First Do No Harm

Dying to Run, Episode 3: “First Do No Harm”

Matt Fitzgerald has been a runner for almost his entire life, but his running days ended abruptly in 2020 when he developed long COVID, a post-viral chronic illness that makes it almost impossible to exercise. “Dying to Run” chronicles Matt’s quest for closure in the form of one last finish line.

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Runners should choose doctors who are also runners. That’s my opinion. Runners have different goals and standards for their wellness that a lot of doctors just don’t get. . . like the time I called my insurer’s live-nurse hotline complaining of shortness of breath, only to be informed that, by definition, I did not have shortness of breath because I was able to speak in full sentences. As I say, different standards.

My current physician, Dr. Britt, is a runner. Funny enough, though, I didn’t know this until our first meeting, having chosen her only because (unlike the other local doctors available on my bronze-level health plan) she hadn’t done her medical training on some Caribbean island. Today’s appointment is our third in five months, and as before she’s refreshingly punctual, striding into the treatment room before I’ve even had a chance to settle into my Roberto Bolaño novel. She greets me with a cheerful remark about the cheerless winter weather outside, seats herself on a rotating wheeled office chair at a desk with an ancient computer resting atop it, skims the notes her assistant, Alma, left for her, then turns to address me.

“So, what do you think about the fluoxetine?”

 I started taking Prozac a year and a half ago, after coming across new research indicating that the class of medications it belongs to—selective serotonin reuptake inhibitors, or SSRIs—were shown to alleviate neurological symptoms in patients with long covid. At that time my own neurological symptoms were crippling, none more so than the one I called “brain on fire,” a relentless throbbing between the ears that made it impossible to string two thoughts together. One day I tried to fill my water flask by pressing it against a light switch, bursting into tearful hysterics when the room went dark. But the Prozac helped, and after a few weeks on I was able to start working again, having announced a “soft retirement” around the time I came downstairs wearing only socks because I’d forgotten to put on the rest of my clothes after soaking in the tub for an hour (a favorite form of escapism in those dreadful days).

I later weaned myself off the drug, not wanting to put any libido-killing chemical in my body longer than I had to, trusting somehow that I wouldn’t backslide, and I didn’t—much. Outside of the occasional, random recurrence of fire brain, my neurological symptoms remained remissive. But then came a fresh batch of studies identifying low serotonin levels in the digestive tracts of long-haulers and offering hopeful evidence that SSRI’s could help with not just cognitive impairment but other symptoms as well, including fatigue and, yes, shortness of breath. I mentioned these findings to Dr. Britt the last time we sat together in this room, and she agreed to put me back on fluoxetine, hence her opening question in today’s meeting.

 “I feel good about it,” I answer. “In fact, I took the liberty of doubling my dosage from ten milligrams to twenty, and it seems to have given me an additional boost.”

 “That’s encouraging,” says Dr. Britt. I search her tone for indications she’s miffed about my self-doctoring but I catch none.

  “All the more so considering I’ve increased my activity level since the New Year. I’d like to think the higher dosage is helping me tolerate it.”

 While Dr. Britt adds to her notes, I take the opportunity to fulfill the promise I made to my dad and my brothers and others in the email I sent informing them of my latest escapade.

  “I should mention that the reason I’ve increased my activity is that I went and signed up for the Javelina Jundred ultramarathon in October.”

  “Oh, my gosh!”

No need to search Dr. Britt’s tone this time. She’s stunned.

“I don’t have to do it,” I add hastily. “You’re a runner too, so you understand how our minds work. My goal is really just to get healthier, but this is a case where I feel I have to shoot for the moon to land among the stars.”

This is a lie. My goal is closure, and although it’s true that getting healthier would help me achieve this goal, I’m also willing to imperil what little health I have to achieve it. Doctors don’t need to know everything.

 “Yeah, I get that,” says Dr. Britt, typing again. “When you have a deadline looming it tends to get you up and moving.”

  “So you’re not going to talk me out of it?”

  “You said it yourself: You don’t have to do it.”

Doctors and nurses were the heroes of the COVID-19 pandemic. They risked—and many cases lost—their lives to save the lives of others, working around the clock under siege-like conditions at a tremendous cost to their own physical and mental health. But those same doctors and nurses have also been the villains of the long COVID crisis. Our medical system is well designed to rescue the person who develops COPD as a result of eating too much fast food and avoiding exercise, but if you’re unlucky enough to develop a strange and nebulous syndrome with no known cure after a lifetime of taking good care of yourself, you’re on your own.

