When they’re really fluctuating, take a close in ‘selfie’ of your eyes to show your doctors if your pupils seem pretty normal sometimes. I take pics of dislocated joints, keep data on sleep and BP readings. Any evidence that will back up our bizarre symptoms goes a long way – especially when you have to see a new MD and you look fine. We have some fantastical stories for these skeptical people, and objective data helps them move past the ‘drug-seeker? malingerer? hypochondriac?’ thing they do, to be able really LISTEN and BELIEVE with EMPATHY. Any MD not truly understanding your personal EDS experience, will never be sufficiently motivated to really help.