It has been nearly 3 months for Vonny LeClerc, a 32-year-old journalist from Glasgow, Scotland. Nearly 3 months of extreme fatigue, joint pain, body aches, chest pain, intermittent fevers and coughing. When she first came down with COVID-19 symptoms and lost her senses of smell and taste by week 2, Vonny believed that she’d battle the novel virus and then recover within a few weeks. But now, Vonny is part of a group known as long haulers, people with mild to moderate COVID-19 symptoms that stick around for months.
As Ed Yong reports in The Atlantic, these long haulers are stuck in a void, neither sick enough for hospitalization or well enough to live their lives. So now, it is time not only to tell their stories, but to raise awareness of aspects of COVID-19 that we may not have noticed before.
The Long Haulers and COVID-19 Discourse
For months, COVID-19 has dominated headlines across the globe. What began as a viral outbreak in Wuhan, China turned into a viral pandemic in 213 territories and countries. As of June 5, there are 6.42 million confirmed cases with 383,000 fatalities. However, the actual numbers are thought to be even higher. Unfortunately, many people cannot be tested due to a lack of resources.
More information is emerging on COVID-19 each day. According to the World Health Organization (WHO), around 80% of COVID-19 infections are asymptomatic, mild, or moderate. Only around 10% of diagnosed patients will experience severe respiratory reactions requiring ventilation. For others, the average recovery time is around 2 weeks.
Long haulers fall into a strange and discomforting spot: in between the asymptomatic/mild cases and those with severe symptoms. As a result, long haulers and their experiences are being left out of the discourse around COVID-19. Data might track diagnoses, recoveries, and deaths. But what about those still grappling with symptoms after months? Where do they fit into the narrative?
Some long haulers report symptoms that break from the fever, cough, chest pain, and loss of smell or taste commonly attributed to COVID-19. These include:
- Cough (as commonly reported)
- Fever (as commonly reported)
- Difficulty with concentration
- Memory loss
- “Brain fog”
- Hallucinations, delusions, or paranoia
- Vibrations when touching objects or surfaces
- Difficulty breathing and shortness of breath
- Chest pain and tightness, similar to a heart attack
Long Haulers: Their Stories
Vonny LeClerc is one of these people. But although she hasn’t been tested, her doctor noted that he did believe she was COVID-19 positive. Prior to her symptoms appearing in March, Vonny considered herself to be relatively fit and healthy. She went to work and the gym, shopped regularly, and worked at her job. Now, despite not needing hospitalization, her quality of life significantly decreased. She can no longer shower without feeling tired out. Even visiting the grocery store results in days-long recovery periods. In regards to leisure time, Vonny states:
“Even reading a book is challenging and exhausting. What small joys [like yoga or bread baking] other people are experiencing in lockdown are beyond the realms of possibility for me.”
Chloe Kaplan is an educational worker who lives in Washington, D.C. Her COVID-19 symptoms have lasted for over 79 days. But while she, like many other long haulers, is feeling tired and overwhelmed, she faces additional scrutiny from those around her: friends, family, doctors. Couldn’t she just be overwhelmed? Maybe it’s stress? Are you sure you’ve been resting enough? The constant questioning, confusion, and doubt leaves Chloe feeling isolated. Instead, she hopes people will listen to these stories and educate themselves:
“[on] the middle ground, where [COVID-19] knocks you off your feet for weeks, and you neither die nor have a mild case.”
Hannah Davis, a NYC-based artist, has experienced symptoms for over 72 days. Much like Chloe, she struggles with getting people to understand the middle ground, this limbo that she’s become stuck in. She describes this as “hellish,” when her friends and family fail to understand how she feels because she is neither asymptomatic, hospitalized, or dead. Additionally, her doctors have not been helpful. When she described her memory loss and difficulty concentrating, the doctor diagnosed her with ADHD. In describing her frustration, Hannah states:
“These are the people [I’m] trying to get serious help from, and they don’t even understand [my] reality.”
Felicity Callard, a geographer in Scotland, also advocates for improved education. Currently, the narrative around COVID-19 rests on the idea that younger, healthier individuals are not at risk. Rather, the media perpetuates the idea that the only people who will get extremely ill, or die, from COVID-19 are old, obese, unhealthy, and those with other underlying conditions. Because of this, some people feel comfortable with less self-isolation. After all, if they do get the virus, they’ll get over it soon enough, right?
But on Somatosphere, Felicity explains not only her own experience with COVID-19 but the problems with this thinking. She writes that this line of thinking, this framework:
combats panic by reassuring what is imagined to be a febrile population about the general mildness of a new illness that will be life-threatening for only a very small proportion. [It also makes] ‘not hiding’ from [COVID-19] a manageable and sensible undertaking.
