I try not to leave the house so I don't have to deal with it. I agree that it is frustrating when people say that but they don't really know what TO say... you know? They don't want you to feel bad, they can't make you better & so the normal human response is to say I hope you feel better soon. When they say, I hope you feel better... I think a good response is.... me too! Please pray

I'm just really honest and just say, 'its not the kinda thing that gets better. I have good days and bad day's'

If they are my friends they'll understand and if not they just don't say anything after that.

I find that people say allot of stuff like that when they are nervous and they don't know what to say.

Maybe I'd say to them, "Hurry up, and stop being stupid!" Well, no, I wouldn't say it, just think it. I'm afraid I just don't have patience for people who don't care two cents about me. When you have a chronic illness, and you are in the beginning stages of it, you find out who your friends are. And your family, of course, is going to be adapting to the new normal just as you are.
But you can only explain things to friends just so many times, and if they don't get it, they will never get it. It's time to distance yourself from them, for your own mental health. We need to understand that pain is very different from almost every other disability. People who are blind, deaf, paralyzed, and such have a hard enough time, but in almost every case, they are able to work because they aren't dealing with chronic pain. In this 21st century advances have been made that allow people with such disabilities to work in a growing number of fields. Pain keeps a lot of people at home. It is a different factor altogether. And our society hasn't caught up yet or found effective drug therapies that aren't addictive or hard to get. This is a truth that is hard for us as chronic pain sufferers to face, never mind those who look us and see the person but can't see the pain.
For family, print out a brief explanation of what fibromyalgia is and how it affects the body. Give copies to them to read and reread. You can include website addresses for them to go to, to get more info. You could do the same for your most intimate friends. For the rest, never mind. You have to take care of yourself and those in your innermost circle. God bless you. Things will improve.

I hate the ones that say, is that all you have? Like they're know how you feel with fatigue, pain, headaches and much more , family not much better. I don't talk to anyone except people that have it.

@A MyFibroTeam Member I did do that with my dad. He kept saying he met someone who had the same thing I did (only one of them though) and that they still worked. It broke my heart too hear that and he is old and would tell me that every time I talked to him. I finally wrote him a letter telling him very bluntly how that made me feel. I also printed out a page that explained simply what it is like to live with fibro. At the time my doctor thought I had RA as well so I printed up something about that but now they decided I actually have Psoriatic Arthritis. I guess it is close enough. Anyway, I also printed out the Spoon Theory story for him. At least with my dad I have learned that letters as the best way to get him to listen. Some people just don´t read anything I send though because they say they didn´t have time. When I´m talking to people in person I end up getting interrupted and never get to finish speaking... so I just quit trying. Just like someone else said, I end up staying in my house most of the time. I just got tired of trying to get people to listen or understand.

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