Is anyone else's family in denial?

[Jfpinell]

It almost seems like my family (especially my Pa) seem to have been in denial (at least that's what it seems like to me) most of my life about this.
I was so overprotected and sheltered as a little kid, but then almost overnight, at around 16, my Pa had this attitude that I should be able to get a job like everyone else. At around 20 he started going on about that I should be able to live on my own and that there was "nothing wrong with me". He accused me of "quitting college" even though HE was the one that suddenly 1 semester refused to fill out the parents' information section of the financial aid forms stating "It's none of their ____ business what I make!" (Never mind the fact that according to Federal law parents' information is required for processing except in a few circumstances -none of which I fit until you're 24, if I recall the age right). Obviously I couldn't attend school ($$) without the grants from the Federal and State government. My G.P.A. was never all that great due to processing issues, and, until a few years ago, (finally) an apparent undiagnosed leaning disability -even in grade school. Needless to say, he always blamed it on me not "buckling down and studying".
The meningitis that I had at 2 weeks old (that was the cause of the seizures), is a fast-acting, very serious illness. I mean, I could've gone blind, ended up mentally retarded, lost limbs... I was told that it can kill you in a matter of hours if not treated! I mean, HELLOOOOOO! Uhhhh, don't you think that something that serious that directly attacks your spinal cord and nervous system could do some damage to my ability to learn and process and affect my ability to get a job like everyone else? Did you ever think that just maybe it's not my fault? To this day it's affected my self confidence and, even 39 years later, makes me feel like I've never been successful because I didn't want it? I can't handle 2nd or 3rd -let alone rotating- shifts (something else he never seemed to believe. "Everyone else can do it, you can too.") To this day, I wonder what his thoughts are of me.
Anyone else ever get this attitude from family or in school?

 

[mel239]

Up until recently,we thought my seizures stemmed from a small stroke I had a t work 3 years ago and who knows? That may be part of what has made it worse,but this last episode I had was an occurrence I have had hundreds of times growing up and always thought was a dream.I will never tell my parents,they already think my hallucinations are psychotic my emotional instability is stress and depression.My ex beat on me and its better if she continue to think he caused seizures from hitting me too hard rather than let her think she wasnt a good enough mother to see her oldest child having a seizure disorder her whole childhood.females in my family get eaten alive with guilt and I feel better this way.YES-my whole family-takes what they want anyway and if you have nothing to give because you are sick or needy,you are forgotten-sometimes for over a year or more-even though they live 15 miles away

 

[elizzza811]

I hear you. I'm 46 and my sister has been helping me financially since 2005...that's a confidence killer. I didn't know what was wrong with me. All I knew was something was terribly wrong and I couldn't work. I couldn't sleep...I was waking up confused, with severe memory problems...occasionally I'd feel like I was going to pass out...or I'd run red lights. I told my sister about all of this, but doctors weren't finding anything wrong with me, and sorry, but when doctors are telling you 'it's all in your head', family isn't too forgiving.

Then I was diagnosed with chronic Lyme and a few of my symptoms cleared up with long-term antibiotics, but many of my symptoms remained untouched. My sister once told me when we were arguing that, "Some people don't even think I should be helping you at all!"

But then I drove my car into a ditch back in December, ended up in the ER, and now everybody seems to finally be taking me seriously. They even seem to want to help me. Hang in there. It's a shame I had to crash my car to get them to take me seriously and realize I wasn't faking, but hey, at least things are better now. I finally feel like I'm believed, which is the BEST feeling.

 

[CrunchyFrog]

But then I drove my car into a ditch back in December, ended up in the ER, and now everybody seems to finally be taking me seriously. They even seem to want to help me. Hang in there. It's a shame I had to crash my car to get them to take me seriously and realize I wasn't faking, but hey, at least things are better now. I finally feel like I'm believed, which is the BEST feeling.

It really is a shame you had to crash your car to get them to notice

This has being described by lots of people here. There is lots of ignorance surrounding our invisible disease. It really is sad that some people need to actually seriously hurt themselves to get people to believe them.

I can in a way understand the frustration family might feel if they have to support you. But, I wonder if they understand the frustration you probably feel because you need to be supported by family. If you can't work or drive you've pretty much lost all your independence. People need to realize that people don't choose to have Epilepsy.

