Shadé M. - Diagnosed at age 34
In the Fall of 2019, the winds of challenge swept into my life when I was diagnosed with Mixed Connective Tissue Disease, which changed to lupus in early 2020. As the calendar pages turned, so did my world, marked by headaches, brain fog, and an array of perplexing symptoms. By August, I found myself on short-term disability, grappling with the unknown intricacies of my body and the elusive triggers of my condition.
My journey to diagnosis started when a neurologist ran an ANA test, revealing a positive result that led me to a rheumatologist. The diagnosis unfolded, unveiling the reality of living with an autoimmune disease. My kidneys faced a relentless assault, spilling over four grams of protein into my urine. After a two-week stay in the hospital, a kidney biopsy initially suggested normalcy, but a second opinion diagnosed Class Five lupus of the kidneys.
The initial year was a crucible of mental, emotional, and physical strife. Long-term disability, a medication regimen of 22 pills, a weight gain of over 60 pounds – my quality of life plummeted. Grief, anger, confusion, and hopelessness took turns casting shadows over my days. Anxiety gripped me with every new symptom, painting a bleak future.
The following year, there was a transformative shift. Strengthened by prayer, I resolved to turn pain into purpose. Advocacy became my mantra as I participated in shared decision-making with my healthcare team. Taking charge of what I could control, I prioritized rest, monitored my diet, and learned to predict and manage flares. Phases of grief gave way to resilience, and my story transformed into a beacon of hope.
Despite the tumultuous journey, today, my kidneys have been in remission since 2021. Inflammation lingers but has been manageable. I reclaimed academia, securing a B.A. with a 4.0, and I am poised to embark on a career aligned with my passion. My adversity gave birth to a newfound purpose, and I became an advocate, educating others about autoimmune diseases, particularly within communities that mirror my own.
In the echoes of my story, I stand as a testament to the possibility of turning pain into purpose. Hope fuels my spirit, knowing that organizations tirelessly work toward a cure. I remain resolute and committed to educating my community, especially those who bear the hues of black and brown like me. If questions about autoimmune diseases persist, our work still needs to be done.