Bailey’s Story

Bailey (Age: 18-24)

Singing is a lot more than notes on a page [...] It is a coping mechanism for me and a way to release the emotions I face in daily life or channel them in a productive way.

SINGING PRACTICE

Bailey is a college voice student who enjoys singing in multiple choirs and occasionally performing in musical theater productions.

BAILEY’S STORY

Bailey grew up as a high-level ballet dancer, and often dealt with chronic pain which she attributed to “growing pains.” She faced five musculoskeletal injuries in five years ranging from ligament sprains to joint dislocations. It wasn’t until her senior year of high school that she was diagnosed with EDS. 

I was diagnosed with EDS, coincidentally while at work, where I worked as a physical therapy aide at an outpatient PT clinic. One of the PTs there specialized in treating patients with POTS and EDS. One day, she pulled me aside to mention that she saw my hypermobility and since she knew about my POTS and chronic pain, she worked through the diagnostic process with me, and I met the criteria for a diagnosis of hEDS.

Although she had been experiencing syncope episodes (or fainting) since fourth grade and pre-syncope symptoms her whole life, Bailey was not diagnosed with POTS until she was sent to an urgent care after passing out during a physical therapy session for her shin stress fracture. 

The nurse practitioner diagnosed me with POTS and told me to follow up with a cardiologist. This cardiologist told me my symptoms were normal, and this is something all teenage girls go through due to hormone changes. Her only treatment was to eat more salty foods. I finally found a doctor who was willing to treat me and not dismiss me my senior year of high school when I got on medication for my POTS.

Has your singing practice or pursuit of singing shifted in any way since your diagnosis/onset of symptoms?

I never remember an onset of symptoms, only that I have lived with symptoms of these conditions my whole life. After my diagnoses, these symptoms did not change, but I became more aware that they were not normal, and it was okay to ask for help to minimize them.

I always struggle while singing with the amount of standing, often feeling lightheaded and in a lot of pain that takes days to bounce back from after a performance or even a long rehearsal. Things like the lack of access to water, strict dress codes that make me hot, hand pain from holding music for too long, and inability to perform at peak capacity every day due to brain fog have made singing sometimes feel cumbersome and like a fight instead of the freeing creativity that I know it can be. My conditions have definitely made me cautious to take opportunities in the performing arts because of the fear of the impact it will have on my body. I am scared that these opportunities will lead to me feeling burnt out due to the pressure to "push through" my symptoms, and I will lose my love for singing and the emotional outlet that is so important to me.

ACCOMMODATIONS THAT HELP BAILEY WHILE SINGING

Water on stage, Camelbak water bladder to discreetly have water for choir performances, use of a stool during performances, option to sit in rehearsals, adjusted attendance policy

BAILEY’S ADVICE

For singers: 

Ask for help/accommodations to the extent you are comfortable. If accommodations are not reasonable for a big event, think about accommodations that can help save your body for the big event (what small limiting factors can you minimize in order to maximize your capacity to withstand the big events that take a lot out of you?).

For professionals working with singers with these conditions: 

Create a space where it is okay to accommodate and does not make the student feel like they are a burden. Take it upon yourself to educate yourself on what might be helpful instead of relying on the student to educate you.