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Jenna Kedy

Finding My Voice: How Self-Advocacy Transformed My Journey with Childhood Arthritis

Advocating for yourself in healthcare can be a powerful way to ensure your needs are met and your voice is heard. For me, this journey began at age 11, shortly after being diagnosed with arthritis. It was a time marked by confusion and discomfort as I struggled to understand my new reality. I had to adapt quickly to a world where I was often the only kid dealing with this chronic condition—and that world didn’t always understand what I was going through.


At that age, I didn’t fully grasp what my diagnosis meant or what kind of help I might need, but I quickly saw that speaking up was essential. It became clear that if I didn’t communicate my needs, they would be overlooked, simply because arthritis wasn’t something people associated with kids. This experience, though challenging, was one of my first lessons in self-advocacy.


In the early days, there were many times when doctors, teachers, and even friends couldn’t see my pain or limitations. Arthritis, like many chronic illnesses, is often invisible, so people would assume I was fine. But I wasn’t. I remember countless situations at school where I needed extra time to finish assignments or required a break to manage my pain. Without voicing these needs, they went unnoticed, and I felt unsupported and sometimes even frustrated.


One of the toughest parts was learning to advocate in a way that helped others understand without making me feel vulnerable or exposed. At 11, speaking up didn’t come naturally; I worried others wouldn’t believe me or see me as a burden. However, I began to realize that my comfort and success depended on my willingness to communicate openly about my condition and what I needed.


My journey of self-advocacy started with small steps. I learned to express when I was in pain or needed to rest. Over time, I became more comfortable requesting accommodations, such as extra time for assignments or seating arrangements that didn’t strain my joints. These small but powerful changes helped me realize the value of speaking up. Even though it felt daunting initially, each time I advocated for myself, I gained confidence and clarity in managing my health.


Learning to prepare for doctor’s appointments was another huge step. I started making lists of my symptoms, questions, and concerns so I wouldn’t forget them during the visit. I felt more in control of my care and noticed they were more receptive to my concerns.


Advocating for oneself isn’t always easy, especially when facing skepticism; there were times when I felt dismissed or that my concerns weren’t taken seriously. In those moments, I learned to remain persistent, knowing I had the right to be heard. Building a support system also made a difference. Having family, friends, and mentors who understood my journey gave me the encouragement I needed to keep advocating.


Advocating for my health also taught me to educate those around me. I realized that if I wanted people to understand my needs, I needed to explain arthritis and the challenges it brought. This meant educating teachers on why extra time was essential, or explaining to friends why I might need to cancel plans on bad pain days. Helping others understand my condition created an environment where my needs were met with more compassion and understanding.


Looking back, learning to advocate for myself has been one of the most valuable lessons in my journey with arthritis. It has empowered me to take charge of my health, prioritize my comfort, and embrace the strength of being my champion.

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