Imagine being young and healthy, a nonsmoker with no preexisting health conditions, and then waking up one morning feeling like you were being suffocated by an unseen force. Back in March, this was my reality.
I had just returned from Europe, and roughly 10 days later started having flu-like symptoms. I became weak overnight and had trouble breathing. It felt like jogging in the Rocky Mountains without being in condition, only I wasn't moving. I went to the hospital, where I was tested for COVID-19.
I was one of the first people in Texas given a non-FDA-approved test. My results came back negative. As a social epidemiologist who deals with big data, I was certain it was a false negative.
More than four months later, the symptoms have not gone away. My heart still races even though I am resting. I cannot stay in the sun for long periods; it zaps all of my energy. I have gastrointestinal problems, ringing in the ears and chest pain.
I'm what's 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 people often describe as brain fog. As more patients face these persistent symptoms, employers will have to find ways to work with them. It's too soon to say we're disabled, but it's also too soon 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 certain 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 respiratory illness, prescribed the Z-pack antibotic and a low dosage of an anti-inflammatory medication normally used for arthritis patients.
A Yale study released in May shows COVID-19 deaths in America do not reflect the pandemic's 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 the road to recovery. Then I had a seizure. In the ER, the doctor said I had COVID-19 and that I was lucky – tests showed my organs did not have lasting damage. After the seizure, I lay in my bedroom for weeks with the curtains drawn, because light and sound had started to hurt.
The search for answers
I did not understand why I was not recovering. I began searching for answers online. I found a support group for people struggling with COVID-19 long-term. They called themselves long-haulers.
COVID-19 support groups show that there are many people not considered sick enough to be hospitalized – yet they are experiencing symptoms worse than the flu. It is possible COVID-19 is neurotoxic and is one of the first illnesses capable of crossing the blood-brain barrier. This might explain why many people like me have neurological problems. Many long-haulers are experiencing 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, so many are hard to breathe, and no doctors will take me seriously as I was diagnosed with a negative swab and negative antibodies."
Paul Garner was the first epidemiologist to publicly share his COVID status. He described his 7-week fight with the coronavirus in a blog post for the British medical journal The BMJ. In July, I was interviewed by ABC. That month, an Indiana University researcher working with an online community of long-haulers released a report identifying over 100 symptoms, and the CDC expanded its list of characteristics that put people at greater risk of developing severe COVID-19 symptoms. On July 31, the CDC also acknowledged that young people with no prior medical issues can experience long-term symptoms.
It's still unclear why COVID-19 impacts some people more severely than others. Emerging evidence suggests blood type might play a role. However, data are mixed.
A Dutch study found immune cells TLR7 – Toll-like receptor 7 located on the X chromosome – which is needed to detect the virus is not operating properly in some patients. This allows COVID-19 to move unchecked by the immune system. Men do not have an extra X chromosome to rely on, suggesting that men, rather than women, may experience more severe COVID-19 symptoms.
Many COVID-19 survivors report having no antibodies for SARS-CoV-2. Antibody tests have a low accuracy rate, and data from Sweden suggest T-cell responses might be more important for immunity. Emerging evidence found CD4 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 memory T-cell responses in some people who were not exposed to COVID-19, which might explain why some people get sicker than others. The complete role of T-cell response is unknown, but recent data are promising.
Looking ahead in an economy of long-haulers
Like many long-haulers, my goal is to resume a normal life.
I still grapple with a host of post-viral issues, including extreme fatigue, brain fog and headaches. I spend the majority of my day resting.
A big challenge long-haulers face may be sustaining employment. Ultimately, it is too early to classify long-haulers as having a disability. Anthony Fauci reported that "it will take months to a year or more to know whether lingering COVID-19 symptoms in young people could be chronic illnesses."
Economics is a big driver of health, and the link between employment and health care in America further exacerbates the need to maintain employment to protect health. Employers need to be ready to make accommodations to keep long-haulers working. The stress of being sick long-term, combined with the possibility of job loss, can also contribute to mental health issues.
To effectively fight COVID-19 and understand the risks, these patients with continuing symptoms must be studied. Online support groups, meanwhile, are helping long-haulers feel understood.
Margot Gage Witvliet is an Assistant Professor of Social Epidemiology at Lamar University.
This article first appeared on The Conversation. You can read about it here.
Ultrasound of human baby.Image via 
IVF animated process.Image via 
A couple speaks with a fertility professional.Image via 
Love, Mom.Photo from Heidi Johnson 
A teen boy having a hard time. 
Hands hold a digital representation of the brain.Image via 
Mother and daughter work a puzzle.Image via 
Man and woman connect under the sunshine.Image via 
The obituary paints a comic, if bleak, picture. 
A Facebook post about the obituary.
Why do some folks use social media but don't engage?
Psychologist says people who never comment on social media share these 5 positive traits
For over 20 years, social media has developed into a staple in many people’s day-to-day lives. Whether it’s to keep in communication with friends and family, following the thoughts of celebrities, or watching cat videos while sipping your morning coffee, there seem to be two types of social media users: commenters and lurkers.
