Hi broadband,
What fimi says is true......
except that what is also true is that even people who do truly care about you do very often do not understand at all, and sometimes will give you a hard time or will have negative thoughts about it, thinking that you are exaggerating or malingering, or something of the kind. Even those who love us dearly will lose patience with us, will have a hard time believing that we feel the way we say we do when the doctors cannot find a specific cause or disease, and when on the outside we look normal. So it's not really true that those who care will understand.
That is what is so difficult. You feel as though if someone cares, they should get it, but because they have no frame of reference to put this into their own experience, they don't. And they cannot, really. Without experiencing some things it is impossible to understand, and without that understanding it is hard to accept that it is true when another person tells you something that doesn't have direct evidence you can see.
My approach is that when I am dealing with people who are not close to me, I just tell them the facts and if they refuse to accept them I have less interaction with those people. I don't get angry (I figure it's not their fault if they can't grasp it) but at the same time I am not going to let them give me a hard time. Similarly, I don't permit myself to give myself a hard time! It's not my fault or my doing, either. And the more you stress or feel bad about not doing what you planned or what someone else wants, the worse you will feel physically.....you will actually make yourself sicker.
With people who are truly close to me, I explain as much as I can, answer all their questions, and see what they can accept. Some truly accept it all, others won't, even if they love you. Those are the hardest to deal with. I have ended close relationships because the other person refused to simply believe what I was telling them, and gave me a hard time for not being able to do what they wanted when they wanted. Those relationships turn toxic for you if you don't remove them from your life, as hard as that may be.
For yourself, focus on your own program of self care and your own treatment for yourself, finding out what works the best. Use your energy to work on feeling better rather than beating yourself up for what you cannot do, and you will find in time that you will be able to do a lot more.
For suggestions on how to get started on your own best personalized management plan, see my post:
I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...
www.fibromyalgiaforums.org