Karyn Bishof, a 30-year-old single mom and former paramedic and firefighter, has been suffering through symptoms of COVID-19 for more than 120 days. In the midst of a pandemic where you can easily review the latest statistics on confirmed cases and deaths around the world, Bishof is one of countless “long-haulers” living in the “in between,” having survived an initial infection only to find herself in a battle against a lingering illness.
While the World Health Organization (WHO) divides COVID-19 cases into neat categories including asymptomatic, mild, and severe, a recent Dutch survey suggests that many patients with initially “mild” cases can’t always just recover at home in a few weeks. Rather, they go on to suffer through serious symptoms for many weeks if not months.
In a new survey from the Centers for Disease Control and Prevention, 35% of the 292 respondents said they “had not returned to their usual state of health” two to three weeks after a positive test. Those with lingering symptoms were most commonly dealing with a cough, fatigue, and shortness of breath.
Before she got sick, Bishof was a highly active person. She went to high-intensity Orangetheory classes five to six days a week, trained as a first responder, and regularly played soccer and rode bikes with her 11-year-old son. Now, she’s out of breath after walking one block. “This has completely wiped me out,” she says, while apologizing for her shortness of breath over the phone.
Bishof first noticed symptoms of COVID-19, the disease caused by the virus SARS-CoV-2, in mid-March. She woke up with a sore throat and because schools had been shut down and she needed to go to work, she dropped off her son at her dad’s house two hours away.
“My dad is high-risk—he’s diabetic and has hypertension and his girlfriend is a cancer survivor—so my symptoms really stressed him out. I worried, How much was I around him? Could my son have caught it from me? Will he be asymptomatic and spread it to them?”
These concerns pushed Bishof to get tested. About one week later, her results came back positive. For the next six weeks, her son stayed at her dad’s house as she fought the virus at home alone.
When symptoms start to linger
At first, Bishof had the typical symptoms of a COVID-19 infection: a fever, coughing fits, loss of smell, nausea, vomiting, and diarrhea. “But then it was like a train hit me. I had no energy, memory issues, a lack of concentration, and the scariest part was there were a few days where if you asked me to raise my hand above my head, I couldn’t do it. When I talked to my son on the phone, I could tell he was worried about me, so I did my best to keep my emotions in check. Meanwhile, I was fighting not to lose consciousness,” she recalled.
A few weeks later, Bishof’s symptoms seemed to have improved besides a lingering cough. Her son came home and she tried to return to work. “At the time, I felt like I was on the up and up, and then another week or two later, I was slammed back down with more symptoms. That was when it really hit me: This isn’t going away.”
Bishof continued to experience many symptoms on a daily basis, including extreme fatigue, insomnia, an altered sense of smell, hair loss, shortness of breath, and a cough. But she also had neurological issues like brain fog, memory loss, and throbbing, all-over-headaches like none she’d ever experienced before. Other symptoms came in waves or only struck once or a few times, including heart issues like chest pain, heart palpitations, and the feeling of her pulse “bounding throughout her body,” as well as blurry vision, dizziness, and a rash on her face.
The search for answers
Worried she was losing her grasp on reality, Bishof Googled “COVID-19 symptoms for weeks” and, for the first time, she realized she wasn’t alone. An article in The Atlantic by Ed Yong shared the stories of self-described COVID-19 “long-haulers” and led Bishof to discover and join a number of support groups on Facebook.
“I started asking questions and was blown away by all of the responses. So many people were dealing with symptoms like mine and even stranger symptoms for months with no treatment, no game plan, and no idea when or if these issues will ever end.” Worse yet, many of them had family members, friends, and doctors who didn’t believe their symptoms were real.
As Bishof searched for treatment and read others’ stories online, she felt compelled to take action and created an unofficial survey that garnered more than 1,500 responses from fellow long-haulers, primarily in the U.S. and U.K. “Part of the push for this was the hope that people could bring this to their doctor and show them that you’re not alone. If you’re one person going to your doctor, they may dismiss you. But if ten or 20 people go to that doctor, he’s going to start seeing a pattern and believe more people,” she says.
