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By Catnap

1 min read

I have had narcolepsy type 1 for more than 8 years. I am at a loss for what to do. I lost my job because of folks not understanding it.

Losing my job

Let me explain. I had a boss that didn’t want to work with me because of it and they moved to a new location, even though I had the work accommodation approval allowing me 15-minute naps 3 times a day. At the new location with a new boss, I missed a flight because of difficulties getting medication. I was fired not because of job performance but because I missed a flight due to difficulties getting medication. You would think I could file a successful lawsuit because of my disability. Nope. EEOC dismissal.

Finding the right doctor

So currently I am unemployed using Medicare and in between doctors. One of the doctors who initially gave me the medication later decided to tell me to find a new doctor because he’s not used to prescribing this type of medication. I am hoping that the new doctor will give me a prescription but he is backlogged until January. As I'm writing this post I am pausing often because my emotions are making me go into cataplexy fits.

Dealing with my emotions

Sometimes I wish they could cut out the parts of my brain that have emotions because dealing with uncontrollable sleep, delusions, and trying to calm my emotions like Spock is unbearable.

I am truly sorry that I do not have something uplifting to post, I am just in a bad place right now and have to vent. At least in some way, it makes me feel better to talk to people that understand.

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Lori.Foster Community Admin
Hi <inline-mention username="Catnap" user-id="4248993"/>. It has been a long time since you posted this story. I wanted to check in and see how you are doing. Were you ever able to find a new doctor who would prescribe the medications you need? My heart goes out to you. Sending the best of all wishes your way. - Lori (Team Member)
Iris Vasconcelos Moderator & Contributor
<inline-mention username="Catnap" user-id="4248993"/> Hey hun! Firstly, jesus that sucks so much! I'm so sorry that you've had to deal with so much! It's incredible frustrating and exasperating. I myself have never been overtly fired but I have been "let go" after 2 weeks at a job where I had decided to tell my boss about my narcolepsy when I was hired and then everyday after that she continuously asked me if i was ok because "I looked tired." It unfortunately is so hard to maintain a full time job sometimes. If you ever need someone to talk to, please feel free to reach out to me through private message! Hope things begin getting better for you soon. Take care, Iris xxx
1. nanajuliana77 Member
 OMG! It's like you just described what happened to me! I also had to let my work know and she literally was coming by my office to peep in and make sure that I was awake. She kept asking me to stand while I worked, just to "make sure" that I wasn't going to fall asleep. They wouldn't even get me a stand-up desk, she had me place my keyboard on a large box, so it would be up higher. I began looking for another job, but ended up getting fired because "I just wasn't a good fit.". Just a terrible place to work with just as terrible people to work with. I know that I'm better off not being there anymore, but it still hurts that it happened and it's infuriating, at the same time. Both, the article and your comment, fit me to a T! Thanks for sharing with us.
2. Lori.Foster Community Admin
 How maddening, <inline-mention username="nanajuliana77" user-id="8771165"/>. I can understand how that still stings even though you know that place wasn't for you. You want to leave on your own terms, not theirs, especially when you employer was the problem. That supervisor sounds awful. I hope you have found a better situation. Gentle hugs. - Lori (Team Member)
Tatiana Corbitt Moderator & Contributor
<inline-mention username="Catnap" user-id="4248993"/> I am sorry to hear that you are going through this. Unfortunately, I can relate to not being able to hold a job due to narcolepsy. I've been fired from two due to my symptoms! The ADA does a better job of protecting businesses than disabled individuals in the workplace. Less than 20% of lawsuits against companies for being discriminatory towards disabilities result in the any compensation for the disabled employee, whether that is accommodations or a payout. I talk more about this in my article on narcolepsy in the workplace, found here: <a href='https://narcolepsy.sleep-disorders.net/living/workplace-discrimination' target='_blank'>https://narcolepsy.sleep-disorders.net/living/workplace-discrimination</a> This is a larger problem than just us. It's a societal problem. Narcolepsy is not easy to live with, especially when the world around us doesn't care to accommodate invisible (or even visible) disabilities. Please take care of yourself and know that you are not alone in this. We are more than what we can contribute to a company. We deserve respect and a high quality of life regardless of our ability. Thank you for your candor in sharing this. Our community is here to support you. Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Gabrielle Keith Moderator & Contributor
I am so sorry you are going through this rough time. While I don't have cataplexy, I deal with a lot of sleep attacks and brain fog when I get overwhelmed. There is no need to apologize for unloading- we all need to do that sometimes! Give yourself grace and remember that you are not alone. There are many other people here in this community who are in the same boat, but maybe don't have the courage to share. Xoxo/Zzz, Gabrielle