What Covid-19 Long-Haulers Want You to Know

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Photo by Tamas Tuzes-Katai on Unsplash

If you don’t already know what a Covid-19 long-hauler is, it’s time you learned. We are the tens of thousands — probably hundreds of thousands — of people who got sick with Covid-19 two, four, or even six months ago and are still not well. We are the ones with scarring in our lungs, visible damage to our hearts, or — more often — mysterious after effects that our doctors don’t understand.

If you didn’t know about us already, it’s because we are mostly invisible. We don’t go to the gym or the mall. Many of us are unable to work. A few among us are noisy and vocal, but most of us do not broadcast our symptoms — justifiably afraid of stigma, inquisition, and employment repercussions. If you see us in the grocery store, we might be recognizable by our Holter monitors, compression socks, rashes, or unsteady gait. But more often, we look just like you.

We don’t feel like you, though. That is, unless you are also crippled by brain fog, headaches, fatigue, heart palpitations, dizziness, chest pain, or shortness of breath. We don’t feel like you, and yet . . .

We are like you. We were busy parents, juggling a thousand things; college students, with big dreams; athletes and gym rats, pushing our bodies to the limit; retirees, settling into the good life; activists, fighting for a better world; wage workers, fighting to feed our families; successful professionals, climbing the ladder. Choose a few labels to describe yourself: conservative, liberal, wealthy, middle-class, poor, black, white, brown, gay, straight, cis, trans, married, single, out-of-shape, fit, old, young, middle-aged, religious, agnostic. There are long-haulers just like you.

Most of us do not fit into a known high-risk category. And for those of us who do, it doesn’t make our protracted recovery (or the question of whether we will recover) any easier or any less heartrending.

We are pioneers in a journey we never intended to take. The uncertainty that permeates the world around you has invaded our bodies. There is no map. We inhale uncertainty, we exhale uncertainty. We are unsure of the next breath — sometimes literally. Some day in the future, when there is a map for this illness, it will have been charted from our bodies — from the waterfalls that we crashed down, the quicksand that engulfed us, and hopefully from the islands that appeared just in the nick of time.

We deserve to be heard. Too often, we are not. Many doctors dismiss symptoms that they do not understand. We get slapped with convenient but woefully inadequate labels like “anxiety.” Employers demand effort that we cannot give. Even family and friends sometimes meet us with doubt, dismissal, or impatient irritation with our failure to hurry up and get better.

We are badasses. We might not look like much, lying in our beds or struggling slowly up a flight of stairs, but our resilience is changing the world. We have built online communities, become activists, initiated patient-led research, and fought for recognition from our own doctors. We are suffering, but we are also putting one foot in front of the other, even on days when our feet can only carry us from the bed to the bathroom and back again.

Why do we want you to know all of this? It’s not because we want your pity or your accolades. It’s because we want you to be part of the solution. We want you to have the common sense (and courtesy) to take inconvenient precautions, the courage to have hard conversations, the conviction to join the call for research funding, and the compassion to support the long-haulers in your circle. Maybe you don’t know any long-haulers yet. You will, and you may become one yourself.

This is not somebody else’s problem. Let me say that again: this is not somebody else’s problem. It is an American problem, a global problem, a human problem.

You can help. You can continue to educate yourself about the long-haul experience. You can let long-haulers in your circle know that you see them, believe them, and care. You can bring them groceries, mow their lawns, or be a listening ear. You can donate to a Covid-19 support group. You can vote for political candidates who take the threat of Covid-19 seriously and who support the advancement of scientific and medical understanding. You can wear a mask. Please wear a mask.

I am just one long-hauler among thousands. Though I’ve spent dozens of hours in support groups connecting with and learning from others, there is more that needs to be said than I alone can say. If you are a long-hauler, I invite you to join your voice with mine. Post a response. What do you want the world to know about Covid-19?

Written by

Lisa is a writer, nature-lover, yoga teacher, and mom of three. She is also a Covid-19 long-hauler.

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