I have so many different diagnoses that I can never fully answer when the docs ask "what hurts", because it all does. I have been misdiagnosed and mistreated for my entire life. Told that I have this or that, only to go to yet another specialist for them to say 'oh no you have this'!

I was recently diagnosed with a rare genetic disorder. It would totally explain most of my life-long issues. I have mixed emotions. I am so glad to know what the deal is with my crazy body, where the pain and symptoms comes from, and to finally be treated correctly. I am sad for several reasons, the first being that I don't have long to live according to the doctors. I am having a surgery soon that may help.

The largest part of my sadness and the root of my post, is how do you deal with family and friends who appear not to believe you? I've been called a hypochondriac by doctors, so I understand why someone would think that. But my family? My friends? Even my children and spouse??? Yes, when I would be diagnosed with say MS, I would share with them...but then the next specialist would say it is not MS it is lupus. So I share that. I don't want or need sympathy, but I do need someone to CARE!

So, I've got this rare genetic disease, and must have surgery. Okay, I share this too. But the reactions and total lack of empathy has floored me! When I was finally approved for surgery, my husband got angry with me. When I asked why he was so upset, he said that he never thought it would happen so he wasn't sure he could take off work to be there for me???? One of my kids has said they won't help me at all during my hospitalization and recovery...too busy was the excuse. Family members haven't even bothered to ask if there is anything they can do to help.

I am the type of person who helps everyone, babysits, cooks, etc... But when I am in need, people don't want to help because I've cried wolf too often? I don't know how to handle this....