I was diagnosed with narcolepsy almost 2 months ago, and I have still been struggling with Severe EDS on a daily basis. I will be starting Xyrem soon, but unfortunately even once that begins working and I'm hopefully able to function at a higher level during the day, it won't help my employment predicament as it is now.
Before being diagnosed I had called off work a few times due to being unable to drive and excessively tired- I didn't know I had N at the time- but I was just "sick" and couldn't get out of bed. Well, now we know why I have felt like this for so long- thank God! Due to 6 absences in the past 10 months I have been put on a Level 1 discipline with my employer. This means that if you call off again you are unable to transfer positions (something I really need because I work in a cubicle prison which makes me even more of a prisioner of my narcolepsy). It also means that I will no longer be eligible for Tuition Reimbursement, and also that any more absences will result in termination.
This morning my husband left for work very early- I had 4 alarms set. Didn't hear ANY of them. Not one! So I was having a major anxitey dream and woke up panicked- and then I looked at my clock and that's when the REAL WORLD panic kicked in- it was already 10 minutes past when I was supposed to be clocked in and at my desk. I called my boss and was out the door in 5 minutes. The scary thing is that I should not have been driving- usually I have over an hour to get moving and have my meds kick in- but I had to go to work so I had no choice. I know it's bad, but I have never had sleep attacks in conversations or while driving before- just when working or reading or watching tv or in any situation where I am not engaged enough.
So I get to work and go talk to my boss, explaining that this is something I could not control- She said that I would go on a Level 2 discipline- which means I am out $500 in tuition reimbursement, and I am unable to transfer positions. Also if I have one more incident within the next YEAR I will be fired. I'm not eligible for FMLA until the end of November- but shouldn't the ADA grant some rights in regards to accomodating a schedule that would allow for a allow me to work my full 8 hours without being punished for being late when it's due to Narcolepsy?
Exceptions have been made for other employees who do not have disabilities- i.e. a coworker left the other day (unscheduled- same as being late) to go to the hospital because of cramps- and was told that she got a "pass" that time. She told me she should have been placed on a level.
SO my boss says she can't imagine what I'm going through and she really feels bad and wants to do everything she can to help. Well, I know for a fact that "passes" have been granted for multiple people- and I don't understand why my issue is not qualified but menstural cramps are?? Both my boss and HR have known about by diagnosis from day one- and I gave my boss a letter from my doctor yesterday explaining that I may have issues with focus and performance until we get everything figured out- I have given her a pamphlet for education on Narcolepsy. They had told me that the nap policy won't apply to me because I have a disability where I need naps in the afternoon to make it through- so they KNOW I'm having this problem.
I don't know what to do. After all this my boss is waiting to hear from HR- she sent over the letter from my Doctor and also forwarded my email that has a request for accomodation to allow me to work later into the evening to get my full 8 hours without being reprimanded if my lateness is due to Narcolepsy...
WHAT SHOULD I DO?? I feel this is discrimination becuase others have been given "passes" but I am not. With this new diagnosis I am scared of the unknown already- and now add the fact that I may lose my job on top of that- and I'm a mess.
SORRY FOR THE LONG EMAIL!!! Please give me some advise here friends!
In Trouble At Work And Need Your Advice!
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