When You Are Judged for Having 'Strong Moments' in Public With an Invisible Illness
We saw the bus pull up and impulsively I said, “Let’s run for it!” So we ran. My daughter was waving her arms above her head in her excitement and I was following close behind. As we climbed aboard we were both happy we lucked out and caught a double decker bus. They are my daughter’s favourite, but they aren’t very common. Very quickly though my smile faded because as I stepped aboard, the bus driver laughed and said, “Makes me wonder why you need that cane.”
It was like a gut punch. I am normally very self conscious about how my disability looks to the outside world because I know I don’t fit the normal stereotype of a person with mobility issues. Much of the time I look “normal” to a casual observer. But while we were running to the bus, I was having a strong moment, and I had forgotten what that must look like to others. The bus driver’s comment brought a feeling of immediate shame and embarrassment for not appearing sick enough.
Thankfully I have a well-rehearsed answer to questions like this, so I turned and told him, “I have a neuromuscular condition that causes my muscles to crap out unexpectedly.” Then I walked past him and sat down. Normally we would go up to the top deck, but I was still reeling from the shock of his judgment and didn’t want to give more cause for him to question me, so I told my daughter we would sit downstairs today.
As I sat there seething with rage, I struggled to pinpoint exactly why I was so upset. As the rest of the evening wore on it became clearer.
No one has the right to question my use of a cane. True, in that moment, he may have wondered why I needed it, but that’s because he saw me in one of my best and strongest moments.
He doesn’t see that I can’t walk up stairs, and instead have to crawl.
He doesn’t see the days I can hardly walk, because those days I’m not on his bus at all.
Those days I stay in my house.
He doesn’t see that this illness affects more than just my legs. Very few people see the times I struggle to eat, have difficulty talking, or labour to breathe. My whole life is spent finding a balance between the needs of my body and the needs of my family. Sometimes my daughter misses out on opportunities because my body isn’t cooperating. This time though, I was glad to be able to cater to her wishes.
I wish I could have told him all this, but the interaction was fleeting and I was flustered. I am glad I had the presence of mind to provide a tiny bit of information, a snippet of education, so that the next time he sees someone with an assistive device they don’t “seem” to need, he might wonder what kind of invisible illness they have, rather than implying they don’t have one at all.
Follow this journey on 8 to 10 Jellybeans
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