Do you think there is a stigma associated with epilepsy?

[RobinN]

CJR - these are very similar stories to mine. In the beginning I didn't always know enough to correct them. Most of the time it hasn't been worth my energy to go back and explain the correct information. One day I might to a few.

 

[BuckeyeFan]

1) The ER docs said she didn't have a tonic clonic but only a convulsion. After all, it's not a seizure if you don't lose control of your bodily fluids. What a bunch of BULL! Tons of people with E. have seizures everyday that don't include any loss of bodily functions! An ER doc ought to know at least that much about seizures! It's ridiculous!

That ER doctor should lose his license in my opinion. I was an EMT for 20 years. So I went into the ER hundreds of times as a caregiver and 15-20 times as a patient. If I would have ever heard this from an ER doctor, I would have flipped my lid. True the terminology has migrated over the years, but it does not take a loss of body fluids to qualify as a tonic clonic. The loss of bladder control can be influenced by different things.

PLUS, from my understanding it is not actually part of the seizure, but a symptom of the extreme muscle relaxation that takes place following the seizure. (Someone please correct me if I am wrong on that statement).

 

[RobinN]

It has been brought up many times to me as being a characteristic of a seizure. Rebecca has been looked at crosseyed at times, especially when considering PNES. It takes quite a lot of research to find out that many are simply clueless regarding this "fact".

 

[CJR]

That ER doctor should lose his license in my opinion. ... I would have flipped my lid.

:agree:

As soon as the ER Doc said it I (who knew very little about E.) turned to my husband and said, "She HAD A SEIZURE!" Everything in me screamed that they were looking for the fast way out because we didn't have health insurance! I still truly believe that had we had health insurance he would've insisted on an EEG (which they had available in house) instead we had to wait 2 more weeks for the EEG to confirm that she indeed had Epilepsy and was having seizure activity every five minutes or so. We do now have health coverage but I am still so outraged by the misdiagnosis of my daughter and the delay in her treatment. It's truly frustrating because I feel like a Doctor should be more compassionate, and more knowledgeable. In both cases the ER doc failed miserably.

 

[brain]

The ER docs said she didn't have a tonic clonic but only a convulsion. After all, it's not a seizure if you don't lose control of your bodily fluids. What a bunch of BULL! Tons of people with E. have seizures everyday that don't include any loss of bodily functions! An ER doc ought to know at least that much about seizures! It's ridiculous!

That ER doctor should lose his license in my opinion.

:agree: :agree: :agree:

I've been told the very same thing!
Welcome to the ER-Nut Boat!

I've had Medics, ER Docs, Nurses, etc,
implying the same thing:

a) didn't loose bladder control
b) didn't bite tongue
c) yadda, yadda, yadda

I could ramble on and on and on with
the whole kit and caboodle and I'm sorry
to state, I do not fall into every category
that they think I have to undergo or I
should go through. If they have a problem
with it ...

THEY CAN HAVE MY EPILEPSIES AND
CAN IT! And then they wouldn't be
talking so much plus .....

I will be E-Free Permanently!

 

[BuckeyeFan]

Most of the ER docs I dealt with as an EMT were pretty good and were really helpful to those of us in the field. I did have a doc one time state that the patient we brought in did not have a sz because a blood test came back and did not show an enzyme that he said was always present after a sz. He thought she was faking it.

Sorry doc, I saw the her go into 2 sz after we arrived and transported. These were gradual onsets and definitely not faked. We documented the run as seizures.

Lost a lot of respect for that man that day and we had known each other for several years.

 

[CJR]

Some part of me hears stories like these and I think that the doctors couldn't get away with continuing to pass along incorrect information if the public at large knew more about Epilepsy. After all, there is one thing Doctors never want to appear - And that is Unintelligent!

If it was common knowledge that "spacing out" can be an Absence seizure than no Dr. could get away with saying that without loss of bladder control is the only way to determine a seizure because everyone would know he's an idiot!

