Disability Visibility: The Super CF Chameleon
Last updated: May 2023
My favorite thing about having cystic fibrosis (CF) is that most often no one can actually tell that I have CF or rather, anything unique about me at all. I look all regular, and I am happy that way. I do not like attention drawn to me in public, and I don’t want people whispering about me or wondering what is “wrong”. I love the luxury of my disability being invisible.
Not feeling seen
I consider myself to be disabled because my body doesn’t work as it should. This makes daily activities a bigger challenge than the average person. Some days, I second guess myself because I don’t fit into the stereotypical looking “disabled person”. I don’t require the use of the wheelchair parking spots, I feel shame about using the larger yet more accessible washroom stalls, I do not have a guide dog, and I don’t appear to need help in any way.
This has presented challenges for me socially, but also in the way that I interpret my disability myself. It isn’t that a person with CF wouldn’t require these things, but it is that personally, I do not need them to participate in society. That makes me feel that my disability sometimes is not seen.
When I would go to my CF clinic for oral glucose tolerance tests, I would require a wheelchair because I was not supposed to walk in between blood tests. One blood test to get a baseline followed by a disgustingly sweet orange drink, then some free time before getting poked again.
The free time was all eyes on me time. You’d think people would expect to see someone using a wheelchair in a hospital, but many looked like they had seen a ghost. Every single person walking by made eye contact with me, especially when I got out of the chair and stood up, it was like I had just performed a miracle.
This past month I was enjoying the warm weather and getting some exercise by testing my new skateboard. Apparently, I need to work on my skills because after fifteen minutes I fractured my foot and sprained my ankle, ouch! I was given a cast and crutches for the next 2 months and I feel like I am back in googley eye land. Everyone has that stare on their face that they want to know what happened. I don’t blame them, I am pretty nosey, but I hate it.
At the same time, it makes me see how kind people are. So many people have jumped at the opportunity to help me upstairs, grab me a chair or hold my bag. Even though people are nosey, they are nosey for the best reasons. Human beings care about each other, believe it or not.
Appreciating the invisibility
It doesn’t make a lot of sense to me how I want to feel seen for having a disability, but I don’t want people to actually SEE me. I think the people who want to listen and try to understand are what I am talking about here. But using mobility items has given me a better appreciation for my luxurious cloak of invisibility. The super CF chameleon!
I believe that in any disability there will be pros and cons when compared to others. I find comfort in asking myself questions such as “What would make me feel seen?” Then applying that to conversations surrounding my illness.
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