I have people all the time ask how they can help when I'm having a bad day. And all they seem to think I off is "it will be okay". Which is great... sometimes. But it's not okay. And it hasn't been for years. My body is betraying me and I can't do anything to stop it. So saying things like that just irritates me more. My best friends doesn't understand this so it starts fights when I feel like I get no support
How do you guys nicely explain to others what is helpful and what isn't
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With all your respect Diana. A lot of illnesses have end dates and cures. I know what you mean as it's not life threatening up front but i certainly feel like I'm on my way to an early life due to the stress my body feels from fibro. It's hard to be grateful each day and can be difficult when friends don't understand. Bless your positive attitude π
If this "disease" has given me one gift, I would say it's EMPATHY. I recall being young, filled with vim and vigor and thinking "so & so is just looking for attention" or that they were antisocial. Chronic illness is a great teacher.
AMEN
Try to remember your life BEFORE fibro. Do you recall hearing about friends, neighbors or relatives who were diagnosed with MS, RA, Lupus, or cancer? Like most folks, you probably sent a card or called to check on them, then went about your life. It's not until you have this icky disease 24/7 that you realize how all-consuming it can be. The next time someone asks how they can help, simply tell them, "by being a friend and understanding that I can't do the things we used to do." True friends will stay...the phonies will disappear. Good riddance. This is a superb support group, and I'd encourage you to make friends with other fibro patients in your area (even if only to meet for a cup of tea). God bless you.
Im not very good at asking for help and so I then get quite cross when I am struggling or feeling that people aren't helping me. As I don't share these feelings other than eventually breaking down crying no one is any the wiser. I guess for me (and maybe you) its about accepting at times that we need help, reducing the amount of work that I need to do and asking specifically for help. I also have to be less hard on myself my house is never going to be a show home even if I could be bothered to clean it 24/7. I have to fight my own prejudices about what I should be doing.