I wanted to share some of the replies that I've received.
"Well, they do say that people with sarcoidosis are the best looking sick people! I don't normally refer to myself as a good looking person, but for as sick as I feel, I definitely think I look darn good! I wish I had better advice, or wisdom to share...but, that's all I have for you. I wish people could somehow understand, but I don't think it will happen. I mean, before I got this I would never have understood the seriousness of it if I saw someone with sarc. Cancer patients look sick. Parkinsons patients look sick. Sick people normally look sick. But we don't, it's hard for people to comprehend."
"Keep them up for two days, tying them up in the sun for the duration of the second day. Shoot them all over with a bb gun to simulate granulomas displacing something they might feel is important to them.
If you have pulm sarc get a small diameter straw and ask them to breathe through it while on a treadmill for ten minutes and realize that's how you feel all day.
If you have neuro sarc get thirty lb. weights and tie one to each of their feet. Kick them randomly and in random places as they walk.
After you finally let them sleep, wake them in the middle of the night and insist they solve mathematical word problems. Then ask them if they want to go out shopping at the all night store. If they don't demand to know why not then immediately put your fingers in your ears and say,'LA LA LA LA LA'.
All this may come close to understanding. It might be more effective if you did it every day or even better, on random days so they have no idea when it will hit them.
Another approach when someone says, 'But you look so well', might be to say,' And you look so smart...'.
On the other hand I'd love it if people stopped saying,'I feel like that too', when they're 80 and I'm 45!"
It seems the only people in my life that really "get it" are the ones that are around me on a regular basis or that also have an illness themselves. If you are one of those that don't "get it", please don't tell me that I'm blowing it out of proportion or making something bigger than it really is, until you walk a day in my shoes.