Enough Of This Song And Dance!

CONTENT WARNING: This story contains content of a medical nature. It is not intended as medical advice.

I am a musical theatre major, meaning that I spend the better part of my day in a ballet studio dancing or working out, and during what’s left of that day I’m either singing, acting, or both. After having an inherent heart condition fixed as a young teenager, I am proud to say that I am mostly healthy, a couple of minor-ish issues — as well as notorious unresponsiveness to most kinds of medication — aside. 

About fifteen months ago, though, I get sick with something that is labelled “minor, superficial pneumonia” at first, and after sitting in my body for about two weeks turns into “asthmatic-spastic bronchitis.” Later, it becomes full-blown asthma bronchiale which, thanks to hyperreactive bronchia, I am very used to catching around twice a year. Usually, after a couple of weeks, it’s gone again, and my asthma falls asleep into insignificance once more.

Not this time. 

The weeks come and go, and nothing happens. I’m fully incapable of doing anything at the conservatoire — but thankfully most of my professors are amazing and give me all the support they can possibly give me — and I’m getting more and more frustrated. My pulmonologist, after failing to succeed with several more antibiotics and cortisone therapies, is unwilling to give up on me and refers me to all possible colleagues. I get tested for pertussis, even for tuberculosis — and pretty much everything else — but they can’t find anything. 

After just barely passing my semester with the worst possible acceptable grades, I go home for my semester break. By that time, this has gone on nearly two and a half months already. My pulmonologist tells me to continue my treatment, or rather, the search for a concrete diagnosis, as she is at her wit’s end. 

I do, and they actually get the idea to do a bronchoscopy where, at last, they find not only a virus, but also bacteria that seem to cause all the trouble, sending me into a spiral of a constant asthma attack, which expresses itself with the symptoms of a chronic, constant bronchitis. They send me home with more antibiotics, telling me I can’t do much more but “sit it out and hope it’ll be gone in four to six months,” and put me on sick leave for my upcoming semester, since I can neither sing, dance, nor do anything on the acting front. I move back in at home with my most amazing, most supportive parents, and I begin my journey of doing not much of anything at all. 

All throughout the time, I’m feeling flu-ish sick, with often insufferable headaches and horrible sore throats, short- as well as flat-breathed, and I obviously also cannot get rid of that cough. I have better days and worse, but the worse days definitely outweigh the good ones. Basically, I’m knocked out of my life entirely, and I often even have to think twice if I want to take a brief trip to town. 

The months pass and nothing happens. There’s no improvement that lasts longer than two weeks and doesn’t follow a massive breach again. I lose another semester, as well as a fair share of friends. And, due to lack of movement, unsuccessful medication treatment, and, as I only just recently found out, my hypothyroidism acting up again, as well, I gain quite some weight; I’m not obese and still fit into most of my clothes, but you wouldn’t believe me the dance student, either. 

I haven’t been idle over that time; I’ve been looking into common and alternative medicine and am in the middle of a doctor marathon, to not much avail except for the revelation of several more issues to work on, and about a month ago — as this has been going on for longer than a year already, and I’m beyond frustrated and only very desperately trying to scratch the final pieces of my patience together — I am referred to the pulmonologist department of my local hospital to finally treat my set-in-stone asthma diagnosis, as many doctors seem to purposefully ignore the bacterial aspect of my issues. 

I have so many hopes for this appointment. But when I walk in, I see that, instead of [Doctor #2], who I am supposed to have the appointment with, I am met by a super young, and super overwhelmed-looking [Doctor #1]. 

I present him with all kinds of older to recent-ish but not super recent bloodwork and diagnoses and some very real proof that there are indeed physical issues to be resolved.

I explain, “…and this is why your colleague from the immunology department referred me over to you. It’s a rather pressing issue because my new semester is about to start, and I’d hate to miss the third one in a row. I really can’t do any dancing, singing, or much of anything at all, so I’m quite desperate about making progress. But unfortunately, I have issues with medication showing proper effect; it’s been like that since my heart issues way back as a child and starts with super simple things like common painkillers needing super high doses to start working.” 

The doctor doesn’t even seem to listen properly. “Well, we couldn’t find anything physical in your test results…”

All they did was a basic lung function test, the results of which often fluctuate depending on my day. 

I respond with confusion, “Um… But… I am officially diagnosed with asthma bronchiale already. Also, my lung function results fluctuate really badly, from unacceptable to–” 

The doctor cuts me off. “There are no physical issues, and your lung function seems to be low but not concerningly so.” 

“Well, as I explained before, it really fluctuates and–” 

He interrupts again. “Well, this is definitely not a physical issue, and your lung function is–” 

I cut him off this time. “But I really just said…”

[Doctor #1] ignores me and gets up to get [Doctor #2], who doesn’t even bother to sit down, and very clearly looks like she has no interest whatsoever in being here or helping me. 

“Well, as my colleague already informed you, we cannot find any physical issues to work with, and clearly, you are not asthmatic.” 

I sigh inwardly. “I really just explained to your colleague before that I have my official asthma diagnosis; I just need treatment for it, which is difficult because most kinds of medications have a really hard time to show any kind of effect besides the side effects, if they even work at all–“

[Doctor #2] says, interrupting me harshly, “If you were asthmatic, we would be able to treat you with cortisone inhalers, and those never showed any effect, so all you really have is a hyperresponsive larynx.” 

I’m absolutely stunned at how they both have so successfully ignored anything I’ve said in the past couple of minutes. “But… as I said… and my lung function… I know it looks better now but it really, really depends on the day and… It’s really not only the cough; there are so many other issues that–” 

Cut off again! “And your lung function isn’t that bad. I’ll just give you [super intense nervous system medication that is usually prescribed to epilepsy and severe anxiety patients, neither of which I even remotely suffer from] for your hyperreactive larynx. As for the fatigue, here’s a referral to outpatient rehab.”

[Doctor #2] gets up and leaves again without giving me the chance to say anything at all. 

“It’s really not just the cough; it’s–“

[Doctor #1] proceeds to explain the effects of the just-prescribed medication without listening. 

My mum, who had accompanied me, hasn’t had much of a word, either, so we just decide to give up on that lost cause and leave, both of us boiling inside. Not for one second do I consider having that prescription filled and taking this stuff, no matter how desperate I may be. Looking on the piece of paper, I was handed, I also find out that [Doctor #2] put “fatigue,” “chronic cough,” and “obesity” on my rehab prescription, which I am still livid about. 

Later that day, I have a routine follow-up appointment with a new cardiologist, who not only is as appalled by this behaviour as we are, but also draws blood and reveals several very physical indeed issues, among them high inflammation signs, my hypothyroidism being at a not-dangerous-but-alarmingly-low level again, and the bacteria still being very, very present within my body. I’m referred to another pulmonologist immediately.  

While I am, indeed, missing my third semester in a row, quite unsurprisingly, that new pulmonologist has not only found out that my lung function is currently at a new low point, but confirmed a “clearly asthmatic reaction and movement,” put that into the diagnosis, and promised to investigate if there is anything else behind it that I need to be treated for. 

Fascinatingly enough, he has also listened to my medication issues and prescribed me two new inhalers that he’s hoping will help me as one of the 5% who actually do not react to common cortisone treatments.