain a job safely.

Everyone, take care and be safe..

[Belinda5000]

I've had seizures since I was two.
If it had been one of my nieces or nephews my mother would have gone to the ends of the earth for them to learn about epilepsy.
She never tried learning about epilepsy when i was growing up.
I'm told to stay calm so I don't seize and they don't listen when I tell them I don't have a seizure because I'm upset like I did as a teenager.
Belinda

[Nakamova]

Your parents should know that remaining active and engaged with work can be an important part of maintaining good health. It seems unlikely that they are going to change however, so unfortunately the burden is on you to be "zenlike" whenever they start to nag. Is there a therapist or a friend you can decompress with when your parents start to drive you nuts? Is there a way you can reward yourself after dealing with them?

[Chy Girl]

Im so sorry you parents don't get it I couldn't imagen not having my family behind me! We're always here when you need us!!!

[Grazianina]

I do maintain the whole zen thing around them. It actually irritates them. It's like they expect me to always be worked up and upset about being Epileptic. I joke about it and take it in stride knowing it's never going away so we'd better get used to each other. I can't think of anything I've ever seen them read or any information they've ever asked the doctor for to understand it better. Even though they are only 59 & 62 they seem to have a view of E like those 20 years older than them. My kids 17 & 19 seem to understand it better than anyone and are wonderful about it. They are the ones I feared would have the hardest time with it.

[skillefer]

Patience my dear. They are just acting out of fear.

[joan]

Seems to me, until E hits your life, we are all misinformed about it. I will admit when my son was dx in 2006. I kinda ignored it. Not because I wanted to , but more because I couldn't handle it. It sent me into a tail spin. When my daughter was dx in 2008 I had no choice but to face my fears and deal with them.

I am sorry you are not feeling supported and I wont make excuses for them but please.. understand.. its hard on everyone. Getting them educated in E may help as it will empower them to know the facts and NOT the 1920's bs beliefs.

Hang in there
joan*

[Ruth]

Maybe it would be a good idea if families would come here to CWE to learn.

[matchu]

I hit a wall with my family when I was diagnosed with NEAD. I give them info send them links, print out things for them to read and they just put it aside and continue watching tv, explaining that they don't have the time. I feel humans don't relate to other peoples problem so much, if they can't see what is wrong.. ie: a cast, neck brace, crutches.. I look quite normal, above average even.. go look.. he he he! I just moved from a negative household of my brothers into a positive household of my grandmother! It has been so nice to sit and talk with her. She and my dog are getting along great. My grandmother has me to talk to and is never too busy for me. My brother is the type of person that tells you blue is blue and then tomorrow he is telling you that blue is green and if you don't agree get out of my house! So I am glad I have left!

[Ruth]

Hi, very few people understand NEAD. Keep on educating people what you are feeling and going through.