It’s a question that will become more and more intense as time goes on. And, as we sink deeper into this recession, those of us with Epilepsy have more to grapple with: do we tell our employer about our Epilepsy. Or, better yet, can someone help me kick myself for telling him or her in the first place.
Here’s the kicker…if you are out of a job, and you are applying. I know there are tens-of-thousands who are. Be creative. DON’T look at the traditional jobs. You know you can’t manage those. So, look at jobs you can do from home and online (but be careful of scams). There are tons of them out there! And, keep your eyes and ears open for any and all opportunities.
So, what do you do? Really…you have to do what’s best for you
If you do have a job, make sure you are doing the absolute best you can in that job. Don’t make your Epilepsy a constant issue, even if your employer knows about it. Doctor’s appointments are one thing, but try to be in conspicuous about ‘bad’ days and difficult episodes.
If you do decide to tell an employer who doesn’t know, provide them with some information from the Epilepsy Foundation. Great stuff! I know I continue to say that. Or, just email them the link to the website. Readers I’ve heard from tend to be losing jobs during down times. “We are the easy ones to let go, to target because they can call it corporate downsizing or cuts due to the economic downturn,” said Dolly, one newbie to BrainThunders. She lost her teaching job in the Midwest.
Sylvia Nelson
December 31st, 2009 at 1:20 am
Seizure #1 was in 1963, working full time and had just gotten married. Seizure #2 was in 1978. I was working part time, and had had two children (son is now 42, daughter is 40). Seizure #3.a. was in 2002 with 3.b. following an hour later. Breakthrugh Seizure #4 was in 2003, then the fun began. I took my meds religiously. between 1963 and 1978 I hardly knew there was anything amiss. Same between 1978 and 2002. The only time epilepsy was brought up was in 1963 after #1. I came back to work and my boss said, “I couldn’t have hired you if I had know you had seizures” Well, I didn’tknowI had them either! I retired from full time employment in 2004. I live on two pensions and Social Security. Keep a positive attitude and just keep plugging away. By law, employers cannot ask about medical conditions. Everybody has skills and strengths. Once you get a job, and you have a seizure, only a short amount of time is needed to recover. Disabled people get accommodations. Some of us who have epilepsy may need them and there are many who don’t. Don’t be afraid to ask. The strengths you have for the job can be communicated to most employers.
That’s the only time it has ever come up.
Alysse
December 31st, 2009 at 7:24 am
WHAT a roundup!! And, as always…many thanks for your input Sylvia! Have a very healthy and happy New Year!
RyAnne
December 31st, 2009 at 7:53 pm
I throw in my URL like I ever write on my blog. Hahaha. I’m glad you do, though. I love your posts. This one, especially, strikes me on a personal level.
And then, that happened. I missed some work for the flu, but otherwise was here and on time all year. I’ve been so much better. I got to change my shift to help me sleep properly. I have SO MUCH support here. They treat me like family, but less dysfunctional than a lot of real families. It’s great. No one seems to mind all the extra work they had to do. To them, it was just what should be done because I needed the time off. They’re still willing to do it again if I need to. They rock. I’m very glad I told them about my E here, because that’s WHY I still have a job.
I’ve been on several ends of this, because this isn’t a situation that just has 2 options.
When I was 24, my seizures worsened with a vengeance, went from maybe 1 minor SP a month that I didn’t even know was a seizure to several TCs a day, and so many SPs, I couldn’t even remember normality.
I really had no choice at that point. I had to tell my employer SOMETHING, because I missed so much work. Back then, I didn’t know it was epilepsy yet. They were talking about maybe blood clots, or an aneurism. I hadn’t had an MRI yet.. So, I told my boss all that. They ended up firing me for attendance. You see, someone in that situation isn’t really covered under the ADA yet.
So, I had to get a new job. There was no option. I actually went back to a place I worked before. By the time I got the job, I wasn’t officially diagnosed, but epilepsy was the best fit. I told them I had epilepsy, that I would miss days because of it, but the least possible. They were wary, but let me come back. I was there for 6 months before they laid everyone off. While I was there, they realized I was on meds, and it was Neurontin, which made me really stoned. I still did a good job, though. In fact, it slowed me down so customers understood me better, actually. The problem is, HR didn’t like having me there. They drug tested me all the time! Like, 18 times in those 6 months. I didn’t understand this was discrimination, and didn’t really mind since I didn’t do anything illegal. But, it did get to be a hassle, and coworkers starting thinking I was on drugs I shouldn’t be, and started avoiding me, except a few really cool people. It made me a black sheep, but I couldn’t find anywhere else to go. Now, all this happened after I had a seizure at work, and had to go to the hospital. It wasn’t right, but I didn’t know that.
At the next job, I didn’t tell them. I didn’t want to face that again, and a guy with controlled E at the one before admitted to me, in secret, he had E. He told me I shouldn’t tell people. I didn’t agree with him, but after the experience of urine tests ALL THE TIME, I saw his point, and didn’t tell people. But, it was also a problem, because my SPs were so noticeable then, plus I had more than one TC walking from the bus to work… and on the bus. It wasn’t something I could keep a secret. They didn’t treat me bad, particularly, but moved me to a position that wasn’t the one I got hired for, and I hated it. It wasn’t what I had worked so hard to get – but they didn’t decrease my pay. They were nice to me, and admittedly, the job was easier for me to do.
I got in the habit of not telling people once I only had TCs in my sleep. I hid it. I wasn’t ashamed, but I was afraid of how people would treat me.
Then, if I did tell anyone, I downplayed it a lot. Made it out to be no big deal, even though it was.
I got this job because of people I went to school with. They knew about my E. They didn’t tell the boss, though. I did, when I got my offer letter. I decided I didn’t want to play the secretive game anymore.
And here, they treated me well. They got me a flat monitor, because my boss heard CRTs can provoke seizures in some people. They changed the lights to ones that don’t flicker. They did whatever they could to help. This was so awesome!
Then, I got back on medication, and my world was hell for a while. I missed SO MUCH work. I thought sure I would be fired. I knew about the ADA by then, but I work for a tribal casino, and tribes aren’t bound to the ADA. My coworkers were burning out trying to cover for me. It was horrible all around. But, I didn’t get fired. I even got my full raise for the year! My boss told me I was a valuable member of the team, and he was sure we’d find a good med for me.
I understand every decision that can be made in this situation. I’m all for not saying anything if your E is controlled. I wouldn’t. I’m for saying something if yours isn’t, but in general, you can do the job.
I think if your E is very poorly controlled and makes you miss a significant amount of days, and is going to keep doing that, you should try very hard to get disability.
Missing work because of anything affects everyone there. Other people work harder to make up for you. Some people will resent that, and then you have a hostile work environment. Sure, the government says they can’t discriminate, and I agree – but they hire you to work. If you really can’t work full time, go for part time. If you assess things and really can’t even work part time, don’t do that to a company. I understand disability is hard to get, but really do try. Don’t make other people have to make up for you. Even though the law says they have to… imagine how you would feel.
Alysse
January 2nd, 2010 at 8:04 am
Thank you, thank you!! All the best in the New Year, and I have a feeling we’ll be ‘talking’ a lot in ’10!! Alysse