I am looking for input. I am a private person by nature and not very many people know about the fibro and other stuff. I am going to be explaining this to my daughter soon and she is going to need to talk about it with others. She is a very outgoing person who doesn't keep things in. I am going to try to explain a little about privacy but she is a child and I know she needs a way to cope and talk to others. She is very active in sports and other activities so we are around a lot of people. I just dread the stares and questions. I am trying to look at it as an opportunity to educate others but my heart doesn't feel it. Any suggestions on how to handle this? Thanks.
Thanks Avenk. That is a good idea. Hugs.
Thanks Lovett. Good suggestions. Hugs.
Hello, I am a private person as well. I only tell people who are on a "need to know" basis. For instance, my co-workers, so that they can tell when I am having a bad day. My husband, obviously, and restaurants need to know for my dietary considerations. Other than that, I really don't say much. I don't want the sympathy, looks, etc.
My experience has been I tell someone & a friend of theirs always has a "cure" they want to sell me, & these friends are so persistant they cannot understand why I don't want "The Cure for Fibromyalgia" (insert here the Dun, Dun, Duuuuuuun!!!)
So, maybe you can add that there is no cure, there is only treating the symptoms.
alot of great advice, and suggestions.. from me at this time big HUGGGGGGGGGGGGGGGGGGGGGGGGS
suzie
Thanks everyone for the input. Honestly this is a really difficult thing for me to do. But I will make it. Thanks.
I too am private and only a few people know about my condition. I have to use a cane when I am out of the house because occasionally my right leg will seize up with pain and it makes it difficult to walk. Although people see me with it, they don't ask questions, but lately I feel a need to share this condition with friends so that they are educated about what is happening to me and why there are things that are difficult for me to do.
Case in point, A friend of mine, a fellow writer, recently completed a novel and asked me to read it and give him notes. Due to the medications I am on and the "Fibro Fog" I've been experiencing, I could only make it through 2 chapters before I had to stop. My concentration level is nil at this point and it has been frustrating to say the least. I feel horrible not being able to help my friend out (especially since I have edited hundreds of web posts and articles over the years) but right now I need to learn to say no. Explaining this condition to people might be helpful, not only so that they understand what it is that we are going through, but to understand the condition itself.
For those people that I have told, I've tried to make it simple: I simply say that for whatever reason my brain no longer processes pain correctly. To my brain, my body feels as if it is on fire and someone is trying to put it out with a sledgehammer. It can no longer distinguish between a pillow brushing up against my skin and someone stabbing me with a knife. So my brain just assumes that every bit of me is getting my ass kicked. I am in constant pain but the levels vary between a bad, achy flu-feeling (which is what I call a GOOD day) and being slowly crushed to death by a boulder. Unfortunately, I never know what day I will have until I wake up.
Once they hear that, they seem to understand and when I have to bow out of a party or get-together, they no longer feel slighted (also, I tend to give them bottles of wine as an apology so they tend to forgive me faster).
Talking about what is happening to you can be a freeing experience and I have to say that as I learn more about this condition, I feel that it is important to let other people know about it.
Thanks Ebeth for the suggestions. Good description of our pain. Hugs.
Hey Auburnm
I think fibro drives most us to be private/intraverts.I believe i would after explaining the best you can,come on this site and show her/read to her what others that have what you have are going through so she will see that it not just mom but everyone that has fibro have difficulties ..That way if some "opinionated"person makes a remark about you,your daughter wont doubt you but will defend you..Which will help her feel better about mom which is what matters..Then she will feel better about herself..G.B waynebo
I told my daughter yesterday. I had a really bad flare and my legs and hands gave out and I dropped what I was holding and fell to the floor. Scared my daughter and she wanted to call ambulance. So I took the opportunity to explain about the fibro. I don't think she really gets it yet but she seemed to do okay. She has asked a few questions today but is ok. I hope that now she knows this flare will calm down as I know my stress level has been high. My hands and wrists are killing me and nothing has been helping. Hopefully de-stressing will help.