The Always Tired Club

Dying to Run, Episode 4: “The Always Tired Club”

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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To join the ranks of the chronically ill is to discover what it’s like to be stigmatized. Sick people give healthy people the heebie-jeebies, unwelcome reminders of a truth we’d all rather forget. Even noncommunicable diseases such as cancer provoke a natural disgust in healthy persons, a provocation that is punished, according to sociologists Bruce Link and Jo Phelan, by “labeling, stereotyping, separation, status loss, and discrimination”—all for something the sick person can’t help. In Bible times, a person had to murder someone to earn the “mark of Cain”—the original stigmata. All I did was lose my health.

Coincidentally, the first book I read after I lost my health was The Death of Ivan Ilych, Tolstoy’s devastating depiction of the isolation often experienced by the chronically ill. I found myself nodding along in sad recognition as poor dying Ivan descended into loneliness. Unless you’ve experienced chronic illness (or read Tolstoy), you might not realize that the stigmatization of chronic illness isn’t always as cartoonishly evil as Donald Trump’s puerile mockery of New York Times reporter Serge Kovaleski’s joint-related disability at an infamous 2017 rally. Everyday discrimination is subtle, like the body language poor dying Ivan picked up at his place of work, where he “noticed, or thought he noticed, a strange attitude toward him; at times he felt that his colleagues were stealing glances at him as at one who was about to vacate a post.”

In my own case, I noticed (or thought I noticed) a silent judgment of my inability to get better. Wait—are you telling me you’re still sick? Folks just sort of assumed I’d make a spectacular recovery while they were getting on with their lives, and my failure to live up to this assumption was perceived as just that: a failure. At a bar one night, a neighbor-friend confidently predicted I would indeed make a spectacular recovery because I was the “strongest motherfucker” he knew, and although I recognized that he meant it as a compliment, what I heard was this: Please don’t burden me with any further mentions of your health status. You’re going to be just fine, so kindly put in a sock in it until then.

Perhaps the most insidious form of control society imposes on the chronically ill is the myth of the happy sufferer. An example is Paul Alexander, aka “Polio Paul,” who lived for seventy-two years in an iron lung without ever complaining (at least not when there was a microphone around). Folks like him are celebrated for smiling away their torments, but the true purpose of such praise is to warn other sick people against drawing upon the sympathies of the well. To talk about one’s sickness is regarded as the ultimate faux pas in many if not most social contexts, worse even than boring a group of clubhouse patrons with a hole-by-hole recap of a just-completed round of golf.

Never a respecter of such unspoken rules of social decorum, I decided at the outset of my journey through chronic illness to go ahead and share my experience publicly through a combination of podcast appearances and blog posts. How could I have done otherwise? Try to imagine yourself talking about something other than the weather in the midst of a category 5 hurricane.

Another reason I chose to share my experience with long COVID was that I wanted to scare the shit out of people who weren’t taking it seriously. Think you’re too healthy, fit, or young to end up like me? Think again! More than a few athletes told me they changed their behavior after learning about what I was going through, which made me feel like a good person for about ten minutes. More selfishly, I hoped that by putting my illness out there I would receive helpful tips from doctors, scientists, and other long-haulers—fellow members of the Always Tired Club. Of course, I heard from a lot of crackpots as well—anti-vaxxers, diet cultists, conspiracy mongers, and the like—but I made a few good connections this way, most notably Steve, a sixty-something Englishman who, after reading a blog post describing the time my wife found me naked and spreadeagled on the bedroom carpet, trying to determine whether my chest pains signaled cardiac arrest or were just another symptom of long COVID, introduced himself to me via email as a thirty-two-year veteran of a post-viral chronic illness very much like my own. That was a kick to the nuts, let me tell you. I had known that some people with post-viral chronic illness never get better; Steve’s embodiment of this reality, however, made it suddenly more real.

As bad as I’ve had it, I wouldn’t trade places with Steve, who gave me the full story (or as much of it as he could recall) in the first of several video chats we’ve had since his initial outreach. Whereas I had the relative advantage of getting swept up in a global pandemic, fall sick at a time when millions of others did the same, Steve unraveled for no apparent reason in 1990, when the rest of the world was focused on a looming recession, leaving him to wonder alone what the fuck was happening to his thirty-something athlete’s body.

“I started to get some viral-like symptoms,” he told me. “Dizziness, headache, fatigue. Things deteriorated rapidly. I took a couple of days off work and then went back in, not feeling well. A few days later I was home again, virtually incapacitated. I’d get up, eat some breakfast, do the dishes, and then return to bed. I’m sure you can relate.”

