Your Stories: One Teen’s AS Journey from Disbelief to Diagnosis by Mia Rust

My name is Mia Rust, and I was diagnosed with ankylosing spondylitis at 19. I have had symptoms on and off since I was 12, but it was blown off as sports related. In July, after my senior year of high school, my AS was triggered after a stressful event. It took ten months to get a diagnosis and proper treatment.

During a stressful time in July of 2022, I woke up with extreme lower back pain. I did not tell anyone for a few days because I figured I hurt it while exercising. I finally had to tell someone when I woke up and could not move my legs. My parents immediately took me to the emergency room, and they said I had sciatica. My family and I made several ER visits for excruciating pain. Eventually, I was put in the hospital because doctors believed it was a neurologic issue. We tried to tell doctors that maybe all this was due to my sacroiliac joints, but they said that was impossible because I was too young. After weeks of being in a wheelchair, I managed to get better and was able to attend Abilene Christian University. Everything was great.

I made friends, was in the band, and loved my classes. In September, I started to have severe pain again. The pain this time was far worse than before. I could not function in class or do daily activities. After much deliberation, my parents and I decided at the end of October 2022 that I needed to medically withdraw from school and come home to seek medical treatment. While home, I made countless ER visits and suffered from PNES seizures due to pain. I was not getting proper treatment because doctors believed it was a neurologic issue. Later, I was told the pain was in my head because doctors could not find a logical explanation for it. Finally, one doctor agreed to MRI my pelvis, and he saw something horrible. He said he had never seen sacroiliac joints with that much damage at my age. He said the MRI looked like it came from an 80-year-old. We mentioned AS to him, but he said I couldn’t have that. Eventually, he ended up fusing my sacroiliac joints.

The two surgeries helped some but did not cure my pain. We took my MRI to a major orthopedic hospital, and they referred me to a rheumatologist. Thankfully, the rheumatologist took me seriously, and in May of 2023, I was diagnosed with ankylosing spondylitis. I was put on Humira, and my life completely changed with that medication. Before my diagnosis, I questioned myself. People told me my pain was unreal and that I just wanted attention. I started to question myself, wondering if I made everything up. Living in the unknown was difficult because we were shooting in the dark, trying to find a treatment plan. Once I was finally taken seriously, I was happy again. I knew my symptoms were real, and I was not faking it.

Now, I am slowly learning to cope with my AS. I have a treatment plan and a daily routine. I stretch in the morning, stay active, and eat healthy. I am starting to feel like a normal teenager again. I have only had minimal pain for a while now, which is unbelievable because I was in constant pain a few months ago. I still have much to learn about my AS, but I am willing to do whatever it takes to make me feel better. My advice to those seeking a diagnosis or those with AS is simple. Try to stay positive. Staying positive is key even when the world feels like it is falling apart. My family and I would have never made it through the diagnosis process without a hopeful outlook. To this day, I still stay positive. I do not let my AS control me; I control it.