The visit always starts the same: I’m asked to give my pain a number. How bad is your pain today? they ask. On a scale of 1 to 10, 10 being the worst. This is then followed by a laundry list of do you feel this, do you feel that. What I can’t get any of the white coats to understand is that no matter what number I assign to my discomfort, it’s always going to be a function of the pain and the fatigue. Separating the two is impossible, and it doesn’t give an accurate picture either. It hurts everywhere. I’m always tired. When one isn’t so bad, the other is off the charts. Both make it hard for me to function in the world.
I wonder why I am never asked to tell a story, even if the story wanders and lacks the black and white of the one number they wish for. It would still be more helpful to my treatment if I were to show in words how my body has continued to betray me. But the doctors always impose their ideas of order, and there’s nothing orderly about chronic illness. It’s chaos. It’s like the nonsense of a dream where the ends don’t ever meet. And each chronically ill patient lives with their own special brand of chaos—no one’s is the same. I want to scream.
A Millios, from '4 May 2016'
I wonder why I am never asked to tell a story, even if the story wanders and lacks the black and white of the one number they wish for. It would still be more helpful to my treatment if I were to show in words how my body has continued to betray me. But the doctors always impose their ideas of order, and there’s nothing orderly about chronic illness. It’s chaos. It’s like the nonsense of a dream where the ends don’t ever meet. And each chronically ill patient lives with their own special brand of chaos—no one’s is the same. I want to scream.
A Millios, from '4 May 2016'