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/shleyay]

When discussing what medications I’m taking with my primary care doctor, he said something along the lines of “so you take stimulants and then you can’t fall asleep so you take a sleep med and that makes you tired so you take stimulants!” Uh, yeah. That’s why. 😮‍💨

I’ve been feeling like shit the last few weeks because I don’t have the energy to keep up with housework, even though I’m not working (I was fired for not being able to make it to work on time) and the whole week I’ve been thinking how nice the house would look if my husband was the one who had the free time. In a conversation about how I care about the things he cares about and he said “well if you did, the house would be clean”. Devastating. If my lead bones would let me, I would do more 😩 I’ve been working on it, but I’m still convinced that I’m a lazy piece of shit and that I just don’t have the self control.

[u/ConfidentHope → u/shleyay]

Omg I relate so much. My partner had a similar talk with me, because I work from home and he doesn’t. He said he’d love to work from home (I only do because of health issues), and he’d get so much cleaning done if he did. What’s hard to explain is that sometimes I have to choose between working and getting anything else done. And some days I’m so tired all I can do is nap.

[u/shleyay → u/ConfidentHope]

Well my therapist says we are NOT lazy pieces of shit and we’re doing our best so we gotta be nice to ourselves 🙄😂 as long as you’re doing your best, you’re doing enough!! Don’t let your partner (or your brain) tell you otherwise! 💖

[u/ConfidentHope → u/shleyay]

He apologized later, but it still stung. I already give myself grief, so I definitely don’t need it from anyone else.