The Blessings and Curses of Growing Up With Chronic Pain

Growing up with a disability has changed my life in more ways than I will ever be able to comprehend. At only 8 years old, I was diagnosed with arthritis and since then have developed a chronic pain syndrome and chronic fatigue. If you catch me at a good time you wouldn’t be able to tell, save for my cane. Yet on my bad days, I look like death warmed over, and I feel worse.

My joints will ache and throb. At times, the pain will be so extreme that tears will burn the back of my eyes, but they may never fall. My breathing will get shallow. My grip on my cane will grow so strong my knuckles will turn white. Fatigue may wash over me like a rising tide, slow and subtle, or like a tsunami, devastating and violent. My brain will lag like a game on an overloaded computer. My eyes will look but not see. It may take me minutes to realize I have not moved or thought. I feel both frozen and limp. I will seclude myself till it passes.

Over the past 10 years, arthritis has taken my love of running, desire to write every story idea that comes to my mind, sabotaged play dates and made me suffer in class. My fatigue has robbed me of rest. It has made the most menial of tasks into trials. It has shortened my fuse and caused me to get angry when I didn’t want to be. My chronic pain syndrome made me lose faith in myself and made me think it was all in my head. It robbed me of confidence and makes me doubt most of my pain-related decisions. I have been hurt by these things. But I have not lost hope.

I have learned that perseverance isn’t always glamorous. Falling over the finish line is OK too. My disabilities have given me empathy. I have made friends on the elevator and have discovered people I may have never met and now can’t imagine living without. Being a young person with a disability has given me opportunities to educate people on juvenile arthritis. I have helped to normalize being young and disabled. I found a hero in my pediatric doctor. She taught me morals. She taught me the value of listening by listening to me.

I have learned to pick my battles. I have lost some and won some; but I know that no matter what, I can take on the next one. I have become an advocate for myself and others. I take pride in taking the stairs. I have overcome any fear of needles I may have had. I have learned it’s worth getting on my knees to be at eye level with a child, and some people are worth taking the stairs for.

Arthritis, fatigue, chronic pain has taken many freedoms, but they have given passion. With everything they have taken, they have given me something to fight for. This does not take away the hurt. My joints ache no less. But it gives me hope. It reminds me that no matter how bad today was, there was one simile, one conversation or kind look I owe indirectly or directly to my conditions. That makes tomorrow bearable.

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