There is help out there!

It's so frustrating to hear stories of people who are struggling to survive simply because they have Narcolepsy. So many people lose their careers, lose their families, lose friends, lose so much to this disorder. It is a devastating disorder that is difficult to understand for the average person apparently. I say apparently because of the number of people who still say some of the dumbest things I've ever heard. The worst part is they say it as if they're trying to help.

Here's some real help. If you're working, and you're seeing the writing on the wall because of Narcolepsy, DON'T QUIT, no matter what anyone tells you. Do NOT leave your job no matter how hard it is because as soon as you do, you're out of options.

You have to fess up. Tell your boss that you have Narcolepsy. Tell them you need help. You may be surprised. Probably not, but it could happen. Don't switch to part-time either, as that would disqualify you for benefits in many cases. It's a trap.

Next, you need to contact HR. Tell them your situation. They have a legal responsibility to work with you to provide "reasonable" accommodations. This probably includes giving you a bit of flexibility in scheduling or allowing you the opportunity to nap at times during the day.

In reality, that probably won't be enough, and you'll begin to feel the heat from co-workers and your boss. But don't cave. It's important that you get things in order before anything drastic is done. You need a PSG/MSLT that proves without a doubt that you have Narcolepsy. IH isn't good enough. It's important to get this done WHILE YOU STILL HAVE INSURANCE!!!

Get your doctor (who you've hopefully already built a relationship with) to put you on short term disability. This is a good time to talk with your doctor about disability. If your doctor doesn't see things the way you want them to, switch doctors immediately. Don't wait, hoping that they'll come around, cause they won't. Just find a sleep specialist, or ask someone who has Narcolepsy and lives in your area. Or, more realistically, find online support groups like TAS. People with Narcolepsy are a great source of information as many have been through this before you.

At the same time, talk to a disability attorney in your area. Not someone new, someone who's been around the block a few times. An hour of consultation can save you a whole LOT of headache. Can't stress this enough.

There's lots of hoops to jump through for SSDI. Maybe I'll write about that whole fiasco at a later date.