My (Very) Long COVID Experience — What’s Up, Doc?
A partial history of my medical nightmares.
Doctors are a strange bunch. They’re highly specialized, educated, and confident. They collect strange instruments and always seem to be in a hurry. Yet, despite their allure and cultural capital (think cheesy sitcom), they can keep their hands off my body and out of my pocket.
Now, I’m not saying doctors are swindlers, but the value they bring is often far less than the price they demand. I’ve learned (the hard way) that just because someone carries himself in a haughty way, wears a white coat, and has multiple fancy degrees on the wall doesn’t mean I should take him any more seriously than any other service provider.
To those lucky and healthy enough to stay out of hospitals and doctors’ offices, trust me when I say that the costs are ludicrous: Fifteen minutes of a doctor’s divided attention can easily cost hundreds of dollars. The cost goes up with each medical test whether that test leads to any meaningful insight or not.
(You might be dismissive of medical costs because you have good insurance, but this is a mistake I don’t have time to address here. More thorough scholars and journalists have already covered this. Suffice it to say that insurance in my experience is even more useless and overpriced than medical care itself.)
In many other contexts, if you don’t like the service you get, you can get your money back — or at least a price reduction. This is very difficult to pull off with medical providers. The toughest part is they often act like they are doing you a favor — as to opposed to a (paid) service — and often balk at the implication that they ordered an unnecessary test, for example. They can easily hide behind precaution — the need to “rule things out.” As long as they have more expert knowledge than you do, which is often the case, it’s hard to call bullshit.
But as a long COVID sufferer, I’m calling bullshit. If you don’t know what I have and/or how to treat it, send me home with a few words of encouragement and a lollypop — not a bill for $900 and a referral to another doctor who doesn’t know either.
First Contact: Urgent Care
The first time I recall seeking medical attention for my long COVID beyond the MinuteClinic (not an endorsement) was when I drove myself to urgent care in the summer of 2022. I was visiting my mother out of state, and for some reason I couldn’t breathe well in her house and felt like I was going to pass out. I had never experienced anything like it before, so I panicked — which only made my breathing worse.
At urgent care, I was subjected to many tests and x-rays related to my heart, lungs, and other vitals. I was given a COVID test, but it was negative. They found no problem whatsoever, and I was promptly released with a referral to a cardiologist. Given that I have no personal or family history of heart problems, I declined to see one. I did, however, decide to find a primary care physician (PCP) when I got back home to Virginia.
My ‘PCP’ at Medics USA
I put PCP in quotes because it later — somehow — came into question that the doctor I will not name here was, in fact, my PCP. But the relationship began routinely enough: She insisted, when I described my symptoms and showed my paperwork from urgent care, that she didn’t think I was crazy or a hypochondriac. She gave me a breathing test and said I seemed to be struggling with my outbreath. She then prescribed me an antihistamine and an inhaler. Neither seemed to work, so I came back two weeks later and was given a different inhaler (and, perhaps, a different antihistamine). They didn’t work either. The nurse was at least compassionate, however.
Pulmonologist #1
Since my breathing continued to be an issue even outside my mother’s house, I went to see a pulmonologist. My cousin, who has lung trouble of her own, recommended this, and I believe my PCP did too. On a medical support hotline, I was advised not to see the pulmonologist I ended up seeing because he was “too old school,” but the recommended ones were too busy with other appointments.
Old school or not, he was a strange man — got a little too touchy even. He put me through more breathing tests and prescribed me with an even stranger drug called Montelukast that gave me what I can only describe as “anime nightmares.” One of them featured my (black) wife morphing into a (white) male-looking Final Fantasy-like character before my eyes. Needless to say, it was a horrifying experience. The dreams went away after a couple weeks, but the drug did little to resolve my symptoms. (You can read more about this drug’s strange side effects here.)
My Breakup with My ‘PCP’
My frustration heretofore led me to request a referral to a specialized program for long COVID sufferers. Either a doctor’s referral or positive COVID test was required for admittance, and I didn’t have a positive test. (I just assume I got COVID back in May 2022 because my wife tested positive, and we had the same symptoms around the same time.)
