The Unexpected Consequences of Pretending to be “Fine”
Those who live with chronic pain are masters of disguise — we smile as our bodies scream, fabricate energy when the real stuff is depleted, and neglect our needs so as not to inconvenience others. We must do this — contort ourselves into the shape of “normal” — because otherwise, our expressions of pain would overshadow and disrupt every interaction. Pretending to be “fine” is a survival tactic. But what happens if we get too good at pretending?
I don't announce it
Unless I’m having a bad flare, I keep my pain to myself most of the time, but that doesn’t mean it isn’t there. Whether I’m at the dinner table with my family or watching a movie with a friend, my pain is my most loyal companion. My hips burn when I sit and my spine threatens to splinter when I stand, but I don’t announce it to the room — that would be like announcing “it is now morning,” every morning. Plus, people get uncomfortable when I express pain that they can’t provide a solution to. Pretending to be “fine” is the path of least resistance.
The disconnect between my pain and the perception of it
But lately I’ve been thinking about what message it sends to others when I pretend to be “fine,” and the possible consequences. Although I know that I’m in pain and constantly tending to my body’s demands, no one else can see that. Pretending to be “fine” creates a disconnect between my true experience of pain and others’ perception of my pain. The consequence is that the people in my life may not be aware of how greatly my illness affects me and may not support me as much as I wish they did. Am I doing a disservice to myself by acting “fine”?
Should I start declaring every twinge and ache I feel? Should I grimace and groan instead of masking my discomfort? Should I dramatically collapse onto the nearest surface every time I feel a wave of fatigue? If I did, maybe the people around me would better understand what I go through. Maybe I would feel more supported and validated and I wouldn’t feel like I'm leading a double life.
Just because my illness is invisible doesn't mean it's not there
This is one of those times where I hate having an invisible illness. I wish the degree to which others understood my pain didn’t depend entirely on my portrayal of it. But people can’t understand things they cannot see. I hope by reading this article, the people in my life will understand that my illness affects me at all times, regardless of how convincing my act is.
Do you use the word disability to describe your AS?