Hello, my name is Queena, and I was diagnosed with Lupus and Juvenile Arthritis in 2021. During this time, it was hard to ask for help. For the most part my “illness” – or whatever was causing my swollen joints and excruciating pain – was invisible. It wasn’t until later when the pain kept me from sleeping, causing unintentional weight loss, and I developed other symptoms like rashes, chest pain and night sweats, that I was finally referred to a rheumatologist. The relief I felt when my pain was acknowledged and I received a diagnosis was immense, however, I was already mentally broken from weeks of painful, sleepless nights.
Unfortunately, just over a year later, my 11-year-old sister, Millie, began experiencing the same symptoms. She had joint pain, was losing weight, and developed rashes and chest pain. Things escalated until Millie was rushed to the hospital due to lung inflammation causing breathing problems. Unfortunately, there were no pediatric rheumatologists in our town, so she was sent home after four days in the hospital with a non-steroidal anti-inflammatory drug (NSAID) and some other painkillers.
We were incredibly grateful when Millie finally got to see a pediatric rheumatologist in the next town over. Like me, she was diagnosed with Lupus and Juvenile Arthritis. Thanks to the treatments prescribed by her rheumatologist, she was back to her normal self after just a couple of months.
After my diagnosis, it was difficult to find others with similar experiences. I searched online but couldn’t find any support groups in my province. Luckily, the staff at Millie’s rheumatologist’s office provided us with resources where children like Millie and I could connect and grow stronger together. One of these organizations was Cassie + Friends.
Most people don’t know much about Lupus, Juvenile Arthritis, or other rheumatic diseases. This lack of understanding and the invisible nature of our illnesses make it hard for Millie and me to ask for help. It is often difficult to explain just how excruciating the pain can be, especially when the only visible symptom is swollen joints. That is why Millie and I run with Team Cassie + Friends. We want to raise awareness for all rheumatic diseases because we know there are many others like us with invisible illnesses and visible strengths.
