How I Handle Questions About My Illnesses

There are many days I go out without my cane or braces. There are two reasons for that, maybe I’m having a decent pain day or because I get tired of the questions and stares I get regarding my mobility aid. I had the same issue with my NG tube, although I couldn’t exactly chose not to use it on days when I was feeling insecure.

Despite what many people think, I don’t use the cane for sympathy or attention, I use it because it really does help with my balance and pain. Most people don’t acknowledge that I am always in pain, and when I’m in a happy smiling mood, I can understand why it would make sense for them to not think I’m in pain. Despite my smile or makeup my pain is always there but I’ve adjusted to the point where unless the pain gets so bad I’m curled up in a ball or crying, I can usually manage to keep a straight face.

Even now though I could describe all the pain in my body at different parts, between the throbbing in my joints, the pressure building up behind my eyes, my stomach with a stabbing type pain, the strain in my back, and the feeling of bricks on my shoulders, These are everyday pains for me that I have adjusted with. Admittedly the pain gets easier to deal with when I wear my braces on my wrist or hip but despite my best ability to seem confident in myself and in the things I use to make my life easier, there are still days when I would give anything to be pain free and feel normal.

Especially when people approach me with questions or comments. For the most part they are people my age who don’t understand why at a young age I have these issues, very seldom do older adults make any sort of comment though some do side eye, others include small children who often didn’t understand why I had something sticking out of my nose. The curiosity of children I understand, though the hushing of their parents makes me feel like I was something they shouldn’t look. I understand because it’s impolite to stare and personally eye contact makes me anxious but they’re children, they don’t know any better.

The comments that are usually the most troublesome come from my peers and people my own age, some are polite and just out of concern such as, “Did you hurt yourself?”, others are not as polite such as “What’s up with that cane, crip?” One of the things I’ve heard while at the college. Or having people ask what’s on my side and then I will explain my ileostomy and they just go “Ew gross.” With my NG tube people tended to go about that a lot more rudely, instead of just politely asking what is the tube in my nose, it was often with a different tone and more often like, “What’s up with that thing sticking out on your face?”

I never really put much thought into how the questions were asked or why, I simply focused on educating people, “Oh no, I didn’t hurt myself. I have a syndrome that causes lots of joint pain and subluxations and dislocations.” “My ostomy isn’t gross, it’s actually helped me a lot. Many people have ostomies, and the stigma can be very hurtful to everyone with ostomies.” “My NG tube is a nasal-gastric tube, it’s inserted through my nose and into my stomach, it’s how I get nutrition.” “My braces are used to stabilize my joints so that I can do more with less pain.”

I always focused on education, regardless of if the comment was cruel, although there were times I would’ve liked to snap.

With some people you can sense the hesitation when they ask, like they know they don’t want to offend you but they are curious, which is understandable because I think it is in human nature to be curious about the world and people around you. While the comments of some can be very frustrating, and the stares can be off putting, I am constantly working to overcome my own insecurity and the ableism of others so that I can try to live a more comfortable life for myself.

Regardless of the questions asked, I will always do my best to educate others and spread awareness for the sake of everyone else out there who is afraid to pick up a cane to help themselves or open up about their illness or deal with these questions and don’t want to talk about them.

 

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