Stuart Katz, a cardiologist at NYU Langone, got Covid-19 in December 2020, right before he was able to receive the Covid-19 vaccine as a health care professional. When we spoke for this article, more than a year since his infection, he told me excitedly that he just discovered he was able to eat honey again without it tasting awful. His extreme fatigue and brain fog had subsided after about six months, he says. Some aren’t so lucky.
Strange and sometimes debilitating symptoms lasting long past the original bout of sickness are presenting in many people who’ve had Covid-19. The patient-coined term for this is long Covid, though experts often refer to it as post-Covid condition or PASC (for Post-Acute Sequelae of SARS-CoV-2 infection). Reports of how common long Covid is vary widely from study to study, but the WHO estimates that 10-20 percent of people are experiencing new or lingering symptoms three months after infection.
When we consider just how many people have been infected with Covid-19, that amounts to millions of people dealing with persistent, ongoing symptoms. Unfortunately, there isn’t much information on why this is happening and why only some people seem to be affected, though a recent preprint study out of Israel suggests that vaccinated people may have a lower risk of developing long Covid symptoms.
The good news is that most with long Covid do seem to get better over time without treatment, says Katz, the principal investigator of the NIH-funded Recover Initiative to study the long-term effects of Covid-19. But it can be hard to stay hopeful when you’ve been dealing with chronic, disruptive symptoms for months.
“Many people who have had Covid and who haven’t recovered are starting to look very much like ME/CFS patients,” says Lucinda Bateman, founder and medical director of the Bateman Horne Center, and an expert in the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Similar to what we sometimes see with long Covid, ME/CFS is characterized by debilitating symptoms such as fatigue, pain, and cognitive impairment — though for ME/CFS, US diagnostic guidelines require these symptoms to persist at least six months. The cause of ME/CFS is not well understood, but it’s thought to possibly be triggered by a virus or another kind of infection. Bateman and other experts have been studying the parallels between long Covid and ME/CFS, hoping that this will give them a better understanding of both conditions.
While there’s still so much we don’t know about long Covid, it’s possible to look to other chronic illnesses and post-viral syndromes for clues when it comes to managing the condition. There may not be a known cure for long Covid, but there are ways you can advocate for yourself and get care for your symptoms. So if you’ve had (or currently have) Covid-19, here’s what you should know about long Covid.
Know that symptoms can vary and may show up immediately after your infection … or a few months later
One of the many frustrating realities of long Covid is that it doesn’t look the same in everyone. In October 2021, the WHO released the following definition, which illustrates just how complex and varied long Covid actually is:
Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others … which generally have an impact on everyday functioning. Symptoms may be new onset, following initial recovery from an acute COVID19 episode, or persist from the initial illness. Symptoms may also fluctuate or relapse over time. A separate definition may be applicable for children.
Basically, symptoms can include pretty much anything, show up pretty much any time, and change or resolve pretty much whenever. “Literally dozens and dozens of symptoms have been described, virtually touching on every single part of the body,” Katz said. He also says that long Covid can crop up even in people who had a very mild case of the virus, so having a relatively easy bout of Covid-19 isn’t a reason to discount your symptoms.
So, let’s talk about those symptoms. A systematic review published in November 2021 in the journal Frontiers in Medicine identified more than 100 possible symptoms that have been associated with long Covid. The most common ones noted in the research are those that are associated with the initial Covid-19 infection, such as loss of taste and smell, respiratory symptoms, chest pain, fever, and headaches. (The study authors did note that it’s possible these are overrepresented in the research simply because they’re the symptoms that were asked about most often.) Other common symptoms include cognitive dysfunction (like brain fog), nerve and muscle pain, sleep disturbances, mobility issues, and psychological symptoms like anxiety and depression.
Another major symptom is post-exertional malaise, which is a fancy way of saying that you are completely spent after doing even basic activities. “I personally experienced this where relatively minor things — things you would do without thinking, like run an errand to a store or do something that’s really not exertional — would wipe you out not just for the day but for the next day too,” says Katz.
These aren’t the only possible symptoms that you might experience with long Covid; they’re just the ones that have been mentioned most often in research. Ask around and you’ll probably hear everything from gastrointestinal problems to menstrual irregularities. The CDC also keeps a list of possible long Covid symptoms. In addition to these symptoms, experts are seeing various health conditions, such as heart problems and kidney disease, crop up in patients who had particularly severe disease or long hospitalizations.
Check in with a health care provider as soon as you can
While there’s no diagnostic test for long Covid, it’s still important to seek care if you’re experiencing symptoms like this. Also, it’s possible to be reinfected — especially with new variants popping up — so if you’re suddenly experiencing new Covid-like symptoms after you’ve recovered from the initial infection, your first step should be getting tested to make sure it’s not another round of Covid-19.
If you test negative, you’ll want to get your symptoms evaluated so that you can rule out any other major medical conditions. That will likely start with seeing your primary care provider, if you have one.
It can be tricky and intimidating to see any provider when you’re coming in with a whole list of issues that may or may not be related to each other. Fortunately, the CDC created a checklist to help folks prepare for appointments related to long Covid symptoms. One particularly helpful tip: Keep a journal of your symptoms for at least a week so that you feel prepared to share the full range, frequency, and severity of your symptoms, plus what a good day or bad day feels like. It’s also a good idea to come with a list of questions and a way of taking down information (like bringing a notepad or a buddy).
