“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 double-edged 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 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 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 concrete answers going against her through her teenage and into her college years, Marisa’s innate fighter spirit kept her going. She earned an art degree and went back to school for Nursing. Her dream was to be a travel nurse and apply for the Mercy Ships upon graduation. “I knew from around seven years old that I wanted to help people when I grew up – and for me, helping meant I was going to be a doctor. It’s all I thought about. But with my body failing constantly, I didn’t think I could survive medical school. So after watching my best friend’s mother succeed in a nursing career, I decided it was the right choice for me. I dreamed about the Mercy Ships and traveling the globe helping children with cleft palate and other health conditions.”
The top-scoring student in her Nursing class, Marisa tutored her classmates in Math and Chemistry to earn extra money in college. And just as she was about to cross the finish line of her goal and graduate, her life changed in a matter of seconds.
“I remember the day. It was a beautiful April Sunday evening in Fort Lauderdale. We had an afternoon rain shower and those always create a sunset to remember. After running errands and working, I headed to my car and immediately something seemed off. I could hear a vehicle moving at a very high speed. Drivers speeding wasn’t out of place in South Florida, so for a second or two I didn’t think much of it. But then the sound seemed very close to me and when I turned my head to determine where the sound was coming from, I saw a black pick up truck barreling toward me at a high speed,” she tells.
Possible Pull Quote -She tried to outrun the Ford Ranger but there was no outrunning a 3,000 pound pick up truck that was traveling around 50 mph.
She tried to outrun the Ford Ranger but there was no outrunning a 3,000 pound pick up truck that was traveling around 50 mph. “I remember up until the moment of impact. And that’s where my mind goes blank. I think my brain doesn’t allow me to remember that moment because of how traumatic it was. What I remember next was lying in a patch of grass, bleeding from the top of my head, unable to move, and people gathering around me,” she shares. “The next 48 hours, I only remember bits and pieces but something that has stayed with me all of these years is the trauma surgeon at the hospital telling my mother that they didn’t expect me to make it until morning, and if I did, he would have a better idea of my prognosis and journey ahead. I was determined not to die when I heard that.”
At just 23 years of age, being in that place at that moment changed Marisa’s life forever. Between broken ribs, a lacerated liver, internal bleeding and a head injury, she would spend the next year of her life in the hospital, rehab and then recovering at home from her injuries. “My nursing career died in that moment. Everything I worked for – gone. And being hit, later finding out by a drunk driver, was just the beginning.” What Marisa didn’t know at the time was that triggers, such as physical injury and trauma, or severe illness, can spur on autoimmune symptoms in the body. “A few weeks into my recovery at the hospital, it was like all of the symptoms I would get randomly as a child, all decided to show up at the exact same time. Suddenly, I had fevers and rashes and pain, and then, out of nowhere, I had a small stroke. The first of five,” she recalls. “The blessing in this scenario was that I was under the care of so many doctors, and soon enough I had Neuro, Infectious Disease and Rheumatology at my bedside running every test in the world. Tests that really should have been done 15 years prior.”
In just under three weeks, Marisa and her family had an answer to decades of symptoms – Systemic Lupus. “I could barely pronounce the term let alone know what I was about to be up against. I was still trying to process being run over by a truck and healing from those injuries. It was all so overwhelming and I remember experiencing my first feelings of anxiety,” she explains. “Nighttimes at the hospital were the worst for me. I was alone in my own room in the Trauma Intensive Care Unit, and because I had the liver lacerations and internal bleeding, I had to lie flat 24 hours a day so no pressure was put on the organ. I was in excruciating pain, unable to do anything for myself. So all of my time was looking at the ceiling, just thinking about my life. And it was in that season that I started talking to God.”
Like many in this type of life-altering experience, Marisa started questioning her life and why these things were happening. “I had a lot of emotions and a lot to say to God in the beginning. To be honest, at first, I was angry. I felt like I had suffered since I was young, and now after working so hard, everything was taken from me – my health, my independence and ability to walk, my career. It’s hard for me to admit today but there were nights in that room that I would cry and yell and beg God to just let me die in my sleep. But sure enough, every morning, I would wake up. God kept giving me another chance every single day. Even though I begged Him otherwise.”
In time, Marisa shares, the anger and frustration in her conversations with God transitioned into more of a curiosity about what she was meant to do, having been spared from an event that surely could have ended her life. “I feel like those were the moments my path started to veer off into a new direction. Over that next year, I had so many conversations and prayer time with God. I still had the desire in my heart to help people, but I just didn’t know how if Nursing was no longer in the cards for me.”
Over the next few years, Marisa made great strides in her recovery and started to get a better handle on what living with a chronic illness like Lupus meant. “I hit some really rough patches with Lupus after getting out of the hospital. There were many ups and downs trying to navigate which medications worked for me, I wound up having over 30 hospitalizations in just a few years, had a blood clot and a brain aneurysm, and even wound up back in the wheelchair for almost a year at once point,” she adds.
Even with the uncertainty of the day to day because of Lupus, Marisa continued to press on. “I know God gave me a love for people, as well as a love for writing. And, having so much time in hospital beds or my bed at home, I began to write again. In those quiet moments, He helped me rekindle that old love of sharing my thoughts on paper.”
Not only did Marisa rekindle her love for writing, by her 30th birthday, Marisa became a health journalist and would go on to work for Gannett, AlJazeera, Christianity Today Magazine, HuffPost and many other media outlets. “At the same time my writing career took off, I had this dream about creating a space for people with chronic illness to gather. It just happened to coincide with the invent of blogs. So, I built a small blog – which back then was very limited – and I created a space where people with Lupus and other chronic illness could connect with one another and share their stories, tips, insights and more.”
