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whenever I mention to anyone that I have SJS an autoimmune disease......

Started by gold55, December 16, 2011, 06:39:18 AM

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paperdoll

Quote from: gold55 on December 17, 2011, 12:24:47 PM
heck, I'm free to decide who I keep on my friend list these days.  If anything this disease is teaching me about people and stress that I need to avoid!!
Thanks again for all your enlightening comments.  I will keep reading posts and absorbing like a sponge.  Maybe one day I'll be able to assist others with my knowledge and experience and empathy of their condition.  Have a super weekend! ;D   

You are wonderful!

paperdoll

Quote from: slccom on December 21, 2011, 10:34:35 PM
Now my usual approach, when possible, is to start laughing when I mishear something (and know that I misheard) that comes out funny, I share what I heard with them. "Fortunately, usually people didn't actually say what I heard!"

I find the spoons theory very useful, and with those who know about it, I just say that I'm short on spoons now and can't. Or if they want to go somewhere cold I just tell them that I have Raynaud's and my fingers and toes will freeze. Or it is too cold to go outside, and if I try I'll cough myself into unconsciousness. I just go by symptom for the conditions.

But as I said, I think I hang around a higher class of people -- lots of people with disabilities, musicians, Masons, etc.

You are very inspirational and I too will start concentrating on my higher class of people (gotta let the no show friends go ;)  )