This may be helpful: http://www.webersons.com/FibroWelcomePackage/interest.htm
(Note it was written specifically for THE FIBRO WELCOME PACKAGE by Micki and Rose (giving credit where credit is due))
I love this link. It's so difficult to explain to someone and I don't think anyone can really understand unless you've walked in that persons shoes. (my mother had it for several years before I did and I know I never really understood or appreciated how it makes you feel and the challenges she faced until I was faced with them too) I think it's great that you're taking the time to find out and to be a supportive friend - your friend or friends are really lucky. This link provides a really good description to give people a general idea of the types of things we have to deal with. Another thing I found that went a good way to decribing things to someone without experience of chronic illnesses is 'the spoon theory' - I guess you could just google that.
Personally I'd also say to accept each of the people that you know with it as individuals, they may all have the same illness but it may affect them in different ways and different things will work to help different people. The main thing I've learnt is that I have to learn to read my own body and accept my limitations. It's frustrating, because you can't allways do things that you'd like to. But also some things that you find you can do one week and feel ok afterwards but then you do exactly the same a few weeks later and your body can't handle it. Understanding these things may be helpful to your friends and I hope will help you to know how to react (for instance if they have to cancel plans, the chances are they're as disappointed about it as you are because they probably wish they didn't have to miss out but are probably accepting that their body is screaming REST and if they don't listen they'll just get worse... try not to get annoyed at this and be understanding) A lot of learning to cope with this illness is based on trial and error at the begining. while you find out what works for you and what doesn't.
Anyway, that's my experience from the point of view of someone looking from the outside of the illness, struggling to understand.... and then begining to learn to deal with it myself. I hope my ramblings have provided some help to you. Right now you're doing the one thing that is of the biggest help to your friends and the one they'll probably appreciate most - finding out the facts so that you are informed and basing your support on knowledge rather than guessing- I really wish I'd done more of that many years ago. Best wishes to you and your friends.
Post Edited (Brit teacher) : 1/28/2013 3:58:11 PM (GMT-7)