I don't need or want sympathy for how I'm feeling, but would like people to understand. I have many complications with WG and other illnesses that cause pain etc. But the one thing that is more debilitating than anything else with my illnesses is the chronic, severe fatigue.
My children are now young adults and I really want to be setting a good example for them with good work ethics. My 17 year old just wants to sit and play computer games all day and neglect his studies and the elder 2 (both early 20's) thankfully have jobs and are working, but constantly complain about working 40 hours and believe that it's too much.
They were too young to remember the 60 hour weeks I used to work when I was their age even though I'd already had a few relapses of WG. The relapses and damage to my kidneys eventually caught up with me and I'm no longer working.
It's so hard to try and motivate them when they see me spending a lot of my time sat down with no outside appearance of how ill/tired I feel.
They don't seem to understand that if I do a simple job like empty the dishwasher, I feel as tired as they do after a 10 hour shift at work.

On a financial perspective, in the UK at least, claiming benefits is hard when you explain your main disability is fatigue. It doesn't seem to be considered debilitating. If only they knew........