For some reason, my PCP asked me to come in for an appointment before I could receive the referral. I declined, citing my ill-health and questioning why this was even necessary. They had proven themselves incapable of treating me, and I was merely seeking out another option — why did I need to explain this in person?
This led to a weeks-long passive-aggressive standoff. To break the tension, I drove to the doctor’s office with my wife and demanded a referral directly from the secretary. She said she would email it to me — but it never came. She later said the same thing over the phone — but still it didn’t come.
Thus, I wrote my PCP a bad review on Google and complained to everyone I could think to complain to — including my insurance company, who filed a formal grievance on my behalf. Medics USA’s response, which took at least a month to arrive, was that they couldn’t write me a referral because they weren’t my PCP. (Talk about gaslighting!) I guess it didn’t matter that I had their name on my insurance card or that they were serving as my PCP in every other way. Kafka could have easily written this story.
Ear, Nose, and Throat (ENT) Doctor
It wasn’t until early 2023 that I tried to seek medical care again — this time I went to see an ENT. I checked his reviews carefully and hoped that with his decades of experience, he might know what to do about the relentless mucus in my throat. (The breathing issues and fatigue came and went, but the mucus was ever-present.)
He told me he had seen similar cases and that it would likely go away on its own. He wrote down a list of drugs — many of which I had already tried — and said he would write a prescription for those that required one. He said the recovery process would likely not be linear and that I should expect regression.
For roughly five months my symptoms subsided to the point that I could function normally. They came back with a vengeance in August (2023), the week I moved to Atlanta.
Virtual Doc
When the symptoms returned, I went back on Montelukast (mostly out of desperation) and called the ENT for a prescription. He refused to write me one unless I scheduled an in-person appointment, which was impractical because his office was back in Virginia. After a few choice words, I decided to find a local doctor and hope he would write me a prescription during a telehealth session. I told him I was too sick to come in and that I was tired of useless tests and consultations: I just wanted to try another drug with the hope that it would alleviate at least one of the symptoms. He refused.
At this point I lost my head: I had been suffering from serious depression for over a month, feared losing my job, and had run out of all hope and patience. I talked to this esteemed, over-paid professional like he was less than my peer. I viewed his appeals to caution as just another barrier to feeling any sense of control. To (mis)quote Moby Dick: If my chest had been a mortar, I would have fired my heart through the computer screen and into his head.
ER Doctor
In October, my long COVID got so bad over the course of a few desperate days that my wife decided she couldn’t take it anymore and drove me to the ER. (I felt as if a heavy foot were pressing on my chest and couldn’t engage in much physical activity.) This was easily one of the worst days of my life because I knew it would be a costly waste of time but that I had to do it for her sake. She had lost her father to a heart attack.
The doctor was kind but found nothing wrong. He did, at least, write me a few prescriptions. None of those drugs ended up helping — one of them caused temporary weight gain while another caused daily diarrhea — and even the “sleeping pill” (anti-depressant) he prescribed mostly just made it harder for me to wake up in the morning.
The doctor was so clueless that he googled my symptoms and found some discussion forum where another desperately ill person claimed he got relief from some obscure liver supplement — which, of course, didn’t help me either.
Pulmonologist #2
That same ER doctor also referred me to a pulmonologist with some conviction that my heart, or any organ beyond my lungs, was not the issue. My breathing was so bad during the 45-minutes of tests the lab tech mercilessly put me through that I was convinced they would discover something — anything — that would lead somewhere. (I still didn’t have a formal diagnosis.) The torture of uncertainty could not continue forever.
But the second pulmonologist didn’t find anything either and prescribed no drugs — not even a high dose of morphine to put me out of my misery. My wife and I broke down sobbing in the parking garage. I questioned my existence.
I ignored the referrals to see additional specialists. I thought that only a fool would continue to set himself up for more bills and bullshit.
Conclusion
I gradually freed myself from the illusion that I would receive any effective medical care. I then focused my attention on things I could control: Diet, exercise, and other lifestyle factors. As of February 2024, my symptoms have improved dramatically overall, and my relapses are much shorter in duration.
I do not know if I will ever regain trust in the medical system. Right now, the only thing I trust is that it will bill me often — even after I have already paid. I honestly welcome the inevitable takeover of AI in the medical field. There’s no way that robot doctors could do any worse.
