I absolutely agree in the UK it’s terrible there is literally no support and it’s a bit of a joke to most people it’s so fustrating

I have actually had people at social welfare gets fits of giggles when I call to talk about my benefit after I tell them what my illness is. It blows my mind. It’s happened more than once!!! I think I cried all day afterwards both times. It’s just so defeating to have to put up with the ignorance….especially when they are the very people who decide what help i get from the government now I can no longer work!!!
When I was diagnosed I was told New Zealand has no support group for narcolepsy but we are allowed to contact the Australian support group and they will send some brochures via email!! Lol seriously!!!
I guess it can only get better as people become more and more aware. Compared to 20 years ago when I was first diagnosed, the diagnosis rate here in New Zealand has changed significantly. I was my neurologists first narcolepsy patient and he now has 7! And I live in a pretty small city (in a very small country).

Probably never! It's not as visible as other disab, and not well understood!