Whether you take mass transit, work at a crowded office, or attend conferences like I have recently, managing in a crowd with RA is challenge. This may be one more mission impossible, should we choose to accept it…
It’s hard to explain RA to anyone who hasn’t lived it. Have you ever had a sprained ankle or tennis elbow or carpel tunnel? Maybe a jammed finger or a broken toe? And then used it anyway? Living with RA is kind of like that – only for many of us, every joint is affected.
If I try to tell someone about this, I usually have to focus just as much on ignoring the eye-roll as I do on ignoring the pain. Just because I don’t say anything doesn’t mean I don’t notice the skepticism. And we can tell when you think we are exaggerating. After conversations with thousands of RA patients, I can tell you that we are almost always doing the opposite.
We can also tell when people do believe and care – like several beautiful souls I’ve met who said, “Tell me more about RA.” There was even a Mayo employee met me saying, with, “Well, everyone has arthritis.” After I explained the difference between “arthritis” and Rheumatoid Disease (which almost always has inflammatory arthritis as one of the symptoms), he said, “Oh! I’m sorry. I didn’t know.” A good step.
If we try to explain that meds don’t help much, then we recognize skepticism, even from doctors. “Are you sure about your diagnosis? You don’t look like you have RA…” Yes.
Sometimes, I try to give an illustration about how hard it is to function in a group of healthy people. Sometimes people with a disability, can feel invisible. Other times it’s hard because the disability is invisible. Like most things, this makes me laugh now that time has passed.
Real-life example 1: Bio break
At break time, a hundred women want to use the ladies room. I dread the walk. Women fly around me in the hallway. By the time I get there, the line is out the door. I wait in the line until it reaches the door. I ask, “Maybe I’ll sit in this chair until it’s my turn. Can I keep my place in line?” No one answers. I try to move the chair out from the counter. The chair falls over & I’m down there with it, trying to figure it out. No one moves to help.
Real example 2: Elevator at the airport
Have you noticed the elevator is always further away than the escalator? We press the button & wait between sets of elevators. When a door opens, 10 people rush in before I can take 2 steps in that direction. Can I also say that I’m terrified of elevator doors now – because I‘m not able rush passed them or push hard to make them re-open? So if we’re riding elevators together, could I please go through the doors first?
How do you do with crowd management?
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