Reply To: Dealing with family and friends
This is always a huge problem. I hear the words “You look so well” and similar words come to mind that friends and family say all the time while on the inside you feel like s**t! My partner doesn’t get it and calls me lazy and worse words to that effect. This makes me feel worse. There is no explaining I can do that seems to penetrate his brain. When they won’t listen I switch off and just do what ever I can. I feel your frustration. I have yet to find anyone who fully understands CIDP except my Neurologist and the nursing staff that do my infusions. Good luck, I hope the penny drops with your family. Try giving them some reading material on CIDP and see if any of it makes sense to them. Why families go into denial I just don’t know. It is a disease you can’t see or feel and if they could see it they would be more empathetic with you. Good luck!