Back in December, Tiktoker and disability justice advocate Imani Barbarin (@crutches_and_spice) stitched a TikTok by a COVID long-hauler, adding on her commentary. In this response, Imani states that “COVID-19 is a mass disabling event.”
I saw this and thought: What is Imani talking about? Is this statement too alarmist? Is this phenomenon something we should be worried about?
What Imani is referring to is mainly the phenomenon of COVID “long-haulers,” an experience that may be more common than you think. Here, we’ll dive into what it means to be a “long-hauler,” who’s at risk, and how big of a concern this phenomenon really should be.
1. What does “long-hauler” mean?
To be a long-hauler means someone who tested had COVID-19 and is experiencing symptoms longer than expected, past the typical two-week course of the disease.
There are several terms that have been used for this phenomenon, and no single consensus definition. In the US, the term “long-hauler” is used commonly among the general population, but other terms have also been used— “long COVID” is common the UK, and terms such as “chronic COVID syndrome” (CCS), “post-COVID syndrome,” and “post-acute covid-19” have been used as well. Very recently, in late February of 2021, Dr. Fauci and the NIH referred to this phenomenon as Post-Acute Sequelae of SARS-CoV-2 infection, or PASC, as announced along with the launch of a scientific investigation into PASC.
2. How long do these symptoms last?
There is no formal consensus yet for the exact amount of time past initial infection that symptoms must last for someone to be considered a long-hauler, and definitions vary between various research studies. Generally, though, a long-hauler is anyone experiencing prolonged symptoms more than 4-12 weeks after testing positive for COVID. Many “long-hauler” individuals have come forward with their own stories about experiencing symptoms for several months, such as this New York Times journalist who describes her ordeal with long COVID, struggling with debilitating symptoms that lasted nearly seven months.
3. What kinds of symptoms do long-haulers experience?
Long-haulers experience a vast variety of symptoms, and experiences vary greatly from person to person. This post from Harvard Health Publishing states that the most common symptoms are:
- body aches
- shortness of breath
- difficulty concentrating (brain fog)
- inability to exercise
- difficulty sleeping
However, according to this publication in the BMJ about management of post-acute covid-19, other symptoms include:
- Low-grade fever
- chest pain
- neurocognitive difficulties
- muscle pains and weakness
- gastrointestinal upset
- metabolic disruption
- thromboembolic conditions (blood clots obstructing blood vessels)
- depression and other mental health conditions
- Skin rashes
[include symptoms and stats for people who were hospitalized and have lung problems now…?/more clear issues?? May take too much time to do extra research]
4. What percentage of those who contract COVID end up with these long-term symptoms?
Research so far seems to say that around 10% of folks who contract COVID that end up with long-term symptoms (though the percentage is higher for folks who were hospitalized due to COVID). Using the COVID Symptom Study app in the UK, King’s College London found that around 10% of individuals aged 18-49 who contract the virus end up developing “long COVID.” The risk increases for individuals over 70 years of age: 22% of individuals in this category developed “long COVID.” Again, research is still very limited as the COVID-19 pandemic is still new and ongoing, and the development of long-term symptoms is even more novel and less studied, but this existing research suggests non-insignificant occurrence of long-term symptoms.
5. Can young or “healthy” people end up as long-haulers?
Yes. Young people are also at risk, as are folks who had more mild cases of COVID for that matter. While some symptoms or prolonged issues like lung abnormalities are more common in those who had more severe cases, the vast majority of symptoms and long COVID cases are experienced by folks across the board—of all ages, and who had varying severities of COVID-19. As mentioned previously, even though 22% of people over 70 experience long COVID, there’s still 10% of people aged 18-49 experiencing long COVID.
Additionally, in A Preliminary Report of Post-COVID Syndrome in University Students, Walsh-Messinger et al. explored the prevalence and experiences of post-COVID Syndrome in university students at a private, Catholic, Midwestern university. Of those who took the survey and had had COVID-19, 51% experienced symptoms for over 28 days, “and were classified as having post-COVID syndrome.”
6. So, is COVID-19 really a mass disabling event?
More time and more research will tell, but I’m with Imani on this one. If not a mass disabling event, COVID will at least be a mass temporary disabling event.
As of 12:26pm on March 2nd, 2021, the CDC reported a total of 28,456,860 COVID-19 cases in the United States. With a population of around 328.2 million people, that’s roughly 8.7% of the U.S. population that has had COVID-19. And if roughly 10% of individuals who have COVID experience long-term symptoms, there could possibly be 2.8 million Americans who are in it for the long haul, with long-term temporary disabilities if not lifelong disabilities.
In a recent post in late January of 2021, Dr. Francis Collins (director of the NIH) commented on a study that surveyed over 3,700 COVID long-haulers from 56 different countries. This study reports that “nearly half [of respondents] couldn’t work full time six months after unexpectedly developing prolonged symptoms of COVID-19.” 88 percent of respondents also dealt with cognitive dysfunction and memory loss. “That includes the ability to make decisions, have conversations, follow instructions, and drive,” Dr. Collins added.
Some of the country’s top health officials have commented on the public health impact of PASC as well. In a recent post by the NIH, Dr. Collins states that, “given the number of individuals of all ages who have been or will be infected with SARS-CoV-2 [...] the public health impact could be profound.” Dr. Fauci has reported similar predictions about the looming public health crisis of PASC, or long COVID. New York Times journalist Laura Holson reported Dr. Anthony Fauci’s cautionary words in December during an NIH workshop on Long COVID: “even if long Covid affected a small proportion of the millions of people infected with the virus, it is ‘going to represent a significant public health issue.’”
Harry Paul, a disabled doctor-in-training, also expanded on the many intersections of COVID, long COVID, and disability in his opinion post, “Covid-19 long-haulers and the experience of ‘hidden’ disabilities.” In this piece, he discusses how nonmobility disabilities, such as long COVID, are overlooked, or how long COVID patients describe facing medical gaslighting and difficult convincing doctors to listen—a common experience for many in the disabled community.
Even lack of access to initial COVID testing to prove a positive diagnosis could be a huge barrier, Paul highlights. “When seeking medical care, even those with stark symptoms are being required to prove they had Covid-19 with test results, despite the lack of access to testing. These individuals will face additional barriers as they seek accommodation in work, school, and their social lives.”
Where we’ll be in one, two, or even ten years’ time in the aftermath of this pandemic still remains unknown. But we may very well emerge from this pandemic with a massive increase in the disabled population—and these people will need the support of a strong community and disability advocates.