Olivia’s Story
Olivia (excerpt from Stryker, 2024)
Singing is just something that kind of comes out. It's not something I truly think about. It just kind of happens, which is really nice.
Olivia is in her junior year of college, studying music therapy. She is primarily an instrumentalist but has sung for her entire life and is enrolled in curricular voice classes at her school. Her POTS journey began at 12 or 13 years of age. She was passing out in the middle of class in front of teachers and peers.
It is extremely embarrassing when you don’t really know what’s going on with your body. And then I went to my doctor and my doctor was like, “this sounds like anxiety,” and sent me to a therapist. The therapist was like, “no, this is something more.” So, they started the diagnostic process for everything to figure out what I’ve got. They thought I had Lupus at one point, they started doing Cancer diagnostics, they were just going down the list of things. And they finally got to Lyme and found that was positive and got me on treatment for that. But then I was still having issues with heart problems, so they started the POTS diagnostic testing for that, and I got a positive POTS test.
She expressed that at that young age, she “didn’t know what was happening,” so her mom was her biggest advocate. In the short time between her Lyme diagnosis and her POTS diagnosis, she saw 13 different doctors which included two different cardiologists.
Now in college, she has found that the professors within her program have been wonderful advocates, as has been a disability advocacy group on campus with many members sharing her diagnosis of POTS. There are other professors with whom she is less inclined to disclose her condition because they “aren’t as accommodating and it sometimes doesn’t apply to those spaces.” Although she went on to specify those spaces as instrumental ensembles spaces where “it’s so much more of a classical mindset and a performance mindset. So, I kind of feel like, even if I’m having a flare day, it’s very much ‘suck it up, get to rehearsal, and take care of it.’” Alternately, she has found that her voice teacher is accommodating. She hopes that voice teachers continue to create spaces that are accessible and “teach how to sing healthily while sitting.”
I have noticed my vocal range has changed a lot since I got POTS. I’m not sure whether that’s just aging or whether that was a POTS symptom. But I feel like my voice range has shrunk a lot. It’s difficult to sing for extended periods of time now, just because it’s extremely taxing on oxygen supply. And obviously with POTS, the oxygen supply has to go to a million other places.
As someone living with POTS for seven years, Olivia has found tricks to manage her symptoms and prevent flares. “I have to be incredibly flexible with my conditions. I feel like I have to be prepared to have an acute flare at all times of the day, and I’ve always got my emergency medication on hand as well as snacks and lots of water.” She has found that cold water “shocks” the system and helps with nausea and dizziness, and for acute vasovagal syncope attacks, “having some type of rubbing alcohol swab to smell helps distract [her] brain enough that [she] can get her bearings and go on with [her] day.”
