LIVING WITH CHRONIC ILLNESS

Part I

PODCASTS: ITUNES · GOOGLE
By Erica Lupinacci
Erica Lupinacci is the co-founder and Communications Director of Suffering the Silence, a 501(c)(3) nonprofit organization dedicated to leveraging the power of art, media, and storytelling to raise awareness for chronic illness. She has a Bachelor of Arts from Hampshire College, where she studied Public Health and Theatre. She was diagnosed with lupus at 18 and is dedicated to raising awareness for people who have felt silenced or alone because of their differences. Erica is an actor living in Los Angeles.
Living with Chronic Illness, Part I

As weird as it sounds, I always knew I would be sick. Even as a child, I felt like something was off. When I was growing up, I was definitely sick more often than other kids—I got pneumonia and strep throat a few too many times and missed a lot of school. It didn’t cause too much alarm until December of my sophomore year of high school when I suddenly found myself constantly exhausted, ridden with joint pain, fevers, and extreme weakness. For over six months, no one could tell me what was going on. I was passed from specialist to specialist and spent more time getting my blood drawn than I did in class.

After ruling out Lyme, Leukemia, parasites, and every rare disease my doctors could think of, we saw a rheumatologist who diagnosed me with Ankylosing Spondylitis and Fibromyalgia. I started anti-inflammatory drugs and physical therapy but still felt that it wasn’t the answer. I spiraled into a deep depression, and my psychiatrist added anxiety and ADD to my growing list of diagnoses. I was prescribed anti-depressants and Ritalin, losing enough weight to ignite rumors of an eating disorder. There were days when I felt totally fine and days when I couldn’t get out of bed. I fell behind in school, and my teachers and classmates didn't understand why. I was scared, overwhelmed, and completely lost. I was so unhappy that I would stay up late at night reading pro-suicide websites.

AFTER MY DIAGNOSIS, A FRIEND ASKED ME, “ARE YOU EVER MAD THAT YOU HAVE LUPUS?”

Eventually, my physical health began to improve, and I miraculously pulled myself out of my depression. I was relatively stable until my senior year when I had a back spasm during a rehearsal for my school’s musical. After an ER visit, I was treated with muscle relaxants, and the spasms stopped. A month later, I had another spasm that lasted three weeks. I also had a 103-degree fever, was wearing a neck brace, and could not breathe when lying down. Again, no doctor could tell me what was wrong until I saw a cardiologist who, after conducting a scan of my chest, rushed me to the hospital. The spasms were actually referred pain from the extreme inflammation of my heart and lungs that were now surrounded by an immense amount of fluid.

I spent the next week at New York Presbyterian Children’s Hospital, visited each day by the rheumatology, hematology, cardiology, and infectious disease teams who searched for a diagnosis. I spent my eighteenth birthday in my hospital bed, and the next day, my rheumatologist announced, with very little explanation or sensitivity, that I had Lupus. I flashed back my mom’s reaction to my original diagnosis, “Well at least it’s not something really scary like Lupus.” I knew nothing about the disease but felt immediate relief to finally have an answer, knowing that this had been in my body all along.

When I left the hospital two days later, I had been through huge IV doses of steroids and was taking 100 mg of Prednisone a day. My doctor mentioned that steroids could cause some weight gain and increased appetite. I gained 30 pounds in a month and a half, just in time for prom and graduation. I still have large stretch marks and scars on my thighs, torso, and arms that mortified me for years.

My first year of college, my immune system was so suppressed from my medications that I was sick with something new almost every month; from pneumonia to a rare eye infection my ophthalmologist had to look up because she had never seen it outside of a textbook. By my third year of school, I was in remission and finally was able to stop taking steroids. It was six months before I had my second flare up. I went back on the steroids, stabilized, and then flared again at Christmas. That cycle repeated for two years.

I WAS EMBARRASSED THAT I STRUGGLED TO WRITE MY THESIS, A TRUE PASSION PROJECT FOR ME, BECAUSE THERE WERE DAYS WHEN IT FELT LIKE TOO MUCH TO EVEN SIT UP AND TYPE.

After my diagnosis, a friend asked me, “Are you ever mad that you have Lupus?” I was taken aback because I had never seen it as an option. It was something I’d always seen as my future, and I was so grateful to have an actual, correct diagnosis. Having a name for it comforted me—I rarely complained and always found a way to speak of it in a positive light. Though I was very open about Lupus, always happy to explain and answer questions, I downplayed my struggles. But, as my heart problems continued to interrupt the teases of normalcy, it finally began to sink in what it meant to live with chronic illness.

My last semester of college, I spent the majority of my time in bed. This time, my heart wasn’t surrounded by fluid, and my blood tests were all normal. I didn’t need to take steroids. This was just, as my doctor described it: the nature of the disease.  And guess what? I was mad. I was mad that I couldn’t enjoy the end of my senior year, I was mad that I couldn’t do everything my friends were doing, I was tired of saying, “I can’t, I don’t feel well.”  I was embarrassed that I struggled to write my thesis, a true passion project for me, because there were days when it felt like too much to even sit up and type.

But still, I didn’t look sick. I still rarely look sick. I receive heated glares from parents with strollers who don’t understand that if I offered them my seat on the subway that day, I might not be able to hold myself up for the remainder of the ride. I see the eye rolls from real estate brokers when I tell them I can’t live in an apartment with anything above a two-floor walk-up. And even when people know I’m sick, it’s still a hard disease to understand. There’s a reason it’s called the “cruel mystery.”

For me, the lack of control is the most heartbreaking part of being chronically ill. It’s frustrating and frightening not to be able to predict when my flares will occur, and I worry about my future. I worry about maintaining a career, especially one as an actor when my health is so inconsistent. I worry about burdening my partner and family, paying for health insurance, and the disease stopping me from living my life the way I want.

I RECEIVE HEATED GLARES FROM PARENTS WITH STROLLERS WHO DON’T UNDERSTAND THAT IF I OFFERED THEM MY SEAT ON THE SUBWAY THAT DAY, I MIGHT NOT BE ABLE TO HOLD MYSELF UP FOR THE REMAINDER OF THE RIDE.

With that being said, I would never change what has happened to me. This disease has forced me to treat myself with the utmost care and love. I’ve learned to listen closely to my body and interpret its wants and needs, forming a connection with myself I didn’t know was possible. Most importantly, I’ve learned to truly trust and fight for myself, something I’ve struggled with my entire life. I know that I will always have bad days, so I strive to make the good ones great. Every day, I am trying to push myself to do the things that scare me because I know they end up being what I love the most.

Working on Suffering the Silence, connecting and meeting others with chronic illness & disability, has empowered and inspired me more than I can put into words. It makes me so happy to see others finding connection with people who can truly understand their experience. These communities have helped me to become more honest and open with myself about my own experience. I’m more comfortable speaking about the negative aspects of my illness, which has helped the people in my life better understand my experience and better support me. I am so grateful for this organization and those that share their stories with us and the world, helping to raise awareness and shine light on the true experience of illness.

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