And that is how LupusChick was started.
From a small three page blog site, LupusChick has grown into a nonprofit and online social community that reaches over 400K people per month who live with autoimmune and chronic/invisible illnesses. “I envisioned this place that offered resources, out of the box solutions you maybe weren’t getting at your doctor’s office, real life experiences and tangible help – all of the things me and my mother needed when I young but had no access too. And that’s what I created through LupusChick. And, it filled that desire within me to help people, it just looked different than what I originally envisioned,” states Zeppieri.
And LupusChick doesn’t stop there; one of the main mission’s of the nonprofit is to help people diagnosed with Lupus pay for schooling. “One of the things I come across over and over again are people in their 30s to 50s getting diagnosed and being unable to return to the job they were originally trained in because of their medical condition. Or, I meet young people with Lupus who aren’t sure how to financially pay for college, housing and medical treatments. The average annual medical costs for a Lupus patient is around $55,000. And so, I started our college stipend program.”
Today, the LupusChick College Stipend Program has given away 15 partial college scholarships funded by donors or by Marisa and her husband. “We’ve awarded these to men and women of all different ages, and we don’t limit it only to people in universities. We need to be realistic when it comes to someone with chronic illness – they are most likely not going to be able to be in classrooms full time, which is why we also allow those in online certification or technical programs to apply,” she adds.
In addition to college stipends, LupusChick’s social media platforms and website also offer those with chronic illness a plethora of information on topics that can help with everyday life whether its mobility tips, diet and wellness information, products that can help with activities of daily living, upcoming seminars or conferences and so much more. The community has inspired and helped so many, Lady Gaga – who has family personally impacted by the disease – featured the LupusChick story as Chapter 35 in her recently published anthology, CHANNEL KINDNESS.
And speaking of books, Marisa marked the 20th anniversary of her diagnosis with something special – her memoir, CHRONICALLY FABULOUS. “I’ve always loved reading about people’s lives- truth is truly stranger than fiction. And I knew early on I would eventually write a book. And so I took all of the things I have learned over the years, things that have helped me heal on some level, and I turned it into a story line that could help anyone who is struggling, whether they have a diagnosis, or trauma, a loss, etc. The themes in Chronically Fabulous are about hope, finding your purpose, recognizing the traumas in our life and what the steps are to begin the healing process, and discovering your faith journey, among others. Hitting a hard season in life can make someone feel like they are completely alone and hopeless, and my goal with this book is to let them know we can get through hard seasons together.”
The book also includes special recipes from her childhood after each chapter. “Being so sick growing up, I spent most of my days at my grandparent’s house while my mom worked. They were two of the most incredible people I’ve had the privilege of knowing. My grandmother started cooking at 7 am each morning. She would share stories of hard times like the depression and my grandfather going off to war, and she fueled my love for cooking and discovering how we can help our bodies through food. And because diet and nutrition have been integral in my healing journey, having her stories and insights in the book was such an important piece that couldn’t be left out. Even though she has passed away, her stories live on to help others.”
Between writing books, managing a nonprofit, and speaking at various conferences and events throughout the years, one may wonder what level of rest and self-care Marisa implements in her life in order to better manage her disease. “Rest is crucial for me to function – in a way that may be difficult for a healthy person to understand. There are some good days, and then out of nowhere, at least once or twice a week, I have days that my body lets me know immediately upon waking that I am not moving from bed that day. This has probably been one of the hardest things for me to accept because I am a Type A, and have a long list of goals and to-do’s each day,” she shares. “But over time, I’ve learned, my body fights for me daily and allows me to do all of the things I set my mind to when I am properly rested and nourished (through food, prayer, self care, hobbies, etc.). So I look at these as more recharge days and try to focus on the fact that my body is working so hard to keep my alive, the least I can do is allow her to get the rest she needs.”
Since the release of CHRONICALLY FABULOUS in May of 2021, Marisa took an extended period of time off – much needed after the three year journey of traditionally publishing a book. “It had been a dream to get a traditional book deal and get that memoir out on shelves. And after that became a reality, I made a commitment to myself to take a few months of quiet time to allow my body to relax and give God space and time to help me see which direction I needed to move in next. And He didn’t disappoint.”
Started in Fall of 21, Marisa and her mother started BaliMoonJewels.com, a jewelry boutique with a Shop For Good mission. “Getting funding for the college stipends has always been a difficult endeavor. Most people want to support the big name lupus organizations – not the smaller nonprofits. Now with Bali moon Jewels, a portion of every sale is put into our college stipend fund so we can continue tangibly helping people in need. So, people can find gorgeous fashion jewelry and know they are actually helping someone at the same time!”
When asked if there is one thing she would want people to take away when looking at her life or hearing her story, Marisa shares, “I want people to know just how big of a difference one human can make in this world. Often times, we think, ‘Im just one person, what can I really do?’ Think about how one small match can literally begin a wildfire. Find your passion, pray and ask about your purpose. Ask others what you are good at. Reflect on what you spend most of your time on, or what you enjoy doing. It’s in all of these things that you find giftings that are ultimately tied to your purpose. But it isn’t enough to know it – you have to then act on it. And once you act on it, I think you’ll be blown away at the difference you can make in the lives of others.”
Marisa currently lives in Rochester with her husband, mother and rescued terrier, Bogey. Learn more about her at www.LupusChick.com or on Instagram @lupuschickofficial and @balimoonjewels — Read the first chapter of CHRONICALLY FABULOUS here.
Marisa Zeppieri-Caruana
Chronically Fabulous is available now!
Work with me @MarisaZeppieri.com
Founder, LupusChick.com
