I don't know if I should have been insulted.

[dfwtexas]

Due to changes at my insurance company, my neuroligist can no longer do lab work, so I had to go to my home away from home, Baylor hospital. When the young lady was doing the paperwork, when she looked at the doctor's orders, she said "oh, my...you have seizures". I just say yes and finished the paperwork and then she asked if I knew where to go for the lab work and I told her if she pointed me in the right direction, I would find it. She inisisted walking me down the hall, got the elevator for me and then said, just go to third floor. She kinda acted like either she thought I was a mental case or slow. As many times (too many to count) that I have been there, no one had helped me to that extreme. So was she just being helpful or did she think I couldn't be left alone? Maybe I am just being overly sensitive...my family all know now that I have seizures and they are very uncomfortable when I want to talk about it. My mother is always saying how concern she is when one of my kids or grand kids get flu, etc. I asked her if she was concerned about my seizures and she said "no, it something happens, you had a good life".
I decided to take a break from her for awhile.

 

[Rach_nc1984]

Wow- there were a few times that I have been treated like that, but they were after seizures, so that is a little more understandable...I think that if I had been in that same situation, then I would have probably felt as if I was being treated like I couldn't be left alone. That sucks.

 

[Eeyore89]

I know what you mean. Sometimes when you tell people you have seizures, they act like you're going to have them at any minute. My mom has never treated me like that really. She just wants to make sure I'm safe, but she knows where to draw the line. If I think I'm going to need help or something I ask, or I tell someone. The nurse could have just been friendly. I'm like that, I like to show people where things are at, but it also could have been that you have seizures. Although as a nurse I would think she wouldn't think you needed to be watched constantly. As for what you're mother said, I think that's kind of awful, no offense to you're mother, but just b/c you have a seizure does not mean you are going to die. My mother has expressed her concerns, but only when she feels necessary, but I guess I take advantage of that. I'm sorry you're mom said that to you.

 

[skillefer]

Hmmm...as far as the nurse is concerned, maybe she thought she needed to accompany you because she's had other people with E come to her who needed that much attention. Or, who's medicine made them a bit slower to understand. (I try to give people the benefit of the doubt...) As for your mom, that may be her way of dealing and coping. I don't know that she said it to be cruel...but she may have helped herself cope with the possibility of SUDEP or death due to accident by telling herself that for many years...everyone deals with things differently. As I said, I give everyone the benefit the doubt, and I have no clue what your mom is like.

 

[dfwtexas]

Well, in all defense, the young lady at the hospital wasn't a nurse. She worked in the insurance office. I tried telling myself she was probably trying to be helpful and may not understood about seizures. I know my knowledge wasn't much on seizures until it happened to me. It really just hit me odd, I wished she would have just asked me if I was in danger of seizing and needed the assistance.
My mom....well, she has always been pretty toxic to me. In my 48 years, there has been 12 years that I had no contact or interaction with her at all. Most of that time was encouraged by my therapist. You have to live with what God gives you when it comes to parents.Truthfully, if my Dad wasn't in such bad health right now, I would probably walk away from her again. It really did hurt me a lot, so right now I will just take a break from her...since she is so use to me not being around (and apparently has prepared herself for me dying!), I don't know she will even notice that I'm not going to call her or take her calls until I get over the sting of her comment.

 

[dfwtexas]

Skillerfer,
Although I have known about the seizures since early last year, I did not tell my parents until Thanksgiving. So in the past 2 months that my Mom has known, she has already told herself that it is just a matter of time before I l die from seizures. I just don't know how to justify this (among a lot of other things she does/says). Basically, she is not a nice person. Most of my friends have seen her evil side and cannot believe I have given this woman chance after chance. I pray every night that one day she will change, but at her age of 72, I just don't know that will ever happen. I just know when she dies, I can say I made ever attempt with her. If she is right and I die before her, I know she could never honestly say the same.
Jen

 

[Belinda5000]

I think I'd have been insulted myself. I've had ppl at hospitals show me were
the elevator was after I'm given instructions get u lost.

Belinda

 

[Rach_nc1984]

Sorry about that jgb--the only thing I can think of that might be contributing to her attitude towards seizures is her age. When your mother was born a lot less was known then than there is now...Much more people believed that people that had epilepsy, and for a very long time into the 20th century people with epilepsy were not allowed to have children. I too like to give people the benefit of the doubt, so maybe your mother doesn't know the basics of epilepsy...Maybe try providing her with information. Buy a book about it at Barnes and Noble or online. If she reads it, then maybe she will have a different view on epilepsy. I don't know your mother obviously, but I would try to give her the benefit of the doubt and attribute her attitude to a lack of understanding...Best of luck to you.

