By Ashley Shannon
Heading into my junior year of high school in August 2020, I can’t say there was much I was excited for. Everything felt abnormal, but I knew there was one thing that might bring me some semblance of familiarity. Dance is woven into the fabric of my identity, shaping 15 years of my life through intense commitments, close friendships and memories I will cherish forever. After several months off due to the COVID-19 pandemic, my passion for dance was stronger than ever, and I was ecstatic to get back to dancing with my high school dance team, the Marionnettes. At least, that is what I thought until I found myself constantly gasping for air.
Within my first few weeks back with the team, I began to experience some unfamiliar sensations. I was constantly struggling to breathe and had sharp pains in my chest. I finished practices flushed, fatigued and dizzy. I knew that after several months at home and not dancing regularly, my stamina might be different, but my team required a weekly conditioning program starting in June to help us get back in shape. By the end of summer, I felt well prepared to return to dance, but my inability to get air was frightening. Deep down, I knew something was wrong.
Initially, my mom thought the pressure of junior year could have been getting to me more than I realized. We talked about some anxiety management techniques and strategies I could use to reduce stress. After weeks of implementation, my symptoms only seemed to get worse. One day after school, while I was talking to my mom, she noticed some inconsistencies in my voice. One moment I would sound like my normal self, and the next, the pitch of my voice would change. Together, we became increasingly aware of pitch changes, gasping sounds and increased throat clearing. As my symptoms progressed, it felt like my voice was no longer my own, leaving me uncertain of how I would sound when I spoke.
As my symptoms continued to worsen, my mom took me to the pediatrician, where I explained my chest pains, struggle for air, increased fatigue, lightheadedness and facial redness. My pediatrician performed an electrocardiography because of my chest pain, which came back normal. Believing I had developed asthma, he referred me to a pediatric pulmonologist. There, I had a plethysmography, which measures changes in lung capacity. The pulmonologist explained that there was nothing alarming in my test results, but we would need to get to the root of the problem by a process of elimination. He decided to treat me for asthma.
Unfortunately, my prescribed inhalers didn’t provide much relief. I spent weeks frequently texting my mom from school about stabbing chest pains while sitting in class, not being able to breathe during practice, having to step aside while dancing to catch my breath or even sitting out because I felt too weak to practice. I not only was increasingly frustrated but beginning to feel afraid to dance at all. There were many days where it took several hours for me to recover from these attacks and the problems only seemed to be getting worse. I often felt like I had just been strangled or that I had weight plates stacked on my chest. I also became worried that my team would think I was faking or being lazy. With no diagnosis, I was not sure what I could say to be taken seriously.
When I returned to the pulmonologist for a follow-up I asked if I might have vocal cord dysfunction. After all, I started to seek answers of my own as I grew more concerned. He did not dismiss the possibility of me having VCD, but said allergies had to be ruled out first. Once again, the treatment made no difference in my symptoms.
To my surprise, bloodwork before my next follow-up appointment showed mononucleosis in my system. After a laryngoscopy in June 2021 ruled out tumors and acid reflux, I met with a speech-language pathologist and the VCD diagnosis was confirmed. My mom and I were so happy to finally have the answers we had been seeking and I could not wait to start feeling better.
Vocal cord dysfunction is an episodic condition associated with certain triggers. Nearly 80% of cases are mistaken to be asthma, just like mine. Normally, when inhaling, the two bands of muscle on either side of the larynx open, allowing air into the trachea. With vocal cord dysfunction, however, the vocal cords tighten and close during inhalation, making it difficult to move air in and out of the lungs. People who are more at risk for VCD include women ages 20 to 40 experiencing stress or anxiety, acid reflux, high physical activity levels, a cold or viral infection, sinus infection or environmental irritation. My care team believed that my VCD was initially triggered by my mononucleosis infection in 2020 and was exacerbated by the stress of my junior year and the intensity of dance practice.
My treatment plan included speech therapy to retrain my vocal cords. I learned progressive relaxation techniques and worked on learning rescue breaths and breathing from the diaphragm, allowing for deeper inhalation and better breath control. Despite my progress, I still experienced a few rough episodes that made me doubt whether the therapy had really worked. In the middle of performing a routine at the very end of dance practice one day in January 2022, I remember abruptly struggling for air. As I continued to dance, my vision suddenly went black. I remember telling myself not to panic and kept doing the choreography. My muscle memory took over while I used my rescue breaths to force air back into my lungs. After about 30 seconds, my vision gradually returned. Unfortunately, VCD is something I will likely have to deal with for the rest of my life, but knowing my triggers and having breathing strategies prepared has helped me reduce the frequency of episodes. It was an uphill battle most times, but over time I successfully returned to my normal dance activity levels.
I share this story to emphasize the importance of advocating for yourself if something is not right medically and to bring attention to a frequently misdiagnosed condition. Although it took almost a year for me to receive a diagnosis and another six months to feel better, I am grateful I continued to advocate for myself until I got an answer. I encourage everyone to seek further opinions if something feels off, as you can not only help yourself reach a diagnosis, but future patients going through something similar.
Ashley Shannon is a third-year public health major.
“My public health story” essays originated from an assignment on public health storytelling for a public health messaging and dissemination course led by Brittney Dixon-Daniel, Ph.D., M.P.H., director of the Bachelor of Public Health program.