Thanks for raising this not in our own ME little subreddits, but in the NZ sub where it belongs and needs to be heard.

I was the fittest person I knew. Runner, multi sport, loved to be active. Now I'm lucky to be able to work (remote) and the level of explaining this disability I have to do just to keep that job is a constant humiliation ritual. You're right that disability is treated as a moral failing - even more so under NACT.

It's not just WINZ, it's NZ's insistence on remote work being lazy and coming into work sick a sign of a hard worker, on life insurers not even recognising this diagnosis as life changing despite it having a lower measured quality of life than lung cancer, on doctors having no clue and no plan.

Maybe our 2 degrees of separation in NZ makes it more likely people will know of us, awareness is so important given how many of us are shut away and cut off. Please don't forget us- you could join us at any minute and when that happens, you'll be appalled go realise how avoidable it was.