It’s not that anybody expects doctors to be gods. Actually, that’s not true—lots of people expect doctors to be gods. But I don’t. I just expect them to be human. The first precept of the Hippocratic Oath is “Do no harm,” but too many doctors have harmed their long-LONG patients through lack of humanity. In the early weeks and months of my illness, I read dozens of articles about it, each of them centering on an individual long-hauler who’d been treated with dismissiveness and condescension by their healthcare providers. The problem was so bad that in September 2022, the journal SSM – Qualitative Research in Health published a paper titled “Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment,” which presented the results of a survey of 334 long-haulers, 79 percent of whom reported negative interactions with healthcare providers in their search for treatment.

My previous physician, Dr. Young, did more harm than good to me. Most of my appointments with her were virtual, and I remember being so upset after signing off a couple of our calls that my hands were shaking—my physical health no better than before, my mental health decidedly worse. At a relationship level, doctoring isn’t much different from coaching, a role I know well, and Dr. Young was a terrible coach.

A good coach has the humility to say “I don’t know” when they don’t know, but Dr. Young couldn’t bring herself to do it, presuming instead that nothing was wrong with me until some diagnostic test found something wrong with me (healthy until proven sick).

A good coach views their athletes as partners in a collaborative relationship and welcomes input in the troubleshooting and solution-seeking processes. Not Dr. Young. She stubbornly refused to accept my long COVID self-diagnosis, not because it wasn’t obvious I had long covid but because I don’t have a medical degree.

A good coach thinks holistically, never losing the forest for the trees, but all Dr. Young saw was trees. She kept decontextualizing individual symptoms and testing me for conditions that would explain only that symptom. I paid $1,000 out of pocket for a CAT scan to see if I had a bulging disc, which would have accounted for the neuropathy in my lower legs and none of my other thirty symptoms. (For the record, no, I did not have a fucking bulging disc!)

A good coach happily functions as a creative problem solver in situations where rote application of established protocols is not an option, but Dr. Young was allergic to going off script. While other long-haulers were getting a measure of relief from off-label usage of medications developed to treat other conditions, I got nothing.

Finally, good coaches exercise common sense, and here again Dr. Young failed me. At one point I developed severe insomnia, for which she prescribed sleep therapy, refusing to tender pharmaceutical relief on the grounds that it might foster dependency. That’s when I lost my patience. I have nothing against sleep therapy, but my insomnia was caused not by general anxiety or work stress but by a full-blown physiological fight-or-fleet state that felt like drinking five Red Bulls before hopping into the cockpit of an F-16 and dogfighting Russian MiG’s, all while lying quietly in bed. “Use your head, Doc!” I yelled. “Which is worse: being dependent on something for sleep or not sleeping?” Only when I cadged a prescription for Mirtazapine from a less benighted physician in another state did Dr. Young relent on this point, agreeing to let me stay on it. Quite a contrast from Dr. Britt, who readily accedes to my request for a double dosage of fluoxetine.

“I just want to say that I appreciate the openminded approach you’re talking with me,” I say to her as she hands me an appointment reminder. “I feel like I have a real partner in this process, which was not the case with my last doctor.”

“As long as we don’t do anything that’s going to hurt you, it’s worth a try,” she deflects. “It’s such a miserable condition, and nobody knows what to do about it. You are a guinea pig!”

“I’ve been called worse,” I say.

4 Comments

  1. JP on March 23, 2024 at 1:53 pm

    First off your health issues sound like a real struggle I wish on no one. Yet I find it interesting your article of do no harm. The first principle of medical care is do no harm yet the experimental non tested mRNA injections are the most harmful medical procedure ever. And it’s well known that the name long covid is mostly the vax injured. If you believe in do no harm why don’t you talk about the largest most harmful crime in history and help spread the word to stop the harm of the most deadly injection code named clot shot.

    • CS on April 3, 2024 at 1:27 am

      “most harmful medical procedure ever”
      “most harmful crime in history”

      please go outside for a change

  2. Diane Miller on March 23, 2024 at 2:13 pm

    I REALY love this series of blogs and am so excited when I see the next one pop up. You’re painting a really clear picture of your experience. Maybe because you have worked so hard to develop such strong mental fitness it isn’t always as easy to see past that or through that to what this experience has been like for you. But in this series Dying to Run I think you help us to not just see through it but to feel it.
    These are impactful. Cant wait for Episode 4 (and beyond!)!

  3. SB on May 4, 2024 at 11:48 am

    I truly wish you well in your recovery and in this particular goal.

    I would encourage you to consider that the implication that someone with COPD brought it on themselves by eating fast food (an absolutely absurd claim that is beneath someone of your intelligence) is the same dismissive and myopic attitude that you felt victimized by.

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