Here’s What Real Longhaulers Are Saying; Are You Listening?

Hi. My name is John, and I’m a COVID Longhauler.

Many people honestly struggle to see the world through anything other than their own filters. People believe the world is a certain way because their world is a certain way.

If you want Reason No. 1 for why things suck, there ya have it.

The truth is that the world bears little resemblance to your world because it is impossible for one person to have enough experiences to know how things work for even a tenth of the people out there, let alone all of them. Having an America-centric worldview turns this reality into a danger. I put forward that you have absolutely no concept of history, poverty, racism, economic disparity and many, many more important things if your anchor point is the United States. We are a charmed nation built on a false narrative propagated by government-sponsored education, which is a fancy way of saying that the average American don’t know shit about fuck.

It should surprise no one that so many of us come out so myopic.

The counterbalance to all of this is empathy, which I would suggest is the most important trait you can teach the next generation. The ability to truly understand the life of another is invaluable in bridging gaps caused by a system that survives and thrives on divisiveness. If all of us made it a goal to learn how to walk a mile in the shoes of someone who is absolutely nothing like them, this world would be a better place to live and people would spend a lot less time unintentionally hurting others through their thoughtless ignorance.

So if you accept this might be true, the question becomes this: How do we cultivate empathy?

It’s takes just one simple and incredibly difficult skill: Listening.

Here’s a truth that isn’t up for debate: People love to tell you their story. In what they say, what they do, what they are a part of, what they avoid, what they wear, what they listen to, what they buy, people are constantly telling you about themselves. Listen well enough and you’ll be able to understand most people quite easily.

The problem is that most people don’t listen — they hear and think that’s good enough. It’s not.

Hearing is passive. Air vibrates. Our ears and brains are magnificently and miraculously designed to pick up this vibration. All you have to do to have hearing happen is freaking exist.

Listening is something completely different, about as different from hearing as appreciating a finely cooked meal is from taking in calories via an IV drip while you play your 27th consecutive hour of video games. Listening is active. It involves hearing those air vibrations but adds the element of thoughtful attention with a dash of consideration for the talker’s experiences. In other words, to listen, you have to pull your head out of your ass or, these days, your phone.

Let’s talk about an example, and I’m going in full-throttle: If your response when you hear someone say “Black Lives Matter” is to knee-jerk it with “All Lives Matter,” I would contend you haven’t listened; you’ve merely heard (and/or are trumpeting the party line/right-wing 24-hour news station, which is a more egregious form of stopping at hearing). To listen would be to engage in some thought about the interplay between history near and far with current events from a viewpoint other than your own to see that it is actually quite possible and quite valid to, at this point in time, put forward the belief that Black Lives Matter without it meaning that Black Lives Matter More. Feel free to disagree.

So if empathy is extremely important to our future and listening to the viewpoints of those with different experiences from our own is key to developing empathy, why do so few of us spend so little time indulging in anything other than what reaffirms our own opinions? So many people’s entire belief structure is formed without any input from anything other than those who are veritable clones.

If your entire world is made up of people who, in response to your opinions, say the equivalent of, “Preach it, Brother!” well, I would say you’re doing it wrong.

Longhaulers Need Empathy

In my experience as a Longhauler, I have found empathy to be in extremely short supply. To be fair, walking a mile in the shoes of a Longhauler is challenging because Longhaulers themselves aren’t even sure what shoes they are wearing, and neither do the doctors. That said, I have found a stunning lack of effort among people who would love to consider themselves my friends and family in actually listening. It’s one thing to read an article and pass it along. It’s another to get down into the dirty, dank, fetid trenches with a Longhauler and — because he can’t leave either — stay there with him.

Yeah, I get it: Trenches are icky.

Bring a pillow.

I have spent many months giving a lot of people the benefit of the doubt when it comes to their tepid “support.” Last weekend, I kinda sorta lost my shit and said “Enough’s enough with that particular line of crap.”

Because here’s the deal: Like I said before, people want to tell you their story, so it’s not particularly challenging to listen if you’d just stop being a hearer and engage your brain and your heart. Longhaulers are everywhere telling their story.

Need a suggestion? Bullshit your way into a few of the Longhauler Facebook support groups. It wouldn’t be particularly difficult. In fact, if you know and profess to care about a Longhauler, you don’t have to lie at all. You just have to honestly answer the questions about how Longhaul COVID has affected your life.

