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Why Juvenile Arthritis Makes Me Want to Be Part of Ariel's World

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The water is the only place I don’t feel broken. In fact, I’m the opposite of Ariel from the Little Mermaid — she wanted to be part of our world, but it’s in her world I feel more at home. As I dive into the water and begin to swim, the pain dissipates and my worries leave me.

It’s because of the water that the disease that compromises my immune system and ravages my joints was kept at bay during my childhood — likely for several years. Sure, I noticed changes as my fingers no longer straightened and when I struggled to get out of bed because my knees, hips, and feet were at once brittle, achy, and swollen. Despite those subtle physical signs, my mind told me there was no need to alert my parents. Just growing pains! Until it became clear they weren’t. It was one morning that my mom found my clutching the bannister in our old Victorian house as I slid down the stairs. I told her I couldn’t put any weight on my feet.

After a year of seeing various pediatricians, orthopedic surgeons, and specialists, I was diagnosed at 16 with juvenile arthritis. I’ve now had this disease — and the others I’ve since added under “overlap syndrome” with lupus and scleroderma — for more than half my life. By this point, I’m now used to the injections, the IVs, the blood tests, the daily regimen of pills, the fatigue, and the signs that something’s not right in my body and that I’m flaring.

And yet, up until my diagnosis, I had an idyllic childhood, largely free from chronic pain — summers spent riding bikes with friends, going to the beach, hiking in the woods with my siblings, and yes, lots of swimming. And yet for so many kids the pain is all they know. July was juvenile arthritis awareness month, and my thoughts are on all the kids who don’t get to play soccer and taken dance lessons — all the 300,000 kids in the US with juvenile arthritis who miss out on being a kid. That’s because I hope like me, they can find a place where they’re carefree and can feel like a kid, which is what happens every time I plunge into the depths and feel the water hug my body — a safe, watery cocoon enveloping my stiff, tired body.

This disease has robbed me of so much and continues to take away from me. On land, I feel the effects more acutely — I go to bed in pain and wake up that way. I’ll eventually fail the drugs I’m on as I have before; it’s only a matter of time until it happens again. I know knee replacements and hip replacements are likely in my future. I’ve had to accept my limitations, while still challenging myself. It’s hard to watch my friends do all sorts of wonderful things and come to grips with my reality. Will I compete in an Ironman triathlon? Probably not. Can I set achievable physical goals for myself? Yes.

Amidst the physical realities, I stave off the anxiety and depression that is a constant companion of battle an autoimmune disease. That’s why I’m glad to have the water to escape to, and my hope and prayer is that every one struggling with chronic illness — especially every kid — has a similar outlet. If not, I encourage you to find that place where you forget about the pain and struggles of your daily life.

For me, it’ll always be the swimming pool, the lake, or the ocean; wherever I find water, there is my sanctuary. So when the pain of my joints and the mental strain of this chronic life becomes too much, when it’s too hard to be on land, I’ll always take the plunge and dive into the weightless expanse of water.

Image courtesy of ‘The Little Mermaid’ Facebook page

Originally published: August 6, 2018
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