COVID-19 survivors share their harrowing tales

The virus is unlike anything many people have ever experienced.

person crying wearing face mask
Photo: Tomas Ragina / Shutterstock
  • The public Facebook group, Survivor Corps, is a place where long haulers and survivors congregate.
  • Months after recovering from COVID-19, some are suffering from joint pain, hair loss, and cognitive issues.
  • These cautionary tales are important in a county where many remain skeptical over the dangers of this virus.


A concerted effort to stop famines in Africa spread across America in the '80s. Every Gen Xer remembers "We Are the World," which, as a 10-year-old, is burned into memory for life. There were also the heartbreaking videos from Ethiopia. Relief commercials centered on one young boy to make the most emotional impact. The team might have been borrowing a page from what appears to be a Joseph Stalin quote: "One death is a tragedy; one million is a statistic."

That idea is relevant today as Americans shrug off over 160,000 deaths to the novel coronavirus—except when that death is someone close to them. As a nation, we've reached peak conspiracy theory, with every study or mandate being challenged and decried. Yet for a certain segment of the population, COVID-19 is very real. For some, it remains real months after the infection begins.

The COVID-19 Survivor Corps public group on Facebook offers opportunities for people to share their singular tragedies—the struggles many Americans aren't taking seriously. From immune system- and obesity-shaming to flat out calling the pandemic a lie, the lack of empathy is stunning. This group offers a stark reality check.

Below are posts from that page. While the group is public, I have not included names. These are anecdotal cases. The point in sharing these stories is not to make a definitive statement, but to remind Americans who have not personally grappled with the virus, or who were fortunate enough to be an asymptomatic carrier, that the struggles are real.

Five million cases are just a statistic. These people, and the 90,000 other members, are real. If you're struggling with COVID-19 or simply want to support those who are, considering joining the group. It's one of the few places of refuge on social media that offers support, advice, and valuable information. (I've lightly edited the posts for grammatical mistakes.)

Coronavirus - The Latest: The Covid-19 'long-haulers'

I've been out of the hospital from COVID-19 for four weeks now and started having severe pain in my big toe, almost like I stepped on a piece of glass or have a severely ingrown toenail—I don't and there's no cut or intrusion. Now my toe is really swollen and red. It hurts to walk or put any pressure on it. Is this what's called COVID toe, and what's the protocol?

I am on 18 days in bed with COVID. Luckily, I've been able to manage this horrible beast from home (so far). I actually thought I was feeling better yesterday, and then today I'm going in another direction. I'm having terrible pain when I breathe (right side), and I'm exhausted. I just finished Augmentin, and a week prior, a Z-Pak. I have an inhaler. Today, my doctor wants me to start a Medrol Dosepak (steroids). Has anyone else tried this and has it helped? I'm desperate to try anything right now as long as I can get better. Please give me your thoughts on the steroids; I'm seeing mixed reviews in here.

I've been sick with COVID symptoms for 22 weeks. I'm not getting better. My original symptoms haven't gone away, and I just develop new ones every few weeks. I read an article on three immune responses to this virus. 1) Overactive immune response 2) Normal immune response 3) little or no immune response.

I am having little or no immune response to this virus.

It's taking over my body slowly. My primary doctor can't help me. My family and husband don't believe my symptoms and I have nowhere to turn.

I am so frightened.

How many of you are experiencing hair loss, especially hair loss after 5 months? I'm shedding like a dog.

I had COVID in June. At least 15 straight days in bed. No smell, no taste except certain spices. I've been diagnosed with two eye conditions now. Fatigue won't go away. Simple things like unloading the dishwasher or taking a shower exhaust me; I need to sit down. Has anyone recovered from these symptoms? If so, how long did it take?

Has anyone experienced increased joint pain, specifically in your hands, after COVID? I've had some joint pain in the past, but never this much. It's been four months since I had the virus and the pain seems to have increased since then. [147 comments on this, nearly every one verifying joint pain, especially in hands, ankles, and elbows.]

medics wearing face masks

Medics wait to transport a woman with possible Covid-19 symptoms to the hospital on August 07, 2020 in Austin, Texas.

Photo by John Moore/Getty Images

I had COVID symptoms for 2.5 weeks in March (could not get tested). I was a lot better for two months and then started the whole ordeal again 70 days ago (and am still sick). I have been to the ER twice and told that they think I have COVID. My clinic nurse said the same thing, as did my friend, who is an Urgent Care doctor.

I have had weeks where my fever went away and other symptoms decreased. But several times now, it comes back full force with a vengeance. The roller coaster is depressing.

I was fortunate enough to be accepted into the Mt. Sinai post-COVID treatment program and was really happy to have some experts keep an eye on my long-term effects. Four months after COVID, my EKG came back normal, my antibodies high, and my bloodwork normal. My next tests were a lung function test and CT scan to see if there's long-term damage from the pneumonia. I just got a letter from my health insurance company, Oxford, rejecting the cost of the CT scan. I'm so disappointed. Is anyone else having their COVID treatments rejected by health insurance?

I'm new here and it looks I'm one of the youngins in the group (19 btw). I got COVID about a month ago, and I got out of quarantine about a week-and-a-half ago, and I still have yet to see any of my friends. I wouldn't say I'm super popular but I do have a lot of friends, so I thought most of them would want to see me. I was super wrong. The stigma around COVID, especially with the younger demographic, was a joke before I got it in my friend group. Every single one of my friends didn't take it seriously and thought it would never appear in anyone they knew. When I got the virus it sent them all into shock and a couple of them hated me saying it was all my fault telling me that I shouldn't leave my house for a couple months and to not talk to them until next year. Now that I'm fully recovered I thought some friends would want to see me, but actually nobody does.

Rapid heart rate when standing (160s-170s). Advice on how to deal with it? Twenty-three days from a positive test. Fever is pretty much gone but I'm trying to get back on my feet, literally. I'm kind of at a loss—whether this is temporary or I should ask my doctor for certain tests. My heart rate is elevated even when lying down (and is tolerable) but even more elevated when sitting. Seems like this isn't just "fatigue."

My husband recovered from COVID last month but has been in a lot of pain. Weak and tired all the time. He gets tingly fingers and hands and feet and his ankles feel weak, like his bones are brittle. Has anyone else had this? He's rolled his ankles two or three times since and this has never happened before. His body just feels worn out and exhausted all the time, like he's a 70-year-old man, and he's only 34.

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Stay in touch with Derek on Twitter, Facebook and Substack. His next book is "Hero's Dose: The Case For Psychedelics in Ritual and Therapy."

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