Lauren Nichols has been sick with COVID-19 since March 10, shortly before Tom Hanks announced his diagnosis and the NBA temporarily canceled its season. She has lived through one month of hand tremors, three of fever, and four of night sweats. When we spoke on day 150, she was on her fifth month of gastrointestinal problems and severe morning nausea. She still has extreme fatigue, bulging veins, excessive bruising, an erratic heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds, and brain fog. Even writing an email can be hard, she told me, “because the words I think I’m writing are not the words coming out.” She wakes up gasping for air twice a month. It still hurts to inhale.
Tens of thousands of people, collectively known as “long-haulers,” have similar stories. I first wrote about them in early June. Since then, I’ve received hundreds of messages from people who have been suffering for months—alone, unheard, and pummeled by unrelenting and unpredictable symptoms. “It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say, ‘This is you for today,’” says David Putrino, a neuroscientist and a rehabilitation specialist at Mount Sinai Hospital who has cared for many long-haulers.
Of the long-haulers Putrino has surveyed, most are women. Their average age is 44. Most were formerly fit and healthy. They look very different from the typical portrait of a COVID-19 patient—an elderly person with preexisting health problems. “It’s scary because in the states that are surging, we have all these young people going out thinking they’re invincible, and this could easily knock them out for months,” Putrino told me. And for some, months of illness could turn into years of disability.
Our understanding of COVID-19 has accreted around the idea that it kills a few and is “mild” for the rest. That caricature was sketched before the new coronavirus even had a name; instead of shifting in the light of fresh data, it calcified. It affected the questions scientists sought to ask, the stories journalists sought to tell, and the patients doctors sought to treat. It excluded long-haulers from help and answers. Nichols’s initial symptoms were so unlike the official description of COVID-19 that her first doctor told her she had acid reflux and refused to get her tested. “Even if you did have COVID-19, you’re 32, you’re healthy, and you’re not going to die,” she remembers him saying. (She has since tested positive.) […]
A few formal studies have hinted at the lingering damage that COVID-19 can inflict. In an Italian study, 87 percent of hospitalized patients still had symptoms after two months; a British study found similar trends. A German study that included many patients who recovered at home found that 78 percent had heart abnormalities after two or three months. A team from the Centers for Disease Control and Prevention found that a third of 270 nonhospitalized patients hadn’t returned to their usual state of health after two weeks. (For comparison, roughly 90 percent of people who get the flu recover within that time frame.)
These findings, though limited, are galling. They suggest that in the United States alone, which has more than 5 million confirmed COVID-19 cases, there are probably hundreds of thousands of long-haulers.
- Friendly Bob Adams - Thursday, Aug 20, 20 @ 1:52 pm:
Whenever it seems that we have a handle on this disease, new manifestations are identified. There is no treatment and no one knows how long a given individual can suffer with these problems. It’s scary to think of how many people are involved.
- Big Jer - Thursday, Aug 20, 20 @ 1:54 pm:
I did not frequent the Atlantic much before COVD-19 but Ed Yong’s articles concerning COVD-19 have been some of the best writing around. All must reads.
- Candy Dogood - Thursday, Aug 20, 20 @ 2:00 pm:
Employers be like: No. Been 10 days get back to work.
- Nobody Sent - Thursday, Aug 20, 20 @ 2:06 pm:
Despite there being so much to learn about this illness, many of our school administrators insist it’s ok to bring the kids back — what’s the worst that could happen, right?
- Last Bull Moose - Thursday, Aug 20, 20 @ 2:08 pm:
We are still in the early days of learning about this disease. The more we know the more dangerous it is.
Shingles comes decades after chicken pox. Wonder what will come of Covid in the coming decades.
- Mama - Thursday, Aug 20, 20 @ 2:09 pm:
Are the COVID-19 Long-haulers eligible for Disability benefits?
- Six Degrees of Separation - Thursday, Aug 20, 20 @ 2:12 pm:
Candy - maybe your employer is like that. Most of the professional and financial service firms I have been in contact with (my employer included) have pretty much resigned themselves to Work From Home as the new normal at least as an employee option [some have not re-opened their physical offices even yet], and are long term planning to reduce their now-unneeded office space.
https://www.npr.org/2020/06/22/870029658/get-a-comfortable-chair-permanent-work-from-home-is-coming
Of course, some occupations don’t lend themselves to WFH and as usual, the worst abuses of pushing the envelope are in lower wage occupations.
- Chicago Cynic - Thursday, Aug 20, 20 @ 2:12 pm:
Terrifying. Just terrifying.
- @misterjayem - Thursday, Aug 20, 20 @ 2:15 pm:
But the stupidest classmates from my high school are on Facebook saying it’s no big deal, so who can tell, rite?
– MrJM
- Groundhog Day - Thursday, Aug 20, 20 @ 2:24 pm:
Yes, I have been following these reports which are burgeoning in the scientific literature. And why I believe it is folly to push forward with sports and in-person school.
- Club J - Thursday, Aug 20, 20 @ 2:26 pm:
This is so scary. I read through this twice thinking how scared she has to be not knowing what lasting effects she’ll have. Today I read a post from a friend who is recovering from COVID. Been in the hospital nine days and had a stroke which as left his face paralyzed on the right side.
Yet people are mad because the Governor won to make children wear masks to school in court the other day. I don’t get it.
