that's a tough one...I'm considering doing the same thing. I'm 24 years old and my narcolepsy is still maturing and I'm finding myself getting worse. I wish I had some advice for you, but I thought I'd at least share my thoughts!

i'd say that depends on how much N is affecting your work. if you think it is affecting your work, then tell your employer, they may be able to make adjustments to help you cope better, they should send you to occupational health. also if you think your job could be at risk because of situations due to symptoms of N then you should tell your employer. if you tell them, they can't claim they had no knowledge of it if you end up at employment tribunal (as i am doing).

however, if you think N does not affect your work, and you can manage it, then i'd say keep quiet. it is a complication you don't need.

I told my former employer because I wanted them to understand why I was always so tired, and I wanted to be completely honest with them. I asked for accommodations as far as schedule which I was eventually granted after 3 letters from my doctor. They made my working situation so stressful I finally resigned. My immediate supervisor told me on my last day that the employers(husband and wife owners) did not believe that I had N, nor did they believe I was having such a hard time with thyroid cancer. My advice is, weigh all your options before telling. I thought working for a family owned company they would be more sympathetic than a large corporation would be, but I was wrong.

Wow! Your dr advised you not to tell your employer. I've had N since childhood and am one of few that got it at a young age. therefore have had to explain through all school years and to employers. this gets very stressfull.
. N is a legal disability. they HAVE to accomodate you to a reasonable degree. My last job didnt like me being tired all the time,oh well, they made up other reasons to fire me plus w/ no insurance, no dr, no documents since diagnosis was 20+yrs ago, i didnt have a leg to stand on. Bottom line...GET A DR WHO WILL SUPPORT YOU. EMPLOYERS CANT ARGUE WITH YOUR DR! (THEY CAN TRY THOUGH). people generally dont make up having narcolepsy so for them to think your just lazy can cause you to be depressed and they will think that if you dont explain your situation, trust me.

if N is affecting your work, and you think there is a chance you could end up on disciplinary for incompetence or losing your job anyway, then it is worth telling because you'll have nothing to lose by telling.

if disciplinary or job loss could be avoided by making adjustments, then once you tell your employer you have protection under DDA / ADA, but you would not have that legal protection if your employers showed they had no reasonable way of knowing you were a disabled person protected by the law.

It is risky, that is why i would only advise informing employer if N is jeopardising your competence in your job anyway.

And - the bigger the company you work for, the higher the duty they have to help you.

Only if you have to. I had to. I'm expecting to be fired by the end of the year. I work 3rd shift and first shift. Not a great schedule for us. I get migranes from screwing with my meds. I take Adderall to move and Xyrem to sleep. One day last week I looked at the wrong schedule and guess what. I took Zyrem at 9:30 and went to bed. Work called at 10:30 my better half woke me up. I was bouncing off the walls. Couldn't drive so I took a sick day. I have never done that in the 8 years that I have been there but since they found out I have Narcolepsy they have be out to get me.

tirednurse don't expect to get fired, ask for the adjustment to your shifts so they are regulated. they should work around your routine, you shouldn't be messing with your meds to work to their schedule, especially not the xyrem, that really has to be used carefully.

don't mess with uppers and downers just so you can work, it's just not worth it, you're storing up further trouble down the line. yes you need to use them, but in a controlled way.

And once your employer knows, document EVERYTHING. Every discussion about hours, naps, adjustments, tardiness, callouts, EVERYTHING.

I broke my own rule on that one because I wasn't really asking for accomodations and now, even if I thought my being let go had to do with my N (I don't think it was the only thing, but I have my suspicions it was a good part of it), I've got nothing to hold water because I let it be so casual.

If at all possible, do everything in writing and have copies signed by you and HR. In your case, tirednurse, I'd consult with a labor attorney, the union, and/or other authorities on the subject

i completely agree with kidlet, as someone who has been through it and now has over 1000 pages of documents to produce in court, definitely get everything documented. These documents are going to be so useful in helping me win my case!

oh and keep any contact you have with work by email in a separate folder too, i'd recommend email rather than phone call too, so you have written record.

I highly recommend it! Your employer is required to make accommodations per ADA. Some jobs are just more flexible than others. I work in retail and I am really blessed to have an understanding boss who approached me about changing my schedule before my N was dx'd. He noticed I was having difficulty and has been extremely accommodating. Once I got my dx, I spoke with him and we are working on adjusting my hours. It has only been a few months, but it is going well.

Well. I am still employed barely. With the economical crunch going on my union now gave back 2 sick days. I work at a prison, so you can imagine how hard it is to work there as it is. To update you all, I have not filed an ADA. I did file my condition with HR and the FMLA (I think the family leave act) Hard to think at night when I'm supposed to be asleep. Things are so bad there one nurse at night just quit, he had enough. 4 more are leaving 2 in 1 month and 2 more the next month. They are now readjusting the schedule and I will be scheduled third shift one night and then first shift the next. These are the days that give me major migranes from messing with Adderall and Xyrem. I am going to reask them not to do this to me. If they still schedule me like that, I am going to file the ADA.