Managing long Covid comes down to identifying and treating your specific set of symptoms. Bateman suggests paying attention to how the condition is manifesting for you — whether that’s inflammation, headaches, gastrointestinal symptoms, allergic responses, sleep disturbances, etc. From there, you can look for providers and treatments based on those specific symptoms. That might mean seeing a pulmonologist for any lingering lung issues, going to a gastroenterologist for your GI issues, or seeing a mental health professional for the myriad psychological impacts of this condition.
Look into online support groups and studies
Connecting with people who know what you’re going through can be so helpful. It even was for Katz, who found reassurance in speaking with Recover’s patient representatives while he was still reeling from long Covid, too.
“There are really great patient advocacy groups that have given a voice to this and were a big part of the NIH paying attention and Congress providing appropriation of funds to study long Covid,” Katz says. “I think becoming part of that community is empowering and probably is the best thing that people should think about beyond talking with their doctors.” A few great places to start include Body Politic, Long Covid Alliance, and Survivor Corps.
Another way to gain some feeling of control in an otherwise uncontrollable situation is to get involved in the research being done. The NIH recently awarded nearly $470 million to support large-scale studies on long Covid. You can sign up to be a part of the Recover Initiative and learn more about their upcoming clinical trials here. You can also visit the NIH’s clinical trials database to search for studies that are currently or will soon be recruiting participants that may match your experience.
“From my personal experience, knowing that there are other people going through this helped me,” Katz says. “You’re not crazy and it’s not just in your head.”
Look for a post-Covid clinic in your area
Seeing several different specialists can be pricey, time-consuming, and exhausting, and is likely to be out of reach for millions of Americans. It’s endlessly frustrating that our medical system isn’t set up in a way that makes caring for complex chronic illnesses like this easier on the person already suffering.
Fortunately, some major medical facilities are attempting to bridge this gap with post-Covid clinics. The idea is that patients would have a centralized point of care and a multidisciplinary approach to their symptoms, explains Devang Sanghavi, director of the Medical Intensive Care Unit at Mayo Clinic in Jacksonville, Florida. That said, accessibility and insurance status will still likely be a barrier for many.
At least 44 hospitals in the US have established post-Covid clinics as of August 2021, though there isn’t an exhaustive list of these facilities. To find one in your area, try searching for “post-Covid clinic near me” or visiting the website of any large teaching hospitals nearby, which may have one or can refer you to one.
Give yourself a break (both physically and metaphorically)
Bateman’s advice for long Covid patients is similar to the advice given to people with ME/CFS: “The first thing is to be very patient and give your body a chance to heal. Slow down. Don’t get in a push-crash cycle of pushing yourself, crashing, pushing, crashing. We tell people to pace their activity, meaning try to do the right amount of activity every day that doesn’t escalate your symptoms but keeps you moving.”
Pacing yourself is easier said than done for most people; still, making an effort to slow down and listen to your body while you’re healing can go a long way. Bateman notes that brain fog is a symptom that tends to get worse in ME/CFS patients when they’re pushed beyond their limits physically and mentally, so taking care of yourself as best as possible could help. Getting enough sleep is a crucial — yet often elusive — part of that.
Despite the overwhelming fatigue that many people with long Covid experience, sleep disturbances are also frustratingly common. It’s a vicious cycle in which the symptoms of long Covid can keep you up at night, and a lack of restorative sleep can make symptoms worse and healing harder. Not to mention that the pandemic itself is screwing with our sleep in many ways.
While it can be tempting to turn to sleep aids like melatonin or sleeping pills, Bateman suggests treating the specific cause, if possible. For instance, if you’re being kept up by chronic pain, anxious thoughts, or allergic responses like rashes or itching, those are all helpful details to bring up to a health care provider so you can explore solutions through medication and/or therapy. If your symptoms seem mostly managed but you’re still not getting restorative sleep, try focusing on the basics of good sleep hygiene: consistently going to bed and getting up at the same time, limiting caffeine and alcohol, staying away from screens before bed, and keeping your room dark, quiet, and cool. Finally, consider seeing a sleep specialist if you’re consistently not getting quality sleep.
Do what you can to take care of your mental health
The subject of mental health is a tricky one when it comes to long Covid because while it’s true that mental health resources can be helpful for patients, that fact can also be used to imply that the symptoms are psychosomatic.
“It’s so easy to blame an illness like this on anxiety or depression or PTSD, which just isn’t appropriate: This is a devastating, physical, post-viral, inflammatory, and neurologic illness,” says Bateman. That said, it’s also true that mental health support — whether that’s in the form of psychotherapy, medication, counseling, or mindfulness approaches — can be invaluable for alleviating the psychological toll of living with a chronic condition. And it’s possible that managing stress can help to mitigate some of the long Covid symptoms if they are being exacerbated by your anxiety.
Managing stress and anxiety, though, can feel completely out of reach for many of us right now, whether or not you’re dealing with long Covid. No one is suggesting that self-care in a pandemic is easy, especially when you’re living with a chronic illness, but tending to the mental and emotional toll is just as important as treating your physical symptoms.
“It’s not like mental health support makes the illness go away, but it makes it easier to live with when you can get yourself into a place of emotional stability and resilience,” says Bateman.
Casey Gueren is an award-winning health journalist and author of the book It’s Probably Nothing: The Stress-Less Guide to Dealing with Health Anxiety, Wellness Fads, and Overhyped Headlines.
Clarification, January 21, 11:40 am: A previous version of this story was unclear on the observed differences between long Covid and ME/CFS. Guidelines from the Centers for Disease Control and Prevention and the Mayo Clinic state that symptoms lasting at least six months indicate a possible ME/CFS diagnosis.