Im so sorry youre having to deal with TOS issues.
You are so right, it does suck, it sucks the life right out of you to deal with pain day and night and yet look 'just fine' so people have no clue your are suffereing unless you complain--and who WANTS to be known as a whiner?
Its so hard.
Please know you are worth being treated well, you are worth taking good care of yourself. You deserve to be heard and respected for your questions and concerns about TOS.
It helps me to find ways to be good to myself, because others arent going to fix this for me. Take a bath, have the chocolate, read the book, relax, and Ive learned I have to ask for help-as much as that sucks, I cant go through life with this kind of pain andb do everything without any help at all. Id wind up a drug addicted hot mess if I kept trying to do that.
Stick up for yourself-anyone having to walk in your shoes would be more understanding.
Gentle hugs!!