Katherine PlumhoffThu, 11 February 2021, 8:41 pm
Eve L.’s coronavirus (COVID-19) symptoms first felt like a case of the flu. They had a fever, muscle aches, sore joints, and shortness of breath. Then their hair, eyebrows, and eyelashes fell out. They developed POTS (postural orthostatic tachycardia syndrome) meaning that simply standing up after lying down made them lightheaded and made their heart rate spike. Two months after infection, they experienced severe shooting pains in their hands and feet. They developed an essential tremor.
Now, eleven months post-infection, they still experience low-grade fevers and persistent fatigue, and brain fog. They’ve been diagnosed with CFS (chronic fatigue syndrome) and despite sleeping 12 hours a day, they still feel exhausted all the time. Eve used to work 12-hour shifts as a registered nurse in an ICU, but is now unable to work at all. I interviewed Eve over email because they were too exhausted for a phone call.
Eve isn’t alone, though. One of the few published studies that looked at COVID-19 recovery found that 10% of all COVID-19 patients experienced prolonged illness after being sick with COVID-19 being found.
With nearly 27 million confirmed coronavirus cases in the U.S. alone, 2.7 million Americans could experience what patients and doctors are starting to call long-haul COVID-19. That’s more people than getting diagnosed with cancer each year in the U.S. (which is 2 million).
And while long-haul COVID isn’t yet deeply understood, many patients and medical professionals have been dealing with the long-term impacts of critical illnesses and autoimmune diseases for years—and know where COVID long-haulers should start, as well as where the healthcare system falls short in serving them. That’s why we connected with medical professionals to find out what is long-haul COVID, how it can be treated, and what long-haulers can do as they move forward.
What is long-haul COVID?
Dr. Jennifer Haythe, MD, a critical care cardiologist at Columbia University Center, recognizes that when people use the term “long-haulers,” they’re referring to “a constellation of symptoms” that can include malaise, body aches, tiredness, and insomnia, as well as organ-specific issues like the lung damage and heart issues that she most often sees in her day-to-day work with patients who are recovering from COVID-19.
But she’s quick to note that long-hauler is not yet an official diagnosis. “Long-hauler isn’t a scientific term,” she says. Her patients will often have specific diagnoses instead, like post-COVID lung fibrosis or post-COVID heart failure. That being said, many of her patients are experiencing what they’re calling long-haul COVID symptoms. “They’re things like, ‘I don’t sleep the way I used to,’ or ‘My stomach feels not right,'” she says.
Dr. Renee Madathil, PhD, a rehabilitation neuropsychologist who works at the University of Rochester’s medical center and treats patients recovering from the consequences of COVID-19 and its treatments, explains that long-haul COVID isn’t something experienced only by those who had severe cases of COVID-19 or were hospitalized for it.
Dr. Madathil uses the example of concussions: “People don’t get hospitalized for a concussion. They might experience symptoms for several weeks, they might have to take off work, they might have to adjust their workload or make changes to their life for quite some time. But that has nothing to do with whether or not they’ve been in the hospital,” she says.
How is long-haul COVID treated?
It depends on what symptoms the patient is experiencing. Dr. Madathil explains that her patients often present with post-traumatic stress symptoms (PTSD) and cognitive symptoms, collectively called “brain fog,” which can include memory lapses, difficulty finding words, confusion, and altered mental status. “In the case of brain fog, things certainly do get better, and in the meantime, we have to find ways to compensate for the difficulties,” she says. That can include working with a speech-language therapist or a psychologist on memory strategies.
“What we really see is the need for multiple disciplines to be integrated into healthcare—not just medicine, but also physical therapy, speech therapy, occupational therapy, psychology—all of these different disciplines at the table, working on a more holistic approach to recovery,” she says.
Eve’s recovery has incorporated a variety of disciplines. Currently, they see a physical therapist once a week (down from twice a week earlier in their recovery); a doctor once a week; and each specialist every month or every other month. They also get iron replacement infusion therapy each month.
It’s a lot to handle, especially while exhausted. “Between being a parent and being a patient, I feel constantly worn, like a rag that has been saturated with water then wrung out and left to dry,” says Eve.
For people like Dr. Madathil who have spent their careers working with patients recovering from critical illnesses, patients presenting with long-haul COVID are new, but their symptoms aren’t.
“Cancer, [multiple sclerosis] MS, [chronic obstructive pulmonary disease]COPD, [severe acute respiratory syndrome] SARS—we have seen what people are now attending to and calling long-haul symptoms,” says Dr. Madathil. “What’s happening now is that there are so many people sick at the same time, so there’s been more of a spotlight.”
“And I hope that spotlight spills over onto other patients who’ve been seeking that validation for a really long time,” she continues.
What can long-haulers do?
First, they can recognize that their experience is valid and that they deserve to have their symptoms believed.
“Many of the patients I hear from say, ‘I went to my doctor and they did a scan and they couldn’t find something, and they think I’m crazy,'” says Dr. Peter Staats, MD, a medical advisor to Survivor Corps, a community for COVID survivors, and a co-founder of the medical device company electroCore. “Frequently, doctors are dismissing patients…to some degrees, when doctors don’t know what to do…patients are kind of left in the lurch.”
Dr. Staats is familiar with that dynamic. He started the Division of Pain Medicine at Johns Hopkins and worked with patients who experienced significant pain that their doctors couldn’t address and didn’t always believe.
“My first message to patients is ‘I believe you.’ The second is ‘You are not alone,'” he says. “Sometimes patients need to push back on the doctor and say, ‘I understand that there’s not a lot that has been done to date on this, let’s figure it out together’…and if they find their doctor is just completely dismissive, they should find a new doctor.”
Dr. Madathil agrees. “There are other people that are experiencing this, and your symptoms are real and they do deserve attention,” she says. “Advocate for yourself. Know that medications are usually not very effective for symptoms like fatigue, brain fog, sleep disturbances. Your best bet might be engaging in physical therapy, cognitive rehabilitation, working with a psychotherapist, because a lot of those areas of expertise are going to be helpful to you as you’re trying to get your life back on track.”
For Eve, the most important aspects of their recovery has been the support of their family and learning to pace themself. “You cannot ‘push through’ exhaustion like you used to. You have to alter your expectations of what you can do,” says Eve. “I can’t just ‘run in’ to the store for a few things I forgot. You have to be more strategic with your energy. I can go to a grocery store or help put things away, but not both, for example. I can’t stack activities. If I have a doctor’s appointment, that has to be the only thing I do that day. I can’t cook a meal and grocery shop and go to the pharmacy in the same day.”
What does the future of long-haul COVID look like?
Being a healthcare provider that is recovering from long-haul COVID has changed the way that Eve thinks about healthcare in general. “Now I understand more about the difficulty of obtaining care when you have more than a single specialist. Care coordination is huge and overwhelming,” they say.
“It’s clear that the system—healthcare and disability—is set up to discourage people from accessing the help they need,” they say. In the future, Eve hopes to see “a real social safety net, that really supports people.”
For that system to exist and to work, we’ll need to change our collective consciousness around illness. We’ll need to focus not just on surviving an illness, but on the quality of life that patients face afterward.
“[Illness] doesn’t just end with the patient surviving,” says Dr. Madathil. “Recovery is a process—it’s not a procedure. Getting back to life is just as difficult and as important as being alive.”