JMHO, but no one (especially health care workers)really talks about
the psycho-social effects of this DD. BTW, I TOTALLY get where you are coming from. This disease is quite hard to talk about
espicially because of societal taboos about
body functions, especially excrement. So it can be hard to tell people what the disease is like because of this, and heck, I have those taboos. At one point I thought God MUST be punishing me, to give me this disease...(I'm more on the lines of Elliott in Scrubs TV show).
One thing that I used with my family to help them is the "Spoon Theory". It puts things in ways that are easier to understand. I will leave the linkwww.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
I think because much of our symptoms are away where people can't see them, and we try to hide them too, but we must not be that sick. And there are the silent parts of the disease, like fatigue, to others seems like laziness...but it is not...again, the spoon theory should help.
"The earth laughs in flowers"