I understand my 5-year-old’s frustration that mommy can’t play all the time, but how do I explain to him so that he can understand what I go through some days (which seem to be more days than less these days)? Carol
I’m still learning this too, and a lot of it depends on the severity of your illness as well as your child’s personality. What has worked best for me is to try to put it into the simplest of terms that he is familiar with at the moment. When my son was 3, he was very into cars, so we talked about how cars needed fuel, oil, good tires. At that time I was lacking all of these with my rheumatoid arthritis (energy, well-lubricated joints, and feet that could walk.) Now he is into Batman and I recently saw a post by Rheumatoid Arthritis Guy about Batman.
Sitting at the rheumatologist’s office last week I had Josh look more closely at my hand and I told him how my body was like Gotham City and Batman was there to get the bad guys. Only Batman got confused and started shooting lasers at the good guys.
I showed him some deformities on my hands and said, “See, it’s like mommy has a little Batman inside that is kind of confused what the good guys and the bad guys look like, so he’s crumbling some of the wrong buildings and making the city a mess.” For just a moment he sort of understood.