[Info] Culturally Preprogrammed

[batman]

Roughly 2 weeks ago I was going to reply to someone's posting and include links to some websites for resources about what I was going to say in my reply. When I went to where these resources are located, I noticed a new series of articles have been added. The series of articles is titled "How (and Why) to Tell Others about Your Epilepsy", published in Exceptional Parent magazine in June through October 2009. The one individual, a neuropsychologist, who created these articles had to wait for a certain period of time before he could provide the articles on his own website. While reading through this series of articles there are two words I will probably never forget, which are "Culturally Preprogrammed". Instead of me posting parts and pieces of this series of articles, I'd highly recommend everyone to read this series of articles yourselves. The link to this newer series of articles should be located at www.theseeprogram.com/EParent_Social_Coping_3a.pdf

This neuropsychologist had previously created two other series of articles ( "Beating Bad Seizures" ; "Raising a Kid with Epilepsy" ), also published in Exceptional Parent magazine, and these articles can be located in the S.E.E. Program library, at www.theseeprogram.com/html/s_e_e__library.html

For those of you who read these articles I'd like to ask you to please provide some feedback by posting a reply on here, so it can be shared with the neuropsychologist who created all of these articles.

Thank you.

Bruce

[Rae1889]

I like the first article. moving on to the second in a bit, but this part struck me the most.

Teaching others to Stigmatize You

It turns out that there is another sinister problem that occurs when a person hides her epilepsy. Research has
found that trying to keep epilepsy a secret seldom actually works. While the person with epilepsy thinks she
has successfully hidden her condition from others, the research found that most people around her know she
has epilepsy anyway. We’ll call the person with epilepsy, Rachel.
Lets look at the “secret” from the standpoint of the others. They know Rachel has epilepsy. Rachel
obviously does not want to talk about it. What conclusions are others supposed to draw from this situation?
First, if epilepsy were no big deal, Rachel would talk about it. So obviously, epilepsy must be a big deal. If
Rachel doesn’t want to talk about this big deal, it must be embarrassing. Second, that means people with
epilepsy must be embarrassed about their condition. So there must be something wrong with having
epilepsy. Epilepsy must be bad, and people with epilepsy must be ashamed of their condition. Third, by her
silence, Rachel has just succeeded in teaching others around her that it is a socially undesirable to have
epilepsy. Rachel has just taught stigma to others without saying a word

[Rae1889]

the articles following all have some great insight, but I didnt see anywhere about how to continue to deal with the situation should it turn sour. but I did likr this part

On the other hand, you will often be surprised by the other person’s response. Epilepsy is so common that
the person you are talking with may have it herself or have epilepsy in her family. There is more
understanding in the community than you may expect. If you keep epilepsy a secret, you will never give
yourself a chance to find that understanding.

An Executive Director of an Epilepsy Foundation once told me a true story. There was a gentleman in his
50s who had epilepsy for many years. He was terrified at the prospect of telling anyone outside of his
family. The Director eventually managed to get this gentleman to join a self-help group composed of eight
women about his age. Now the women had no difficulty telling anyone about their epilepsy. They decided
their goal was to get this man to tell at least one other person about his epilepsy. They worked on him for
months. Finally the gentleman mustered enough courage to tell his neighbor of 18 years. He went home
after one of the self-help meetings and found his neighbor mowing in the back yard. He walked over to the
hedge and motioned to his neighbor to come over to talk. With some hesitation the gentleman told his
neighbor that he had epilepsy. His neighbor’s response: “Gee, that’s a relief, so do I.”
The point of this story was by not telling, the gentleman had deprived himself of 18 years of understanding
and support from a good friend.

[Endless]

Well, this is just my opinion. Can't wait to hear everyone else's.

There were some things in the article I thought were a good idea, like starting out with the name "seizure disorder" instead of epilepsy. But that article has a number of things I found to be inaccurate at best, disturbing at worst.

