{ SHIFT+CONTROL } } { WOMAN WHO INSPIRES
YOU MARISA ARE ENOUGH. ZEPPIERI BY NICOLE HEROUX WILLIAMS I PHOTOS BY BIANCA SNOW BY NSP STUDIO
“You look fabulous!” It’s a phrase we hear over and over again in life - one that can be considered innocuous and complimentary. But for someone living with a chronic or invisible illness, this dreaded phrase can be seem like a doubleedged sword. “There is such a fine line in our society of what someone who is sick or diagnosed with an illness should ‘look like,” shares Marisa Zeppieri, someone who has been living with multiple chronic illnesses since she was an infant. “If you look too sick, you get stares and questions about being contagious. You can be ridiculed for not ‘doing something with yourself’ or measuring up to what people think you should look like. And on the other side of the coin, if you look good, people question the validity of your illness and its severity. There is no happy medium between the two.” When you meet Marisa for the first time, you most likely wouldn’t assume she is chronically ill. The former pageant queen and model uses the makeup, skin care and lighting tricks and techniques she learned over the years to help her put her best foot forward when she is speaking on stage or doing a live video on social media. But behind the lights and makeup, tailored clothes and smile, there’s a story most people couldn’t imagine. “I remember growing up and my mom 30
telling me I was the most perfect baby… or at least it seemed. She couldn’t believe that even as a newborn I would start off this life with so many health issues,” Zeppieri begins. “It started with allergies to breastmilk and every substitute, and then an asthma attack that almost took my life. Over time, all of these strange autoimmune related issues kept building
one on top of the other. I think as a young mother, my mom was confused and neglected by the medical system.” Zeppieri explained how growing up in the early 80s, her family received very little input or answers as to why a variety of autoimmune related issues were happening in her body. Brushed off
CENTRAL NY WOMAN ONLINE : FEBRUARY/MARCH EDITION 2022
as delicate and fragile, extensive testing was never done, and instead the family was often turned away by doctors with a care plan that just included rest. “I was the oddball of my group of friends growing up. I was the only one who needed two naps a day, was allergic to sunlight, always had strange rashes or sores, relentless fevers, and was constantly hospitalized ,missing weeks of school because of lung infections and severe body pain. At 8 years old, this wasn’t normal. But over and over again, doctors missed it.” Today when you speak to Zeppieri, there is a bittersweet tone that questions what path her life might have taken, and how much suffering may have been avoided, if someone in the medical community had gone the extra mile and dove deeper into her symptoms. At the age of 8, she had clear signs of Systemic Lupus, a chronic, inflammatory autoimmune disease that can affects the lungs, brain, heart, kidneys and blood of patients. Lupus can range from mild to fatal, and currently there is no cure. Some of the most common symptoms at the time of diagnosis are rashes, sun sensitivity, fatigue, fevers, rashes, blood issues, and muscle/joint pain. Lupus can range from mild to fatal, and currently there is no cure. Even with daily symptoms and no