Over 78 days into her symptoms, Felicity writes about concerns of many long haulers: that these so-called “mild” symptoms, like her perpetually fuzzy thinking, may be causing more long-term damage than doctors know.
Paul Garner, an infectious-diseases professor, isn’t new to getting sick. In the past, he conquered malaria and dengue fever. But despite testing negative for COVID-19, Paul‘s symptoms have lasted for over 78 days. He waited to get tested under the belief that he thought he might die from his symptoms; he didn’t want to infect anyone else or take a test that he didn’t need. Regardless, he feels that he was, at some point, positive for COVID-19. To this day, he notes:
“I don’t understand what’s happening in my body.”
However, Garner is confident that, despite his symptoms, he is not shedding the virus. Thus, he is no longer contagious.
Fiona Lowenstein undoubtedly had COVID-19. In fact, the 26-year-old writer and yoga teacher was hospitalized on March 17 for her severe symptoms. In an article in The New York Times, Fiona writes:
I woke up in the middle of the night with chills, vomiting, and shortness of breath. By Monday, I could barely speak more than a few words without feeling like I was gasping for air.
After her release, Fiona’s wellness organization, called Body Politic, created a Slack group for long haulers and others impacted by COVID-19. One Slack channel is specifically targeted towards long haulers. With a requirement of symptoms lasting for over one month, the group has over 3,700 contributing members. Interested in joining? Sign up here.
When design consultant Gina Assaf found the Slack group, she felt relieved, supported, and no longer alone. For over 78 days, Gina has struggled with symptoms. Now, alongside others, Gina created a report on COVID-19 recoveries and symptoms for long haulers.
Some information from the report includes:
- 640 people were surveyed.
- About 60% of respondents are 30-49 years old.
- 358 people (56%) were not hospitalized from their symptoms.
- 243 people (38%) visited the emergency room, but were not hospitalized.
- Around 160 people (25%) tested positive for COVID-19.
- About 160 people (25%) tested negative for COVID-19.
- About 320 people (50%) were never tested for COVID-19.
- This is believed to be the result of testing shortages in America and Europe during March, when many symptoms appeared for long haulers. Additionally, some long haulers had abnormal symptoms and were refused testing.
A Maryland-based nursing student, Meg’s symptoms have lasted over 57 days. Her fever is persistent. Over the last 2 months, there are very few times where she hasn’t been feverish. After this long, is she still contagious? Unlike Paul Garner’s belief, Meg states that COVID-19 might still be contagious as long as she has a fever – according to her local health department, at least. Meg notes that the isolation and uncertainty are frightening, leading her to somehow doubt herself. In addition to questioning whether she used her thermometer correctly, she states:
“I felt like I wasn’t being mentally strong enough, and by allowing myself to say that I don’t feel good, I was prolonging the fever.”
Why Are Long Haulers Still Experiencing Symptoms?
As long haulers have been largely left out of the conversation, there’s no clear answer on this yet. However, immunologist Akiko Iwasaki shares three potential hypotheses:
- Most tests rely on nasal swabs. However, COVID-19 might be present in another organ that cannot be tested.
- The virus may have fragmented. Although those fragments are not infectious, their position in the body causes long haulers’ immune systems to continually react.
- Long haulers did have COVID-19, but don’t any longer. However, their immune system is now stuck overreacting.
However, the uncertainty is frightening. Perhaps even worse, these hypotheses are not being studied due to a disbelief from the medical community. Instead of listening to patient stories, many long haulers explain how doctors partake in medical gaslighting, or downplaying, blowing off, or dismissing symptoms as not being real or being caused by stress. Unfortunately, this often happens to women, especially those with broad symptoms like fatigue.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Another possibility is that long haulers are developing ME/CFS, a chronic disorder resulting in severe fatigue that prevents people from completing daily tasks. This fatigue doesn’t improve with rest. ME/CFS affects females more often than males. Cases surge after large-scale viral infections. The connection is shown in the following studies:
- An article in The BMJ shows that, within 6 months of Ross River virus, Epstein-Barr virus, or Q fever infection, 11% of respondents had ME/CFS.
- A study in JAMA Internal Medicine found that 40% of respondents, who survived SARS, experienced chronic fatigue problems after 3 years. 27% of respondents met the clinical criteria for ME/CFS.
ME/CFS is under diagnosed in people of color, a group largely affected by COVID-19. The symptoms, and worsening fatigue following activities, are also what our long haulers experience. In the future, studies are needed to determine the relationship between ME/CFS and COVID-19.
Learn more about ME/CFS.