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It's time to quit hiding

I've been living with E along time,30+yrs or so.  I've always been ashamed of it! that's the way I was brought up!  Don't tell anyone, hush hush & all.  The meds make it even worse! the trembling,loss of memory,impairing my cognative thinking! It goes on & on!  Well I'm sick of hiding it! No more!  If you won't accept me how I am, then so be it!  I didn't ask for or want this,it was just bestowed upon me!   I remember my brother having a tonic-clonic seizure, it scared the heck out of me!  But I still love him,respect him & treat him like a human being!  More people with this disability need to come out of their shells & SPEAK UP!!!!!      3 million people should be enough of a voice to let America & the world know, "hey I'm here,don't ignore me!"  I'm done hiding!!!!!

Comments

Re: It's time to quit hiding

I am glad you aren't hiding.   I just found out that I have epilepsy after being misdiagnosed with something else for the past 20 years.   I figure that it is better to be open with everyone about it from the beginning since it will make it easier down the road.  I already have enough issues as it is with my health so why start hiding this, right?  I actually start back to work on Monday.   I am hoping that things go well but am glad that my immediate supervisor has a daughter that has grand mals regularly so knows what to do and can handle anything including my partial seizures that are more like fainting and dizzy spells easily enough.  I just hope the rest of the office will be just as supportive.  So far the rest of my family and friends that have found out what the doctors said a month ago, have been very supportive and keep us going when we do start to feel overwhelmed with all of this news and adjustments with the new things in our life.  Good luck with things!

 

Re: It's time to quit hiding

Hi Hspbuy1,

My epilepsy is becoming more and more difficult for me to hide during mundane daily events.

Speaking up about the events involving epilepsy is most often detrimental to my situation. This observation applies to the vast majority of any social interactions, whether the interactions occur in open public, such as on a sidewalk, or the interactions occur in much less than open public, such as in a doctor's examination room.

It is best to hide my epilepsy as much as possible in non-anonymous situations.

For example, when I directly reveal my epilepsy to a potential employer, over a large number of employers (for me, the count was around 1,000 employers), the revelation of epilepsy immediately terminates further consideration for employment from the employer a little more than 50% of the time. Otherwise, my employment considerations are not terminated until the potential employer discovers my epilepsy from other means.

Seeking any accommodation with epilepsy, such as under the ADA, the Catch-22 aspects are often oppressive. For instance, one medical clinic reported me to police authorities twice, once for my walking back home less than a mile in hot weather from the clinic, and once for doing the same during cool & misty weather. On the other hand, the most recent medical clinic told me I wasn't serious with my epilepsy, since I cancelled an appointment to a referred PA when the appointment was changed by them to a different time necessitating 3 miles of walking and six hours of waiting in hot weather, for a round trip PA's medical appointment 35 miles long in total on the closest transit.

Medical providers play both sides of the epilepsy coin, in that, if they can benefit by having another patient, epilepsy is no problem (absolute "proof" of epilepsy is then irrelevant), but if little, or no, benefits are readily available from having another patient, the epilepsy becomes such a threatening and complex condition (proof of "safe" epilepsy is then mandatory), that only distant specialist can do anything with enough safety (i.e., then, epilepsy makes all dental work too dangerous, to the further extreme that epilepsy makes the front door to any clinic much too dangerous to use, so the unwarranted advice to use the door to an unavailable & distant epileptologist only).

Emergency response personnel, once they dismiss drug abuse (and don't choose a catch-all mental illness labeling), tend to blame anything & everything on any known epilepsy, and tend to encourage callers to wait out most any event as if it is necessarily only from an epilepsy, if facilities are more rewarding being less utilized, or vice-versa, based on reward availability.

People with epilepsy who note to websites that the new ADA also applies to websites, are then often banned from the websites, and denied services available from such websites.

Painless/painful migraines, often co-morbid with epilepsy, inspire much less prejudice from others, but......

Tadzio

Re: It's time to quit hiding

I started having grand mal seizures in my sleep since 2009. Doctors have only told me I have a seizure disorder, they have never said I have epilepsy. The only people who know I have seizures is my immediate family. When I used to work at a gaming establishment, I told them I had seizures, but only in my sleep. After working there for a long time, they claim I made a big monetary mistake and since it was that big of an amount, they let me go. I think they made a bs excuse about the monetary mistake, just to get rid of me because I have seizures and they did not want to be liable if I ever had a seizure while on the job and got hurt and sued them. So now at my new job, I have not mentioned anything about my seiuzres. Because like the other poster said, when you mention to your employer or prospective employer you have seizures, they will not hire you or do something or say something you did to make you lose your job. The law says that people with seizures cannot be discriminated against, but employers still do it and get away wtih it. So if I have seizures, it is none of my employers business but my own because I only have seizures when I am sleeping, never awake. Seizures and epilepsy is still looked down upon in our society and people who have these disorders are thought of less than a person. And that is not right. We people who have seizures and epilepsy are still PEOPLE and we should be treated with respect!

 

Re: It's time to quit hiding

It's pitiful to live  in the richest nation in the world & have to worry about potiential employers not hiring you because of insurance reasons!   And that's the biggest reason. i'm all for national health care! f the ins cos!   I understand your reasons for not mentioning your E.  But we can still stand up to the stigmatisms people put on us!  Like someone told me ,don't give up hope!  thx for the reply!

Raise Public Awareness by Documentary

Together we can amaze, entertain and educate the public through entertaining stories of each person's specific Seizure in Public. I produced Spirit of a Subculture,Bike Messenger's in Chicago for WTTW/PBS. My next project will select 1 public seizure story from 10 Epileptics embedded with information of our condition and lives surrounding the viewers.

For more info. go to; ambitiousmindsproductions.com

Sincerely Sam Inglese, Producer/Director/Epileptic

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