The term “lurker” sounds equally mysterious and insidious, with some social media users writing them off as non-participants at best or voyeurs at worst. However, mindfulness expert Lachlan Brown believes these non-commenters have some very psychologically positive and healthy traits. Let’s take a look at how each one of these traits could be beneficial and see how fruitful lurking might be even though it can drive content creators crazy.
1. Cautious about vulnerability
Consciously or not, making a post online or commenting on one puts you and your words out there. It’s a statement that everyone can see, even if it’s as simple as clicking “like.” Doing so opens yourself up to judgment, with all the good, bad, and potential misinterpretation that comes with it. Non-commenters would rather not open themselves up to that.
These silent users are connected to a concept of self-protection by simply not engaging. By just scrolling past posts or just reading/watching them without commentary, they’re preventing themselves from any downsides of sharing an opinion such as rejection, misunderstanding, or embarrassment. They also have more control on how much of themselves they’re willing to reveal to the general public, and tend to be more open face-to-face or during one-on-one/one-on-few private chats or DMs. This can be seen as a healthy boundary and prevents unnecessary exposure.
Considering many comment sections, especially involving political topics, are meant to stir negative emotional responses to increase engagement, being extra mindful about where, when, and what you comment might not be a bad idea. They might not even take the engagement bait at all. Or if they see a friend of theirs post something vulnerable, they feel more motivated to engage with them personally one-on-one rather than use social media to publicly check in on them.
2. Analytical and reflective mindset
How many times have you gone onto Reddit, YouTube, or any other site and just skimmed past comments that are just different versions of “yes, and,” “no, but,” or “yes, but”? Or the ever insightful, formerly popular comment “First!” in a thread? These silent browsers lean against adding to such noise unless they have some valid and thoughtful contribution (if they bother to comment period).
These non-posters are likely wired on reflective thinking rather than their initial intuition. Not to say that all those who comment aren’t thoughtful, but many tend to react quickly and comment based on their initial feelings rather than absorbing the information, thinking it over, researching or testing their belief, and then posting it. For "lurkers," it could by their very nature to just do all of that and not post it at all, or share their thoughts and findings privately with a friend. All in all, it’s a preference of substance over speed.
3. High sense of self-awareness
Carried over from the first two listed traits, these silent social media users incorporate their concern over their vulnerability and their reflective mindset into digital self-awareness. They know what triggers responses out of them and what causes them to engage in impulsive behavior. It could be that they have engaged with a troll in the past and felt foolish. Or that they just felt sad after a post or got into an unnecessary argument that impacted them offline. By knowing themselves and seeing what’s being discussed, they choose to weigh their words carefully or just not participate at all. It’s a form of self-preservation through restraint.
4. Prefer to observe rather than perform
Some folks treat social media as information, entertainment, or a mix of both, and commenting can feel like they’re yelling at the TV, clapping alone in a movie theater when the credits roll, or yelling “That’s not true!” to a news anchor that will never hear them. But contrary to that, social media is a place where those yells, claps, and accusations can be seen and get a response. By its design, social media is considered by experts and the media as performative, regardless of whether it is positive or negative. Taking all of the previously mentioned traits into account, one can see why they would prefer to “observe the play” rather than get up on the stage of Facebook or X.
On top of that, these non-commenters could be using social media differently than those who choose to fully engage with it. Using this type of navigation, there may be nothing for them to comment about. Some commenters are even vying for this for their mental health. There are articles about how to better curate your social media feeds and manipulate algorithms to create a better social media experience to avoid unnecessary conflict or mentally tiring debate.
If you go on a blocking spree on all of your accounts and just follow the posters that boost you, it could turn your social media into a nice part of your routine as you mainly engage with others face-to-face or privately. In terms of commenting, if your curated Instagram is just following cute dogs and all you have to offer for a comment is “cute dog,” you might just enjoy the picture and then move on with your day rather than join in the noise. These non-commenters aren’t in the show and they’re fine with it.
5. Less motivated by social validation
The last trait that Brown showcases is that social media users who browse without posting tend to be independent from external validation, at least online. Social media is built to grow through feedback loops such as awarding likes, shares, and reposts of your content along with notifications letting you know that a new person follows you or wants to connect. This can lead many people to connect their activity on social media with their sense of self worth, especially with adolescents who are still figuring out their place in the world and have still-developing brains.
Engaging in social media via likes, shares, comments, and posts rewards our brains by having them release dopamine, which makes us feel good and can easily become addictive. For whatever reason, non-commenters don’t rely on social media as a means to gauge their social capital or self worth. This doesn’t make them better than those who do. While some non-commenters could have healthier ways to boost their self worth or release dopamine into their systems, many get that validation from equally unhealthy sources offline. That said, many non-commenters’ silence could be a display of independence and self confidence.
Whether you frequently comment online or don’t, it’s good to understand why you do or don’t. Analyzing your habits can help you determine whether your online engagement is healthy, or needs to be tweaked. With that information, you can then create a healthy social media experience that works for you.