Rebecca’s Story
Rebecca (excerpt from Stryker, 2024)
Sometimes [singing] can feel like a massive release and the best thing in the world. And sometimes you get in your head and it's the most stressful horrible thing, especially if you're sick and things aren't functioning as they should be.
Rebecca is a professional musical theatre performer with substantial experience in long-running, big-budget musical contracts (such as Broadway, West End, or National Tour productions). She grew up singing and wanting to do musical theatre, because her mother was involved in local community theater. She had basic singing training growing up and attended an arts school for college, studying musical theatre. She went straight from school into a long-running show in a big city, followed by a national tour, playing the lead. She had also performed professionally as a teen in another long-running show and participated in building a new show by a popular Broadway and West End composer, giving her a substantial resume of industry experience. During the pandemic, she found herself teaching voice online, and has continued since.
After the pandemic, I went into [another national tour], playing [the lead role]. A little bit of a weird thing where…during the pandemic, you’ve been resting for so long, and then suddenly going back to eight shows a week was crazy. And this is when my POTS started to really show itself.
Rebecca shared that her POTS journey may have started years prior, around age 17 or 18. “So kind of all of my adult years have been linked to illness or performing in spite of illness.” While on tour, she was often “feeling faint or passing out, throwing up, can’t eat anything, heart rates really really high, really dizzy, and also this…” She shared that she had intense bruising on her legs, “like a cow print.” “Something inside of me is really not happy.” At one point, the doctors were going to do a skin graft to find the cause of the bruising, so she had to get blood tests. She shared that at that point she thinks she had about twenty blood tests in one month. But after this test, she fainted, was admitted into the hospital, and they began to monitor her. A nurse was looking at her heart rate and said,
“Can you stand up for me?” and she did the poor man’s tilt table test. She had me stand for ten minutes, and then she sat me down and said, “have you ever heard of POTS? It might be worth getting checked for that.” If it wasn’t for her, I really don’t think I would know now.
Rebecca reflected that she was in the lucky position of being employed, but on a break from a show at that point, so she had the financial means and the time to seek help. Otherwise, it would have been a long wait for the official tilt table test. She was able to book an appointment for the day after she called the specialist and was diagnosed that same day.
As a singer and performer, she mentioned that a high heart rate changes the way you breathe, which doesn’t allow you to sing things the way you want to sing them. She also mentioned that in musicals, there are often many dance numbers and with POTS, your stamina is not the same as it would normally be, and you are more out of breath.
So, it takes you out of being able to be in character. Because if you’re playing a character but you’re constantly aware of what’s going on in your body, you can’t really embody somebody else. You’re constantly checking in with yourself.
During the tour, she found herself having to take shows off or going off mid-show. She describes a specific scene where she was staged to stand on a table, which made her POTS symptoms flare.
Everything would go black. I’d go backstage and throw up or pass out, and then I’d have to go off. And even when I had the diagnosis, and tried to go back, it was really hard to educate people about it because people don’t know about POTS. They actually gave me an alternate about halfway through the run to see if that would help me having a show off, but it's such an active show that it just didn't matter if I was having a day off. It was still, you know, there.
She ended up being let go from the tour three months before the end of her contract.
They fired me for illness. That was my first experience of, not intolerance, because I get it, it’s a tight ship and they have to run it a certain way. But that was my first experience of feeling slightly discriminated against for being ill. I left [the show] thinking, ‘well, I don’t think I can do this job anymore.’
She did continue to work, and with great success. In her next show (a brand new big-budget musical), she knew how to manage her flares and did the whole run, feeling great. They allowed her to have water backstage on the props table, her dresser had a small bottle of water, inhaler, and chewable salt tablets in her pouch, ready just in case Rebecca was feeling ill during a quick change.
That process was so validating. That I could still do this job! They accommodated me and let me lay down on the floor backstage if I needed to, and squeeze my legs, and get myself back to it. It was lovely to have an experience where accommodations were made. Obviously now I take that to any job that I do.
Rebecca shared how she went into the next show (an immersive new musical doing an out-of-town production) feeling empowered.
When I did [this show], I was on a lift and said “I have POTS and sometimes heights and sudden changes in height can trigger me. Can I try the lift when you put it in and just see if it works for me, and if not, can we re-choreograph that?” and they were like, “yeah, absolutely. That’s fine.” Some people are willing. I feel like if I went into one of the big machines, it would be trickier. Like if I was going back into [one of my first big shows], I don’t think they would be willing to accommodate.
She went on to share the trepidation she feels when it comes to disclosing her condition, or even being vocal about it on social media to advocate. Sharing an invisible illness, when you look like someone who is healthy, can be scary.
You see a lot of shows that are [being more inclusive of] visible disabilities, which is wonderful. But it feels like I would never get in the room for those because I’m not disabled enough for this industry, but too disabled to be classed as able-bodied and well. So, I often feel like I’m in this strange middle-ground of not really knowing where I fit, and not knowing if I’m able to claim that identity and it not hinder my jobs. I would love to talk about all of this stuff more online, but I worry that people would find it and not give me a job because of it. So, it’s that thing of wanting to claim it, wanting to speak about it, but also having to think, “Is it going to screw me over in the future?”
She has concerns that the invisible nature of this illness makes people less accommodating without realizing it. Many performers can work through a five-hour dance rehearsal, but “there’s a lack of thinking about those who might not be able to do that.” She mentioned that performers might not always feel they have permission to sit out when needed because they “don’t want to make a bad impression.” Right after the pandemic, people were often coming in sick, and masks were not always required. “You know, someone else could get a cold and they’ll get over it, but for me, that could knock me out for two weeks.” Or she might not be able to come back to the job at all. She has not met anyone in the industry yet who has POTS. But she says, “just knowing what the beast is helps you conquer it.” She has found community on Facebook groups, and “suddenly finding like 2000 people who [share your condition] is nice.” But she worries that those groups can sometimes make you feel worse, if you go down the rabbit hole and read about worst case scenarios. She has hopes for studies like this one.
I've met doctors that don't even know what it is, which is really scary. When you're going for help, you know, you're asking someone for help and they don't know what the thing you have is that is being medicated, it's really frightening. So, it's just lovely that there's somebody out there who wants to just… even just saying the name of it makes people go, oh what's that? And that's great! More people know what it is.
