Dancing with Dysautonomia.
My Story
By, Corri DeFazio
“It is a gift to be able to stand up and brush your teeth every morning. It’s a gift to be able to go holiday gift shopping for your family, and it’s a gift to do all of the things that you love to do.”
My name is Corri DeFazio. I’m sixteen years old and I’m about to start my junior year of high school in Virginia. My story starts in Arizona, where I lived the first eleven years of my life. I was always an energetic and ambitious child, but my struggles presented themselves early on. I was diagnosed with ADHD and sensory issues at a young age, and I began to have physical symptoms due to my anxiety. I always had a lot of friends and I was happy emotionally, but I knew that there was something physically wrong with me. I started having stomach issues frequently in elementary school, but my parents and I simply assumed it was psychosomatic and related to my anxiety about going to school. There wasn’t any reason that I hated going to school, I just knew I did. I would avoid going to school by pretending I was sick, and it even got to the point where I would say I threw up at school just so I could go home early. I knew I didn’t feel well, but it wasn’t a cold or flu.
In the summer of 2017, my family and I packed up our things and moved to Richmond, Virginia to be closer to my mom’s parents as they grew older. As we got settled in our new home, I became really depressed and I lost a lot of my personality and felt like a ball of anxiety. I hated visiting family because we would always go on hikes or shopping and I was exhausted all the time. Around this time was when I started becoming irritable in situations where I’d have to be up for an extended period of time, or do any physical activity outside of my dance classes and rehearsals.
Dancing has always been a big part of my life. I started dance lessons when I was three years old, so this is my thirteenth year of dancing. I started taking Ballet, Jazz, Hip-Hop, and Contemporary as a young child, but when I moved to Virginia I really found my passion for Contemporary and Modern dance. My energy levels were extremely low, my mood was constantly fluctuating and my physical symptoms skyrocketed. When I started feeling my first cluster of symptoms, I brushed them off, thinking they were related to my anxiety and depression. I really had a hard time keeping up with my conditioning classes for dance because I was living with these symptoms and no one could see what I was going through. My mental health started deteriorating when I felt the pressure of trying to keep up with my older sister, who was also a competitive dancer. I was really hard on myself- I thought that everyone around me viewed me as lazy because I couldn’t keep up with exercise and I wasn’t improving.
In the winter of 2021, my physical state became the worst it has ever been. I slowly started missing more and more days of school, which was very abnormal for me because I typically had perfect attendance. I also started missing dance classes which is not something I do very often at all. On paper, there was nothing physically wrong with me. I felt like I was losing my mind because I always felt sick. By the end of January, my mom convinced me to go see my doctor when I was too sick to go to school for multiple days. I was struggling in all of my classes as it was challenging for me to write more than one or two sentences at a time. I was having an especially hard time with my art class. I’ve been passionate about art for my entire life but over the past year, I started hating my art class because I wasn’t strong enough to complete my assignments due to tremors and loss of fine motor skills.
We started talking about my symptoms with my doctor and in a matter of minutes, she had me doing a tilt-table test. She asked me if I get enough sleep and I responded that I sleep 8-10 hours every night but I’m still constantly tired. She also asked if I keep up with my hydration and I answered that I always make sure to have water near me. That day, she diagnosed me with Postural Orthostatic Tachycardia Syndrome (PoTS). I’m really lucky because my doctor also happens to have PoTS, so she was able to explain my condition to me on a more personal level. PoTS comes with any number of excruciating symptoms, but the ones that primarily bother me are intense fatigue, brain fog, and headaches. Since I was diagnosed, I can't remember a day where I haven’t experienced any symptoms. I have a specific type of PoTS where I rarely ever come to a full faint, which I’m very grateful for because fainting is never fun. I do, however, feel like my suffering is more invisible because I’m not fainting as often as others with PoTS.
My doctor and I were talking about coping mechanisms and accommodations for my daily life with an intense dance training schedule and school. I became great friends with my school nurse and started spending a lot of my time doing schoolwork, eating, and resting on a cot in the school clinic. My school nurse has really helped me to be more confident when I’m advocating for what I need. I have learned that I don’t have to apologize to anyone for asking for what I need.
At school, it can be really hard to ask for help because you don’t want to look like a trainwreck to all of the other students. I have been denied accommodations on many occasions, but I made the decision to leave the classroom to get help whether I have permission or not. Teachers have a lot of control over how safe you feel at school. When I’m in an unsupportive environment, my physical symptoms are exacerbated and my nervous system shuts down. In the first few months of having my diagnosis, I became really distant from most of my friends and teachers, and I started focusing a lot on myself and my own health journey. I’m only sixteen and I know that my journey has only just begun, which is scary. In a way, I am grateful to be diagnosed so early on in life so I’m able to have closure by having a name for what I’m going through. I’ve only been diagnosed for eight months at this point and I’ve already built an amazing community filled with supportive people who are going through similar experiences.
As I previously mentioned, my favorite style of dance is contemporary. A few months ago, I started an instagram page, @dancingwithdysautonomia, dedicated to documenting my journey with chronic illness as a dancer. I post lifestyle updates along with improvisational videos of me dancing. Living with chronic illness is never easy, but it is ten times harder as an athlete and artist. Improv has given me a space to feel comfortable with dancing without pushing my body to do skills or moves that would hurt it. It has helped me to challenge myself to keep moving and work on my strength and stamina without injuring myself or bringing myself to a point of exhaustion. I love improv because I can make it whatever I want. It’s great for my body to stay active, but it also is an amazing artistic outlet for me. I use it as an emotional outlet and it motivates me to keep pursuing my career in dance.
When I first told my teachers and friends about my illness, I wasn’t sure if I would be able to keep dancing, but I have worked really hard to find a balance between pushing myself and advocating for my health and wellness. I now feel confident that I can keep dancing for the rest of my life because I am lucky to dance at a studio that allows me to prioritize my health without limiting my opportunities. I want to thank my dance family, my teachers, friends, and my studio’s director for supporting me and allowing me to keep dancing. My doctor actually told me that the worst thing I can do for my health is to quit dance, so I’m determined to stay strong and keep moving, and I hope I will be able to make a career out of this one day.
This illness has caused me to have to let go of a lot of the things I loved to do, and I realize that I took a lot for granted before I became sick. I hope this story can be a reminder to you that it is a gift to be able to stand up and brush your teeth every morning. It’s a gift to be able to go holiday gift shopping for your family, and it’s a gift to do all of the things that you love to do. I’m so grateful that dance is one thing that this illness can’t take from me. Thank you for listening to my story and I hope this can be encouraging to anyone suffering from an invisible illness. I want to say a special thank you to Ella Eastin for giving me an opportunity to share my story with Dysunderstood!
Thank you to our primary sponsor, Vitassium by Salt Stick.
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