Dancing With Chronic Illness

Hello beautiful dancers, artists, humans! I’ve decided to use this particular blog post to introduce myself (in a sense) as I am, in fact, the dancer living with chronic illness behind this blog. I want to walk you through from the beginning of my journey with chronic illness, as it has shaped me into the human and dancer I am today. It will also provide you with context for future blog posts on D.W.C.I. So grab your coffee/wine/etc and get ready to get real. I am not the type of *sick person* that sugar coats or always ‘stays positive’ like I am so often told to do by family, friends, doctors, and yes.. even strangers. Now, let me take you back to where it all started and when my life changed forever. Dramatic much?? But, it’s true.

I was just beginning my sophomore year as a dance major at The Boston Conservatory in 2012. It started out as a normal November evening. I was out to dinner with my classmates, and I began to feel some pain arise in my right wrist. I remember thinking, ‘Hmm that’s a weird type of hurt that I don’t recognize.. but maybe I put my weight on it weird in class earlier.’ I quickly brushed it off and tried to ignore the pain. The rest of the evening I clung to my wrist with my other hand, much like the way I treat my cup of coffee in the morning.. holding it close to my chest in an unrelenting grip. I went to bed that evening hoping it would resolve by morning, but quite the opposite followed. I woke in the middle of the night to what I can only describe as a pain so severe that it felt like a snake was constricting my wrist, while a blowtorch was being held to my skin. I tried taking ibuprofen, standing in the hot shower for hours, icing… NOTHING was working. I knew in my gut that something was deeply wrong, but it was about 3am and I wasn’t thinking clearly or rationally, thus decided to suffer through until a “more reasonable” hour. 

The next day, I immediately went to the extremely supportive and caring in-house physical therapists at the conservatory to seek some advice, to which they referred me to a sports medicine doctor. The sports medicine doctor took one look at my wrist and suggested I walk across the street to Boston Children’s Hospital. After waiting hours in the ER in extreme pain, when someone finally was able to check up on me, I was treated like I was the most ridiculous person on the planet for the amount of pain I was in for something that on the surface didn’t appear to be that significant (yet). I was given an icepack for the pain smh and was prescribed antibiotics for a presumed infection— my wrist was swollen, red, hot to the touch, and painful as hell. This was one of my first experiences of feeling true frustration with healthcare. I felt like I wasn’t being taken seriously or believed for how much pain I was in. I mean… an icepack.


Insert thought: I know that so many of us with Invisible Illness suffer through this kind of treatment from healthcare professionals every day. Whether it’s not being believed, to being viewed as untreatable because there’s ‘nothing wrong’ with our bloodwork.. this list goes on. I just want you to know that you’re not alone. I’ve seen countless doctors until I found the one that truly listened and was on my side. The whole process, let alone from being sick, is extremely exhausting and you can often find yourself seemingly doing their job. Iykyk. Now, I don’t want to come off as completely unappreciative or disrespectful. I am aware that there are many healthcare workers out there that care deeply about their work and patients and I’ve been fortunate enough to be treated by some of them. All I’m saying is that autoimmune illnesses and invisible illnesses are extremely difficult to treat because there’s still so much we don’t know or understand about them, which can put doctors in really difficult situations of not knowing what to do or how to communicate well because there doesn’t appear to be a cut and dry solution. There are also some doctors out there that are just straight up rude, demeaning, and completely unbothered by your pain. I’ve experienced both ends of the spectrum and I’m not the only one. And you honestly have no idea what it’s like unless you experience it yourself. But, I digress…


Back to the story! The next morning after my first round in the ER, I woke up to the same symptoms starting in my right foot to the point where I couldn’t walk. I had two amazing roommates that were my best friends through college, and bless their hearts, they helped me down probably seven flights of stairs because of course, our old apartment building didn’t have a functioning elevator. They helped me into a cab and took me back to the hospital. They waited in a private room with me in the ER while I scream cried, and I mean SCREAMED, out in pain for hours until finally the doctors administered morphine. I pleaded to one of my roommates to help me take my pants off, (yes, you read that right, some weird morphine high maybe??) while undoubtedly scarring my other roommate for life with my demonic yelling and cursing. I likely became the most interesting, and dare I say entertaining, patient the ER docs had seen in a while. An adult high on morphine, screaming out profanities, and boasting about how my pants were off in the middle of a children’s hospital. What. A. Shit. Show. I was wildly uncomfortable, feeling vulnerable AF, and afraid for my life. Truly living every dancer’s nightmare.


When I learned that I would be admitted to a room overnight, I called my family to update them with the unsettling news. I have a very close relationship with my grandparents and without them, my dance career would pretty much be nonexistent. So naturally, my Grandfather  hopped in the car as soon as he could and made his way from New Jersey to Boston, Massachusetts. The intricate details of the following days in the hospital are a bit fuzzy, but I do remember arriving to my hospital bed and the nurse had Dancing With The Stars playing on the TV for me.. which was a really sweet, simple act of kindness that has stuck with me to this day. I woke up later that evening with, no joke, 20 doctors standing over me. I suppose I was somewhat of a medical mystery! I was sent in for an MRI on my wrist, knee, and foot which meant that I would be in the tube for a total of 2.5 hours.. and let me tell you, it was NOT fun. Also, weirdest position to be laying in for that length of time! But when it was finished, I was so grateful to return to my room to have my Grandfather there to support me and keep me company through this overall terrifying experience. It felt like my worst fear was coming true. I lost control and it felt like my body was turning against me. I mean, it was literally attacking itself. I kept asking the doctors if I would ever dance again, and *trigger warning* I even threatened to take my own life if I was unable to continue dancing. Just when I felt like I was swimming in total darkness, the hospital brought in a rheumatologist to evaluate me. After days of feeling completely helpless, I received a diagnosis of Reactive Arthritis from alarming levels of Strep in my body. The months of treatment that followed were excruciating, and at times, absolutely hopeless. 

