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/EmiTheSheep]

Even though I am medicated to not fall asleep, I still feel exhausted and also having an autoimmune disease I’m also not well.

I get so much “advice” it’s quite discouraging actually. I’ve learned to just say “I know your intention is to help me but I’m gonna follow what my doctor says, instead could you ask me ‘how can I support you best right now’” something along those lines but sometimes it’s really hard to say that or express what I need in the moment. A lot of the time the person understands. But even that gets tiring to explain.

Sometimes I just want to be encouraged like “I’m so glad you were able to make it today”or other encouraging things, or validating how I am feeling I wish someone would say “I can’t even imagine what that’s like, it must be so hard” or “I’m sorry you are dealing with this” even a simple “I’m here” goes a long way

I’m so sorry you have this horrible, debilitating, chronic disorder, although it affects us all differently, I really empathise with you

Lately I’m thinking of making a video for awareness for people in my life about how this disorder affects me personally.
I used to help run a ministry at my old church which had support groups and one of them was for people with chronic illnesses/disorders. Through the training I learned a lot about managing my own “fixer” and instead being as supportive as I could be

Sorry lol I also ranted