I've been really lucky I only spent a bit more that 6 months not being able to drive or work and I hated it. I was just lucky I actually have a great family. My partner became my Taxi service and my Dad paid my medical bills without making me feel guilty about it. I've experienced a lot of ignorance but I can't imagine how hard it would be to not have your family on your side. I hope maybe in time they become more understanding..

 

[Jfpinell]

Last christmas my brother and sister were up and we got to talking about something. Then suddenly the convesation changed to me and employment (or lack thereof). Now, I've had my heart set on our local volunteer F.D. ever since I could walk...literally. Having this condition since I was 2 weeks old, I think I know how they tick better than anyone else -unless they can walk on water. If I didn't feel safe doing that, I wouldn't. My sister flat out accuses me of "being in denial" of my condition, and started going on about sheltered workshops -where people earn piece rate, which amounts to less than min. wage! (How the State can authorize them to do that is beyond me!) I'm more capable mentally and physically than the people who usually find themselves working in those conditions (many have court appointed guardians because they can't function at a "normal" level. If you get the picture of the kids of places I'm refering to.)
Uhhhhh....hello (again)! .....First you insist I should be out working like everyone else, and brush off my concerns about my limitations I have (such as 3rd or rotating shifts, etc. -which I think I know better about myself than you do, Sis.), and then you turn around and in the next sentence accuse ME of denial and what not? Hmmmmm...interesting. It makes me feel like family often likes to use me at their descretion. When THEY feel I'm able, then I'd better, or I'm making excuses. When they feel I can't, and I insist (and often explain how) I'm able I'm "just wanting my own way", as they say. Is it any wonder why my assertiveness know-how is almost nothing, and why I don't trust my instinct as much as they do, and often, almost 40 years later, feel I need to go seek advice before I decide much of anything for myself? (Of course, then often I get a lecture on not giving myself enough credit.)

 

[Endless]

My family all thinks that I can work. My friends don't. My sister especially thinks nothing is wrong with me, and it's all in my head. (Well, actually it physically IS, but not imagined)

My sister just doesn't speak of it, and actually gets a little angry and dismissive if I bring it up and says, "well, we all have problems, don't we?" (she has no health issues, only financial ones that she herself has caused)

The rest of my family asks when I'm going back to work. I don't have an answer. My friends see more of me than my family does, and they think it's nuts to think I could do any form of work right now, because of my inability to reason/lack of logic, and exhaustion.

One of my friends laughed (it WAS funny) when I stood there trying to get my car to open using the remote and it just wouldn't open. I swore under my breath and wondered how to change the battery in a key. Then I physically tried to fit the key into the lock. It just wouldn't fit. I kept doing it for about 2 minutes before she said, "it's the wrong key, honey. It's my key." I laughed, too. But you know what I mean.

I don't know what to do with my family. I'm just tired. My mom is coming around, but slowly. Wish my sister was.

It's very little comfort, but you are not alone. Unsupportive families or families in denial are common for us. Sad. But that's the way it is.

You've got us, so chin up.

 

[Jfpinell]

Some of it may come from fear -even 39 years later. But yet, I hate to have to say, I wonder what Pa's first thoughts were. If it was along the line of "What's going to happen to our baby?" or more along the line of "Oh geez! I hope the h__ we don't end up taking care of him the rest of our lives!" Sad, but given his extreme type "A" personality, among other personality traits, I really have to wonder. Strange thing is, THEY were the ones that originally made the appointment at the Social Security office (without telling me). I had do darn near walk out of there before they accepted the fact that I wanted to talk to them myself. I told the lady that at this time I don't feel I need this. (this was about 23 yeas ago and wasn't having as many). They've nudged and nudged all my life to get me to go get this help, go find out about that help, go check out this assistance.... I don't have the amount of pride and ego most men do (which I think is a gift from Someone upstairs) and I'm more willing than most to admit when I need help, but even with me there's a limit before I feel totally helpless. (I'm on S.S. for about 12 years because of the way things are.) They'll do things like make appointments like that FOR me, but then act like everything's fine (when it seems convenient for them to do so). Everytime I bring up the issue about how I feel I'm being treated, I hear "Oh, let's not start THAT again". I cannot believe for a second that everyone in the family is THAT dense or stupid -to put it bluntly- that they can't see what I'm saying and the difference in the way I've been talked to all my life as opposed to the other 2 kids. I wish I knew how to try to make sense out of this or at least get people to understand that I've got a point.