ANYBODY WITH ADVISE FOR ME.

I may just start another post also to see if there is anyone else with this problem.

A lot of you have mentioned that the company you work for has to accommodate you as long as you do tell them you have a viable disability.

This is not entirely true. The company only has to accommodate you as long as the accommodations are feasible for the company. That just means that if the accommodation would interfere with normal working procedures, or cause an undo hardship on the company they can refuse your request.

Now I could be wrong and confused on this part but I also believe that smaller companies don't have to be as accommodating as the bigger companies do. I know that for FMLA the employer only has to allow it if they have 50 employees or more. The smaller Ma & Pa establishments usually don't have that many employees and they don't have to follow the FMLA laws.

I don't know if it's the same for the ADA laws or not.

Of course if the employee wants to fight it in court the company would have to prove all of this, however, most employees don't pursue it.

N is a hard disorder to accommodate since most PWN request to take 2 or 3 short naps a day to refresh them and get them through the day. I know my employer said they couldn't accommodate me because I worked the phones in a call center and they say it would cause undo hardship on my coworkers that would have to take calls that I wasn't there to take.

The best accommodation I could get was to get up and walk around for no more than 5 minutes if I was feeling groggy. Well, I always felt groggy. I can remember day after day just having sleep attacks and then getting a call and getting woke up. There were days I was in tears saying to my friends, "if I could just doze for 10 or 15 minutes I would feel better and be able to work for an hour or two again."

So, before you tell your employer it's best to get a note from your specialist that deals with your N and give it to your employer. And definitely document everything. I wouldn't just document the conversations either, like others have said here, they knew after revealing their N that the employer would do anything to get rid of them.

Document any incidences or things that might be going on as well. That way if they fire you you might have a chance to win unlawful discharge if you've documented and feel that you were wrongfully terminated.

Kimmers

I'm with Kidlet. Once you tell, document EVERYTHING. Even if it doesn't seem important or relevant at the time. I told. I wish I hadn't. I get treated very differently now. Before, I was trusted. I was allowed to flex my time. Now, I am not even allowed to flex my time to go to the doctor. If I have to go to the doc, I have to take sick leave or vacation. Prior to telling I was allowed to go to the doc and then make up my time to finish out the work day. I ended up having to file FMLA because I was also no longer allowed to flex my time if I came in five minutes late. That is a reasonable accommodation but my employer didn't think so. By law, because Narcolepsy is covered under ADA, they are required to give you reasonable accommodation... but it is up to them as to interpret what is reasonable. I talked to a lawyer who told me that my manager is definitely acting unethical and is abusing her right of power, but it's not illegal and it is not against company policy so there is nothing I can do about it. I told because I thought it would help them to understand me better and they would be more understanding. Nope. The opposite occurred. It was pretty much the cold shoulder and like "this is a business and if you can't hang then get the F out" type of attitude. And HR is not your best friend. They are only there to cover the manager and the company's butts to keep them out of hot water with the law. If I weren't sick I would find another job in a New York Second. I don't feel I will ever have the opportunity that I had before or I will ever be treated fairly or the same or with the same respect again. Everybody on my team gets to flex their time but me. When I asked for a reason why, I am ignored. I was told by HR that flexing is a privilege up to manager discretion. I've done nothing to warrant not having that privilege, but it doesn't matter. I'm still singled out and there's not a doggone thing I can do about it. The lawyer told me I have no case until or unless they decrease my pay, demote me, or fire me.

Think long and hard about your next step. And again, **document everything**, E-V-E-R-Y-T-H-I-N-G. And don't expect to be treated fairly or different in a positive way because of it. They have a business to run and their main concern is your performance. If you feel your performance is affected and you need accommodation, again, document it. Request it in writing. Some people go so far as to send it certified mail because companies have "never received" the request while someone ended up fired.

This thread has provided most insightful, and I thank you all for the advice! I have a question: those of you who have interviewed for new positions after being diagnosed, *when* do you mention N?

I was diagnosed in March 2011, and my direct supervisor, was absolutely wonderful. She would ask me about treatment, and what makes life easier and the best way to increase wakefulness. I am trusted to manage my allotted break times (1 hour total each day) however I see fit. I can take my break at one time and crawl under my desk to sleep for a bit, or whatever I need. When I informed my department head, he ready my doctor's note (which included a Rx for naps) and said "Well, whatever you need."

It's too bad that my situation doesn't seem to be the norm, and when I decide to move on, I'm apprehensive about telling a company about my disorder because of the complications it may pose. I would love any interviewing tips with respect to when to speak up about N.