How My Invisible Disability Isolates Me in Public Settings
My disability makes me isolate myself. Or rather, it makes other people isolate me. Maybe the truth is somewhere in the middle.
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It’s bad enough when I can’t go anywhere, when the pain is so intense that I can’t move and there’s no option that involves me leaving the house, no matter what. But when I can sort of function, I still often need a ride. Driving while sick is a recipe for disaster, not just for me, but for everyone on the roads.
On bad days I need to use a walker with a bench, so I can balance and have a place to sit down. This makes it very difficult to go anywhere with stairs, gravel, cobblestone or severely cracked pavement.
Even on good days I need a place to sit down, so if I don’t have my walker I have to find a seat wherever I can. Which means I often end up on a couch alone, while the rest of the gathering is chatting by the platters of food or standing around on the porch outside.
Sometimes I need a particular kind of seat, one that can support my head and neck and let my back stretch out. I have a reclining folding chair I bring sometimes, but it’s heavy and hard for me to carry, so once I set it up, I can’t move it easily. Which means that I am stuck while everyone else moves away to a more interesting part of the park, or on to another conversation, leaving me wishing I could also flit between groups of people the way I used to, when standing didn’t hurt so much. But now I am planted to my seat, and I watch with longing eyes as the voices move further and further away.
When I don’t have my chair, I have trouble enjoying activities from my place at the table or the folding seats of a venue. Sometimes I have to be “difficult” and request a specific chair in a stranger’s living room, or lay back in the front seat of someone else’s car. But when there’s no good seat for me, I have to seek out an alternative situation, even if it means going outside and laying on the grass.
Which happens sometimes because I need to lie down. This is not code for “I need to take a nap,” or “I can’t handle being around people right now.” It just means I need to be in a reclined position. But it almost always results in isolation.
I explain this repeatedly to my friends, but it’s so instinctive for people to stand around during parties, wander around a park, stay seated at a table, and to leave people to themselves when they’re resting. No matter how much I try to explain or ask for company, I end up lonely at social occasions, wishing to be with the friends I so rarely see at a place that wasn’t easy for me to get to, but left alone instead. Because the world is not accessible, and I’m in too much pain to stand for it.
Getty image by Maryna Patzen.
I am an anthropologist and an adventurer, learning how to be those things even while my body is fighting me every step of the way. Help support my writing at: https://ko-fi.com/Y8Y18CD9
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