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16 years old
My name is Rachel and I will be 17 years old this May, but I was only 11 years old when I first began experiencing symptoms of juvenile rheumatoid arthritis. I knew something was wrong when my elbow was constantly aching, and after bouncing through a variety of specialists and dealing with the physical and emotional consequences of misdiagnoses, I found myself with a variety of Arthritis Foundation pamphlets explaining “juvenile arthritis,” a term that was admittedly foreign to me at the time. My rheumatologist and I joked somewhat seriously that my joints were rivers instead of canyons; ultrasounds on my elbows, knees, and ankles confirmed the presence of the fluid and swelling that was causing my pain.
I am still in the process of trying a variety of treatments for my arthritis, from NSAIDs to DMARDs to biologics. During the early years of my disease, I went to physical therapy often because the swelling in my joints resulted in muscle stiffness that greatly limited my mobile capacity and range of motion. I am currently managing symptoms with DMARDs and a biologic, but I am not in remission, and I still have bad days in which activities like writing and walking are extremely difficult.
One of my biggest challenges as a young person living with arthritis is explaining to my friends and teachers that I have a disease that is typically misunderstood as exclusive to people older than me. The invisibility of my illness and perceived mildness of it has often left me searching for validity and upset at the lack of understanding. I have trouble asking for the help I need without feeling like a burden, and I frequently struggle to verbalize exactly how I am feeling during flares. If you are currently living with a form of arthritis or another autoimmune illness yourself, please know that reaching out for help, whether it is physical or emotional, is not only a good idea, it is essential to living in a sustainable way and preserving energy.
Even though these challenges exist, I am constantly motivated and inspired by all of the people I meet through the Arthritis Foundation and through the chronic illness community. I have learned to be an empathetic advocate, willing to stick up for myself and serve as a resource to other patients. As part of my advocacy and my journey toward being more open about my disease, I started a blog that can be found at www.rachelplusrheum.com. I am learning that sharing both the beauty and the pain of living with JRA is helpful to myself and to others. Most importantly of all, I am extremely grateful for all of the people with arthritis who have shown me compassion and support as I attempt to navigate this ongoing challenge. Thank you for fighting for a cure!