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Life as a Covid-19 Long-Termer

It’s becoming clear that, for many people, symptoms can persist for months — and they can wreak havoc on our bodies, and our mental health

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On a damp and unseasonably cool late-March day in Southern California, Nicole Batenhorst looked around the triage tent and realized that getting a folding metal chair made her one of the lucky ones. She had just arrived at her local hospital in an ambulance after her heartbeat had become dangerously erratic, and was still wearing pajamas. The emergency room was full, so she was ushered into a triage tent set up outside, bursting with overflow patients desperate to get help and stay dry in a place with no available beds or blankets.

After about a half hour in the tent, she was given a bed inside when her heart rate dropped to 36 beats per minute. A doctor came to check on her, and almost immediately started crying. He told Batenhorst that he had to send her home because there were other patients who needed the bed more. “That was terrifying — seeing a male, middle-aged ER doctor cry like that,” says Batenhorst. “He also said that three people had died just since his shift started that morning. It was 10 a.m.”

Despite having all the usual Covid symptoms since February — and being immunocompromised and therefore considered high-risk — Batenhorst wasn’t able to get tested or receive treatment in the hospital in March. Because the tests were in such short supply, she says that the ER doctor told her he wasn’t authorized to give her one, but that he had no doubt she had Covid based on her symptoms, exam, and what he referred to as “weird spots” on her lungs that were visible in X-rays.

Now, seven months after her hospital visit and eight months after her symptoms began, Batenhorst is still debilitatingly ill. In this time, she has experienced shortness of breath, dizziness, intense headaches, severe gastrointestinal issues (causing her to lose a significant amount of weight), a consistent fever, extreme fatigue, brain fog, chest pain, arrhythmia, joint inflammation, and organ failure, among other complications. Batenhorst hasn’t left her home since her trip to the hospital in March, and hasn’t gotten an antibody test. But for a variety of reasons — including the test’s high rates of false negatives and the fact that it’s still unclear how long antibodies last after infection — the results wouldn’t necessarily clear things up.

And then there’s the toll that long-term Covid has had on her mental health. “I have been gaslighted by so many people, including several of the doctors that I tried to get to take my case,” Batenhorst explains. “Hearing ‘there’s nothing I can do for you’ repeatedly has been heartbreaking.” She has lost friends and has had to cut family members out of her life because they don’t believe she’s sick. The financial strain of being ill for so long has also been a major source of mental distress, ranging from not being able to afford basic necessities like toilet paper and food, to facing imminent homelessness. “It’s been a hell of a ride,” Batenhorst tells Rolling Stone.

The president’s recent bout with Covid-19 — coupled with his messaging around the virus — isn’t helping. On October 5th, I read his tweet announcing that he was going to leave Walter Reed Medical Center that evening, and immediately started sobbing. Not because I expected more from him (I do not) or because I was in disbelief over his suspiciously short recovery timeline, but specifically because of the lines: “Don’t be afraid of Covid. Don’t let it dominate your life,” followed by his claim that he feels better than he did 20 years ago. Not only was this a slap in the face to the families and friends of the 218,000 people who have died from the virus, but a major blow to those with long-term Covid whose lives have been dominated by the condition — including myself.

Like Batenhorst, I’m one of the at least tens of thousands of people who have been experiencing Covid symptoms for months, with no end in sight. What began on April 2nd as three-and-a-half weeks of intense chest pain and burning, along with shortness of breath, has morphed into six months of extreme fatigue, debilitating headaches and body aches, a rheumatoid arthritis diagnosis, basically every gastrointestinal issue you can think of, and neurological symptoms like serious brain fog and loss of depth perception.

As someone who came into the pandemic being treated for depression, anxiety, and PTSD, I knew things were about to get worse — but I never expected it to this extent. The past few weeks in particular have been incredibly challenging. At this point, we’re used to people not believing that we’re still sick, and know that being invalidated on a national level by the president of the United States will make our lives even more difficult.

USA, California, Hawthorne

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If anything, the varied and sometimes unusual physical and neurological effects of the virus deserve — and require — more attention and research. And the impact of long-term Covid symptoms is taking its toll on our bodies, and brains; it has been catastrophic to our mental health. Between coming to terms with our new limitations, dealing with the rollercoaster of symptoms that wax and wane, the uncertainty of not knowing when (or if) we’ll start to feel better, and constantly having to defend and advocate for ourselves — even to well-meaning friends and family members — it’s hard not to feel completely hopeless.

What is long-term Covid-19?

