Being Chronically “Elle”

“Come what come may, time and the hour runs through the roughest day.”

William Shakespeare

My name is Eleanor Ciampi, and I’m 20 years old. In March of 2017, I was in a car accident. I was okay, a few bumps and bruises, a mark from my seatbelt, and a separated shoulder. It was nothing that I couldn’t heal from, or so I thought. Two months later in May, fully healed from the accident, my arm no longer in a sling, a whole new set of symptoms started. My joints hurt so bad I had trouble going up and down stairs, and I was so tired that I felt the intense urge to sleep all day, the kind of tired that you could feel in your bones. My mom made an appointment with my pediatrician for the end of the month. I remember sitting on the exam table, waiting for my doctor, I was hoping, praying that I would be okay, that I would be believed, that my joint pain was nothing more than the wear and tear from all my years as a competitive gymnast that has bothered me for half of my life. My doctor thought that I was just tired, or maybe I could be depressed. Because apparently depression is the only reason that someone could be in physical pain, according to the medical community. She sent me for blood work, just “a precaution” she said. My mom got a call a week later saying I had titers for Lupus, and that I needed to see a rheumatologist as soon as possible. I had to wait for 2 months for my appointment, the longest, scariest, most stressful 2 months of my life. I cried in the office of the rheumatologist, that first appointment. I was so scared, so vulnerable. I don’t know what I would have done without my mom and sister. A lot of blood work, tests, and a colonoscopy later, I was diagnosed with Lupus in October of 2017. I’m one of the lucky ones, as crazy as that sounds. Most people suffer for years before being diagnosed, the average time is 3-5 years. I was diagnosed in less than 6 months. I was so relieved, I was started on a simple immunosuppressant, and I felt so hopeful. In January of 2018, I was diagnosed with CREST Syndrome, a very rare autoimmune disease. I tried to stay positive, but the medicine wasn’t working, and I was losing hope quickly. In May of 2018, I was diagnosed with Mixed Connective Tissue Disease, another very rare autoimmune/connective tissue disease. The doctors kept telling me to give the medicine time, “you have to be patient” they said. It’s hard to be patient when your pain is affecting every single aspect of your life. In July 2018, I ended up in the hospital with the worst flare I have ever had. I’ve never felt more defeated than I did that day sitting in the hospital bed. I spent the entire month of July in a flare, with no answers from any doctor. In September I started a new immunosuppressant, Methotrexate, which is a chemo drug. The first month I felt horrible, the side effects were so bad I couldn’t pick my head up off of the couch. As my body became used to it, so did I. In the worst flares of my life, I wasn’t able to use my hands, the joints were so swollen. I couldn’t write, brush my hair, or get dressed without help. After 6 months of Methotrexate, my hands have never felt or looked better, and I’m truly lucky. It’s not easy to be chronically ill. It’s frustrating, scary, sad, and hard. But I will never let my illnesses win, I will never let them stop me. This is my journey, my messy, imperfect, different-from-everyone-else journey. This is my beautiful life, and I’m living it everyday chronically “elle”.

Purple is the color for Lupus awareness.