- Don't Bloc Me In - Thursday, Aug 20, 20 @ 2:34 pm:
I’ve been concerned for some that long-haulers and people who end up with complications are being overlooked. Health departments do not report them, a serious oversight. My biggest fear of COVID is not dying, but being left disabled. Yet, the theme I’m hearing now is that the virus must be weakening, people aren’t dying as often, so no worries. Of course, Bailey blames it on testing. Health departments, medical professionals, and reporters need to up their games on this.
- Keyrock - Thursday, Aug 20, 20 @ 2:34 pm:
Mama—In order to get Social Security disability, in general, the disability must prevent you from working (or be likely to prevent you from working) for one year. Nobody can say that about COVID yet. (Private disability insurance is different,)
- Ok - Thursday, Aug 20, 20 @ 2:39 pm:
Can confirm
- Froganon - Thursday, Aug 20, 20 @ 3:00 pm:
These poor people. How amazing (and telling) that reams of scientific interviews and info on web sites is discarded as fake news but an initial fairy tale about this is just a flu and only affects sick, old people hangs on like revealed doctrine. When I find the story I like, the facts be (banned word).
- Mama - Thursday, Aug 20, 20 @ 3:05 pm:
Rich, thank you for providing this much needed information.
- Mama - Thursday, Aug 20, 20 @ 3:12 pm:
- Anonymous - Thursday, Aug 20, 20 @ 3:12 pm: was me. Sorry
- dan l - Thursday, Aug 20, 20 @ 3:17 pm:
//Most of the professional and financial service firms I have been in contact with (my employer included) have pretty much resigned themselves to Work From Home as the new normal at least as an employee option [some have not re-opened their physical offices even yet], and are long term planning to reduce their now-unneeded office space.//
Yeah I’m in a way different sector but my employer has made a global announcement that we will dramatically increase work from home. The office is open, and I go in once a week just so that I don’t forget where the building is.
- Mama - Thursday, Aug 20, 20 @ 3:20 pm:
“In order to get Social Security disability, in general, the disability must prevent you from working (or be likely to prevent you from working) for one year.”
How are people suppose to pay their bills who are disabled due to the Long COVID-19, but have not had it for one year yet?
- DuPage - Thursday, Aug 20, 20 @ 3:45 pm:
Some viruses like polio, gillion-beret, shingles, hepatitis, etc., can leave permanent damage even after the initial infection appears to be gone. It appears Covid-19 can do the same.
- illinifan - Thursday, Aug 20, 20 @ 3:48 pm:
I know of a long hauler who is on oxygen due to sudden drops in blood oxygen levels, also has chronic fatigue, confusion, short term memory loss etc. Similar symptoms to Putrino. So much needs to learned about this virus. That said, many viruses can cause similar issues so we have can look at those. As to disability benefits, if doctors diagnose a person with CFS triggered by COVID, there is disability listing for the CFS illness. So even though COVID is new the illnesses created by COVID the illnesses triggered by COVID are not new. Hopefully doctors and disability examiners can use this information.
- Nikki Six - Thursday, Aug 20, 20 @ 3:52 pm:
=Employers be like: No. Been 10 days get back to work.=
If your employer has over 50 employees, then the employer is required to provide up to 12 weeks FMLA.
Also many employers provide short-term and long term disability insurance to employees. If you are employed, its really important to check your employers benefits plan and know your rights.
- Bigtwich - Thursday, Aug 20, 20 @ 4:22 pm:
==How are people suppose to pay their bills who are disabled due to the Long COVID-19, but have not had it for one year yet?==
It is not had it for one year. the proof would have to be it is likely to prevent you from working for one year.
- Lt Guv - Thursday, Aug 20, 20 @ 4:32 pm:
== But the stupidest classmates from my high school are on Facebook saying it’s no big deal, so who can tell,? ==
My 40th HS reunion would have been this year. Last week, I got the invitation saying, “given the pandemic, we’ve postponed until next year.” Great, common sense rules.
Not so fast. Then it goes on to say, “well we’ll be doing an informal get together at this bar on the evening of Sept. 11th.” Not only foolish, but inappropriate as well. Jeez.
- Dotnonymous - Thursday, Aug 20, 20 @ 4:45 pm:
COVID 19 is still largely a mystery virus…despite what the pillow sellers claim.
- zatoichi - Thursday, Aug 20, 20 @ 5:32 pm:
But it is just going to disappear and the My Pillow guy says there is a new miracle cure. What else do you need to know?
- dan l - Thursday, Aug 20, 20 @ 6:40 pm:
//Not so fast. Then it goes on to say, “well we’ll be doing an informal get together at this bar on the evening of Sept. 11th.” Not only foolish, but inappropriate as well. Jeez.//
sounds like a great zoom call candidate
- dr. reason a. goodwin - Thursday, Aug 20, 20 @ 9:10 pm:
History will show that Gov. Pritzker has been one of the few governors. who have done what is wise, rather than what is popular.
- thoughts matter - Thursday, Aug 20, 20 @ 9:50 pm:
== 480,000 people die a year in the u.s. from cigarettes. 41,000 from second hand smoke==
People who smoke are knowingly doing damage to their bodies. They aren’t having damage unknowingly done to them by others.
The second hand smoke correlation is more apropos. However, we’ve lost 4 times that number in 5 months.
Even the second hand smoke is at least detectable and we’ve done what we can to limit it. No smoking indoors in public places, no smoking in cars around children. Educating people about dangers there of. Most smokers go out of their way these days not to blow smoke near someone else. Whereas many people refuse to wear masks to protect others.