For Tammy Edwards and her husband Brian Edwards of Tacoma, Washington, the past six months have been a nightmare. Both have been dealing with Covid symptoms since April — including 11 days Brian spent on a ventilator — and it has taken a major toll on not only their physical health, but their mental health as well. “Not a day goes by where we don’t worry about the long-term effects this virus has taken on our bodies,” Tammy tells Rolling Stone. “I would like people to know that long-haulers are not exaggerating about their lingering and ever-changing symptoms. What we feel each week is bizarre and we are scared.”

At this point, it’s too early to know the full trajectory of a Covid-19 diagnosis, and in turn, the “normal” length of the illness. For this reason, several of the doctors interviewed for this article were hesitant to refer to what so many of us are experiencing now as “long-term” cases or symptoms of COVID-19. While that’s fair, it’s not an excuse to overlook those who are now several months in, just because we don’t have the data to firmly establish a recovery timeline. Whether or not we’ll be considered Covid “long-termers” or “long-haulers” moving forward — once we have the benefits of hindsight and more information — remains to be seen. So far, findings from two published studies indicate that between 50% and 90% of people with Covid continue to have symptoms of the viral infection three months after first getting sick, even after they’ve tested negative. And while it’s great that research specifically on long-termers is currently underway — which is itself a crucial step — we’re (still) sick now.

Because we’ve been told repeatedly that the novel coronavirus typically works its way through the body over the course of two weeks (hence 14-day quarantines), those of us who have been sick longer than that have faced constant questions and disbelief. But as it turns out, there is strong medical precedent of viral illnesses that continue to activate the immune system, even long after the virus is gone. “Some people have had persistence in fatigue, brain fog, and malaise [following a viral illness] — and that’s been recognized for years,” says Dr. Keith Armitage, medical director of the Roe Green Center for Travel Medicine & Global Health at University Hospitals in Cleveland. For now, we’re still figuring out whether this will be the case for Covid-19.

The mental health impact of long-term Covid

Back in March, when EMTs arrived at her house to bring her to the ER, Batenhorst says that a fireman took one look at her pale, exhausted face and declared, “Oh god, here’s another one,” before asking if she had a history of anxiety or depression. By this point, her neighbors started coming out of their houses to catch a glimpse of the action, and Batenhorst says that she told the fireman that it was none of his business. After demanding that she answer the questions, Batenhorst told him that she was diagnosed with minor anxiety following a period of severe health complications — at which point the fireman threw his hands up in the air in frustration and disbelief. It was only after the ambulance driver intervened, took her vitals, and insisted that she was legitimately sick that she had the privilege of being brought to the hospital

This is another common experience among people — including myself — who have sought medical help after living with long-term Covid for months: being told that all of our physical, mental, and neurological symptoms are simply manifestations of our anxiety or depression. If, like Batenhorst and me, a long-termer has previous mental health diagnoses, it makes it even easier for the doctor to completely disregard our concerns. Part of the reason for that, according to Dr. Laura K. Murray, a clinical psychologist and senior scientist at Johns Hopkins University’s Bloomberg School of Public Health, is that fatigue, decreased energy, and trouble concentrating — three conditions closely associated with long-term Covid — are all assessed in mental health screenings for conditions like anxiety and depression.

In 20 years of practicing as an infectious disease specialist, Armitage says that people who have had long-term health consequences resulting from viral infections often see an impact on their mental health, including feelings of frustration and frequently, depression. This can be particularly distressing, he explains, for people whose family members and friends don’t believe they’re actually sick. “The most important thing for me when treating patients who have persistent symptoms of a viral illness, is to acknowledge them and say ‘it’s not in your head,’” Armitage says, noting that he makes a point of validating his patients’ concerns and frustrations.

Then there’s also the frustration and disappointment that comes when a medical professional either dismisses your concerns completely, or simply isn’t able to help. “It has been difficult when your doctors don’t know what to test you for, so that they can properly treat you,” Tammy says. Batenhorst has faced similar challenges with doctors. “They’ll gladly charge you for a video appointment, but are they going to give you anything beyond a Z-Pak? No,” she explains, based on her own experience. “It’s like, ‘No, I don’t want your Z-Pak, I don’t have a bacterial infection.’”

Of course, for people who have lived for years with chronic illnesses, none of this is new — especially if the conditions are “invisible,” meaning that there aren’t obvious visual clues that a person is sick or living with a disability. Having any chronic illness can impact your mental health, Murray says, and while the duration of long-term Covid is still unknown (and partially because of that), it’s not uncommon for people to experience symptoms of depression. “The signs of depression — feeling discouraged or sad or hopeless — to a certain degree, is normal, and that’s really important to recognize,” she tells Rolling Stone. “If it goes into the extreme — you’re finding yourself in bed a lot, or wanting to eat all the time or never eat, or once it starts getting into a multitude of problems and symptoms and it’s happening for longer time periods — then we’ll look into depression.”

