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Feeling Like a Fraud

Anyone else feel this way sometimes? Like you don't have an actual medical problem, you're actually just lazy and undisciplined?

I've been on max-dose stimulants for so long that my circadian rhythm is fried. I stay up super late most nights then sleep in forever. For a while I literally couldn't fall asleep for the night without taking a sleep medication. It feels like my body is gaslighting me--like, we literally have narcolepsy dude, falling asleep should NOT be a problem!!

And I know that's how it seems to my loved ones sometimes. I mean, what are they supposed to think when I can't wake up in the morning for something that's important to them because I went to bed at 4 a.m. the night before, and do the same thing later that day? It makes me feel like a bad person.

Anyone else relate?

  1. Thanks for sharing! I can't add anything that Iris and Tatiana didn't cover, I just wanted to reiterate that you're not lazy and I wish that people and cultural norms didn't make you feel like you might be lazy. Wishing you the best! -Aron (Team Member)

    1. My reality and my family's expectations are so different. If I miss an appointment and take time to rest, I'm expected to make the appointment next time. However, having Narcolepsy doesn't work that way. I might still be unable to make the next appointment although I changed the one before. (Team Member)

      1. This was pretty much my exact behavior when I was first diagnosed, and quite often at other times in my life. I tried to wring every last ounce of wakefulness that I could so that I would be as sleepy as possible, and then do the same with sleep. First visit with doctor that diagnosed me, I told him I was both phobic and philic about sleep and described the behavior above. He said running the test was just a formality, that I was a very typical example. Of course I then tortured myself for years that maybe he fudged the test results. He didn't, I just couldn't stop thinking it. It doesn't help that they tell you to practice good sleep hygiene and seem to expect you to manage that with a sleep disorder. I didn't manage that at all until I got on Xywav. But I'll still zone out and lose track of time some nights.

        1. I so agree with you Robert. It's so easy to say that we have to have good sleep hygiene but it's kind of like having to go to the's a very difficult habit to start having out of nowhere and you'll probably fall off the wagon quite a few times before it becomes a routine. That's how I see it anyways lol. Thanks so much for sharing with us! Best wishes, Iris xxx

      2. Oh my gosh yes! I completely understand what you mean and I feel the exact same way! It's like I start to even doubt myself and question whether I'm even using it as an excuse or just milking it...or am I actually just genuinely always exhausted because that's what narcolepsy is.

        My family doesn't understand narcolepsy at all and I think they do help to feed these thoughts sometimes. It's so upsetting and disheartening.

        I am so sorry that you're going through this too because like I said, I know exactly what it feels like and it's something that never goes away.

        Thanks sooooo much for bringing this up because I think it's just become such a normal thing for me to feel that I don't even recognise it as abnormal anymore.

        I truly wish you all the best and if you ever need to vent, please feel free to send me a private message!

        Take care! Iris xxxx

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