Rachel:e:

 

[dfwtexas]

Well, I wish I could blame her just not knowing...but my Dad had 2 seizures in 80s and was on seizure meds for a few years. She knows more than most people...when I told them at Thanksgiving, I went over what my seizures are like, my meds, etc and asked her if she wanted this website to learn more and she said she knew enough and didn't want websites, books, magazine, etc. My Dad was more interested, but he couldn't understand why I was having so many seizures in the beginning. On Christmas day I told her it was another month with no-seizure, she said "What's the big deal...isn't that what the meds suppose to do".... I am really hoping to find out I am adopted one day! hehehe

 

[Crazy Monkey]

Hey JGB

I am very sensitive about any remarks to do with seizures, whether they are aimed at me or not.

My Epilepsy is a 'no talk zone' in my family, I don't spend loads of time with them, but they think that just because they don't see me have a seizure, that means the seizures no longer exist, therefore eliminating the need for meds and I can happily toddle off and buy myself a motorcycle etc.

My parents do have the excuse of ignorance as they never bothered to read up on E when I was a kid. I totally sympathise with your situation

 

[LuvMyTwins]

I have learned.....

I have learned that there are many misconceptions about epilepsy. Yet, I've found that with openness and honesty, all myths are disspelled. Until society looks upon epilepsy in the same way that they look on other illnesses, this is just something that we have to smile and educate. I don't believe people are cruel (although I can't speak for your mom) just misinformed.
I have also found that it's better to laugh about things than be insulted---insults cause stress--a high seizure trigger. No one, not even a truly cruel person, deserves to do that to me.:soap:-----LMT

 

[Belinda5000]

I feel like I was a guinea pig when I was growing up w/ epilepsy.
It was the 60's know one knew anything and H.school in the mid 70's -81.
6 drugs were out when I was in H.school.


I still have ppl tell me sit down so u don't fall as far when u have a seizure.
Shouldn't u have someone with you all the time.

They don't understand why I'm sore for awhile after a sz and I have to keep repeating myself.

Belindaonder::agree:

 

[sixpack]

I don't have E, but I think she did the helpful, extra nice thing out of ignorance of epilepsy. Honestly, until you or a loved one has E, you just don't learn about it. That's no different than any condition that you aren't personally exposed to. Until you are touched by E in some way, you don't educate yourself. And, even then, judging by some of the responses here, many folks don't bother learning even after a family member has it. They stay in the ignorant zone from fear.

My understanding, from what I've read, 70% of people with epilepsy are completely controlled with meds. I had a colleague at school I taught with who had epilepsy. Hers appeared, as I never witnessed her have a seizure, to be controlled. So for me epilepsy (not the kind caused by a tumor or such) meant you took meds and went about your daily life. On the other side of the coin, a neighbor, a few years ago was driven to dispair from uncontrolled E and Chron's.

I think, for the average person, seizures are very frightening. Often seizures are caused by a deadly disease. When an adult suddenly starts having seizures, the first thing someone thinks of is BRAIN TUMOR. Shoot that's scary. Frankly it's often true. When a baby or young child starts having seizures, you often think of brain malformations. Hey that's part of my personal experience. My dad started having partial seizures at 45 and had a malignant brain tumor and he died 1 yr later. My sister, over the summer, had a seizure getting up one a.m. and turns out she had a frontal lobe meningioma. Her's was benign and she's fine. My daughter's seizures are a direct result of her brain malformation. So seizures are scary. And if the above examples are the only exposure you have to epilepsy, it is no wonder people act afraid or rude or just plain stupid about it.

Having said all of this, I really think it's no excuse for a family member to remain ignorant. They owe it to their loved one to learn all they can so they can help. And above all they should not make their child, parent, sister, brother, or spouse feel bad or less than because of epilepsy.

 

[dfwtexas]

Thank God for having all ya'll here to help me and listen to me. I appreciate the understanding. I am still dealing with telling people and I want to educate others...but sometimes these things make me think "this is why I don't tell everyone".
My mother is certainly an example of the worst of the worst. I am very lucky that one of my adult sons lives with me and takes all my concerns seriously and is the polar opposite of my mom. He even comes on here to get insight to the problems we all encounter.