Hi, my name is Erica and I’m 23 years old. As weird as it sounds, I always knew I would be sick. Even as a child, I always felt like something was off. Growing up, I was definitely sick more than the other kids, I got pneumonia and strep throat a few too many times and remember missing a lot of school. Nothing that caused 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 other rare disease my doctors could think of, we saw a rheumatologist who diagnosed me with Arthritis and Fibromyalgia. I was put on anti-inflammatory drugs and started physical therapy but I still felt like there was something else going on. I spiraled into a deep depression and my psychiatrist added anxiety and ADD to my growing list of diagnoses. I started taking anti-depressants and Ritalin and lost enough weight to ignite rumors of an eating disorder. I fell behind in school and my teachers and fellow classmates couldn’t understand what was going on. There were days when I felt totally fine and days when I couldn’t get out of bed. I was scared, overwhelmed, and completely lost. I was so unhappy that I would stay up late at night reading pro-suicide websites.
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 rehearsal for my school’s musical. After an ER visit, I was treated with muscle relaxants and the spasm stopped. A month later, I had another one that lasted for three weeks. I was now running a 103-degree fever, wearing a neck brace, and it became increasingly hard to 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 Columbia Presbyterian Hospital in New York, 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 knew nothing about the disease except for my mom saying, “Well at least it’s not something really scary like Lupus” when I was originally diagnosed with arthritis. But in that moment, I felt nothing but relief to finally have an answer, knowing that this had been in my body all along.
When I left the hospital 2 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 a “moon face” and some weight gain. 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, to this day, mortify me every time I have to wear a bathing suit or someone sees them for the first time. I think the superficial scars of the disease are just easier to get upset about.
My first year of college, I couldn’t get through the day without an hour-long nap. My immune system was so suppressed from my various 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 actually seen it outside of a textbook. By my third year of school, I was in remission and was even taken off of the steroids for 6 months before I had my second flare up. I went back on the steroids, stabilized, and then flared again at Christmas. This cycle has repeated for the past two years.
About two years after my diagnosis, a friend asked me, “Are you ever mad that you have Lupus?” I was taken aback by the question because I had never seen it as an option. It was something I’d always seen as my future and was so grateful to have the actual 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 always downplayed my struggles. But as my heart problems continued to suddenly 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 2-floor walkup. 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”.
I’ve realized that what frustrates me the most is my lack of control. I have those few months where I take perfect care of myself and feel fantastic and then the infamous back pain begins. It’s frustrating and frightening not to be able to predict when my flares will occur and it makes me worry about my future. I worry about maintaining a career, especially one as an actor, when my health is so inconsistent. I worry about finding a partner who will be willing to deal with it all. I worry about my flares stopping me from living my life the way I want.
But still, 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 and interpret my body’s 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. I’m also incredibly lucky to have the support of my loved ones who help me stay confident as an advocate for the disease and myself.
I’ve known Allie for 10 years and am more impressed and inspired by her every day. Her clear vision and strength is palpable, yet she is one of the most modest and genuine people I’ve ever met. I couldn’t be more proud of the work she’s doing and am so honored to be a part of it. Most of all, I thank her for helping me to break my own silence, encouraging me to talk about the bad parts of my experience for the first time. Thank you, Allie.