The road to diagnosis
I’m a North Carolina-based writer, speaker, and Lipedema advocate. Lipedema is a genetic connective tissue disorder that damages the lymphatic system, leading to chronic inflammation and pain. Lipedema bodies produce fibrotic fat, which is non-metabolic and doesn’t respond to diet or exercise. While the condition occurs in 1 in 11 people assigned female at birth, many doctors and patients are unfamiliar with the disorder.
Despite living with lipedema and its symptoms for most of my life, I was only diagnosed a few years ago. Racism, ableism, classism, fatphobia, and other forms of bias led medical professionals to dismiss my lived experience, prescribing invasive procedures like gastric bypass without even examining me. I was bullied throughout childhood, and am no longer willing to accept mistreatment from those projecting their fears and misconceptions onto my body.
I was raised by Southern parents in Oakland, California. The ’80s were a chaotic time in the region, and, after our house was destroyed by fire, my mother and I moved further north to a suburb of Napa. I was a 17 year old Black high school dropout, and no employer would give me the time of day. To support myself and my mother, at 18 I became a licensed Montessori educator and started my own business. This work forced me to grow up quickly, and provided countless lessons about responsibility. My world turned upside down again when my mother died of cancer shortly after her 61st birthday. I lost our home in Napa, closed my business, and returned to the East Bay. I got a job driving buses at the Lawrence Berkeley National Lab and formed close relationships with my passengers, who encouraged me to pursue greater goals.
I took their advice and found my way to tech through a programming bootcamp. When I got my first job in the industry, I gained access to health insurance after years without it, and began seeking treatment for the painful symptoms I’d been living with. After a lifetime of peer bullying and medical gaslighting, I was finally diagnosed with Lipedema in 2018. I was also diagnosed with Ehlers-Danlos syndrome (EDS). This information changed everything for me. For the first time in my life, I realized that my body was not the result of poor restraint or unhealthy choices. Lipedema and EDS are chronic, genetic conditions, and they’re far more prevalent than most people know.
diagnosis changed everything
I Found Purpose
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