As a mother, the most painful part of my ‘illness invisibility’ is how it affects my children. When I sat down to think about what to write on this topic (there were so many ideas that came to mind!) I knew I had to write about how my kids don’t know, and can’t see, when something is wrong with me. Will is seven and Miles is four-old enough to be aware of other people’s feelings. Miles asked me the other day as I sat on the couch reading, if I was sad. I laughed and told him, no, I wasn’t sad, I was just focusing on the story I was reading, but I could understand why he might wonder. I was quiet, a little tired and reading a serious story. I pulled him onto my lap and kissed his head. Then I put down my book and followed him to the playroom.
When my blood sugar gets low, I get grouchy. When my blood sugar gets high, I get grouchy. Once when I was low, after I drank my juice and ate my graham cracker, I apologized to my son Will for being short with him. “My blood sugar was low and that makes me grouchy,” I explained. He seemed to listen and didn’t ask any questions but for weeks after, every time I yelled or sighed heavily, Will would ask me if I was low. And I’d answer, with a growl, that no, I was just in a bad mood. So for a while I stopped telling him when I was low, and instead drank my juice and kept it to myself because I didn’t want to be burdened by his questions.
But I began to wonder what it was like for him. What did my being low mean, what did my diabetes mean to him and how, other than watching me test my blood sugar and give my shots, how did he understand my disease?
I read somewhere a story written by a man whose mother had been a type 1 diabetic. He wrote about how hard it had been to live with her mood swings, how he and his brother never knew when she was high or low and how it would affect her mood. He said growing up with her was like walking on eggshells.
Being grouchy when I am low makes my illness visible to my children. I will stop hiding my highs and lows from my children so they can see, all of me.
