I am lucky enough to have a great social support system. I have family and friends who consistently ask how I’m doing. Some even have learned enough information and terms about my syringomyelia to question if my syrinxes have enlarged or how my cerebral spinal fluid flow is doing. Don’t get me wrong, I appreciate this. I do. I know it is an expression that they care, but when I was asked at Thanksgiving dinner about how my pain was doing… I just about lost it.
I know the question wasn’t meant to offend. But when everyone else is discussing their holiday plans, football games and how much pie they’re going to eat, that’s all I wanted to talk about too. I wanted to feel “normal” even if just for those 20 minutes of dinner. I’d spent the morning being chronically ill, preparing my medication regimen, choosing a comfy but “holiday party appropriate” outfit, napping… I wanted to be “normal” at dinner. I could convince myself for 20 minutes… until that question.
I know this an unsolvable problem, and it’s my personal problem. I will never reprimand a friend or family member for asking after my health, but I just wish they knew it wasn’t all I want to talk about. It is a Catch-22. I don’t want them to stop asking because asking means they remember I’m ill. Remember that even though I got dressed up and made a dessert, it likely took all my energy. Remember that if I have to cancel plans last-minute, it’s because I’m too exhausted or in too much pain to function. Remember that the “normal” I can fake for 20 minutes is actually that… fake.