By Marisa Zeppieri-Caruana, as told to Stephanie Watson
I caught the beauty pageant bug in my late teens. As I matured and got married, I began competing in Mrs. Pageants (in 2015, I was titled Mrs. New York Universal). Whenever I stood on stage, dressed up and looking my best, people would say, "You look great, so you must be feeling fine." Inside I was far from fine. I was dealing with pain, severe fatigue, and other symptoms every day of my life.
That’s what life with an invisible illness is like. It’s hard for people who aren’t familiar with lupus to understand that you can look perfectly fine on the outside, while you're suffering on the inside.
My official story with lupus starts in 2001, but my real story began years earlier. I had very clear symptoms at eight years old. I was getting really bad rashes from the sun, severe fatigue, joint pain, weird fevers, and nose and mouth sores. For an eight year old, these were odd symptoms. This was in the 1980s, when doctors weren’t really testing for lupus the way they are today. My doctors brushed off my symptoms as a virus, or maybe asthma and allergies.
In 2001, when I was 23, I was hit by a truck -- both figuratively, and literally. I was crossing the street in Fort Lauderdale, Florida, when I was struck by a drunk driver. I spent a year in rehabilitation recovering from severe internal injuries, including numerous liver lacerations and internal bleeding, a head injury, and multiple fractures. I had a small stroke while in recovery, and a few days afterward, the strange symptoms I experienced in my childhood suddenly reemerged. I spiked fevers without any source of infection. I developed rashes and pain.
The hospital sent in an infectious disease specialist and a rheumatologist to examine me. Within three weeks, they had an answer to my symptoms: systemic lupus erythematosus.
The rheumatologist who diagnosed me gave me a 20-minute overview of the disease. It went something like, "You have this disease, you have to take this medicine, and learn to live with it - that’s it." After that conversation, I still wasn’t aware of what lupus really was and how it would affect my life; I had no idea what I was in for.
When I was young, my dream was to become a travel nurse and join the Mercy Ships. I spent four years in school, working toward that goal. I also love to travel. Because of lupus, I had to give up nursing and I couldn’t travel at all. In a sense, it felt like everything I had worked so hard for was taken away from me in an instant.
I missed out on most of my 20s and part of my 30s. While my friends were getting married and having children, I was learning how to deal with my illness. I could barely get out of bed. I was in and out of the hospital, and I no longer had a career. Sometimes I wondered, "Who is going to want to date me, much less marry me?"
This disease has infiltrated every area of my life -- my job, my relationships, my mental health. My everyday lupus symptoms alone are enough to make me feel miserable. I get fevers almost every day. I have severe fatigue, pain, and rashes. The fevers and fatigue are probably the two most frustrating symptoms. It’s like having a flu that never gets better. The symptoms make almost every day a challenge, and yet I’m expected to function and do everything that able-bodied people are doing.
Then there are the major symptom flares. One put me in the hospital for months. Another left me wheelchair-bound for just over a year. When I was 24, I had a really bad flare and a couple of mini-strokes. My muscles wasted away. I dropped down to 88 pounds. I was so weak that I needed help taking a shower, getting dressed, and cooking. Just walking from my bedroom to the shower left me completely exhausted. After going to school to become a nurse, I needed a nurse to take care of me every day.
Despite these setbacks, I’m adamant about living my life to the fullest. I still travel, spend time with friends and family, and go to events. These activities just take a little more planning than the average person, and I have to schedule rest time when I do in fact travel. Though I know lupus might foil my plans, I make them anyway.
The Illness No One Can See
When you live with a chronic illness, it can be difficult for people outside of close friends and family to really understand what you struggle with on a daily basis.. Even some family members dismissed my symptoms until I went on chemotherapy. Then all of a sudden, once they saw me as a chemo patient, they took my disease more seriously. It was frustrating in a way, because I’d been trying to tell them all along how serious lupus can be.
Strangers can be especially hurtful. There's a lot of misunderstanding and ignorance, often tied to our outer appearance. One day when my husband was pushing me in my wheelchair, a little girl nearby asked her mother, "Why is that girl in a wheelchair?" The mother gave me a disdainful look and said, "Ugh, she just looks lazy to me."
Social media can be especially challenging for people with chronic illnesses. On one hand it can connect us to other warriors who are inspirational and living their best life despite illness, but it can also reveal a lot of people’s misconceptions and judgements. I’ve had comments on my Instagram page like, "You look like you’re having fun and living it up, so you must not really be sick." These comments can sting and bring on feelings of frustration. People see the rare pictures of me scuba diving or hiking, but what they don't see is the week-long recovery that I typically experience afterward.
People like me with invisible illnesses walk a very fine line. I want to enjoy my life, but just because I'm not bringing up my lupus symptoms all the time doesn't mean I'm not struggling. I know there are going to be people out there who don't get it. And that is okay with me – those aren’t “my people.”
While I don't expect people to understand everything about lupus, they should at least educate themselves before passing judgement. Reach out to the people in your life who have a chronic illness. Ask them, "How are you feeling today? Is there something I can do for you?" Offer to do specific things for them, like driving them to the doctor's office or picking up a meal. A little bit of support and kindness go a long way. It's nice to know that people care, and that they see me.
Lupus has taken a lot from me, but it's also given me things I never expected. It's actually brought about some of the most incredible parts of my life. Because I had to grow up really fast, I have a much different perspective on things than most people my age.
Being stuck in the hospital and at home for so many years led to my writing career. I always loved to write when I was younger. Having lupus and being bedbound for long seasons gave me the time to explore my talent. I've had an amazing 12-year journalism career. I wrote a book in 2013 titled, Lupus--Real Life, Patients, Talk, and my memoir, Chronically Fabulous, from Broadleaf Books will debut in 2021.
I also started my own nonprofit organization, LupusChick, which reaches a half-million people each month. We give out college scholarships and do outreach. I get to do a lot of public speaking and encourage others who are diagnosed with a chronic illness to leave their mark on this world. It has been amazing to meet people all over the world and share the things that worked for me.
On social media, people living with chronic illness often call themselves “warriors”, and I don’t think there is a more appropriate name. Even with immense struggles and challenges ahead of us, we keep pushing forward and always persevere.
Marisa Zeppieri-Caruana is a speaker, journalist, and Founder of LupusChick.com, an award-winning website and nonprofit based out of New York. Her memoir, Chronically Fabulous, will debut in May of 2021 by Broadleaf Books. Connect with her on Instagram or Facebook.