Bless your heart...I have been where you are and what happened to make them understand is making them WATCH me take my scripts and i took them to doctors appts. Just because you don't look sick doesn't mean you're not. I started taking pictures of my leg and it freaked people out when they saw how swollen it gets during a flare. Now I have huge knots that come out on my skin right before a flare...they are much better after living with me like this for 2 years. I used to have 2 jobs and dedicated my as an autism mentor and I had to give it up for this stupid disorder, but I am so blessed that my husband has finally started to understand. My mother turned out to be my greatest alli...she went to all my neuro appts with me and spoke up for me.
So hang in there and in the meantime here is a great site for you
http://www.butyoudontlooksick.com/