Fibromyalgia Support Group

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weird conversation about fibro

milily
milily
I had to call my Moms cousin the other night about getting info about when my great-grandmother came here from Germany for my sons school project. She asked you have that fibromyalgia dont you? She talks to her nephew alot who has fibro. She would say these awful things about him - I am guessing because she doesnt understand fibro - and then would ask me about it knowing I have fibro. I first I was mad at the things she was saying that anyone with fibro would have found offensive. But then I decided to take the opportunity to answer her questions in a way to educate her. I have never called her before - I didnt realize what I was getting myself into. I just hope maybe she will be a little more compassionate with her nephew now - who by the way is my Mothers other cousins son - so he would be my second cousin?????????????
mynameisD
mynameisD
Good luck. Education can never be a bad thing
PeaceN2You
PeaceN2You
You have a lot more patience than I do. I've tried to talk to people like that but I run out of steam long before they run out of stupid.

Hope your efforts made a dent. I'm sure there are some people who truly just don't know and will listen to the facts. I just haven't met them LOL
deleted_user
deleted_user
Haha, PeaceN2You.. great way to put it. I too find that when I start to explain it in preschool terms and their faces just become instantly zoned out. I don't even bother anymore. I don't have to explain myself to anyone other than people who actually need that information from me.
deleted_user
deleted_user
I feel the same way you do Peace. I only bother with people I feel are worth it. I don't care WHO you are, if you cannot have simple compassion for another person, than I will not waste any time with you.
deleted_user
deleted_user
I feel the same way as PeaceN2You. I have tried to explain to several people in my life about fibro and they just never get it. They persist in trying to make me feel like a lazy bum. So I have given up. But yes education is very much a good thing
susanbanthony
susanbanthony
Yeah, I have been growing real thick skin......my Dad last night said something he thought was too be funny...NOT, "now that your on SSDI you can feel better!"

If that was only true....but I know he did not mean to be hurtful but it still was:-(
milily
milily
Susan- my former Dr said the same thing your Dad said. Not to mention I had not worked for 4 years before receiving it - so getting disability income wasn't going to decrease my fibro - don't get me wrong though I feel very fortunate to receive the income.

I guess the reason I felt the need to educate my moms cousin was she seemed to have no idea about fibro but yet knew alot of what her nephew was going through and critized him harshly. I guess I was trying to be helpful for the nephew. Otherwise, I only see her at weddings and funerals and would never discuss this with her. I don't really tell people I have fibro - if I feel like I have to say anything I say I have a chronic pain illness at let it go at that.
milily
milily
This just occured to me - My Grandma use to tell people what other people had wrong with them as conversation - that's probably why my extended family knows I have fibro. Thanks Grandma.
fibrolizzy
fibrolizzy
Milily, I think you did a very commendable thing for your nephew. I hope what you said will stop her from being so cruel.
Abotsd
Abotsd
Information has never been easier to obtain. If people are really interestd. I told my last curious acquaintance, "My own drs. don't know the cause or the cure. Why should you? That stopped her for a while.
Maika
Maika
I find that just telling people it is an illness that effects the immune system and the nerves is simple enough. Talking about the symtoms gives them the option to assume we are whining.
If I just keep it simple, they simply shut up!
Ofcourse, I am a very straight forward person. So they either get it or they don't!
Either way their ignorance is their problem not mine.