The mental burden of self-advocacy

For Tammy and Brian Edwards, the hardest part about being Covid long-termers is trying to get people to understand and validate how both physically and mentally miserable they feel. “Just because many people have mild cases and are back to work in a few weeks, it doesn’t mean that there aren’t tens of thousands like us, suffering long-term symptoms and oftentimes are disregarded,” Tammy says.

For decades, people living with chronic illness have put in innumerable hours of unpaid labor trying to educate and even simply convince the rest of us that they’re unwell and deserve certain accommodations and more research on their conditions. It’s a little different for Covid long-termers (many of whom also have existing chronic illnesses). While most people do acknowledge that Covid-19 exists and is potentially life-threatening, we’re still at the point where many believe that there are only two possible outcomes following the illness: fully recovering within a few weeks, or dying after a hospital stay involving a ventilator. It makes people uncomfortable and unsettled to find out that not everyone with Covid neatly fits into this rigid narrative. That leaves the onus on the thousands of us who don’t fit into either category to prove that we exist.

And, as Murray points out, as humans, we want other people to believe us — especially in situations like long-term Covid, where this type of disbelief acts as yet another stressor. “It gets rather personal, I think, especially if you feel like people are insinuating you did something wrong, or you are doing something wrong now to not get over it,” she explains. On top of that, Murray says that many long-termers are finding that while their friends and family may have been initially supportive during the acute phase of their illness, as the months wore on, some became significantly less understanding.

People’s disbelief comes at different levels, ranging from accusing you of making the whole thing up, to understanding that you’re sick, but then attempting to pinpoint exactly where you went wrong to end up like this. Often, the cross-examination is subtle, coming from friends and family members who genuinely want to help you, but are at a loss as to how to do that. The concern — which again, is usually coming from a good place — frequently takes the form of a barrage of questions, including but not limited to:

Did you actually test positive for the virus? What about antibodies? How do you know that you really had it and it wasn’t just a cold or the flu? [Followed by a description of that time they had a bad flu and felt horrible.] Did you even have to go to the hospital? How did you manage to get it? Were you wearing a face mask and practicing social distancing? Have you tried hydroxychloroquine, or that other new treatment I just saw on the news — you know, the one with the study? What about [insert any number of unproven natural remedies, mythical cures, or flat-out scams]? You know, our bodies react to stress in many different ways — couldn’t this just be stress or your usual anxiety?

Though we appreciate your interest in our health, the most compassionate thing you can do is believe us.

Mild cases become strange symptoms

Perhaps part of the reason it can be so difficult for people to wrap their heads around the existence of long-term symptoms, is that so many of us “only” had a mild case of Covid-19 that either didn’t require hospitalization, or didn’t qualify us for a bed in places where there was a shortage. We expect people who were put on ventilators to face long-term effects of the virus, including breathing problems, weakness, and cognitive challenges like brain fog. But for the rest of us, the assumption is that once we hit that two-week mark, we’ve recovered entirely. Not to mention that for many of us who got sick early this spring don’t have positive test results to “prove” we really had the virus because we didn’t meet the stringent testing requirements in place at the time. But doctors who have been treating long-term Covid patients, including Armitage, have noticed that most had “moderately severe cases,” with symptoms like fever, cough, and shortness of breath, but never getting to the point of requiring a ventilator or other forms of mechanically assisted breathing.

It doesn’t help that a lot of long-term Covid symptoms are really weird. Sure, there’s the expected fatigue, shortness of breath, and persistent body aches, and as debilitating as these are, it’s just the starting point. And though we’re now at the stage where we’ve accepted loss of taste and smell — and even Covid toes — as both short- and long-term symptoms of the virus, the growing list of lingering effects is far more expansive. Drawing only from my interviews with other long-termers, a small sample of these more unusual symptoms include: hair loss, degenerating eyesight, changes in menstrual cycle, changes in earwax production, tinnitus, emitting a strong sulphuric odor, having graphic nightmares then waking up with unexplained bruises, a wide variety of skin rashes, sudden loss of voice, permanently blood-shot eyes, hot flashes, shivering that morphs into uncontrollable tremors, confusion, a metallic taste in the mouth, constantly smelling cigarette smoke, loss of depth perception, muscle spasms, increased sensitivity to the sun, and pain that feels like electricity somehow got trapped inside your limbs.