But yeah yeah yeah… I know that’s a bridge too far for many “supporters.” Why gain a truer understanding of what Longhaulers are going through when you could just… not? So let me bring some of this stuff straight to you and maybe you can strap on your listening boots for a while.

From D: “One of the new symptoms I’ve been experiencing along with all the others is really bad night sweats. Has anyone else experienced this bizarre symptom? I appreciate anyone’s response.”

From A: “I had Covid in November and lost my taste and smell, it came back after a couple weeks but not completely and things are starting to taste weird again almost like I’m losing it. Anyone else experience this?

From K: “Anyone feel weird in the head and feeling like they are dreaming all the damn time… and anyone having non stop leg pain?!”

From G: “Hey guys, anyone dealing with hair loss? A lot of hair loss? 😔

From A: “Has anyone been approved for FMLA through their employer? How long? I was approved and it lasted 26 weeks. Now it looks like I may not have a job to go back to. I am 6 months out from having Covid and haven’t been released to go back to work yet.”

From J: “Any one suffering from angular cheilitis they just won’t go away I tried 3 antibiotic serum I’ve tried antifungal cream etc and nothing they kind of heal throught the day however the next morning there back and worst

From S: “My symptoms are all neurological, fog , taste , smell, headaches , sinus pressure and ear pain. Eye pain as well.”

From R: “Debating on whether to go to ER this morning (which I know they will do nothing), I feel worse than I ever did or to go get tested again, which if I am positive, what do I do? I feel like I want to die! 😢 14+ months and this is the worst day yet!

From J: “I am 10 months out and for the past week my nose has been running soar throat itchy ear and now chest tightness feels like it’s hard to breathe a little bit has anybody else a longhauler experience any of these symptoms? I’ve been getting flareups once or twice every week where I feel like crap.”

From L: “Anyone experiencing bloating all the time?

From S: “Has anyone found anything to help with the extreme fatigue? It is ruining my life. I have a toddler and don’t have any energy to keep up with her whatsoever. I feel so bummed constantly. Fully vaccinated as of 2 weeks ago. Pfizer. Helped with the headaches and some brain fog but the fatigue has not let up.”

From D: “I was wondering whether any of you are teachers and how are you coping back at work?I’m a music teacher and I’m not back in school yet but would like to be ASAP! I tested positive mid November and am only now managing to do a few online video lessons. I’m terrified that I can’t just go for a lie down and/or that my words will fail me due to the extreme brain fog! Any tips/tricks/hints greatly appreciated.”

From S: “My family and I were all infected in March 2020. 3 out of the 4 of us have daily long term struggles. My 16yo has recently developed chest pain. His ecg shows a P wave inversion. Anyone else had P wave abnormalities and what was the diagnosis.”

From V: “Do people recover from long hauler symptoms or is it permanent.

I didn’t have to comb the depths of the interwebs for these statements. This is from one support group in one 24-hour period… and this isn’t even close to all the posts. I de-duped based on symptoms that were repeated frequently and left out the occasional, “I managed to go on a walk today for 10 minutes!” celebratory posts.

An Open Message to Those Who Care About A Longhauler

If you’re still with me, I know you’ve now heard these cries for help and care and concern from Longhaulers. But are you listening? Are you giving some thoughtful appreciation to what is being said, delving a bit deeper than just the mere words that form the sentences? Are you sprinkling in some consideration for the daily fresh hell Longhaul COVID has brought to so many people’s lives? Are you taking the time to pause and honestly ask yourself, “What if that were me? How would I feel?” And, more importantly, are you following up those questions with, “Who would I need my friends/family to be if I were a Longhauler?”

Then for the love of whatever the hell you hold to be holy, GO BE THAT PERSON! This isn’t difficult! It takes no abilities you don’t have. There’s no sort of extrasensory perception going on here. If you can hear or read the printed word or understand sign language or body language, you can do this!

So why are Longhaulers struggling so hard just to get people who are supposed to care about them to pay some damn attention to what’s really going on and even sometimes to have them read the shit they’re writing?

I would hope that all of us would put the existence of an unknown pathogen that is seriously fucking up people’s lives as a “big thing” that might deserve some daily priority attention and extra consideration. And if you can’t put yourself on that list with some significant regularity, do you think you might need to spend a few hours re-examining what you’re spending your time on? Because I do.

Listen! Stop merely hearing and L I S T E N!

Find your Longhauler right now. Let them know you are listening. Get in the trenches. Stay there.

We need you.


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