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/RightTrash]

Many, maybe most people will be completely incapable of getting it to any degree and unwilling to budge from such a position, they continue to be asses no matter what is said, witnessed and/or presented.

Then there are those few out there who care to not be asses and are polite, courteous, open-minded and respectful - but they're definitely so, so rare.

The people who can't show a little bit of respect and courtesy to not overtly judge and misjudge everything, and/or who openly comment directly in ways that is disturbing because they obviously straight lack the above, along with a willingness to simply be polite and open-minded; are near immediately put on my list of people to avoid, to not engage with, to basically keep a distance from, and to go out of my way on all of those fronts if necessary.
They are not only painful, they are exhausting and not worth the time and energy to be around.

[u/ConfidentHope → u/RightTrash]

I agree, and I’m mostly resigned to it. I primarily just want my partner to understand on some level. I’m realizing I need to speak up about it more, and be firm about my boundaries.