Imagine being young and healthy, a non-smoker without pre-existing health conditions, and then waking up one morning when you are polluted by an unseen force. Back in March, this was my reality.
I had just returned from Europe, and about 10 days later I started to have flu-like symptoms. I became weak last night and had trouble breathing. It felt like jogging in the Rocky Mountains without being able to, only I was not moving. I went to the hospital, where I was tested for COVID-19.
I was one of the first people in Texas to get a non-FDA approved test. My results came back negative. As a social epidemiologist dealing with big data, I was sure it was a false negative.
More than four months later, the symptoms do not go away. My heart still runs, even when I rest. I can not stay long in the sun; it gets all my energy. I have gastrointestinal problems, ringing in the ears and pain in the chest.
I am what is known as a long-hauler – part of a growing group of people who have COVID-19 and have never fully recovered. Fatigue is one of the most common persistent symptoms, but there are many others, including the cognitive effects that people often describe as concussion. As more patients have these persistent symptoms, employers will need to find ways to work with them. It’s too fast to say we’re out, but it’s too fast to know how long the damage will last.
The frustration of not knowing
What made matters worse in the beginning was that my doctors were not sure I had COVID-19. My test was negative and I had no fever, so my symptoms did not fit into early descriptions of the disease. Instead, I was diagnosed with a shortness of breath, prescribed the anti-Z pack and a low dose of an anti-inflammatory medication normally used for arthritis patients.
A Yale study published in May shows that COVID-19 deaths in America do not reflect the true mortality rate. If I had died at home, my death would not have been counted as COVID-19.
By the end of March, I was on my way to recovery. Then I had a batter. In the ER, the doctor said I had COVID-19 and that I was lucky – tests showed that my organs had no permanent damage. After the seizure, I lay for weeks in my bedroom with the curtains drawn, as light and sound began to fade.
The search for answers
I did not understand why I did not recover. I started searching online for answers. I found a support group for people who have long struggled with COVID-19. They called themselves longboats.
Support groups COVID-19 show that there are many people who are not considered sick enough to be hospitalized – and yet they experience symptoms less than the flu. It is possible COVID-19 is neurotoxic and is one of the first diseases that can cross the blood-brain barrier. This may explain why many people like me have neurological problems. Many long-haulers experience post-viral symptoms similar to those caused by mononucleosis and myalgic encephalomyelitis / chronic fatigue syndrome.
A common frustration is that some medical doctors dismiss their complaints as psychological.
One woman in the support group wrote: “140 days later is so hard to breathe, and no doctors will take me seriously because I was diagnosed with a negative swab and negative antibodies.”
[Get the best of The Conversation, every weekend. Sign up for our weekly newsletter.]Paul Garner was the first epidemiologist to publicly share his COVID status. He described his 7-week battle with the coronavirus in a blog post for the British medical journal The BMJ. In July, I was interviewed by ABC. That same month, an Indiana University researcher working with an online community of long-distance carriers published a report identifying more than 100 symptoms, and the CDC expanded its list of characteristics that put people at greater risk for pregnancy. COVID-19 symptoms develop. On July 31, the CDC also recognized that young people can experience long-term symptoms without prior medical problems.
It is still unclear why COVID-19 affects some people more severely than others. Emerging evidence suggests that blood type may play a role. However, data are mixed.
A Dutch study found immune cells TLR7 – Toll-like receptor 7 located on the X chromosome – needed to detect the virus do not work well in some patients. This allows COVID-19 to move uncontrollably through the immune system. Men do not have an extra X chromosome to rely on, suggesting that men, instead of women, may experience more severe COVID-19 symptoms.
Many survivors of COVID-19 report that they have no antibodies to SARS-CoV-2. Antibody tests have a low accuracy rate, and data from Sweden suggest that T-cell responses may be more important for immunity. Emerging evidence found CD and CD8 memory T cell response in some people recovered from COVID-19, regardless of whether antibodies were present. A La Jolla Institute for Immunity study identified SARS-CoV-2-specific responses to T-cell memory in some people who were not exposed to COVID-19, which may explain why some people get sicker than others. The full role of T-cell response is not known, but recent data are promising.
Prospects in an economy of long traders
Like many long-haulers, my goal is to restore a normal life.
I still struggle with a host of post-viral problems, including extreme fatigue, concussions and headaches. I spend most of my day resting.
A major challenge facing long-term traders may be job retention. Finally, it is too early to classify long-distance riders as a constraint. Anthony Fauci reported that “it will take months to a year or more to see if the persistent COVID-19 symptoms in young people can be chronic diseases.”
Economy is a major driver of health, and the link between employment and health care in America increases the need to maintain employment to protect health. Employers must be willing to make accommodations to keep long-distance workers at work. The stress of longing to be sick, combined with the possibility of job loss, can also contribute to mental health issues.
To effectively combat COVID-19 and understand the risks, these patients with persistent symptoms should be studied. Online support groups help long-distance carriers feel understood.
This article has been republished from The conversation, a nonprofit news site dedicated to sharing ideas from academic experts.
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Margot Gage Witvliet does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has not disclosed any relevant relationships beyond its academic designation.