Timeline check-in: this all happened over the span of about a week in the beginning of November, and after spending a few days in the hospital, the symptoms spread to my right knee. My wrist looked like an inflated latex glove, my knee was the size of a small watermelon, and my foot could barely handle the weight of a blanket. So, at this point, the joints of the entire right side of my body were in scorching pain and I was unable to walk or use my right hand until about March. I had to take a leave of absence from college and return home to New Jersey, while still receiving treatment from my rheumatologist in Boston. My treatment began with oral methotrexate and prednisone, lower-risk methods that help treat Rheumatoid Arthritis symptoms for most people. Of course, this was not enough for my body to recover. I experienced little to no relief from this combination, so we moved on to more aggressive intravenous steroid treatments. Not only was the process extremely uncomfortable, but my face puffed up like a balloon as a reaction to the steroids, otherwise known as ‘moon face’. This was emotionally the most difficult time through my treatment journey. Not only was my face swollen, the steroids made me break out in the worst acne I’ve ever had and it stayed that way for months. I felt so insecure that I didn’t want to be seen on social media, out in public, or even around my extended family during the holidays. Friends from my hometown would ask to visit and even though I knew they would never judge me, I just couldn’t bear for them to see me that way. Being vulnerable around loved ones was a really tough pill to swallow, let alone my friends who always saw me at my strongest. I shut myself out from the world and I was honestly just extremely bitter and pissed off about my situation, so I didn’t really have the energy for company. 

When we realized that I wasn’t making any progress from the steroids and methotrexate combo, we resorted to the high-risk biologic, Enbrel. This medication is a TNF blocker, in other words, suppresses the immune system to keep it from mistakenly attacking healthy cells. This mediation is considered ‘high-risk’ because it lowers your ability to fight infections and there is an increased chance of developing certain cancers and lymphoma in children, teenagers, and adults. Another major downside? It’s a self-injectable that needed to be administered once per week. This typically isn’t a huge deal for people, but I grew up with a phobia of needles so this felt like my legit worst nightmare. But when I say I was desperate.. I would have literally tried anything to take the pain away. The benefits outweighed the risk of side effects for me, and it turned out to be the best treatment method for my body. I began to see significant improvement with my symptoms— the swelling was going down, pain was reducing, and I started to regain motor function in my joints. I continued my treatment with Physical Therapy, Occupational Therapy, and a Psychologist for a few months in order to fully regain the use of my hand, knee, and work on my mental health. My hand was affected the worst, I couldn’t open jars, write, or even brush my hair. I remember this one day before the Enbrel kicked in, I was sitting on the bathroom floor crying because my hair was tangled AF and it hurt too much for me to hold the brush. My mom came in and started brushing my hair, something she hadn’t done since I was younger when she would get me ready for dance recitals and competitions. I felt so defeated and the thought of regaining the use of my hand seemed so far-fetched. Looking back, I realize just how much I persevered and that gives me strength and hope for the future. If I went through something as horrible as that and not only survived, but recovered.. I can get through anything.


I was able to return to college to finish out the school year, with the support and graciousness of my colleagues and dance faculty. I wasn’t fully back to my dancing self yet— I was observing most of my classes for the first few weeks, but I was absolutely thrilled to slowly re-integrate myself into the conservatory routine. Some professors were more understanding than others: A big portion of our grade was based on attendance, and because I was still going to PT and OT, those appointments would often conflict with certain classes. Some of my grades suffered, but I was extremely grateful to the mentors who welcomed me back with open arms and supported me through one of the most difficult times of my life. It took months for me to regain the strength and flexibility I once had in my knee and hand. Aside from having Physical Therapy sessions and doing my own PT at home, yoga was my saving grace. This was my time to tune out all the noise and allow my body to just ‘be’ and I was able to really meet myself where my body was at in that moment. I was so eager to jump right back into classes, and when I was finally able to get through an entire class (with modifications, of course) it felt like my biggest accomplishment. I truly believe if I had never gotten sick, I would not appreciate my body as much as I do now. I began the personal practice of thanking my body every single day for allowing me to dance and for supporting me through the incredibly demanding art form of dance.

To be totally honest, if I ever decided to go back to school for my Master’s, I’d have one heck of a story to tell to explain why my grades were so low. So, it didn’t bother me much that I didn’t go on to graduate summa cum laude because I was much more appreciative of everything I had overcome. I persevered. It was not easy. There were a lot of tears and days sinking into the couch wondering if I would ever dance again. I would never wish this experience on anyone else, but I learned valuable lessons and was able to find light in a time of total darkness. Being sick taught me compassion, to be softer, love more, and never assume that I know everything about someone else’s situation. The dance world can be filled with judgement, assumption, exclusion, and unrealistic expectations of the body. I’m grateful that through my condition, I am able to offer a more inclusive perspective to the dance industry and help as many dancers as I can through their journeys.

This may sound like a ‘happy ending’ but I am sad to say, it’s far from the end. I later went on to have 3 knee surgeries for an injury that will eventually end my career, and I am still battling RA. My condition has progressed to Spondyloarthritis, which flares off and on, and for the last 2 years I’ve struggled to find a diagnosis for a mysterious illness that impacts my daily quality of life. I have episodes of severe lightheadedness to the point of fainting, among other accompanying symptoms that leave me bedridden for weeks to months. But, that story is for another blog post. I’ve been dancing through my chronic illness(es), holding onto the one thing that has always been my emotional release. Like I said, it hasn’t been easy by any means, but I am here. I am fighting. I am worthy of a fulfilling life. And so are you.