And there are so many more. For this reason, many long-termers have turned to support groups on Facebook and Slack to compare notes on their strangest symptoms and experiences in recovery limbo, and engage with people who are living through the same thing. Having a space to learn more about long-term Covid that doesn’t require having to convince others that you’re actually sick, has for many, including myself, been incredibly helpful for our mental health. The relief and validation that comes from a stranger saying that they’ve been having the same oddly specific type of diarrhea cannot be overstated.

Alexandrea Rakowski, who has had Covid symptoms since mid-April, is a member of the Survivor Corps Facebook group, which currently has 110,000 members. “This group has changed my life — it showed me I was not alone,” she tells Rolling Stone. “There is a huge lack of empathy towards those who have lost their lives and those who survived this virus. This group allows us to be there for each other, while understanding on the deepest level possible.” And it’s not just moral support: Rakowski says that the group has encouraged her to reach out to her doctors about things she previously thought were unrelated, but actually turned out to be very closely related to complications of the virus. “I have no idea what I would do without Survivor Corps,” she adds. Similarly, Pam Bryce, another Covid long-termer, has used resources from the group to find doctors who take her seriously. “Before I joined, I had given up hope,” she tells Rolling Stone. “I had accepted that this virus will kill me.” Since joining, in addition to accessing information about symptoms, Bryce has also completed surveys that are part of research conducted by universities and doctors who are trying to get a better grasp on the condition.

A loss of identity

For many of us, these physiological and neurological effects have put new limitations on our bodies and brains — some of which jeopardize our very identities. For instance, professional athletes who had Covid may end up with long-term conditions — like inflammation of the heart muscle — that could end their careers. And as Murray explains, people facing new physical limitations thanks to Covid also have to contend with what that does to their mental health. “For example, I know some folks that used to be quite active, and they may not be having severe symptoms, but they’re still not able to go back to their [pre-Covid] activity level, which can be very frustrating,” she says. “Over time, this can obviously affect a lot of different things, especially if that was something that you did to help your mood.”

As someone who earns a living writing and teaching at the university level, I derive much of my identity from my work (with the understanding and acknowledgement that this isn’t necessarily the healthiest mindset). The past six months of neurological challenges like incessant brain fog, combined with the onset of mild symptoms of dyslexia (something I had never previously experienced) have made it far more difficult and time-consuming to get my work done. In turn, this has triggered periods of intense depression and anxiety. In a way, it’s a form of grief, as we mourn the loss of our pre-Covid selves.

In her pre-Covid life, Batenhorst — who has bachelor’s and master’s degrees in applied mathematics — worked as a data analyst for companies like Intel and Portland General Electric, and taught math at several different universities. Now, her ongoing brain fog has made even everyday tasks challenging. For example, one day Batenhorst got up to get a glass of water, then promptly forgot what she was doing. “I stood there, and I just started crying because I couldn’t remember what I was about to do,” she explains. “And I’m having those senioritis brain-fart moments, constantly. And there’s some days that are way worse than others. My short term [memory] is gone.”

This loss of identity is something I witnessed several years ago as I was caring for my mother following her traumatic brain injury (TBI). As a former reference librarian, she was used to being able to recall facts, dates, and other information instantly. Post-TBI, the knowledge was all still there, but it was far less accessible, making her feel as though she was no longer “herself,” and was the biggest source of her depression. While I had empathy for what she was going through, I didn’t truly understand what it felt like until I had Covid: Everything I knew before I got sick is still with me, but now I have to work much harder to access it. According to Dr. John Krakauer, a neurologist at Johns Hopkins University and director of their Center for the Study of Motor Learning and Brain Repair, there are similarities between cognitive long-term Covid symptoms, and those associated with TBI. “TBI patients also end up having loads of complaints over the years — depression, anxiety, dizziness, failure to concentrate, headaches — lots of subjective complaints that can go on for long periods of time,” he tells Rolling Stone. “And I think that the post-Covid patients — especially the ones with neurological symptoms and body weakness — are very similar, and should be thought about in the same kind of way.”

A new condition needs a new approach

After several months treating Covid patients, endocrinologist Dr. Zijian Chen, and his colleagues at Mount Sinai in New York City, noticed that many continued to have residual effects that didn’t go away. “Having this information, the health system decided that it’s time that we start looking at this disease as something that’s long-term — something that’s chronic — and start treating this group of patients with a focus on making sure that they get all the specialty care that they need in order to overcome all the symptoms,” Chen tells Rolling Stone. This includes treating their mental health.

