Op-ed | How Lupus has taught me to Lead

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May is Lupus Awareness Month.
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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 and hopeless. It was in the early years that I realized why it was uncomfortable and tough to share what I was going through. In my family and our broader community, there were very few conversations about pain, illness, and disability. Talking about being sick and disabled was stigmatized. My parents also spoke Bangla, and while I could communicate with them, I had very limited Bangla vocabulary to describe my pains. I knew that I couldn’t be the only one confronting a myriad of health issues paired with navigating our City’s tricky services and costly health care system. I began to write about Lupus and founded the Muslim Writers’ Collective, where I’d perform on stages in rooms with young Muslim peers, on living life with Lupus as a Brooklyn-born first-generation Bangladeshi Muslim girl.  

I’ve shared my story time and time again on social media, on the campaign trail, and more than once in the Council Chamber. I share openly so people understand why I might be a little slower up and down the stairs and to let people know why I’m in the fight to deliver a caring City. While the early days with Lupus were hard and forced me to practice grit and compassion toward myself, it’s why I have the radical courage to fight so hard for accessible transit, language justice, universal healthcare, workplace protections, comprehensive reproductive care, and am committed to building a City that serves everyone, including our immigrant, disabled, and working-class neighbors. 

It is an honor to co-sponsor Resolution 550 with the indefatigable Bronx Borough President Vanessa Gibson and celebrate May as Lupus Awareness Month in our City. She has been an outspoken champion on this issue since her time in the state legislature and is a steadfast ally in helping so many in her community navigate the complicated health challenges far too many women of color face on a daily basis. With the City Council passing this resolution today, I’m so proud to see our City recognize its commitment to all those living with Lupus and ensure our stories are on a citywide platform to encourage more research about this illness. As a Lupus warrior, I know there is so much more for this City to do to guarantee our joy, and I am determined and hopeful to keep going.

Shahana Hanif is a New York City Council Member representing Brooklyn’s 39th district.