people assuming about your epilepsy

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Belinda5000

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This makes me so angry when people I know will tell me I assumed.
I was talking to someone on the phone I've known for 15 yrs and she was talking about how she had a bad memory, and she said I assumed you had one because of all your falls. Actually I have a good memory and it surprises the doctors because of my meds.
Does anyone else have this problem with ppl assuming with there epilepsy?

:twocents::
 
I find the opposite, at least with the few people who do know about my epilepsy. They assume I'm capable of far more than I am, so when I do a meds change or am having seizures, they don't understand that I might need a trip to the supermarket or some leeway with my memory. Never had anyone assume too little of me that I can remember. I know that I present a really good front to people and I'm good at hiding any signs of my epilepsy because an ex told me about that. I know how to seem bright when I'm stupid and I do pretty well at covering up my absence seizures. If my family and friends were actually there when I had a tonic clonic, I think they'd get a big shock and realise my epilepsy is actually a real thing I have to deal with.
 
It's great that you have a good memory. It's not a cut and dried subject, good or poor, because long-term and short-term can vary greatly, and from one day to the next. Other people's assumptions are not 'our' problem. Assumptions are last resorts when all the facts aren't handy. Try not to waste your time worrying about what someone doesn't know. If someone says anything stereotypical about epilepsy, I feel it's my obligation to tell them how it really is, and leave it at that. Hope this put your mind a little more at ease, Belinda :)
 
I feel that my family (besides my 2 kids) assumes that my epilepsy is contagious or something. They all live within 120 miles but do not come visit. I have not seen any of them since I was diagnosed. My Mother and Sister were coming to town (Mom lived in same town as me until last Oct.)to take care of things Mom had to do at the bank a few weeks ago. They were going to take me back to Lincoln to visit with them for several days. I had a seizure a few days before I was to go so they canceled. Mom did her banking over the phone instead.

I was really looking forward to my Mom too as she is in her last stages of cancer. I feel they think E is almost worse than it the way they act.
 
It's new for myself, my family and friends. So I people assuming a lot.

My family assume I can't do anything without help.

My friends assume I'm beefing it up or it's not really that serious.

But it is what it is.
 
My memory is like a light switch - off and on. There are some days where I'm fluent and rambling on about whatever. And then there are other days where I'm stammering and I keep pausing mid-sentence or mid-story. Luckily, the people in my life understand why I have those moments and they don't give me a hard time about it. It doesn't make it any less annoying though!
 
People are very good at assuming. And like Kirsten, people assume that I am capable of far more than I really am. People think that I should be working and often ask, "What do you do?" I feel like saying, "I stay at home, take drugs, sleep, and take more drugs. What do you do?" Such a stupid question. I've been in to have an EEG and the tech said "you don't look like you have epilepsy." As if looks have anything to do with E. And like you Belinda, I've had seizures in all types and had surgeries that weren't successful. And because of the surgery, meds and seizures, my memory is terrible. I often stumble over finding the right words (aphasia) and sometimes cannot remember names of people I met the day before. Or things my family has told me. And they find it annoying that I do not remember. I find it annoying that I've told them that I've had brain surgery, take meds that mess with memory and they still cannot believe that I cannot remember.
Once, when my ex asked me something about a movie we had seen and I told him that I didn't remember, he said, "That is unbelievable that you don't remember!" He had the audacity to say that after he had witnessed many TCs and saw me go thru brain surgery. The surgeon told him I could suffer memory loss. I find his utter ignorance unbelievable. But, it is what it is. Life...
 
Oh my guard. What on earth does he think people with epilepsy look like?

Sometimes I do wish I could tell clients I have epilepsy. Today I was doing an important trial for a potential client and I completely messed something up because my brain is just a mess with my absence seizures at the moment. I've never met her before, and it's a professional relationship, so I just have to suck it up and accept that I have to look dumb.
 
"I often stumble over finding the right words (aphasia) and sometimes cannot remember names of people I met the day before. Or things my family has told me. And they find it annoying that I do not remember. I find it annoying that I've told them that I've had brain surgery, take meds that mess with memory and they still cannot believe that I cannot remember."

Cint,
You have put into words exactly how I feel around family and close friends. Even my kids forget what I have been thru and they are always there for me.

I have all the seizures, a stroke, meds (for E and psych) and I have been through so many ECT's in the past I could not tell you how many. That does some magor memory damage.

I wish they could live our lives just one day. I'm sure they would never forget after that!!!
 
A relative of mine has a block party every year on July 4 and she invites a lot of people to watch all the fireworks she had bought. Well two years ago I had a bad TC seizure at home , after that she said I shouldn't come up to see it because I may have a seizure in front of everyone...
iam probably wrong but even though she was worried about it it was still Assuming to me.And she wonders why I never call her anymore.= Shallow
 
I can't find anything specific to say other than...

It's just annoying in general...but you just try to not let it bother you...yeah I know easier said that done guys...but let us remember that none of us are alone in this :)


and nice avy rich ;) (whereabouts are you in Cali? If you don't mind me asking...I'm in Merced...moved up here a few years ago from Visalia)
 
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I think trying not to let it bother us might cause more problems than it solves. I mean, being excluded from a party because you might have a seizure in front of the guests is something that doesn't deserve to be tolerated at all. I think educating this sort of person is a more useful approach.
 
kirsten said:
I think trying not to let it bother us might cause more problems than it solves. I mean, being excluded from a party because you might have a seizure in front of the guests is something that doesn't deserve to be tolerated at all. I think educating this sort of person is a more useful approach.
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And you are free to think as you wish Kirsten but you don't need to sound so critical...I was simply sharing how I felt from my perspective...keep in mind that that perspective is always subject to change...and yes I do agree education is always important...but we can't force knowledge down people's throats let alone expect them to live up to our expectations based on nothing more than perceived limitations...we may be epileptic yes but that doesn't mean we should value ourselves any less (or more) than the next person...people are people...it's called being human...we ALL have much to learn :)
 
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I think this is a case of the internet not letting us add our own expression and tone of voice to what we say. I really wasn't meaning to sound critical or harsh at all.
 
kirsten said:
I think this is a case of the internet not letting us add our own expression and tone of voice to what we say. I really wasn't meaning to sound critical or harsh at all.
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Indeed my mistake...I'm tired what can I say?...

except goodnight sleep tight don't let the...awww U'm sick of that...you have another bedtime story for me Kirsten? :eek:
 
It's not your bedtime. I know this. I just woke up. So what is up with you?
 
kirsten said:
It's not your bedtime. I know this. I just woke up. So what is up with you?
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Go to the kitchen...grab a snack...then see my thread "Missed a dose (not feeling so well)" for full details :eek:
 
Fecking hell. Is that still going on? I was checking on it but no news, so I thought it was over.
 
kirsten said:
Fecking hell. Is that still going on? I was checking on it but no news, so I thought it was over.
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Read Kirsten...READ lol (second to the last post should answer your question ;))
 
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