Reply To: Have you forgotten I have CIDP?
These posts have been good for me to read.
No matter what any well meaning person tells you, people treat people with disease differently. Usually from a distance. I don’t tell very many people that I have CIDP, 1. Because of the pity factor that usually doesn’t translate into any real empathy or understanding because most people don’t take the time to educate themselves and frankly I don’t have the energy to be a constant poster boy for CIDP. and 2. Often people disappear rather than get closer.
I have never really been a complainer over the course of my life but with invisible illness it seems that the squeaky wheel gets the oil in the sense that it really has to be drilled into peoples heads to get through to them. The spoon story is a great analogy.
I have to admit that before I got this I didn’t really understand what MS was. And it seems that unless a disease has a famous spokesperson and a sexy name it’s difficult to get on anyone’s radar. It also doesn’t help that it’s 8X more rare than MS.