Tuesday, March 2, 2021

What No One Tells You About Arthritis: Introducing Me

Welcome to Musings of an Arthritic Artist


This is my first post, so I'll begin with an introduction to me and what this blog is about. 


I hadn't intended to begin this blog during Autoimmune Disease Awareness Month, but here we are.


Let's get straight into the post!


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


My name is Alexandria (Lexi, for short), and I was diagnosed with polyarticular-RF negative Juvenile Idiopathic Arthritis before I was even a year old. What does this mean?

It means I have arthritis in five or more joints. Every moveable joint, actually. Wrists, knees, ankles, jaw, hips, spine, elbows, shoulders, cervical spine (neck)--you name it, and I will most likely say yes. If I named them all, we'd be here all day. I'm sure it sounds depressing, and sometimes it can be, but that's just life. Everyone has their ups and downs, and I'm no exception.

There are at least three different types of Juvenile Arthritis, the main ones being polyarticular (5+ joints), oligoarticular (4 or less joints; used to be called pauciarticular when I was a child), and systemic (joints and organs; considered an autoinflammatory disease), sometimes called Still's disease.

If I were to say I have arthritis to anyone in the streets, I'd be met with comments like, "You can't have arthritis," and "Arthritis is for old people." 

Even though this isn't a blog about juvenile arthritis, I do wish to say something about it. 

"Arthritis isn't just for old people."

I have had JIA pretty much since I was born, and I will have it for the rest of my life. I won't "grow out of it." To make it seem as if arthritis is just for old people makes it feel as if my pain isn't valid because I'm "too young" to have arthritis, even if these comments aren't said maliciously. I wish my body got the memo society seemed to.

Unfortunately, there is this ignorant stigma surrounding arthritis. If you check out books about arthritis from the library, the chances are very high that you'll mostly see seniors in the photos. However, there is a huge difference between Rheumatoid Arthritis, Juvenile Arthritis, and Osteoarthritis, the latter being more common in seniors. 

Rheumatoid Arthritis and Juvenile Idiopathic Arthritis are autoimmune diseases, which means the immune systems of people who have one (or quite a few in many cases) are more hyperactive and sensitive, which sometimes leads to their own bodies attacking themselves. 

Osteoarthritis however, is joint pain that stems from the overuse of joints, hence why it's more commonly seen in the elderly. This doesn't mean the pain or damage isn't severe. I'm sure it's very painful, and sometimes osteoarthritis leads to joint replacements. This also doesn't mean that children cannot have osteoarthritis. They can. The main difference between this type and Rheumatoid or Juvenile Arthritis is that Osteoarthritis is not autoimmune. 

If you look up Rheumatoid Arthritis on the internet, you'll see that it's more common in middle-aged women, though the earliest onset could be early twenties, or even late teens, particularly 18 and older. 

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I'm not writing this post to speak about Rheumatoid Arthritis. While Juvenile Idiopathic Arthritis is similar, it isn't the same. Juvenile Arthritis is arthritis that occurs under sixteen years of age. There are sometimes outliers who get it at seventeen, but it's not as common.

On another note, I don't want to make it seem as if this blog is about autoimmune disease and chronic illness. At its core, it's not. It is about my life, my interests, and my musings. It isn't about autoimmune disease, but it is a huge part of my life, which is why I've mentioned it. I wish to enlighten others and introduce myself in this post.

Musings of an Arthritic Artist is a blog about the Arts--including reading and books--told from the perspective of a teenage girl living with juvenile arthritis. 

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If you were to pass by me on the street, you'd see a normal, walking, fully functional, "able-bodied" teenage girl who hates being the center of attention and is constantly smiling. You wouldn't see the disabled plates on my family's vehicle that were government-issued in my name when I was a child. You wouldn't feel or know about the burning pain in my wrist I got from writing or drawing too much. You wouldn't feel the soreness in my legs, ankles, and hips from standing in a line. You wouldn’t feel the pain in my jaw from chewing too much. You wouldn't hear the sound of my joints cracking when I move them. You wouldn't hear the crinkling noise in my knees from cartilage damage.