In a climate where medical professionals are often overwhelmed in the fight against an entirely new virus, long-haulers can vindicate and empower each other when doctors fail to listen, can’t take on new patients, or flat-out don’t believe them.
Fighting for recovery
Lisa O’Brien, a 42-year-old financial analyst who has been sick with COVID-19 symptoms for more than 135 days, suspected she had blood clots after reading her friend Hanna’s story in an online support group. O’Brien’s concerns were initially dismissed by a doctor who advised that she take anti-anxiety medication and seek teletherapy.
But one week later, she went to the ER and insisted on a blood test recommended by Hanna. In a series of two appointments, doctors found two blood clots and prescribed blood thinners. “Shockingly, there were four of us that found blood clots in our lungs that same week,” O’Brien said in an email.
O’Brien recently connected with Mount Sinai’s precision recovery program, which monitors symptoms of long-term COVID-19 patients. She checks in with a clinician once a week. She wants other long-haulers to know that even if they test negative for the virus (as she did), they should still advocate for themselves and seek treatment. After all, early research suggests that diagnostic tests for SARS-CoV-2 may result in false negatives up to 30% of the time, especially if it’s been more than a week since your symptoms first appeared.
In New York City, Mount Sinai has also opened the Center for Post-COVID Care, the first of its kind, which launched on May 13th. So far, 250 to 300 patients have been admitted.
Zijian Chen, M.D., the medical director of the center at Mt. Sinai, says his team aims to tailor personalized treatment plans for long-term COVID-19 patients while studying their symptoms in the hopes of understanding what’s causing them and improving treatment regimens. Since mounting evidence suggests COVID-19 has multiple systemic complications, the team includes specialists in primary care, pulmonary medicine, cardiology, infectious disease, nephrology, physiatry, physical and occupational therapy, radiology, neuropsychiatry, behavioral health, social work, and pharmacy.
While there’s still so much to learn about COVID-19, one thing that stands out to Dr. Chen is that beyond cardiac and pulmonary issues, many patients have neurological symptoms that can be debilitating, like Bishof’s extreme fatigue and trouble concentrating.
Finding a path forward
Today, Bishof continues to experience chronic symptoms. “These waves are not only physically draining but mentally draining because you dare let yourself get a little bit positive and happy that you’re improving, but then you get hit back down,” she says.
Once on the frontlines as a paramedic and firefighter, Bishof fears her struggle with COVID-19 is “likely career-ending.” Unable to work, she tracks her symptoms closely to share them with her doctors and practices breathing exercises in the hopes of strengthening her lungs.
For her part, Bishof hopes to see long-term COVID-19 treatment centers open in every state in multiple locations. “COVID-19 is not going anywhere, and there are tens of thousands if not hundreds of thousands of long-haulers like me. What’s going to happen to us? What’s going to happen to the people who come after us?”
If you’re experiencing long-term symptoms in the wake of a novel coronavirus infection, Dr. Chen suggests that you keep a diary of your symptoms to share with your doctor and reach out for help from a post-COVID treatment center. Don’t discount the potential mental health effects of this disease, either.
“With COVID, there is an increased risk for mental health and psychiatric illness because this is a very traumatic event. We’re seeing patients who are having symptoms associated with PTSD, depression, and anxiety, and we want to be able to treat that, too,” he says.
Otherwise, it’s important to understand that “surviving” COVID-19 can become a long-term struggle, which is yet another reason to continue taking this pandemic seriously—even if you have a serious case of quarantine fatigue (and really, so many of us do).
In this spirit, keep wearing your mask, respect others’ space and health concerns, look out for your loved ones, try to have some compassion (even for complete strangers), and, of course, wash your hands frequently.
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