To Be or Not To Be Defined by Disability: What I've Learned About Living with a Chronic Illness

Welcome back to Musings of an Arthritic Artist!

Today I'm going to be discussing how disability shapes some people's lives, mine in particular. I know that the title could be very confusing to many people, but I will explain this very early on in this post. 

Let's get into the post!

King, Alexandria. Musings of an Arthritic Artist. 2021.

I am going to be giving two definitions by what I mean as 'defined by disability.'

A common thing you'll hear is that 'a person is not defined by their disability.' In the societal sense, I agree. I agree that a person should be seen as a person and not their disability. 

However, in the personality sense, a disabled person can be somewhat defined by their disability depending on their situation. 

I'd be lying if I said that having arthritis/chronic illness/a disability hasn't shaped my personality. For some disabled people, it doesn't. For some people with chronic illnesses, it hasn't shaped them as much. That isn't to say it hasn't affected them, this has nothing to do with that.

Some people live most of their lives a certain way. Then, they become ill or disabled, and are forced to see life through a different lens, but this lens is different from the lenses of the people who were born with conditions and who ended up disabled early in their lives.

As I've mentioned numerous times, I was diagnosed with juvenile idiopathic arthritis as a baby. Life with pain is the only life I've ever known. I don't know what it's like to go through life without pain and without issues of some kind. I don't know what it's like to live a life where my immune system works like a 'normal' human being's. The only life I've ever lived is the one I'm living right now. The chronically ill lens is the only lens I've physically gone through.

I often wonder how my life would've changed if I grew up healthy and 'normal.' Many people with chronic illnesses get diagnosed with them later in life. Those people tend to mourn the life they had before becoming sick. I don't have that. I don't know a life without pain. I know what being painless feels like, but these two sentiments aren't interchangeable, and don't mean the same thing. 

I didn't live my life without pain long enough as a child to feel 'normal' or have what most people would consider a 'normal life.' To me, normal is subjective, but by normal I mean that a lot of times society sees children as these carefree people who have no worries. 

As a child, that wasn't me. I had a lot of worries as a child. I stressed about how slow I ate, how underweight I was, how much pain I was in, and how quickly I always got setback on my schoolwork. I've always worried about damaging my wrists by drawing. 

I didn't have playmates growing up, nor did I really have any friends. I spent most of my childhood inside, but it was far from depressing or boring. I've always grown up in my little secluded bubble. 

I've described this as mourning a life you've never had. I wasn't aware that this was an actual thing until I looked it up recently.

A lot of people don't realize certain things unless they've experienced it somehow. It isn't because they don't try. You can't know something you've never experienced or learned.

When I say that I mourn a life I never had/wonder about what would've happened if I grew up without these concerns, I don't mean that I would change anything in my life. I wouldn't. As much as it's physically and emotionally taxing, I wouldn't change my life. This life has shown me how much my family loves me. It's taught me to appreciate the little things. I was aware of more things as a child than a lot of people are, even as adults. I wouldn't trade my life for the world. I wouldn't trade my life for one that's 'perfect,' no matter the struggles. My life already is perfect. 

Because I've experienced what I have, I take a lot of things into consideration that most people wouldn't. Living the life I have has given me the chance to have this blog--to discuss the things I do. So I wouldn't change it. I've learned that growing up with a chronic illness makes you see the world differently.

You see it for everything it is, sometimes even the things it could be. It's not easy to describe. It's complex and difficult. It's made me appreciate the small things. I feel grateful whenever I have a good day. The things that most people take for granted are things I've thought about. Numerous times. 

At the end of the day, life is a roller coaster and sometimes you just have to enjoy the ride and see where it leads you. 

That's it for this post! I hope you enjoyed it! 

See you Thursday, 

Lexi K🖌