The first thing I have a problem with is that it adds another stigma - that people are ashamed of their epilepsy if they choose to keep that information to themselves. Ridiculous. Not telling others is sometimes a prudent course of action, especially in the workplace. It has nothing to do with self-esteem, and everything to do with maximizing earning potential. Also, people have differing amounts of privacy about their lives. Some people never discuss medical status with people other than very close friends or family. Saying they are "ashamed" because of this is just plan ridiculous.

The next thing that bothered me was:

“Epilepsy is less a physical disorder than it is a DISORDER OF ANTICIPATION.

Bull. I suggest to him that he go through a few years of seizures himself and then say that. Epilepsy is a disorder with seizures that last minutes, but it is bracketed by physical symptoms before and after that can wreck your whole day. If you have daily seizures that's pretty much your whole life. There are a few places where anticipation does play a part, but we all try to get past that (for example, will I have another complex partial and lose my ability to drive?).

On to the third item.

It is my advice that you always disclose your epilepsy to prospective employers.

In my opinion that is disasterous advice. While he may believe this is a good thing to do, he definitely needs to do more research. It would often mean not getting the job, because lots of employers think it will mean higher absenteeism and lower productivity, as well as higher group health insurance pool rates, same if they knew someone had a quadruple bypass that year. The quad bypass might not get hired if they knew in advance, either. Nobody says in their interview "I had a quadruple bypass." Why does he insist that people should mention epilepsy? Epilepsy should be treated like any other disease in the hiring process. Again, that perpetuates the stigma, not removes it.

Plus, in the U.S. it's actually illegal for an employer to ask you if you have a medical disorder. They can only ask if you are able to do the job. Because of this most employers don't want to know if you have a health issue before they hire you, because if they end up not hiring you, you could say it's because of the epilepsy and sue them. Telling them in advance puts them in a very awkward and legally difficult position.

The only exception is if the seizures affect your ability to do the job. Like if you are applying to be a circus high-wire acrobat, and you have tonic-clonic seizures. Then tell the company's HR department, not your future boss. The HR department will have some decisions to make about your safety in doing the job, and whether it can be handled through accomodations, or whether you can't perform the job safely even with accomodations. In the case of a non-safety issue and the need for accomodations, tell the HR dept. AFTER you are offered the job. They'll investigate whether those accomodations are reasonable and they are able to provide them. I'd suggest the author of the article get together with a good human resources attorney and rewrite his paper to include the realitites and legalities of epilepsy and employment.

On the whole, I thought the article was a mixed bag. It had some good points and ideas, and some very unfortunate points and ideas. Many of his suggestions increased the stigma he says he's trying to remove. A few were a just plain bad idea, based on misinformation.

Like any piece of reading, I'll take away the good stuff and use it and forget about the bad. My worry is about people who read this stuff and take his word as gospel.

[epileric]

Endless, I agree wholeheartedly with you.
I've learned the hard way not to tell people. When I was in a massage course after a couple of semesters I had finally mentioned that I had seizures to the class (it was relevant to the discussion). The very next day I was pulled out of class by the head of the school & reprimanded for not telling him. From that point on the class sat on one side of the room I sat on the other & the people in the office seemed to like to call me down & make my life harder by doing things like telling me I made someone else uncomfortable but wouldn't say who or why in case I became vengeful (G-D knows why they'd think that). Kind of defeats the whole purpose of calling me down if we can't even confront the issue at hand.. I even had a classmate tell me I should not be a massage therapist in case I have a seizure & scare someone.

Then when I worked as a busboy my boss (who was only 22 years old) liked to crack jokes & do imitations of what he called "retards". (I hate that word). Does this guy with the PhD think for a minute I'm about to tell this boss that I suffer from epilepsy???

I'm very comfortable with my seizures & who I am but I'm also aware that not everyone else is. I do resent the fact that he dare blame me for someone elses discomfort. All I can say is that it is so extremely obvious this guy doesn't have epilepsy or any other disease to deal with.

[Rae1889]

True Endless. True.

