Amanda - Oct 29th, 2005 4:06 PM
[ Original Post ]

Why is it that family members do not understand this disorder. And people look at you like there is nothing wrong with and think its all in your head. Ive had this since 1991 and it has gotten worse over the years and i try hard not to complain about cus they just look at you and say you look good but inside your hurting really bad.i wish they would understand it better and what really hurts is some dont belive. i was also wondering if my 3 childern can get it.

Comment


 

JenV - Mar 13th, 2007 2:33 AM

Amanda
They dont understand for the reasons you stated...you look fine. I have had this since 1993...my son is now 14 and is having a hard time, I am a single mom...He said he would read about it...as long as it wasnt too long..lol....Try not to spend to much time trying to convince the "non believers" it creates stress and that is the worst thing you can do for yourself. Gather info and read to the normals letter in this forum...I am printing it out for my son to read...hang in there


AnnaS - Mar 17th, 2007 9:18 AM

Amanda,
I hope I can help you a little with my answer. My mom has had fibro all my life and I am 39 now. She went through this when there wasn't a name on the symtoms, and no certain diagnosis. She was questioned by the doctors even having a problem, but we knew about the back pains but not the extent of the pains.
Then it was officially named, and it became easier for my mum when it at least was recognised by the doctors.
But as a familly member it is difficult to fully understand the pain but you are aware of the limitiations it causes. Over time I have learnt to see the signs and can tell by looking at my moms body language if it is a good or bad day.
She is very stubborn, and does not always admit to having pain, so it sort of becomes a "normal" state.
But we do know she is in pain, basically all the time regardless if she looks fine, or not. But being a child/teenager growing up with this you also balance being a child. And children don't always understand because there is so much else going on in a childs life.
My mum always have said that it helped her to be stubborn, and let go of old "musts". Give yourself acceptance that you don't have to do everything the same way as before, and try and get the same acceptance from your familly.