I identify as disabled because I am, even though I don't have a wheelchair or mobility aids to "prove it" to society, though I don't need to prove anything to everyday passersby. I have been legally disabled since I was six years old, just before my seventh birthday. I have the official documentation and plates to prove it, if necessary. If I wasn't disabled, I wouldn't want to identify as such. 

Who would want to put a spotlight on themselves and basically say, "My body isn't normal. I'm physically defective. I have an immune system that is simultaneously better and worse than an average human's." Who would want to identify as a person who almost always has some pain, no matter how small? If I were non-disabled, I wouldn't. Even if I did, I'd choose something society would actually believe. Juvenile arthritis is on very few people's radars because arthritis is an "elderly" problem. 

Even though living with juvenile arthritis stinks, I choose not to dwell on it. Why bother? Wishing I didn't have an autoimmune condition isn't going to change my life. Stressing about my health isn't going to make my arthritis better. Instead, it'll most likely make it worse.

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Even though my immune system's response isn't normal, I am a normal teenage girl. I have interests and hobbies. I watch television and read books. I have book boyfriends and listen to boy bands (which I'm listening to while writing this). Sometimes, I even listen to classical, pop, alternative, rock, country, and pop-punk. I watch hockey and am a self-taught dancer. I'm an artist, photographer, and writer. 

Even though I have arthritis, I refuse to let it 100% define me. As much as it impacts my life, I will not let it stop me from doing the things I love. I won't let it stop my goal of becoming an author-illustrator. I will continue being an artist, even if I have setbacks. That's what this blog is about. It's about my life as a growing teenage artist with physical limitations. 

I'm going to be posting every Tuesday and Thursday.

Welcome to my space! Welcome to Musings of an Arthritic Artist!


See you Thursday, 


Lexi K🖌

9 comments:

  1. OMG, YES IT'S SUPER ANNOYING BEING TOLD "YOU'RE TOO YOUNG TO BE SICK" OR "YOU'RE TOO YOUNG TO BE HAVING THOSE TYPES OF PROBLEMS". I HAVE LUPUS, SO I FEEL YOU, SOME DAYS JUST SUCK, BUT THAT'S LIFE! MAYBE ONE DAY THE WORLD WILL MORE INCLUSIVE FOR "Invisibly" disabled. I'm typing this on my phone, not sure why my letters went from big to small haha. Looking forward to your posts!

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    1. Thank you so much for reading! I'm glad you enjoyed the post! I hope to do many posts similar to this in the future to do what I can to dispel the "you're too young for that illness" myth, even if I only begin with a small group of people. I wish you well and I hope you are staying safe and healthy.

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  2. Congratulations on starting your Blog, Lexi! I really enjoyed reading your first entry. I hope you have a lot of fun writing many more. I love you, 'Z'!!!!

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    1. Thank you! I'm glad you enjoyed it. I love you, too! <3

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  3. It was interesting to hear your perspective on juvenile arthritis, and how the whole "you're too young for that illness" is just what people automatically think when they see an "invisibly disabled" person - it's not always true. I personally don't like the word 'disabled'; it makes me uncomfortable to call someone that because their needs are different. However, since you're someone who truly knows what it's like to be different in a way no one else can see at first glance, it's completely fair that you can address yourself in whatever way you like. I wish you luck with your blog! :)

    ~M

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    1. Thank you so much for reading my blog, and I am so glad you seemed to enjoy it. For me, being disabled is a part of my identity, as I've essentially been disabled my whole life. Thank you for your kind words, and I hope you are having a wonderful day =)

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  4. OMG I relate to this SO much. I have osteoporosis and rheumatoid, I've had it since I was born! Last time I had an appt, they told me at 19 my bones were the age of a 60 year old. It broke me, and I still deal with the stigma at work that Im young and look fine so a bunch of older people put all the work of me. So I have to be SUPER assertive, which gives me the title of 'b*tch'
    If you have time, feel free to check out my blog as well <3 https://paperwitches.blogspot.com

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    1. Hi! I'm not glad that you deal with similar health issues, though I'm glad my post resonated with you, as that's one of the reasons why I write about my disability so much: in the hopes that it can make other people with similar issues feel less alone and be able to relate with somebody. I hope you are having a great day, and I definitely will check your blog out! Thank you <3

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