And beyond acknowledging that someone with long-term Covid could develop anxiety, depression, or other mental health conditions, the newly created Center for Post-Covid Care at Mount Sinai tailors their services to meet the specific needs of this patient group. According to Chen, who is the center’s director, this approach was modeled on the center the hospital created following the September 11th terrorist attacks. “When you look at the World Trade Center, that unfortunate event created a subset of patients that have a very specific group of symptoms,” he explains. “Covid is very much like that, except much bigger, with many more patients.”

For example, after 9/11, Chen says that there were a lot of people who developed post-traumatic stress disorder (PTSD) or increased anxiety that they didn’t have before the event. Now, something similar is happening with long-term Covid patients. “Just imagine someone who is ill — who got very sick, very quickly, through really no fault of their own — and still has symptoms that they don’t know what to do with, and are now stuck at home and can’t go to work, or maybe lost their job,” Chen says. “All these things together are very stressful and can have a negative impact on your psyche.”

As a mental health professional, Dr. Karen Kline, a marriage and family therapist — as well as a Covid long-termer — can attest to the impact of the condition on our mental health. “On day five of my fever I wrote my will, believing I was nearing the end, and the ‘Covid depression’ hit,” she tells Rolling Stone. “I was isolated from my family, couldn’t be there for my clients, couldn’t be there to help take care of my dad, and I felt terrible.” During the acute phase of her illness, Kline says that she struggled with anxiety attacks, including ones so severe they would wake her up in the middle of the night. In the months since, it’s still there. “There is residual anxiety about what could be next as a result of this illness and whether or not I could get this again,” she says.

As we learn more, it’s getting better 

Pleading our case has been slightly easier now that medical professionals at establishments like the Mayo Clinic and the Centers for Disease Control (CDC) have acknowledged that Covid-19 can result in prolonged illness, even among otherwise healthy young adults. We’re also getting some (admittedly very) preliminary information on exactly how many people with Covid go on to experience long-term effects. This includes a recent survey conducted by the Lung Foundation and CIRO (a treatment and research center for chronic illnesses) in the Netherlands, which found that 87% of 457 participants (who had all tested positive for Covid-19, and who were all members of online social-support groups for long-term Covid) reported persistent extreme fatigue, and nearly three-quarters continued to have shortness of breath — both lasting for months. And of the 85% of participants who considered themselves “healthy” before getting Covid, only 6% could say the same three months following their diagnosis. And this is only the beginning: it will take years — even decades — of research to understand the full picture.

At the same time, the speed at which physicians and researchers are learning more about the novel coronavirus is a source of hope. For example, in the early months of the pandemic, Covid-19 was identified and treated as a respiratory illness. “And what we’ve learned is that part of that’s true: it does target the respiratory tract as the first site of infection,” Armitage explains. “But the virus can attack the cells of the vascular system. The receptor that the virus attaches itself to can be found in abundance in the lining of blood vessels.” This understanding of Covid-19 as a vascular disease that can impact every part of your body has already resulted in some treatment developments. “Assessing for the blood clotting status and putting people on certain types of blood thinners is now a foundational part of the management of the sicker patients,” Armitage says, noting that clotting is likely responsible for symptoms like COVID toes. This is a particularly important development given that nearly one-fourth of people hospitalized for Covid-19 have been diagnosed with cardiovascular complications, and two recent studies indicate that post-Covid heart damage is likely more widespread than was initially thought.

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Along the same lines, some physicians, like Dr. Abe Malkin, founder and medical director of Concierge MD LA, have shifted their perception of Covid from a brief viral infection, to a condition that can result in long-term physical or neurological effects. For example, Malkin sees Covid as having more in common with conditions like mononucleosis (caused by Epstein-Barr virus) and Lyme disease (caused by bacteria) than the flu. “That’s not to say that Covid is going to be a lifelong infection for everyone,” he says, “but I’ve started to think of it in terms of how I’d treat mono or Lyme disease: about how to manage the inflammation — not just the symptoms, but the underlying conditions, too.”

In the meantime, if you’re not a medical professional or researcher and are wondering how you can help, it’s actually pretty simple: believe us. “Please be patient with those that continue to deal with the viral after-effects,” Tammy says. “We don’t want this. We, too, want answers. We want help and we want to be ourselves again. It’s sobering to think that we may never be the same again.”

Ideally, this greater understanding of Covid-19 will bring with it increasingly effective ways to prevent and treat the viral infection. Of course, the onset of any long-term condition has the potential to bring depression, anxiety, and other mental health conditions along for the ride. But if we’re able to get to the point where we no longer have to convince people that we’re sick — through no fault or negligence of our own — it’ll be a massive weight lifted off of our sore, slumping shoulders.

 

Editor’s Note: This story was updated on October 27th to include the most recent results from the CIRO center in the Netherlands’ study on long-term Covid-19. 

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