Epilepsy and the stigma attached to it

[RanMan]

:x :x
There still is a stigma attached to this condition but if you think about it it's no different than an employee having diabetes or a heart condition.

I have to relate it to my situation.



I've had EP for 25 years and wanted to make this comment;

"If a qualified person is not hired or is terminated from employment as a result of a seizure condition, it is considered a form of descrimination and a violation of your Human Rights" resulting in a hefty fine or jail time to the employer as per the Canadian Human Rights Act.

The employer must provide adequate work accommodations and/or special needs required to do the job.

My bosses thought that I was putting it on so I wouldn't have to do certain things.
Through my employer (Government of Canada) they finally sent me to a "neuro/psyc" to examine me and DOCUMENT what I can/can't do.

I'm from Canada and we have the right to request this type of exam, in MY case it was my employer that requested it.

As a result of it being documented, my employer sent the results to "Health Canada" and since the job was being illiminated, the report showed that "as a result of the long term use of the meds, I could not learn new tasks "and requested that I go on DISABILITY and then medical retirement.

That proved to my employer that I was telling the truth all along and NOT FAKING IT.

 

[Bernard]

Interesting point Randy. I'm not sure what the laws are regarding this issue here in the USA.

Stacy was very fortunate when she graduated college that she was completely seizure free. After she quit to start a family, and the seizures returned, they still asked her to come back (several times) and made all kind of special allowances for her to work for them because they valued her knowledge and abilities.

 

[RanMan]

Epilepsy Action Survey of Members Aged 60 and Over

 

[Bernard]

A national membership survey, carried out by Epilepsy Action, the UK's largest member-led epilepsy charity, has revealed that one third of older people who responded have experienced stigma because of their epilepsy.

... The recent Epilepsy Action survey of members aged 60 and over also found that one third of older people who responded believe that epilepsy affects their relationships with family and friends. [1]

Could it be that the same 1/3 of respondents that felt stigmatized also felt their personal relationships were affected? If so, I think this survey says more about the respondents than about potential societal stigmas.

I still maintain as discussed in another thread that the way people treat you is due in large part to how you present yourself. Relationships are a dynamic between people. It takes at least two and both/all contribute to it. It could very well be that the survey respondents have let epilepsy affect themselves and this carries over to affect their relationships both personal and professional.

BTW, the survey response means that 2/3s believed that epilepsy did not affect their relationships!

The response rate was 207

That is not a huge sample IMO.

 

[Elisa]

I still have to agree with Bernard. But, I would love to see a survey about how epilepsy effects their children.
I can say I have never felt like my seizures have gotten in my way, with friends , work etc.
But, my son is 14 and up until the last couple of years has always wanted me to go on field trips with him and his class. According to him the girls all thought that I was cool.
When I had my VNS put in I started having a very hard time, lots of seizures, and med changes. That was two years ago, and he has not allowed me to go on a field trip with him since.
This week I asked why and he say because the kids think I'm a nut case. One field trip I did have a seizure, and once when I was over medicated I feel asleep in the auditorium.
I just feel so bad and I wish I could fix it all. But, I can't because I don't know all of these kids personally and they don't know me. They just know what they saw.

 

[Bernard]

Looks like you started an awareness campaign without realizing it. Perhaps there is an opportunity there to speak to the school. Have you considered talking to the principle about addressing the issue?

 

[Elisa]

I have thought about it many times, but I really wanted to do some thing like the H.0.P.E. mentoring program under my belt first.
Knowing this town they are not going to let me walk and talk, just because "I" think it is needed.
I still have heard nothing from the EFA,

 

[Bernard]

Have you tried contacting the local/regional chapter of the EFA for your area? I'm guessing that a phone call will be more productive than an email.

 

[Elisa]

I'm not sure that people in Maryland ( 9 hours away) can help someone in Maine.
Maryland is the closest one to me. But, thanks.
Elisa

 

[Julie C]

I had to go into my daughters school several times about her Epilepsy, Hazel has Complex Partial Absences.She was being teased for wetting herself obviously during a seizure,I told the First Aider and her first response was I've never been called to Hazel's class when she's fell over :!: I told her she hasn't fell over for10 years,but she was waffling on about the old Grand Mal seizures.I ordered leaflets wrote an Email,I went to the Deputy Head and gave him copies of a load of info about Epilepsy,especialy about Hazel's type of Epilepsy.I also wrote to my Local Member of Parliament.She wrote to the school reguarding the Epilepsy and the bullying. I have had Stigma,I was banned from my local bus company as I caused too much hasel travelling on buses.I was banned from the local library for being too disruptive during Tonic Clonic seizures :!: Take care luv Juliexx

 

[Axa]

Well, I want to contribute a story which is not about stigmatization.

As a kid I was an "overachiever", but when I was eleven years old I got my first absence. My parents knew that epilepsy can provoke some bullying at school, so they visited my class teacher and explained about my E.

The teacher organised a lecture on epilepsy for my class - and in no time I became some sort of "hero" and not someone you should make fun of. I had this beautifull silver pill-box and some schoolmates even thought I am "cool" and "special" because of my E. So, when I had my first tonic-clonic during the gym class, my classmates reacted cool - as I would have asthma or some other, more "ordinary" thing. In fact, it was just me who felt bad about it. When I returned to school two days later my mates just asked me if I was OK - and that was all. Soon we nearly forgot about the episode.

Maybe the story would be different if I wasn't the best mathematician and the best basketball player in class. I was also already in secondary music school. I suppose they would treat me a little bit different if I had a lot of learning troubles or something like that.

Anyway, later, when I was eighteen years old, my seizures subside for full twenty years, so I can't say I was really a "person with epilepsy" then ...

Now I work as a free-lance translator, which I enjoy immensely. I have understanding partner and friends. Maybe my "success story" is a connected with the fact that I am living in academic-artistic circle, which means that these people are educated and don't think it cool to be discriminatory about anything.

 

[Shelley]

When I had my first seizure, my mother went and explained it to the principal and my teacher. This was in the sixties, and from there on out, I was harrassed, bullied and teased daily with no support from anybody.
The meds numbed me to the point where I barely remember anything about my childhood, except the teasing, taunting and etc.
I do plan to give a lecture to a local group with as much info as I can (while not be confusing) in about an hour of lecture time. The date is to be determined, but I gotta start somewhere.

 

[BuckeyeFan]

A comment about the disability laws here in the USA.

We do have social security disability for those who can not work due to their epilepsy. The qualifications are VERY stringent and mostly apply to tonic-clonic sz. I am sure there are plenty of our members that can relate these stories.

What is more distressing to me personally is the fact that I am in a professional career that could be in trouble if I lose focus. I am doing much better now, but last year I was really struggling at work until a medication change.

If I lose the ability to do my job mentally, I would need to get a job for less pay doing something less challenging. It is very concievable that I could end up making half or even a third of what I make today. Though I wouldn't be alone with those wages (many people live on less), it would change my life drastically. That is what worries me.

And yes there is a stigma at work.

 

[Shelley]

And yes there is a stigma at work.

Yes, there is an unnecessary stigma, because (I think) that so many things (right or wrong) are taught from the aspect of fear. So their reaction will always be of fright and they (frightfully uneducated) will do horrible things to us.
That is why I am going to attempt to give a lecture to those who are not into superstition/demon possession.

 

[Loopy Lou]

This is why i find myself lucky to be in a job which is well informed about epilepsy and in any case, every single member of staff is trained in first aid.

I have got the "You don't look like you have epilepsy" comment a couple of times. Always interesting when i ask them what i "should" look like.