Op-ed | How Lupus has taught me to Lead

I was 17 years old when I was diagnosed with Lupus.

It was the first time I was hospitalized as a teen, and it was the first time my family had to intimately navigate our City’s healthcare system. We were uninsured and unfamiliar, a reality for so many working-class families and working New Yorkers in our City. Lupus forever changed the course of my life and that of my community’s, paving the way for the woman and leader I’ve become.

Today, I’m sharing my story as the New York City Council passes Resolution 550 to designate May as Lupus Awareness Month and our City begins to lift up the all too-often silent voices of people with Lupus.  

Nearly 15 years later, I am still working to understand what Lupus is. It is an incurable autoimmune disease, and every Lupus warrior is unique. My diagnosis is in the kidneys, otherwise known as Lupus Nephritis. I first went into the emergency room after witnessing a series of painful symptoms and not feeling well for weeks at a time. It was routine for my family and I, and many in my community, to rush to the emergency room when we were experiencing symptoms that didn’t cure with home remedies or over-the-counter medications, all while continuing to work and school. Truthfully, I’ve never seen my parents take a day off from work. My siblings and I never took a day off from school. 

For the first four years, I was in and out of the hospital, under the knife for full joint replacement surgeries of the hip and shoulder, and trying new and aggressive medications, including chemotherapy, to manage my symptoms. There is no cure; all lupus treatment is focused on managing the excruciatingly painful symptoms. I’ve experienced a wide range of symptoms over the years including migraines, severe fatigue, high blood pressure, high cholesterol, medication-induced diabetes, light sensitivity, joint pain, brain fog, and depression.

In my early years with Lupus, I struggled sharing how I was feeling and often felt very alone…