Emily R. - Diagnosed at age 29
My battle with illness began in childhood in Yauco, Puerto Rico, with low platelets (thrombocytopenia), infections, and hospital visits. In 2018, I moved to Maryland, where my health severely deteriorated. For six years, I faced an exhausting medical maze. As an LPN nurse, some doctors dismissed my excruciating joint pain, memory loss, and fatigue as "just stress," making me feel crazy because some results were normal, questioning how I had symptoms if tests looked good.
The lack of understanding from my environment was psychologically devastating. People judged me as "dramatic" because I looked healthy outside, unaware that my lunchbox had become a pharmacy. In 2019, facing a language barrier, a doctor humiliated me, saying to return only when I spoke English. Fortunately, an empathetic doctor of African origin welcomed me, saying: "Health and symptoms are a universal language."
After years of fighting for answers and undergoing traumatic tests like a claustrophobic MRI, my search ended on Nov. 12, 2025. At age 29, I tested positive on the ANA test and was diagnosed with Systemic Lupus Erythematosus (SLE). They also suspect secondary Sjögren's Syndrome, pending further studies. It was a mix of relief and terror.
Currently, in 2026, I battle physical limitations: extreme dryness, a red face, light sensitivity, and constant coldness. I suffer from left-side joint pain, severe fatigue, purple nails from possible circulation issues, and intense brain fog. I face sudden bodily "shutdowns" where I lose pressure and fall asleep—medically documented as autoimmune autonomic neuropathy. Furthermore, I experience severe digestive tract inflammation identical to the acute colitis crisis in May 2023 that led to an emergency hospitalization and a colon procedure to remove a polyp (which, thank God, was non-cancerous), alongside severe hearing loss.
As an HR professional, it is exhausting to serve others on days when my body collapses, especially facing workplace insensitivity regarding my invisible disabilities. However, my workplace has shown patience, letting me use paper notes and other communication accommodations when Lupus inflames my tonsils or my hearing fails.
Tools like the Lupus Foundation’s SELF program help me manage my daily care. What gives me hope is sharing my journey to raise awareness. Lupus is an invisible monster; we need support, not judgment. To anyone lost in the dark searching for a diagnosis: do not give up. Your pain is real, and tomorrow is always a new day to carry our blocks with grace.