I get very frustrated when I see ad after News Story after ad about ADHD and Autism yet I've never seen anything about Epilepsy. If I had ever once been told that very frequent daydreaming could be a sign of Epilepsy my daughter would've been diagnosed years ago! But because I get most of my information from a biased Media I was unaware...

Don't get me started...:soap:

 

[hawke86]

I don't know if there is stigma associated with seizures.onder:

 

[Shelley]

the more you know

I just went to a lecture yesterday called pseudoscience, anti-science and nonsense. Basically, the person with the biggest mouth and best persuasion skills get the most followers.
There are no ufo's and the loch ness monster was a sock puppet glued to a toy submarine at close range. Not many lakes have waves that are more than a couple of inches high.
I believe the great lakes are an exception, and that's about it.
In other words, we have got to start being more pro-active in changing peoples minds. We need to be louder, yet more positive.
I work harder, faster and more accurately than the fools at work, yet one very superstitious (person) keeps saying that I am an evil devil worshiper. (I don't believe in the devil, nor anything else, for that matter.)
I've got to figure out how to be a lot less shy about who I am, and why. I have progressed with you guys, and my 'family' at public access tv. I did have to take the first step. And yes, I do have days where I wonder what I am doing. But I figure that we are here for a purpose, and that is to take what we got and do the best we can.

 

[stilldancing_98]

Persuasion skills. I call it sales. You have to believe in it to sell it.

 

[Meetz1064]

Of course there's stigma

with E. DUH. It's frustrating.

I don't necessarily advertise having E, but those that should know that I have it, do. That's it.

 

[Loudmouth]

Yes, I find there can be

A stigma, especially towards a single mother with epilepsy looking after a child who also has epilepsy, another child with other disabilities and also another child. I have had to put up with assessments every 6 months from social services to make sure that I can cope with looking after my children, they seem to be under the misguided impression that because I have daily seizures, i will be completely incapable of looking after them. NOT TRUE!!! I go out LOUD AND PROUD about my epilepsy, it's part of what makes me who I am, and I see no more reason to hide that than anyone would if they had asthma or diabetes or MS.If anyone has a problem with it, then it is THEIR prejudice,not mine. I tell people like that that I am obviously more 'normal' than them, as they seem to be the ones with a 'problem'...:e:

 

[stilldancing_98]

Loudmouth, I am the same way. I am a single mom with epilepsy with a child with epilepsy and other dissabilities. I talk about it with everybody.The Coma is the only thing that has calmed me a bit.Loudmouth, I thought you might appreciate this. I am getting a tattoo that sais "Mind the gap" on my neck. I have been to London and my brother lived there for a long time. I know the real reason for it. My reason for it is the gap between people. The differences. The colors. You understand, so please mind it. LOL

 

[Loudmouth]

:roflmao::bigmouth:

 

[nadine deutsch]

:agree:
major stigma most of the people i thought of as friends ditched me after they found out and some of them i knew for years

 

[joey]

what does stigma mean?

 

[skillefer]

Stigma means basically a preconceived idea....in other words, do you think people get discriminated against because of epilepsy by others? Are they treated different?

 

[Taylors_Mama]

Actually kinda a story to go with the poll topic. I was chattign with my neighbor about Taylor. She has a 3 year old and 6 year old boy. She said she doesnt want Taylor playing with her kids anymore in case they catch epilepsy. I was like umm really. You cant catch it. She said she doesnt want to expose her children to that or have them see anyone ever have a seizure. I was so mad.
For one thing she hasnt even been diagnosed yet. Just talking to a friend about it and that is the response I get. I dotn know how you all deal with it. I mean a few weeks ago i didnt know much about epilepsy but I knew that you cant catch it. And that it isnt going to hurt anyone else's kids. Hello!!!!

 

[joey]

damn that would have made me fly off the handle .

 

[Wally]

Wow! You were clearly talking to a complete idiot. I am sorry that you had to put up with that. Oh well, we can't educate the world.