One of the most difficult experiences I've encountered in dealing with this disease is uninformed people making infuriating statements. The one I hear the most after explaining to a person that I am ill, is: "really?...but, you don't LOOK sick", and more often than not it is said with incredulity. I really have to bite my tongue to keep from snapping at them .To me, that statement is a negation of my pain, a slap in the face, a questioning of my honesty. No one would even think of saying that to a cancer patient or someone with AIDS, But they say it to us.
Case in point.....I recently took a trip with a friend and had the hotel arrange wheelchair service as just getting to the lobby was too much of a workout for me. As we were leaving the bell person came to our room as I was sitting on the edge of the bed getting ready to hoist myself into the wheelchair. He walked in with his cart, looked me up and down and the first words out of his mouth were "So, where's your cast?... you don't LOOK sick" I wanted to lift my foot and kick him in the goodies. He was lucky I wasn't able to, or he would have been speaking an octave higher the rest of the day. What an incredibly rude thing to say. I did manage to keep my cool and say "My disease affects me internally" but I will admit I gave him the evil eye while saying it. He zipped it after that and kept his comments to himself. I forgave him later, but not before ranting a bit to my friend who was very understanding. In the end I realized that he was probably just an unhappy person who happened to have misplaced his brain-to-mouth filter that day. I just hope he'll be more compassionate with the next person.