Yes and no. In his telling, Steve went straight from perfect health to chronic illness, but when my turn came I pinballed from perfect health to acute infection back to seemingly perfect health and lastly to chronic illness, catching COVID-19 at the 2020 Atlanta Marathon (where I won my division), recovering after one month and spending the next six months seemingly healthy before developing a whole new set of symptoms that I eventually recognized as long COVID. It began with one bad workout—a set of speed intervals that I abandoned halfway through, feeling off. A week later, all my workouts were bad. But another eighteen months would pass before I became quasi-bedridden.

“I couldn’t tolerate light,” Steve continued. “Not even television or computer screens.” Tinnitus, halitosis—the symptoms kept multiplying, getting weirder. “I had every test under the sun,” Steve told me. “They all came back negative except for one positive blood test, and that was for toxoplasmosis, a protozoal blood infection. I was told I’d probably get better within twelve months.” A year passed, then two years, then three. “It just has never gone away,” Steve said. “I’ve had daily symptoms of varying severity ever since.”

In the end, Steve was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—essentially long COVID without the COVID part. Very little information or public awareness of the condition existed back then. A 1988 paper on the subject of “post-infectious disease syndrome” by Barbara Bannister provides a window into the status of our knowledge around the time Steve joined the Always Tired Club. She writes: “Most patients who have an acute infection expect to pass through a variable period of convalescence before they regain their usual health. An unlucky few recovery from the symptoms of the acute disease only to be assailed by a new illness; a post-infectious syndrome.”

Bannister goes on to identify the syndrome’s characteristic features, which, in addition to general fatigue, include “weakness following muscular effort,” “mental exhaustion and poor concentration,” and “paraesthesiae [tingling] in the limbs or face,” which both Steve and I have experienced in dreadful abundance. Research on post-infectious disease syndrome began after an outbreak in Los Angeles in 1934, according to Bannister, who concludes with a flourish of optimism, observing that “much interesting work is currently in progress relating fatigue to persistent immunological abnormalities,” making her chosen area of expertise “a most exciting field of research.” Thirty-six years later, folks like me are still waiting for this excitement to trickle down to the patient level.

Again, though, Steve had it worse, left to conduct his own search for effective treatments. “Laying on of hands, Chinese medicine—I’ve tried everything,” he told me, “at great expense sometimes, and had no benefit from any of it.”

Among the things I’ve tried to little to effect are acupuncture, antiviral teas, CoQ10, gamma waves, hydrogen water, hyperbaric oxygen therapy, a ketogenic diet, Metformin, methylene blue, NAD+, nicotine patches, Paxlovid, prednisone, probiotics, transcranial electromagnetic stimulation, turmeric, and vaccination. In one surreal moment I found myself on the phone with Tom Brady’s sister Nancy, who put me in touch with Tom’s personal trainer, Alex Guerrero, who advised me to try something called blood washing.

“Did you ever lose hope?” I asked Steve. “How’s your mental health been?”

“I think I’ve done pretty well, to be honest,” Steve said. “I went off in different directions in my life. My work became more of a focus. That and my family. There were some dark times, I suppose, when I did lose hope. I just couldn’t see recovery. But that’s all behind me. I’m in a good place now and it’s difficult even to remember how bad it was.”

Many long-haulers become depressed—more than half, according to some estimates. I’m not sure if I did, as my mood always rebounded quickly whenever my physical suffering abated for an hour or two, but I found it quite impossible to maintain good spirits during periods of intense physical suffering. Never prone to anxiety, I experienced severe social anxiety at these times, dreading interaction of all kinds, be it a one-on-one coaching call or a Fourth of July barbecue or podcast interview. Work became a burden, bled of all enjoyment by my glitchy brain. At one point a book title popped into my head: How to Run a Business While Drowning. That’s what it felt like.

Some days I thought I was losing my mind. Strange and unpleasant mental symptoms battered me from all sides—symptoms I now have names for but didn’t then. Rumination involves plunging down deep rabbit holes of unproductive thought. Nataki and I would pass a neighbor on our morning walk and I would imagine the person muttering a racial epithet under his breath, then picture myself confronting the person, a brawl ensuing—and night in jail. Derealization is the unsettling feeling that the reality you’re experiencing isn’t actually real. For several months I was more than halfway convinced I’d died in a plane crash on my way home from the Atlanta Marathon, and I was now in hell. It made so much sense!

Like Steve, though, I found a way through by “going off in different directions in my life.” My first pandemic business trip was the one I made to Colorado to coach at an adult running camp my buddy Jake had organized. So sick was I on the morning of my outbound flight that I almost stayed home, but when it mattered I rallied, losing myself in my role, and by the time the camp ended I felt ten times better than I had three days before. The same thing happened at the next running camp I coached at, and the next. Jake took me out to breakfast on the final morning of our third camp, and I told him (jokingly, I thought) that I needed find a way to live at a never-ending running camp.

