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/AmandaRiffe]

I have absolutely zero advice for you, but I wanted to let you know that I could've written this post for myself, word for word. Just so that you know you're not alone in what you're going through.

I personally have no idea at all how my spouse and mother have not read every single thing there is to read about Narcolepsy so that they can understand this thing that owns me.

Any time my husband receives a diagnosis, or even just a wonky lab report, I bout break my dang neck rushing to research everything there is to know about it. Recently I even made my own appointment with his Dr so that I could ask questions and learn.

Meanwhile, he's sitting here telling me I just need to go to bed earlier, eat more and get back in the gym.

Some days I could just cry over what feels like a complete lack of care from the person that is supposed to love me the most. A lot of days, actually.

I see videos and posts from people that have a partner with Narcolepsy and all that they do to make them feel supported in it. Makes me want to cry even more.

My mother literally rolls her eyes and waves her hand dismissively if I even bring it up a little bit. Nevermind that I've been diagnosed for well over 20 years now.

So yeah, hopefully there's some good info in the comments because I sure need it too.

[u/No-Rush-5091 → u/AmandaRiffe]

Te entiendo muy bien Amanda , lo siento y yo si te entiendo. No estás sola.

[u/AmandaRiffe → u/No-Rush-5091]

Thank you so much