I'm currently starting the process of looking into whether or not I can get on disability. Probably should have gotten on it decades ago. Didn't know what was wrong with me though. Unfortunately, as a child, my parents moralized my condition and even physically abused me for being tired. So I spent decades "trying to be a better person", thinking my tiredness was because I was a bad person. Very, very sad.
I think many of us have experienced that. Even now, I don't know how I can be diagnosed with a 'disorder' that isn't understood, has no definitive biomarkers, is very individual, has no clear prognosis, and has little to no treatment options that work for any group.
It's awful to experience, and adds insult to injury when we realize that pretty much no one will understand unless they are experiencing the same level of the same illness. Mild people who talk about being tired after exercising vs people who worry about making it to the bathroom. Even when I was moderate, I thought severe people weren't 'pushing through' like I was. Of course, pushing through is exactly what led me to become more severe, but by the time you understand, it's too late.