Do you downplay your chronic illness?
I wondered recently if I downplay my illness. A friend said she thinks it’s easy to downplay chronic illness because “stating it how it is can just sound ridiculously dramatic.” She’s so right!
This isn’t an issue of trying to avoid the stigma of chronic illness and disability–though it easily could be. It’s an issue of feeling as if I couldn’t possibly be believed if I told people just how bad it is.
What would you say if I told you that during this particular MS exacerbation my cognitive issues are so bad they remind me of my grandmother and great-grandmother when they had Alzheimer’s? What if I told you that I can walk less than 100 feet and that I have to use a cane and lean on a wall to do even that? That often my hands shake so much I can’t write or type? And if I told you I spent all of yesterday in bed, physically exhausted, just from going to the doctor the day before? Does that sound real to you or does that sound like someone exaggerating?
Here’s a reason why I might downplay all of this: I tell people I have multiple sclerosis and they don’t realize what it means. They think I’m sick, like you’re sick, that I’m sick now and will be well soon. They don’t understand there is no well soon. They don’t understand this is permanent.
Usually I look for the happy medium. Should I explain more? Better? Is there a way to be understood? In my experience, no, there isn’t. The people who want to understand will listen and read. The people who don’t will forget they’ve even been told. That’s all there is to it. So I’m learning to be grateful for those who take the time and to not let the others bother me.