Background/Purpose: I recall sitting in the doctor’s office with my one-month-old baby in his stroller, hearing the words “You have rheumatoid arthritis.” At 21, I had no understanding of this condition, and my primary care doctor didn’t take the time to talk to me about it. I didn’t perceive it as too serious, but after my first visit with a rheumatologist, I felt worse than before. He assured me that I would be fine, but left the room before I could ask any questions or seek comfort in understanding my disease. This made me feel frustrated because I felt I would receive the same standard care as everyone else.

Because of this, I decided not to take the prescribed medication, hoping the condition would pass.. However, my condition deteriorated to the point where I couldn’t care for myself, let alone my son.

Intervention: This realization prompted me to seek answers and take control of my health. I started on my own research journey and found a rheumatologist who took me seriously and took the time to answer my questions. She emphasized the importance of adhering to the treatment plan. This marked a turning point for me, igniting a desire to be proactive in my care.

Around that time I also found CreakyJoints. CreakyJoints is an international digital community for people living with arthritis who seek education, support, advocacy, and patient-centered research. The articles and personal stories available on the CreakyJoints.org website provided invaluable insights and answered questions I thought no one could address. To this day, I keep a ‘bucket list’ of ideas to try from those articles. Whenever doubts, concerns, or questions arose, I turned to CreakyJoints for guidance. It became my go-to resource and has prompted many great conversations about integrative treatments with my rheumatologist.

Through CreakyJoints, I discovered patient advocacy opportunities and ArthritisPower, a patient-centered research registry. Inspired to be a voice for others facing similar challenges, I embraced the chance to advocate for the rheumatoid arthritis (RA) community. By fostering a closer relationship with my doctor, I gained better control over my flares and realized that a fulfilling life with this disease was possible. Lifestyle changes and the insights I gained from my experiences allowed me to manage my RA effectively.

Maintenance: I’m still navigating how to thrive with the disease. Currently employed as a certified medical assistant at a cancer center, I cherish the open line of communication and trust I’ve developed with my rheumatologist. Participating in various projects with CreakyJoints has been transformative. Connecting with individuals across the world who share similar conditions has provided immense support and learning opportunities. We help one another while gaining insights into our conditions and sharing ideas that may work for some but not others. Being part of this community has given me a voice and the chance to advocate for those who may feel unheard.

Quality of Life: Finding the right rheumatologist inspired me to become an active member of the chronic disease community and explore integrative treatments. Embracing this journey has led to a significantly improved quality of life, and I am profoundly grateful for the experiences I have gained.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/finding-gratitude-in-adversity-the-impact-of-finding-the-right-rheumatologist/