Whatever she has, she can't sit on the fence.
If you want to be a spokesperson for say, rsd. She can't be doing her dance moves, no matter how bad they hurt her afterwards, the public just can't understand, or even begin to grasp that.
I can do 'some things', and then lay in bed for two/three days.
Then, my people are baffled, by thinking, hell, they saw me do it, now why am I complaining, or not answering the phone?
Am I on a bender or something?
(My sleep issues cause me to 'Sleep-write', and therefore I can look a bit twisted, I'm sure lots of you here can recall me doing that.)

If you're going to be a spokesperson, you can still do the other, just be 100% forthcoming about the illness, and it's effects.
IMHO.

Pete