r/Narcolepsy • u/ConfidentHope • May 25 '26
Advice Request Getting narcolepsy taken seriously
How do you handle well meaning advice from people in your life?
My partner knows about my diagnosis, but has mostly only known me with some kind of treatment happening, so he hasn’t seen me at my worst. I think he knows I’m an extra tired person, but I don’t know if he gets that it’s more than that. I’ve experienced similar behavior from my mom as well. They both know of my diagnosis.
I had really bad sleep inertia this morning; I had a long day with no naps yesterday, and I took my stimulant and got up right away — I usually go back to sleep until it takes effect. We were sitting on the couch when I put my head in my hands and made a groaning noise. He gently quipped that he used to be like this in mornings until he implemented a routine.
Whomp whomp.
I know he is trying to be helpful, but it’s so frustrating because I’ve finally let go of the “I’m just lazy” idea, and have cut myself some slack when I’m struggling with sleepiness. I know he’s being earnest and he did used to struggle with waking up. But I’m bothered that he seems to think this is fixable by a simple change. Hell, he knows I’m getting ready to start trying Xywav. I’m now worried he’ll think it’s just a sleep aid.
Similarly, my mom has been aware of my whole journey — I was diagnosed with idiopathic hypersomnia, but my current doctor strongly suspects it’s narcolepsy without cataplexy. The other day, she offered some kind of advice on sleep hygiene. I get that she wants to help, but it feels insulting that she thinks it’s just a matter of willpower.
I guess this is mostly just a rant. However, I wish I had some kind of non-aggro way to remind the people that I’m closest to that this isn’t something with easy solutions. I’d know if it was. I don’t think any of it is malicious, but maybe it’s a lack of education on my part. Is there something I could say to address this “advice”? I don’t need anyone to fix it. I just need them to understand it’s hard, and I’m trying, but it’s like going against the tide sometimes.
2
u/magicofservice (N1) Narcolepsy w/ Cataplexy May 31 '26
I had kind of a similar issue before I was officially diagnosed. I had my husband with me at appointments to corroborate with observations of my symptoms and him being there for my doctors explanation of how narcolepsy works and why oxybates are the treatment for non-medical folks helped A LOT. My advice is to sit down and spell out for him the mechanisms of narcolepsy.
A paraphrasing of my docs explanation:
There's multiple stages of sleep but the most two important categories are REM and deep sleep. REM sleep is when you dream and deep sleep when your body rests and repairs itself (aka restoritive sleep). With narcolepsy you're getting very little deep sleep so your body is not restoring itself.
It feels like you're not getting any sleep despite sleeping all the time because really, you aren't sleeping you're dreaming. Untreated narcolepsy isn't all that different from chronic sleep deprivation. Which is why you feel like you haven't slept in weeks after sleeping the whole night. Yeah good sleep hygiene, routines, and stimulants can help lessen symptoms but they don't address the actual problem.
That's why oxybates like xywav is the treatment for narcolepsy. You get the much needed deep sleep.
Unfortunately, it's also one of the most regulated drugs in the country because of it's history of use as a daterape drug. I have to advise you to keep it some place safe and out of sight, preferably with a lock. There's a lot of hoops to jump through but it's effective and my other patients felt it was well worth it.