re: I suffer chronic demyelinating neuropathy, would like to hear about your experien
Here is a website to explore: [url]http://www.myida.org/[/url]
It’s called The Invisible Disabilities Advocate, and they have some articles, etc that might help you and family and friends understand what it’s like to live with what is essentially an “invisible” disease.
I struggle with not wanting to go out looking like hell, but then if I can polish myself up enough to pass muster, and people tell me “you look good!”– it doesn’t make me feel good (although I’ll smile and pretend– while rolling my eyes to myself.) I feel like if I tell the truth (that I feel like crap!), that I’m not being “nice.” It also makes me feel bad, and others feel uncomfortable. People like nice endings, and pretty things. This illness provides neither, and there are few REALLY true friends– even fewer that will stick around for the frustrating permanent nature of this journey.
Hang in there, and welcome– you’ve found the right place!