Family & friends don't understand

Comment

I'm a New Member Comment by PsyberTech on May 13, 2013 at 7:38am

Ah  4000 character limit...

Here is a link to the entire letter. LINK

Many thanks to Patricia Dixon FaceBook Fibromyalgia Network 04-25-2013 who helped me and so many others with one simple letter that says everything I needed to say but never made it out of the FybroFog.

 

*hugs*

 

 

I'm a New Member Comment by PsyberTech on May 13, 2013 at 7:30am

Within minutes of joining, I found this group first.  I am sick of friends and family not understanding too.  Either I am screaming for help, or completely a wreck in tears on the floor before I am taken seriously. I have been living with diagnosed FM for over a 10 years too...  :)  It really helped me when I sent out a letter to everyone that a friend wrote for her friends and family.  She says it all for me...

Here is the letter written to explain to family and friends what it's like to have fibromyalgia. It won't work miracles: it's hard to understand our illness from the outside looking in. But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own. Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need. The best time to do that is when you are not upset!

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes. I can't control how often I feel good or when I'm going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I've seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn't help over half the people who tried them. No matter how happy the people in the pictures look, there's still no miracle drug available.

(continued)

 

Comment by Tracie on April 28, 2013 at 5:04pm

Maybe this will help. http://www.butyoudontlooksick.com/wpress/articles/written-by-christ...

Comment by Becky on April 26, 2013 at 6:45am

I am so tired of my husband and older daughter not stepping up and helping me unless I ask and ask and ask. Are they so wrapped up in their own lives that they do not observe me struggling or even if they dont see that to help anyway? I am so tired also of them telling me that they told me something already and they get mad and huff off leaving me to wonder what the hell just happened! I need something I can write out and give to them so maybe they will then be more compassionate towards me. Does anyone have any thoughts that would help me with this?

Comment by ☈attled☮ on February 12, 2013 at 6:17pm

mom and I are going back and forth on ways to get things done without my having to drive long distance through the mountains to help with this errand and I thought we had resolved it she even said she ordered a bd gift for me and to sendher paperwork we discussed we have til end of month, so when I called to tell her I had the papers it got heated she was angry and could not understand why I refused to drive the car that far in the first place, Ib/c I did it last yr, see it almost killed me last yr that's how I know not good to try again

the next message was if you cannot cooperative and help me then I don't help you, cancelling the gift. OK, so this paperwork is some legal and needs doing by month end. she's 9 hrs away and I am not able to drive the errand she's asking and she doesn't want to do the thing I suggested so IDK what to do when feeling pushed or attacked knowing you are making best possible choices, safest and living best you can, what can you do but take what comes in my case anyway....

Comment by Callie on January 14, 2013 at 10:43am

Wow im a pretty bold person and I would have had a few words to say n ur defense. Just because we look normal as they say doesn't mean we r. I can bearly move today everything hurts so much. I got a pamphlet from my dr and gave everyone of my family members a copy. Its hard to get people to understand. Which is y I no longer have any friends cause I dont need that aggravation. Big gentle hug for u.

Comment by elizabeth on January 14, 2013 at 1:17am

I was told if u only exercise and lose wt u will get better but i have cfs as well and it really effects my life.

Comment by Therene on January 7, 2013 at 7:01am

This past Thanksgiving I had a family member look me square in the eyes and say "oh it's a phase you'll get over it." also my step father and sister doesn't fully understand what I'm going through nor will they take the time to learn about it.