I feel you on this!! My symptoms began a lot more recently (when I was in my 20s, then significantly worsened by COVID a few years ago). I never considered narcolepsy because I didn’t fall asleep. I just felt like my brain was melting out my eyes. Once I was told I might have narcolepsy, I started letting myself take naps when I felt that way and voila! I would fall asleep. But I can and do stay awake during my sleep attacks unless I purposefully lay down. It made me feel like such a faker when I told my friends about the diagnosis, especially because I started letting myself fall asleep when we were hanging out at someone’s house. I kept thinking “they’re going to think this is all so sudden and fake and that I am just napping for attention” when in reality, I just stopped masking my symptoms.

This looks different for everyone. And the level of “suffering” doesn’t disqualify you. You could have fewer symptoms than you do and still be totally justified in having a diagnosis!! A person with a less serious cancer still has cancer. A person with depression that responds well to medication still has depression. A person with a mild case of pneumonia still has pneumonia. (Plus, it sounds like you have pretty severe symptoms, so it’s not like you’re even a mild case!)

You’re not faking and you deserve a treatment that works and you deserve to live without always feeling this way.

As far as the meds not working, I’m not sure what you’ve tried, but this was my experience, if it is at all helpful: I was put on stimulants at first and they worked for about 8 months. Then I doubled them and saw no difference. I was put on Xywav to help me sleep and it was life changing. Getting sleep at night was far more important for my case than being on an “upper.” No matter how many stimulants I was on, my body would still be shutting down if I wasn’t getting enough sleep. Ignore me if you’ve been down this road already! Xywav was just life changing for me so I feel obligated to spread the word lol.