I'm looking for suggested turns of phrase to help friends understand
* why a person who is able to ride a bike 20 miles/day can't simply stand up for 10 minutes
* how one day I can help mow a lawn or strike a stage or dig a hole, and the next I can't even sit and fold paper
* that this posture isn't the result of a choice or just being a slouch
I think they can tell it hurts, but when I get as far as "It's called 'ankylosing spondylitis,'" most people start looking at their watches. I get people who are engaged and trying to understand, and I still can't get it across.
I also don't know how to convey what it has done to my personality to hurt for years, and be so limited, and that if I'm hurting I won't act like myself.
I don't want to corner people and make them listen to my medical history, but does anyone have suggested ways of talking about this disease?
With other conditions, all you need is one word. If you say "cancer," or "heart failure," there's a common frame of reference. Most people know about these things.
What about an uncommon disease with a name ten feet long?
