The word arthritis is not an easy one to grasp as a kid in kindergarten. I didn’t understand what the word meant at the time, but I was sure of two things: one of my knees was suddenly bigger than the other and that it hurt… a lot. They say that growing pains are common and should go away over time, but growing up with pain is a whole different story.
I don’t remember much from the day I was diagnosed with Juvenile Rheumatoid Arthritis (now known as JIA), but it was a day that would change my life. My parents noticed that one of my knees was very swollen and so they took me to the doctor and later found out I had arthritis. This came as a shock to my family because arthritis was commonly known as an “old person’s disease”. That was the day that we all learned kids can get arthritis too.
Elementary school was definitely not a “walk in the park”. My knee was no longer swollen but I did still experience pain regularly. It wasn’t easy for me to run or play at recess like all the other kids would. This brought up a lot of thoughts about normalcy and what that really meant. I still didn’t understand what was going on but I knew something about me was different. The procedure I had seemed to help and everything was right with the world… until it wasn’t.
When I turned 9 years old I started experiencing swelling and knee pain again, this time it was the other knee. Turns out the arthritis spread to my other leg and I had to repeat the process again. This time, I had to miss school a couple times for doctors appointments and I started to tell more people. Some teachers told me that it wasn’t possible for me to have arthritis and others just didn’t understand it. I was told by my peers that my knee brace “wasn’t real” and I couldn’t have arthritis. I had a second procedure and once again seemed to help and most of my symptoms went away. But this wasn’t the end of my journey.
High school is a challenge in itself, but I found it the most challenging time to battle my JIA. Near the beginning of grade 9, I started to feel pain in my hip. It would hurt to walk and my hip would get very stiff often. I saw a lot of doctors but they all said different things. After a long waiting period, I finally got an appointment with my rheumatologist and discovered that my JIA had spread once again, this time to both of my hips. This was the most painful part of my journey thus far and I had periods of time where I was almost unable to walk at all. I missed a lot of school that semester because the pain became unbearable. The worst part was that a lot of people didn’t believe me. I was refused elevator access at school just because my pain was invisible and I didn’t look injured. I was told by several people that I was just being dramatic and it couldn’t really be that bad. All I wanted to do was be a “normal” high school student and it got to a point where I wouldn’t tell people I had arthritis and just made up a different reason because I was afraid of being doubted or shamed. After trying many treatment options, I finally found one that worked for me.
I am now in university and am doing really well. I was initially scared to share my diagnosis with my friends because I started to feel “normal” again. I eventually did share it with my friends and felt supported, not judged. This past summer, I had the chance to volunteer at an arthritis camp and I felt surrounded by individuals who fully understood me. It is important to find a support system and to be kind to yourself. I used to think my arthritis made me weak, but if growing up with arthritis has taught me anything, it’s that my arthritis is my strength. I have gone through ups and downs and battled things that most kids don’t need to battle but I would not be who I am today without my arthritis.
Growing up with arthritis has its challenges, that’s for sure. People might doubt you or react badly because they don’t understand what you’re going through but you will find people who will. If you’re reading this and you have arthritis, just know that your pain and experiences are valid, you’re seen, and most of all, you are strong.