How many times have you been asked by a doctor; "On a scale of 1 - 10, how bad is the pain?" Unfortunately I've been asked this question too many times to count. I realise a doctor needs some indication, a clue as to what he/she is dealing with, but I wonder how helpful this unreliable approach really is.
"EDS is considered a rare disease...and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey."