If someone told me at 12 years old that in less than a year I would be diagnosed with lupus that subsequently would alter the entire course of my life from that moment, I would have never believed them. I experienced my first serious lupus flare-up in 2020, it was a sort of pain I never thought I would endure so young, leaving me bedridden in agonizing discomfort. I had no idea what was happening to me, and neither did my family or even doctors. It even came to a point where a well-regarded doctor I was hoping would diagnose and treat me, claimed my pain was “in my head” and advised my mom to have me visit a therapist, and sent me along my way. That was one of the most degrading and ridiculing experiences of my life. Due to being a young girl, my health was consistently overlooked, neglected, and infantilized by those whose job was to help. Over a year later, still experiencing dreadful symptoms, I got diagnosed with lupus SLE via blood test that felt as if they removed half my blood from my body. I distinctly remember sitting in a depressing, beige examination room with an adult-sized face mask too big for my face hearing the word “lupus” and several other incomprehensible words that all blended into a jumble of sounds and echoes as I was launched into a spiral of anxiety and complete overwhelmingness. I was handed a seemingly never-ending pamphlet detailing all the aspects of lupus which I thoroughly did not understand as my tear-filled eyes could only distinguish the words “chronic” and “incurable”. The complete and utter lack of education I received on the disease that I was diagnosed with contributed to the deterioration of my physical and mental health as I relied on the frightening information Google provided to learn the fate of my future with lupus; I was convinced that my life was over. Throughout my lupus journey, I have experimented with close to 80 different medications ranging from topicals to pills and even intravenous methods. All the treatments I tried either did not change a thing or had reactions worse than my original lupus symptoms, landing me in the hospital for medication reactions on multiple occasions. There was a point where I had a medication regimen of 20 pills a day; I was 13 years old.
Regularly scheduled appointments with SickKids have become a habitual part of my life, even today. I would miss school to sit for 3 hours in a frigid hospital waiting room where patients are packed like sardines to be only seen by a doctor for 3 minutes. This process rightfully took a toll on me as a friend, daughter, sister, and student; stealing my valuable childhood away from me and pushing myself into a life more painful and stressful than most adults.
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