YES! that's what really gets to me. I pull myself together trying to join the family or friends at events, and it takes all my energy to just hold it together before I can hurry home and rest. I am definitely declining, but if you were to ask some friends and family members and the various MD's I've been to they say things like, "you look so good" I'm a fairly private person, & want to hold on to some dignity. If I tell them how bad I feel, it doesn't seem to register, because I "look so good" I explain that my life will likely be shorter than if I didn't have this disease, & they say I'm being negative. start suggesting antidepressants etc. There have been nights, crawling to the bathroom, trying not to pee all over myself, when I have prayed to die. Those who have not experienced this just don't get it, and in reality, won't, no matter what we do. I alternate between anger and then acceptance. it is what it is, i know it and hate it!