I Took Chemo for Nothing
February 22, 2017
After hearing I was diagnosed with juvenile rheumatoid arthritis, my doctor told me something that would continue to haunt my waking thoughts for months. They said I needed to “adjust to the new normal,” but nothing about my situation was normal. Arthritis at the age of 15 was not normal, the dosage of painkillers prescribed was not normal, not being able to leave my bed was not normal. Nothing about being chronically ill is normal, especially when you are misdiagnosed.
When thinking about my childhood, it seemed like I was never sick; I caught the occasional December flu bug, but I never fathomed the thought of having a chronic illness. I saw children in the St. Judes Children’s Research Hospital commercials struggling with failing health and my heart hurt for the children and families whose lives had been impacted by sickness, but the day my rheumatologist said that I was chronically ill, it really put it all in perspective.
It started in December of 2015. I was in eighth grade and my health started fading. It was barely noticeable at first, but when my attendance rate started crashing I knew that something had to be wrong. I went to my pediatrician every other week it felt like, and each time they gave the same diagnosis.
“You’re fine, you just have a virus. Rest, you will feel better.”
But no matter the hours I slept or didn’t, nothing seemed to make a difference. This trend continued throughout the summer, and slowly became a larger part of my life. My whole family took a trip to Alaska, and the whole time I just wanted to stay in bed. I was in one of the most breathtaking locations in the world, and I couldn’t bring myself to leave my room.
It was around this time that my joints started acting up. My knees would throb and swell, and I could hardly walk around without help from my mom. My fingers throbbed and I needed assistance to open a jar or twist a door knob. I stopped painting and dancing because my body ached so much that I could not move. Sometimes I would just lay in pain on my bedroom floor, because it was easier to lay there then walk to my bed or couch.
Sleep-filled days passed, as well as restless nights. My freshman year rolled around and we all wanted answers. My mom started researching my symptoms on Web MD and Google, scrolling through pages upon pages of diagnoses searching for something that resembled my symptoms. Though overwhelmed, she knew that there had to be answers somewhere, that regardless of what my pediatrician said, I did not just have a virus. We stumbled across a list of chronic illnesses, and my mom felt that juvenile arthritis sounded similar to what I was struggling with. So, we booked an appointment with a juvenile rheumatologist.
Something unexpected that we stumbled across was as a new patient was that at each practitioner, wait times were always a factor. We would attempt to get an appointment with a doctor or specialist and they would say, “Oh, we have an appointment available in three weeks. We can book you then.”
It felt like the severity of my situation was not even recognized all because I was a new patient. I was always put last on the wait list, regardless of the fact that my health was deteriorating. I started missing school regularly, and as a freshman that messed with the whole “build your GPA, get into a good school, live a happy life” plan. So, I tended to stress regularly. But, my health got to a point that my mom had to physically pull me out of bed every day, and walk me down the hall each morning. If I made it to school I sat in each class hardly processing a word. I would just sit at a desk, write some notes and await the 2:30 p.m. bell. I was at school, but my mind was hardly able to process a conversation. My memory was cloudy and my focus ability was that of a toddler. I got to a point where I could only write a few words of an essay until I gave up and took a nap. My grades were dropping as well as my attendance rate, but I couldn’t do anything about it.