I thought about all those point but I wondered if that was just me being overly opinionated and pessimistic again lol

I tried to read past all that stuff that ticked me off and see if he actually had some good points. and I think he does. that sometimes it is easier to just say it. and if people want to be rude, well then screw them! Life sucks. its a total understatment for everyone. nobody understands anybody. and thats something we have to get used to. If someone wants to freak out over seziures, they are missing out on a gerat oppourtunity for a best friend or spouse or mentor.

I would never tell a interviewer that I have E because its none of there business. afterwards I would. I would educate adn only speak to the manager. there is no reason why others need to know unless I would be workign alone with just them. If they are uncomfortable thats their own damn problem, not mine. and I could take the employer to the labour board for discriminating against me. Employers are supposed to log complaints and disciplines/takls incase the labour board comes to them with an employees complaint they need proof that what they are doing they did on an actual complaint. not because they themselves are uncomfortable

[batman]

[Crystal11]

ENDLESS:
I thought about your comment about your phrase you chose out of the artical.
“Epilepsy is less a physical disorder than it is a DISORDER OF ANTICIPATION.

Personally, I do believe it is or can be a disorder of anticipation. Epilepsy is what it is, Epilepsy or "seizure disorder". but for me, I was having up to 20 complex partials a day (usually 45sec-1min) and 2-3 3min complex partial seizures a month.
So, I was on edge for a long time.
Now that I have better control over my seizures, with increased meds- I stress out more than ever. Because I know that at any time, a seizure is just around the corner. I try not to think about seizures or Epilepsy each day- but it can effect someone greatly.
I live with my twin and roommate who both have Epilepsy and boy.. it can be down right stressful- especially with my roommate who has no warning.
I constantly ask her if she has taken her meds- she asks me as well hehe. We make sure to take care of ourselves the best we can and to support eachother.

Now.. if I can get my stubborn twin to take meds- maybe she will have a seizure free day.
We call her "seizure freak"- but I'm her twin sis, so I can call her that LOL
She laughs and says: well I know, I know meds and neurologist.. I will go to the doctor soon to get a referral.
Hmm.. I've heard this three or four times now.

Anyway- we all try not to dwell on Epilepy too much- but it can be a "waiting game" without good control.
I was diagnosed as medication resistant/medically refractory- meaning most meds don't work well. And we discussed surgery. I worry even more now because I most likely won't really have seizure freedom like I had hoped.

For me and my twin and roommate, it is all about "when will the next seizure come?" "Where will I be?" "Will I be going down the stairs, or on the bus- or walking down town?" or "Will I be alone when it happens?"

Those types things.
We usualy travel together anyway- we also feel its more safe as a group traveling around.

Crystal

[Endless]

Hi, Crystal. The walking on eggshells, waiting, must make everything so much harder. Especially with two or 3 of you.

I guess my head is in kinda a different place. My seizures aren't under control either - I just keep my head up and keep going until I have one, which is pretty much daily, then I curse at it and keep going on in the ways that I can.

I think one of the differences we have is that I haven't gotten seriously physically injured during one of my seizures yet. The worst is bruises or small cuts. I'm hoping it stays that way I think yours are much more serious and would have much more reason to anticipate or wait on them. If I had ones where I fell down stairs, or had a t/c in Walmart, I'd be anticipating them, too.

[droolmonster]

I'm incredibly afraid. I agree with the anticipation thing. Last week I was at a party in Chicago and I was thinking about whether or not I would have a seizure. I had also forgotten my meds, which meant I had to leave early, about one.

I've had some pretty serious things happen to me. Am I going to wake up hallucinating with amnesia?

Once I fell down the stairs and hit the back of my head. You bleed a lot from your head. The nurse or doctor told me in an Indian accent, "Scalp wounds bleed the dickens." It's like waking up with your hands covered in blood, like, oh no! I killed somebody! I now have a scar on my face, which sucks, because people tell me I'm beautiful, and I don't want that to stop if I somehow get a scar that's akin to the joker from batman on my face. This one is small and will fade.

I used to have seizures more. Now whenever I have them it's an incredible dissappointment. It's like every couple weeks.

I do however think, that the seizures are far worse than the anticipation. I try to live in the moment and forget about it, which is easier said than done.