For some being fifteen means worrying about what you’re going to wear to the school dance, wondering who is going to be your ride to soccer practice, or thinking about that math test you forgot to study for. For others, fifteen comes with having to face a diagnosis that confirms some of your worst fears.
At the age of fifteen I was diagnosed with fibromyalgia. The Mayo Clinic characterizes fibromyalgia as “…a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” With one word I went from being a high functioning student and dancer to having to reevaluate my everyday life. A single word opened my eyes to the pain I had been trying to subdue for so long.
All of this being said, I do not have your typical fibromyalgia diagnosis story. For many a diagnosis comes after a traumatic event and for many others it comes after years of prolonged pain. I am an anomaly to what is becoming a standard, I was diagnosed within weeks of the start of my pain. No specific trauma or years of suffering, but a “simple” transfer to a rheumatologist with my symptoms is all it took.
As a dancer, I was accustomed to the usual wear and tear that my body underwent at least 5 days a week for hours on end. Bruises, muscle strains, and exhaustion were not out of the ordinary, in fact they were almost a comfort because it meant that I had given it my all during class. But the aches started to become deeper and more frequent, the exhaustion more grueling, and perhaps the biggest red flag of all was that my arms had become painful to the touch.
After hearing my symptoms, my doctor referred me to a rheumatologist who would then diagnose my condition. Even though I had to begin to change my daily habits and the way I lived my days, I continued to dance for months after my diagnosis. I may have been in pain, but it was never enough to stop me from doing what I loved. Through the spring I continued to do well in school and as a sophomore, college naturally became a topic of discussion. I changed studios in the hopes of furthering my dance training before auditioning for college programs, but not even a week into the fall season I had a day that would change my future forever.
I was in a ballet class, we had done barre work and moved on to the center portion of class. Maybe two combinations in I started to feel fatigued and the pain began to set in, it was like a weight was suddenly on my back and I was struggling through the choreography. When it became too much I sat down, becoming upset that my body was taking over without giving me a choice. I remained seated for the rest of class and upon my arrival home took up residency on the couch. What I did not know in that moment was that over the next week and a half I could not get off of the couch. My body had suddenly shut down. I slept for hours on hours, my entire body was in immense pain, and I walked like an accident victim.
You’re probably asking “What changed?” and I have been trying to answer that question for the last 4 years, but I have no answer. No doctor could figure out what changed, and after time I attempted to return to school. I would try to walk to class but it took me at least an extra five minutes to get anywhere. Eventually it started to gradually subside but for nearly two years I thought that I would never dance again. The pain and exhaustion never reached a point where it was mild enough to let me continue on towards the future I had dreamed of.
After a couple months I began to become fed up with my body and was willing to try anything that a doctor thought might help. I went to a chiropractor and within thirty seconds of her trying to align my neck I was sobbing and nearly screaming in pain. I went to a holistic healer who set me up with a large range of supplements and followed a new diet she prescribed for a week before I couldn’t take it anymore. (It was a sort of no grains, no sugars-even natural, type of diet. I could hardly eat anything.) I went gluten-free for three months. I tried multiple medications. I tried taking no medication. I went to occupational therapy. I went to physical therapy. I even did aquatic therapy. I researched doctors all over the country.
*If you are still reading, please leave me a comment.*
After some time, I found a pediatric rheumatologist who would eventually begin to put Humpty Dumpty back together. Over the course of those two years, I saw her every 3-6 months. I started doing musical theater again, something I was always passionate about but was more feasible for my body than the dance I longed for. You might say that I was trying to fill a large void, but still getting to perform in any capacity I could is probably ultimately what got me through those two years.
At some point it became apparent that my dreams of going to college for dance were no longer realistic and I had to suddenly reconfigure a future I had been planning for 15 years. To say that this was devastating would be an understatement, but I had no choice. I had taken numerous art classes in school and decided that I wanted to go to college for something related to graphic design.
Even my college visits were not average; I had to decide if I could handle the long walk to classes every day, or how many flights of stairs were in the dorms, things that would become problematic if I had a bad day. After a lot of consideration I finally made my decision: Rochester Institute of Technology. I found a roommate, chose my dorm, everything and then my roommate asked if I was planning on joining the dance company.
This was my chance. My one shot to see if my body would be able to dance again; to seriously dance again. But what was I supposed to do if I found out that I could never actually dance again? I would never be able to handle losing the thing i had devoted my life to for a second time. Upon my arrival at college I decided that I couldn’t let this fear hold me back from what might be true joy and happiness and I am happy to say that a year and a half later I am now the president of that dance company. Every week I get to do the thing that I thought I had lost forever.
I wish more than anything that I could go back and tell that fifteen year old that things may change, but there is a reason for everything. Things may not happen the way we plan for them to, but maybe this is where we were meant to be all along.