To tell or not

[dfwtexas]

I have only told the two closest persons to me about my seizures. I am afraid to tell people because I am not sure how everyone will react. I am pretty sure that my boss will find an excuse to fire me if I tell him. I know I am not suppose to drive, but cannot afford to lose my job and my health insurance.

Also, people hear seizures and they think of grand mals...my seizures are not like that. They are petit mal ...I call them extreme sleepwalking....I do not remember them but I continue to do work, etc.

How did you handle the news when you found out and who did you tell?

 

[speber]

I was young when I found out...

...and I tell everyone....but that's me.

For me, honesty is the best policy...and I look for employment that can deal with my affliction knowing it upfront.

I pull no punches...and expect no punches pulled...minimal surprises that way.

This subject is not new to the forum, and if you do a little 'targeted' searching on some keywords like employment or discrimination you'll probably find the really worthy threads we've amassed so far!

I can empathize with the want to stay secretive...but, again for ME, I let everyone know.

Peace
Speber
:rock:

 

[RobinN]

I continue to let everyone know. However, we are talking about a minor, and I want others to "watch out" for her. I think being honest, weeds out those people that weren't really there for you in the first place, and brings those that are special closer.
I wanted answers, and it was amazing how many people supported us.

I have begun to consider that some people might be sorry that they ask me how she is... because I talk their ear off now. No better sales person than one that is a happy patient. I am a walking ad for neurofeedback these days.

 

[skillefer]

Hi jg! Welcome to CWE. As to your question, I tell everyone that may be effected by my seizure. I am a school teacher. So every year, I tell all of my classes that I have epilepsy, and what to do if I have one at school (it's happened a couple of times), my administrators and school nurse know, my aide (who is also epileptic knows), as well as the colleagues that I work with. The owner of the coffee shop I go to knows (he's an old friend), all my friends, as well as my family. I figure that if I tell them what I have, and how to help me if I have a siezure, then it won't be as shocking or traumatic for them. There's a fear in not knowing. But then, that's just me. Everybody has to make their own decisions.

 

[Bernard]

Hi jgbmartin, welcome to the forum. :hello:

The honesty/workplace issue is something many struggle with and I don't think there is a one size fits all solution. I happen to agree with The Bard though: "This above all: to thine own self be true".

Are you experiencing seizures while you are driving? Have you had any extensive EEG testing (24 hour, vEEG, sleep studies, etc.) to measure just how frequently you are having the seizures? I know when my wife was having absence seizures, she was only able to determine that she had had one about half the time. She rarely was able to determine when she had had a small complex partial seizure.

What are you doing to control the seizures?

 

[dfwtexas]

Thanks for the info. I started having blackouts in Jan 08. I suspected it was a sleep disorder. I had an accident two years ago that almost called for an amputation of my arm due to several severe infections. My infectious disease doc tried changing up some of my meds but the seizures continued. The seizures were ramdon...I could go a month without any and then I would have several in one day. My ID Doc referred me to a neurolgist. I told him my sleep is not good due to pain from my arm. He suggested that he would do a sleep study but first wanted to rule out seizures by doing EEG and MRI. He called me and said the MRI was normal but I needed to come over ASAP because of EEG. He said EEG shows it is seizures. He put me on 500 mg Keppra 2x a day. The last seizure I had was on the day I started my meds...but I have gone that long without a seizure before I started meds. I saw Dr this week and he upped my Keppra to 750 mg 2xs a day. I really hate the new level as it causes terrible headaches. Dr said he wants to see how I do on new level for several weeks before he would do any new tests.
I have had seizures while driving...but it was back when the seizures first started. It's a problem that if I don't drive, I would lose my job and therefore my insurance.
Dr said the seizures could be caused by my infections, my meds or the fact my father had grand mal ...or a combination of all these factors

 

[brain]

:hello: JBGMartin:

I always let people know, and I'm one of those too,
that believes in honesty being the best policy, but
you don't have to go into the whole details like a book.
Just keeping it brief and simple is good enough; but not
in the Doctor's office though - keep that door wide open!

And welcome to CWE!

 

[CQ:)]

I usualy take partial seizures, auras & very rarely take grandmal seizures.

I am currently looking for paid work in the administartion area & to keep myself busy I do voluntary work at 2 different places. The necessary people at the places I volunteer know that I take seizures & know what signs to look out for.

I don't mind if people know about my epilepsy & if anyone ask about my epilepsy I am happy to answer their questions.
I usualy explain that my epilepsy is under control & my seizures are only smaller ones or warning seizures.

I feel it is important that people do know about my epilepsy especially if I do voluntary work or paid work because if I hadn't told anyone about my epilepsy & took a seizure while at work or voluntary work then my boss might wonder what was wrong & even think I was on drugs because they hadn't realised I had epilepsy.

The only thing I always worry about is when I apply for jobs & I have interviews is when is the best time to tell the employer about my epilepsy? Do I tell them during the interview or wait to see if I am succesful in the position & tell them then?

 

[tinasmom]

I always told my daughter to be honest and she never kept it from anyone that she had seizures. Unfortunately, she would tell people in interviews and then not get hired. I had tried to explain to her that she did not need to reveal that information in an interview. She always felt that it was important for them to know. I am raising my granddaughter to know that it is ok to tell people you have seizures. This is just the way that I feel, but I do not want her to be ashamed that she has Epilepsy. Epilepsy does not change who she is.