Being diagnosed with a chronic illness at such a young age makes you grow up very quickly. The innocence that typically comes with adolescence is quickly taken away when you have to be held down to receive injections, get labs done, and take time out of school to go to doctor appointments. Then you get to the point where you have to rely less on your parent or caregiver’s advocacy and learn to navigate and manage your own health care.
I was diagnosed with Juvenile Rheumatoid Arthritis, now known as Juvenile Idiopathic Arthritis (JIA) when I was just four years old. It primarily affected my knee, leading to unpredictable swelling and stiffness throughout my adolescence and teenage years. Ironically, I continued to be an active child playing soccer and running cross country well into my high school years. Throughout the years, I was on every biologic available and vividly remember my doctors and parents fighting for insurance approval.
I was always told I would grow out of JIA, and it wouldn’t be something I would have to worry about once I turned 16. Little did I know, this childhood chronic illness would shape so many aspects of my life well into adulthood.
As I transitioned into my college years, my JIA became quieter and new symptoms started to emerge. The insatiable dryness in my mouth and irritation of my eyes turned into Sjogren’s Syndrome. While my body shifted gears with which autoimmune disease it wanted to express, my mind was still processing the last 14 years of living with JIA.
I decided to focus my education on becoming a physical therapist. Growing up surrounded by medical professionals, medications, and procedures motivated me to pursue a career within the medical field. Living with JIA led me to physical therapy. While I had other hobbies and ambitions, this is what I knew. The autoimmune disease had consumed my life for as long as I could remember.
While my health ebbed and flowed, my disease condition stayed relatively stable. I went on to graduate school to become a physical therapist (PT), and immediately knew I made the right choice. Living with a chronic disease can be so isolating, and having someone in your care team who is empathetic and “in the trenches” with you can feel like a breath of fresh air. My own experiences with joint limitations and autoimmune disease helped me become a better practitioner.
Shortly after graduating from PT school, I got married and started considering what it would take for my husband and I to start a family. I consulted with every specialist I saw to ensure they knew my goal was to have children. I avoided medications that would lead to fetal abnormalities, took prophylactic medications, and even went on a strict anti-inflammatory diet to prepare my body as best as possible.
However, no one could have predicted what was to come. Many professionals and lay people alike often say things like, “Your autoimmune symptoms improve when you get pregnant.” For me, the exact and complete opposite happened. Every week was a roller coaster of new symptoms that I had never experienced at any point in my life. It ranged from a Lupus rash, extreme swelling due to kidney disease, and ultimately complete heart block in my unborn daughter.
Unfortunately, my daughter, Renée, passed away when she was 8 months old due to medical complications from being born prematurely at 26 weeks. All of the complexities from this pregnancy led to a diagnosis of Lupus and Pulmonary Arterial Hypertension.
I would have never thought a diagnosis at four years old would have drastically shaped my life and my decisions in the way that it has. I waited and waited to grow out of JIA, but ultimately increasing just meant morphing into the next autoimmune disease. I took decades and tragedy to learn lessons of acceptance, peace, and self-advocacy. What started with JIA, ended with me finally understanding that it was the foundation for who I had become, not something I needed to escape.
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