Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hello
I struggle with telling people about my illness its almost like im ashamed of it, and I try to talk it down and never explain the huge life changing thing that it is, it makes me angry with myself and I know that I do this because of how some people perceive cfs and fibromyalgia
People at work have a vague idea of my illnesses but I dont think they have a clue to what extent, although I have dropped my hours I still seem normal to them, also I think i have brushed over it with friends as I mainly speak to them over the phone, I tried to explain to a friend before and she has suffered with depression and she was very nice but in her mind she thinks that im suffreing with depression and im just in denial about it, so supportive but not really if that makes sense aahh
My family dont get it either and im always so scared to explain myself again its like im ashamed of it because of all of the its in your head stigma
Because i downplay it I find that im pushing myself when i should know better,I feel like in need to be completely honest with people now to the full extent so i have decided that I dont care now what others think of me now I need to take care of myself, easier said than done though as I dont want to isolate myself altogether
Thanks for listening
Luna x
I struggle with telling people about my illness its almost like im ashamed of it, and I try to talk it down and never explain the huge life changing thing that it is, it makes me angry with myself and I know that I do this because of how some people perceive cfs and fibromyalgia
People at work have a vague idea of my illnesses but I dont think they have a clue to what extent, although I have dropped my hours I still seem normal to them, also I think i have brushed over it with friends as I mainly speak to them over the phone, I tried to explain to a friend before and she has suffered with depression and she was very nice but in her mind she thinks that im suffreing with depression and im just in denial about it, so supportive but not really if that makes sense aahh
My family dont get it either and im always so scared to explain myself again its like im ashamed of it because of all of the its in your head stigma
Because i downplay it I find that im pushing myself when i should know better,I feel like in need to be completely honest with people now to the full extent so i have decided that I dont care now what others think of me now I need to take care of myself, easier said than done though as I dont want to isolate myself altogether
Thanks for listening
Luna x
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Maybe educate them with web md? Let them read about it and maybe they will understand more.
As far as pushing yourself, don't. You don't have to prove anything to anyone. The only one that will suffer is you.
:)
I wouldn't feel differently if I had cancer or any other illness. I tell people when there is a reason - but not unless there IS a reason.
Family is a bit different - there are some people who deserve to know - but that's a call only you can make. If you believe it would cause more problems than it solves, then keep what's personal personal. Blood doesn't necessarily mean close and supportive.
I think part of your feelings may be coming from the feeling of "obligation" most of us feel to tell people WHY we can't come to whatever they invited us to, or WHY we can't do as much as we used to. We don't really have that obligation - the only thing we really need to say is "I'm so sorry - I can't make it this time."
Your business is your business - and that's never more true than when dealing with medical issues. There's nothing wrong with keeping it to yourself if you want to - it's personal and private.
Shannon's right that most people don't understand at all how bad it gets for us...nobody does unless they've got it. So we feel like we're talking to a wall about it.
It is very difficult, especially with commitments and responsibilities. I'm in a couples group from church that meets every other Thurs. night,and I hardly ever go. I just imagine what those people must think of me, although my husband is supportive along with 2 of the women in the group. So I shouldn't be giving it a thought.
For the people in your circle of friends or family that you want to explain it to, why not print out info for them? There are several things on line that would be helpful for them to read. Besides info from fibro websites, there's a letter called "The Spoon Theory," and "A Letter to Normals." Both of those can be googled and printed off.
Good luck with this. I know it's hard...we all do.
Take care...ELizabeth