Hello there! My name is Emily Bessey. I am 19 years old and live in Cole Harbour, Nova Scotia.

My journey with JIA and TMJ started way back in 2009 when I was just 6 years old. I would go to school limping, hardly able to walk, but return home at the end of the day walking normally (that classic JIA morning stiffness, am I right?). One day, I was playing around on the floor with my grandfather when he picked me up, bringing my knees into my chest. I instantly screamed out in pain and that’s when my mom knew something was wrong. She noticed that one of my knees was extremely swollen. We went to see our family doctor, who sent us for further testing and bloodwork, as well as gave us a referral to the rheumatology clinic at the IWK. I had my first rheumatology appointment in June of 2009 where I was officially diagnosed with Juvenile Idiopathic Arthritis. I don’t remember much from that very first appointment, other than the fact that I wanted it to be over. It was a very long day; I had every joint in my body examined for what felt like three times over. I was prescribed medications for my then-affected joints, scheduled for joint injections, and told to come back at the end of the summer for a follow-up.

Flash forward a few months to August 2009. At my first appointment, my rheumatologist noticed a few odd things about my jaw. She could tell it wasn’t opening all the way, and when it did open, it opened wider on one side and deviated to one side. She referred us to oral surgery to see if there was any arthritis in my temporomandibular joints, aka my TMJs. At the IWK, there was no pediatric oral surgery department, so we had to go to the adult hospital just across the street—a short distance away from my usual appointment location, but an entirely different world inside. The waiting rooms and hallways weren’t nearly as pretty (a comment I would still argue as a 19-year-old today) and there was a significant lack of toys in the waiting rooms as well (less important to me now, but a major concern for 6-year-old me). At the appointment, we met with the oral surgeon and took several x-rays. Not many kids my age/size were seen in this clinic, so there was nopediatric-sized equipment. Nurses and x-ray technicians would bring the machines to their lowest heights and smallest sizes, and when that still wasn’t enough, they’d bring me phone books and boxes to stand on. I was scheduled for an MRI of my jaw later that same month.

This was my first MRI ever, and the jaw is a very difficult joint to get a clear image of. The key to an MRI is staying extremely still. But the loud banging of the machine and the overall strange, new, and scary experience of being in an MRI made it impossible for me to do so. Finally, we made it to the last portion of the MRI, in which they had to hold my mouth open with bite plates to get a photo of the joint while it was open. Little did the doctors know, I had a very loose tooth that ended up falling out during the MRI. After that, they brought me out of the machine and told me we would try again another day, as none of the photos they took had turned out well and I was too worked up after losing my tooth. But hey, how many people can say they lost a tooth in an MRI machine?! It was almost a year later, in May 2010, when we re-did the MRI, this time with sedation so I would stay still enough to get good photos. This time, the photos confirmed what my rheumatologist and oral surgeon suspected and revealed I had active arthritis in my right TMJ as well as damage to the surrounding cartilage. I was scheduled for a joint injection in my jaw later that month. I continued to be followed by the oral surgery team, in addition to my regular rheumatologist. We did a repeat MRI in May of 2011 which showed that the arthritis had spread to my left TMJ, which had also led to cartilage damage on that side.

We continued with this pattern of follow-up appointments for years until September 2020, when the conversation shifted to the thing every kid with TMJ knows is coming: the potential of jaw surgery. This was the first time we had serious conversations about jaw surgery. Until this point, everything had been hypothetical since my jaw wasn’t done growing yet. In September 2020 I started the process of straightening my teeth for surgery. Originally, my surgery was slated for June of 2021, but this was unfortunately postponed due to COVID. The date was then moved to July 2021, which also got postponed due to COVID. I was rescheduled for surgery in April of 2022, but guess what…it was also postponed due to COVID. I’m now looking at surgery in either December 2022 or April 2023.

I hope that writing about my experience has helped someone to feel understood or seen; having a chronic illness can feel so isolating and I hope those reading this know that they are not alone…