I agree with Debbie that a bit more negative is sometimes needed to convey that...well, that it IS worse that what the average person experiences.

For example, I offten call it Degenerative Joint Disease instead of Arthritis, because I don't just get a little achy when it's rainy, I have an ankle that's locked in position, swollen, and caving in.

But I don't want to be like my friend who always has severe deep contusions (not the bruises we normal people have) or severe acute bronchitis (like "acute" doesn't just mean "not chronic").

I sometimes like medical-ish words such as regulate, intolerant, debilitating, medicating, episode, flare-up...as opposed to words that people can relate to TOO much. Everybody gets exhausted, overtired, shaky, overwhelmed sometimes.

Of course, this all assumes that we're talking to people who are actually listening and wantint to understand. If they aren't, I guess it doesn't make any difference what we tell them, does it?

I'll never forget sitting with a couple of colleagues at a break between meetings, and one lady leaned forward and put her hand on my arm, looked me right in the eye and said, "Tell me what it's like to have MS...how do you feel most of the time? How does it affect your life?"

I kind of laughed and said, "Oh, you don't have time for my epic story!" and God bless her, she said "I've got all the time in the world. I really want to know." I told her, "I love you forever."

But since most people aren't like this lady, I'll still keep trying to fine tune some terminology that works. Keep the input coming, please.