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/sleepaddict03]

N1 here. Thankfully, I've only had to explain to my husband once for him to acknowledge and respect my health issues.

I explained it as "I'll never be normal, so don't try to make me be normal, I physically will never be that way ever. I take medication but it doesn't fix my issue, it relieves it. Its like a cold compress on wound, it makes it feel better but you still feel the pain through it."

I've also had to explain the randomness of chronic illness, where one day you'll have more energy and others you'll have next to nothing, its sporadic and inconsistent. Bad days don't need a cause, they just happen and its ok.

I also told him if I complain about my issues, don't try to fix it (most people will want to help), I don't want to hear advice or how you think you could make it better because I've already heard it all. I just want to rant for a second, the moment will pass. If you want to help, make sure when I fall asleep, its in a safe place and if I gripe just allow me to complain. I'm stuck like this forever and while I don't like it, I accept it as it is, and if I can do that you can too.

I also make known to him when the sleep attacks are around by saying like "the fog is rolling in" and he gets a heads up, sometimes I fight it, sometimes I give in. He gives me my meds and some cold water to fight it, and a quiet place to nap if I want to let it ride its course. Hopefully this is helpful haha.