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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Bits Of "advice" Do You Wish People Would Stop Telling You?

A MyNarcolepsyTeam Member asked a question 💭
San Francisco, CA
October 21, 2022
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A MyNarcolepsyTeam Member

I just wish they would stop saying they understand. It's always followed by some stupid advice. They understand as much as I understand what it's like for a woman to be pregnant.

March 18, 2023
A MyNarcolepsyTeam Member

I'm very tired of the labeling "Lazy" also at one time I was believing my co workers they would laugh and make jokes about me. Until I was diagnosed and had to leave my job of 26 yrs.
My self esteem has drastically changed, I reframe from crowds, relationships since I've been diagnosed.

October 23, 2022
A MyNarcolepsyTeam Member

Hugs, out to all of you.
I really can't say they give advice - if they hear 1/3 of the things I have going on they usually end up asking more questions, rather than offering advice. I'm not sure it would be worth it since I do so much research. They just seem a little dumbfounded and because I limit my out of the house activities for a few reasons right now, there are not a lot of lay people to give advice. I see more professionals and specialists than I do those who know enough of my issues to just ask relavent questions like, "Were you able to make it work yesterday?" or "Did you finally get your medication (that required another pre-authorization)?"
I have really started to distance myself from well-meaning people who can't fathom the real meaning of 'fatigue' from migraines, fibromyalgia, Narcolepsy + depression and the mental fatigue of ADHD. Trying to navigate the world without maps nor GPS, in the fog, rain & below freezing temperatures at midnight, about sums up the type of fatigue I experience about 40-50% of the time even with my baseline pharmaceutical cocktail. Still have essential skills to learn in all that weather too. Looking into disability, but I think I'll have to explain how conditions, and medication side effects and daily pressure & hormonal fluctuations results in not knowing from day to day what I am able to get done and what I'm not. So we have to keep our heads up. 😉

October 21, 2022
A MyNarcolepsyTeam Member

Quit telling me to drink more caffeine, it doesn’t work people

October 21, 2022
A MyNarcolepsyTeam Member

They’re a few. Weight loss advice is annoying. Any advice on how to feel less tired.

October 21, 2022

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