I am in pain often. I think it had started earlier, but I remember the pain beginning in 2020, right after I returned to school. I remember always having to elevate my leg on the white-topped bin that isolated my belongings during grammar class after PE. The pain gripped my knees and did not let go, eventually moving to all of my joints. Due to the pain, I could barely walk up the school steps or participate in PE and outdoor ED. After five long years, my parents finally took me to a rheumatologist at the VCU Children’s Hospital.

We rode the elevator to the third floor and sat in the freezing blue lobby. After a long wait, the nurse called us in. She took my vitals and gave me a questionnaire to fill out. I tried not to move too much after she left, as the crinkling of the paper in the silent room made me cringe. My parents, too engrossed in their phones, did not look up as I became engrossed in mine. The Friday air was hot, and the hospital air conditioning cooled the prickling of my nervous joints.

The doctor walked in with his clipboard and kind smile and began to ask his questions. I pulled my answers from the depths of my memory and avoided my parents’ confused gazes. He asked me to touch my toes and bend my fingers and wrists and elbows. He was especially harsh to my thumbs, asking me to bend them in a way I did not understand. He almost dislocated my right. The doctor and my parents talked some as my thoughts began to drift. I had to go through hours upon hours of my fingers seizing up after they thought I had written enough. Sometimes, they would get stuck in one position and wouldn't move for minutes at a time. I could barely walk sometimes, and other times, I wouldn’t be able to get out of bed in the morning.

After jotting down notes, he told me, "You have hypermobility.” My eyes lit up. Hypermobility was one of the words I had just looked up the day before. I was scared the doctor wouldn’t find out anything, so I had decided to find my diagnosis. I breathed a small sigh because I finally knew what was wrong with me. Five years of debilitating, unexplained, and confusing pain for one diagnosis. I began to rock on the crinkling paper as they finished talking, and I was overcome with a small wave of emotion, with the air cooling my burning thumb. We drove home in loud conversation and blaring music, and I was thankful to finally have a diagnosis.

Regardless of the big pill I take every morning and night, my joint pain will always be a part of me. In fact, it is one of the biggest parts of me. It’s been stuck inside of me for so long that it is hard to imagine a world without it. There’s a small sort of rhythm to the pain that I did not catch before. I notice it when I write with one of my repeatedly sharpened pencils or type furiously on my MacBook. It drums right under my fingers and down in my lower back and burns in my knees. It is something that I will always live with.

© Madison. All rights reserved. If you are interested in quoting this story, contact the national team and we can put you in touch with the author’s teacher.