I am not sure anyone who doesn't suffer from fibromyalgia "gets it". It goes back to the "You don't look sick" syndrome. My husband, kids (all grown with children of their own), my friends and family "don't get it". I send information but I'm pretty sure they don't read it. Isn't is a bother to learn about why I have to cancel things? Why I am in pain on a "beautiful" day? Why I am in pain the day after I have a "great time"? it's too much of a bother for them. Sad for me.
BrendaJune, I think they are AFRAID to read it. Reading it makes it true, in very stark, black and white terms. Reading about it is ugly. It talks about an illness that seems like some awful spell from a fairy tale. How do you deal with something like that? Even I, as a sufferer, don't know the answer to it.
What an excellent answer! "Reading makes it true" Reading about it is ugly" I will send this response to my children. They can read it or delete it. Thank you so much. You made my day!.
You are very welcome. I hope they "get it" and decide to read about fibro.
Good luck, BrendaJune!
the thing that helped my daughter (29) the most was someone else with fibro talked to her… Telling her what her life is like, since then my daughter is a little more understanding, but still does not fully comprehend, really how can anyone understand … We do such a good job at covering up our pain, we have to, if we didnt we wouldn’t be able to do anything, I’m just starting to realize, when I’m done, had enough ( like my grandsons birthday party) I just have to go, and be glad I was able to even make it.
These are great! Going to print them and give it to my husband for Christmas. I’m going to include a note that says “this is all I want for the rest if my life.” Not that he gets me anything anyways - I think maybe this will help. He went with me to my therapist 2 weeks ago and it was evident that he may acknowledge it, he doesn’t get it. Example: “I don’t get it when she has a migraine. I’ve never had one. If I have a headache I will just try to do something else, like go putz around in the garage or take an ibuprofen. I think she dwells on the pain too much.”
Last week she asked me what I thought of his remarks. I said that I knew that us how he would react. He just doesn’t have a clue and I’ve become a very good actress so as not to ruin everything we have planned. When I asked her what she thought - she was like I’m trying to find the word without being rude! Told her not to worry, I know he doesn’t get it. His mom used to have the same mentality until her knee had to be replaced and now her hip. Sometimes I think that God chose us to fight the pain because he knew we could handle it. I know my husband couldn’t take it day after day.
As a mom, I still try to protect my grown children and will do anything for them. I will bake their favorite cake for their birthdays and keep up the holiday traditions because I want them to have wonderful memories, even if it puts me to bed and pain meds for days. When it comes to them and my granddaughter - it’s worth the pain.
I like the first letter a lot! It makes you see fibro as the devil that it really is. Perfectly captures it.
Thanks so much for posting this, Angel. it's nice to read something that's non-clinical and really gets to the heart of the matter in regards to fibro.
Boy, Sandi, you are one shaker and mover. You do all of this on top of working a full time job? I don't know how you do it. I hurt even hearing of your schedule. I admire what you do, especially with your children. But i don't know how you can keep on keeping on as you do. Bless you for doing as well as you do.
It has to be difficult to be with someone who really doesn't get fibro at all. But I'm kind of thinking that maybe a lot of men would see it in this light??? I do think that your comment about God choosing us to fight the pain because he knew we could handle it has some merit. We're some pretty tough women here (and a few men, too.)
thank you for them letters i will see if i can get my family to understand well thats if they will bother reading them that it but worth a try thanks again x
I could never think of a reason good enough for people who love you and are linked to you for life to behave this way, that is not to say that I am exempt from it, as I am not, but here's a thought.
We have always made everything about them, no matter how bad we felt, no matter how sick or tired we were, and we pulled through, therefore, they expect it of us always. Chances are their parent did it for them too, so this has become 'normal behavior' to them, yet somehow we expect them to have changed.
Make any sense?
I am in the same situation... Because there is no know solid cause, there are many skeptics, I sooo wish they could be me for only 1 minute, to truley feel how tough I am to feel like this everyday, yet still managing a somewhat normal life. And on days when it's so bad I cant manage. Let me be, and judgement free.