I can relate so much to the sense of being robbed - it's a really challenging process to adjust to and accept the things that these kinds of conditions take from us. I don't think anyone can master that fully!
I worked with a therapist last year who walked me through what he called "radical acceptance". Accepting the pain, accepting the limitations, and knowing that as unpleasant as these things are, they aren't a threat. He got me to sit with my pain and observe it until it didn't trigger a stress response, and to try not to fight when I couldn't do the things that I would have done before. To begin with, it felt really counterintuitive, but after a while I think it really helped.
There have been so many discussions here on how difficult it is when loved ones don't comprehend what we experience. You will always find understanding ears in this forum!