“There’s just something about the environment that takes me outside of myself,” I said, “and outside of my misery. When I’m serving other people, the fatigue and the malaise and everything else just fades into the background.”

Within ten months, Nataki and I had sold our house in California, moved to Flagstaff, and opened Dream Run Camp, “where dreamers come to run, and runners live the dream.”

Where was I? Oh, yes! If you want to see Steve’s blood boil, mention a 1998 paper published in the Quarterly Journal of Medicine published a paper,  titled “Chronic fatigue syndrome: physical and cardiovascular deconditioning.” In it, scientists at the Thrombosis Research Institute reported that, in a group of 273 patients with ME/CFS, there was “evidence of physical and cardiovascular de-conditioning, suggesting that in these patients a graded exercise programme could lead to physical reconditioning and could increase their ability to perform physical activities.” A gullible world was convinced, the National Institute for Clinical Excellence (NICE) persuaded to incorporate graded exercise, or gradually increasing exposure to exercise, into its treatment guidelines for ME/CFS.

“The message that physical activity will make you better was completely wrong,” Steve told me, dander up. “It’ll make it worse, actually. You’re going to get some payback from it.”

Vigorous nodding from me.

“On the other hand,” Steve conceded, “things could also get worse if you don’t do anything. It’s a bit of damned if you do, damned if you don’t.”

For two full years, Steve did nothing more strenuous than a short walk. Being who he was, though, he ramped up his workouts the moment his body allowed him to, damn the consequences. “I could feel my fitness coming back,” he said, “but my symptoms stayed the same, and I paid a heavy tax in post-exertional malaise. There were times when I overdid it and set myself back quite a bit, but no regrets, you know?”

Progress is progress, and two steps forward for every step back adds up over time. Steve raced twice last year—the duathlon world championship and the sprint triathlon world championship—finishing fifth and thirteenth in his age group, respectively. Not bad for a member of the Always Tired Club.

We spoke again today. I wanted Steve’s advice on how to approach the next several months before the Javelina Jundred.

“You’ve just got to do what you can physically and try to balance that with the negatives,” he said. “Only you can decide how much is enough and how much is too much.”

“Do you think I can do it?” I asked.

“Believe it,” Steve said. “You’ve got to believe it. I’m not big on the psychology stuff, but there’s something powerful in belief, isn’t there? Like I said, there have been some times when I’ve given up hope, but the spirit just keeps coming back.”

Amen, fellow member of the Always Tired Club.

6 Comments

  1. Jacq on April 2, 2024 at 8:37 am

    Lots of nods of plentiful agreement while reading. Thank you for choosing to share your experience, it’s undoubtedly helped others and it sounds likes it’s brought you a little community as well, if not the treatments/healing you’d hoped for. I’ve been in the Always Tired Club since 2013, and hearing of your experience made me feel awful for you, but also validated, like many others. I’ve managed to get back to some level of what feels like mostly healthy running and am able to race a bit. It’s harder than it should be to say the least, but I’m very aware of how much worse it could be and am ever grateful for what I have, as long as I have it. I hope you are able to get there (healthily!) too. Sending spoons.

  2. Georgie Fear on April 4, 2024 at 11:25 am

    I’m about 50% convinced to enter the race with you. Life can dish up an astonishing portion of hell at times. Whatever happens as you pursue this, I know it will be interesting. You have my admiration, friend.

    • Matt Fitzgerald on April 4, 2024 at 5:01 pm

      I’m afraid the race is sold out, Georgie, but come down anyway for the Halloween dance party!

    • Andrea on April 15, 2024 at 3:47 pm

      My heart goes out to you, and to Steve. You think you’re getting somewhere then you’re back where you started. My CFS came after a virus and I crashed after running Boston in 2019 and have never got back to the shape I was in then. I’m training for an IM now though as swimming and cycling make me less fatigued than constantly running. If I keep everything ‘easy’ it’s ok – the other 20% is the thing that wipes me out. People don’t understand as I ‘can’ exercise. But I can’t do it without having to sleep 15 hours a day. Fortunately I’m self employed and can work flexible hours around it.

  3. Jen on April 6, 2024 at 10:22 am

    I read all of these posts back to back just now. I’ve struggled after Covid in the same pattern. Getting better and then for me slowly getting worse and gaining and gaining weight and barely being able to run or even walk.

    But then you had to drop the anti-vaxxer word. My son experienced a medically documented series of issues after vaccination. So overnight I guess I become the type of person it’s okay for everyone to hate. And I get gaslit. Like everyone who suffers from chronic inevitable health conditions.

    • Matt Fitzgerald on April 6, 2024 at 2:17 pm

      You have it backwards, Jen. I don’t hate anti-vaxxers–anti-vaxxers hate rational people. Incidentally, my wife also experienced medical complications after being vaccinated. No one denies that these cases exist.

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