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Did you tell your employer?

Did you tell your employer you have narcolepsy? What was the conversation like?

  1. I worked from just about 17 to 25. I havent worked since my oldest was born. Anyhow, I don't recall not one of the slew of jobs that I had where I didn't fall asleep. I was unmedicated for most of those years, so it was bad at some points. I wasn't diagnosed but knew I had an obvious sleep issue. I never did get into trouble. But I had to try and accommodate getting sleepy. Like take naps on breaks. Or finish work and find a little corner to nap. It didn't always work out that way. Also got teased alot for dozing.

    1. I was actually diagnosed with narcolepsy during my first teaching job. I worked there from January-September before I got a formal diagnosis. I had to tell my principal about the sleep study because I had to miss work that day. Once I got the diagnosis, I was very open about it all. I explained that she was going to learn about this just like I was.

      After working for a few months post-diagnosis, I learned that taking short naps during the school day really helped me. I had my doctor write a note, and I explained to my boss that I need to lay down for 30 minutes each day. She was totally okay with this, so I made a "do not disturb" sign and emailed the administration team to please respect this sign unless they want to walk in on me laying behind my desk! (That would have been very awkward for school tours!!)
      nterestingly, once COVID hit and we returned to in-person learning, I didn't have a classroom that was "mine" anymore. Being a music teacher, I had to give up my classroom as the designated music room to become an extra homeroom so students could be socially distanced. During that time, I talked to the school counsellor asking if I could come to her office during my lunch break and lay down. Thankfully she was all for it, even offering me a blanket and pillow she keeps in her office for students.

      I am a firm believer in being open and honest with people about living with narcolepsy. I am very lucky in that I haven't had any bad experiences with this, but I've heard some horror stories about others who aren't as lucky as I am. However, there is no way to end the stigma about narcolepsy without being open to those who don't understand!
      Xoxo/zzz, Gabrielle

      1. I have told employers before, sometimes they have said something like: 'that's fine', as if I told them I had a cold and then went on to discriminate against me. (Didn't renew my contract because I was 'too slow&apos😉. I had others do similar, saying 'that's fine' but then refusing accommodations, calling me lazy etc. and others found out by someone else telling them and then I got overtly discriminated against. A lot needs to change. We deserve better, I believe that this is possible and we will achieve it, even though it will take time. Let's keep this conversation going. Sending solidarity to anyone struggling with workplaces. Don't be afraid to ask for the accommodations you have a right to! I do believe there are some understanding workplaces out there as well which are worth finding. Of course working here, having narcolepsy is an asset! Lauren (Team Member)

        1. I told them and we are so short staffed so they gave me no day off when my medication was making me ill, and also have yet to make me stop working overtime. It gets brushed off and I think it's taken as me being lazy.

          1. I'm really sorry you're having to go through that. That's just awful, I've also had so many bad experiences with employers. I wonder if there's an opportunity for you to join a union? They will be aware of your rights and can negotiate such things with your employers. There are laws in place that mean employers need to make adjustments and having time off when you're unwell and lowered hours is an adjustment. I'm linking you an article about workplace accommodations which I hope might help. I also really like Kerly's idea about giving them leaflets from a narcolepsy org. It might also be worth contacting a narcolepsy charity that is local to you, some of them may be able to help. Wishing you the best, please keep us posted about this. Lauren (Team Member)

          2. I am so sorry to hear that they wouldn't give you a day off. Is there something like a union or someone you can talk to at work? I believe you should have rights as a worker and also because of your disability.
            Kerly { Team Member}

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