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Old 07-15-2007, 12:08 PM   #1
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How do you explain FM to your friends and family?

I was just diagnosed with FM. How do you explain it to your friends and family?
For years I've complained of constant headache neck ache and fatigue...and nobody really understands just how bad it is.. They don't understand that I can't just take a Tylenol or Advil and then be all better, or take a nap and feel less tired.
Now that I havea name for this.. I am wondering how to tell people. When I tell them I have Fm, they are going to ask... what is it? ...what do you tell people?

stac8454

 
Old 07-16-2007, 06:32 AM   #2
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Re: How do you explain FM to your friends and family?

welcome stac,
trying to explain fibro is like explaining why there is a universe. too much for anyone to absorb. so i don't go there. it is hard enough for me. for anyone near me all they have to do is look at me to know. i don't say out loud when i am in pain. i simply say, sorry i am not up to that today. no explaining.
fibro has so many aspects it will overwhelm them.
so, i say, it is an immune disorder that slows me down a bit. i tried in the beginning to "explain" it to those closest. unless you have it you simply will not understand. and we don't want them to "understand". empathy and space to change plans, this we do need for sure. the freedom to cancel at the last minute without feeling guilty or having a head trip laid on.
there is literature you can give your fam/friends if you wish. some of it here on healthboards at the top.
in the end tho it is we who have it who must live it, and no one is the same so understanding and explaining is almost impossible.
when asked how i am i have several answers. from perfect to almost perfect. never do i say i feel horrid.
the headaches are rough. what does your doc say about them?
peace,
bluelakelady

 
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Old 07-16-2007, 09:32 AM   #3
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Re: How do you explain FM to your friends and family?

Hi,

I was diagnosed October 07. The only people who knew were my immediately family and my supervisor at work. As for my family members, I sent them to a few websites which would definately explain it better than I could. I also did the same for my supervisor and we have talks every now and then to catch up on how I'm feeling since it does affect my work schedule.

As for a few close co-workers, I sent them all an email with an explanation as to why my hours were a little wacky and that I wanted them to know why I might appear to not be feeling so well. I also supplied them w/ an internet link to a Fibro sight.

It is very difficult to explain and that's the only way I knew how. Some people might think that emailing and using the internet is sort of cold and impersonal but I to believe its' a valuable tool in some cases such as this. I could never explain it in a way that would help people understand that it's way more than just being tired and sore. I also have friends that I only see every few months or so that I have not told. I don't really feel the need to unless they bring something up first. They are active and like to hike, etc so it may have to come up this fall if they ask me to go along. Sometimes it's just not really necessary to tell everybody, every little detail. It just keeps it simple plus I don't like pity parties. I just like to keep things to myself sometimes but that's just me.

Just do what feels comforatable and right for you. Good Luck!

 
Old 07-16-2007, 10:09 AM   #4
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Re: How do you explain FM to your friends and family?

well said!!!
i think your idea to email is perfection. gives you time to really choose your words, something we fibros have trouble with often. especially during anything we feel stressful about, like telling others we have new and everchanging limitations.
peace,
bluelakelady

 
Old 07-16-2007, 02:02 PM   #5
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Re: How do you explain FM to your friends and family?

I was wondering this as well. I haven't been diagnosed yet so it is hard to explain what I am going through without a name. So, I usually keep to myself about it, but if and when I get diagnosed I don't know how I will explain it then either, but this helped.

I think using the internet and email is a good idea. I could never explain every detail of what I am going through to someone who can't understand it.

This helped though, thanks!

 
Old 07-17-2007, 06:19 AM   #6
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Re: How do you explain FM to your friends and family?

welcome,
keep it simple. fibro is not simple so finding the way is not easy. if you have it you will find the right words and medium to express to those you want the current status of your health. i hope you do not have it.
peace,
bluelakelady

 
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