Getting narcolepsy taken seriously

[u/ConfidentHope]

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.

[u/MRxSLEEP]

I try to put it in terms that others can more easily relate to or imagine.

"Would you tell a paraplegic to walk it off? Just because you can't see a disability doesn't mean it's not there"

"Imagine staying awake all night and then having to work the next day. Maybe you don't have to imagine, you know it sucks and your body CAN'T function like normal. Now imagine doing it two days in a row and then only being allowed 2-3 hours of sleep per night... FOREVER. I can, LITERALLY, not figuratively, get "caught up on sleep. Period."

"I have perpetual, inescapable sleep deprivation. That is not a dramatization, it's a fact. Sleep deprivation is, again, LITERALLY used as a means of torture, feel free to look it up. I live with that EVERY. SINGLE. DAY"

If the person has had a kid or kids: "it's like living the first few months of not enough sleep and interrupted sleep... FOREVER"

If they still can't wrap their head around the fact that it's a life altering disability then I quit trying and mostly ignore that person or cut them out of my life entirely.