A few months into the pandemic, when doctors were working to understand the new disease and develop vaccines to control it, patients who had recovered from COVID-19 began reporting problems that lasted weeks after they first became ill. Similarly, many survivors of the Spanish Flu and the Russian Flu pandemics in the late 18th and early 20th centuries experienced long-lasting effects. After the 2003 SARS epidemic and the MERS outbreak in 2012 patients had persistent symptoms too.
The medical literature has various names for this, including post-COVID-19 syndrome and long COVID, but the most appropriate term may be long haul COVID-19. A woman named Amy who wore her favorite trucker hat to her COVID test gave the name to her social media support group for people with long-lasting symptoms, indicating the hard road long haulers face.
As many as one in ten people infected with SARS-CoV-2 will be long haulers. More than one hundred symptoms have been reported, but the most common are fatigue, shortness of breath, cough, chest pain or heaviness, fever and chills or sweats, muscle and joint aches, and rapid or irregular heartbeats. “Brain fog” is also common and highly distressing. Patients complain of “not being the person I used to be.” Most long haulers have several symptoms at the same time.
Like COVID-19 itself, the post-COVID syndrome can affect different body systems. As with COVID-19, long hauler symptoms may be mild or severe. Not every COVID survivor who was seriously ill becomes a long hauler. Having a mild case of COVID doesn’t mean that a person will not be a long hauler. For some, the long-term complications will be serious. Lung scarring, heart changes, and nervous system problems may become permanent and hard to treat. Patients can also have life– threatening blood clots, strokes, and kidney problems.
Long haul COVID is not just a matter of taking longer than usual to recover from the disease. Patients seem to recover only to find their symptoms returning, often multiple times. This cycle of improvement and relapse is one reason for the emotional and psychological distress felt by many long haulers.
Imagine vacuuming one room and having to sit down and rest. Imagine climbing a flight of stairs and having to stop for several minutes to catch your breath before moving on. Everything you do takes longer – or doesn’t get done at all! Suppose you feel achy and feverish for days at a time. What if you can’t do your job because you’re too tired or weak or your brain fog makes it hard to concentrate? This is life for a long hauler.
Is this your new normal? No one knows. The first COVID-19 cases were identified early in 2020. It’s just too soon to know for sure if your symptoms will eventually go away. They have already done that. But they come back.
Doctors are still learning what COVID-19 does to the body and what causes long COVID. New knowledge will lead to new and better treatments. Medicine does miracles, but even miracles take time. Meanwhile, long haulers’ lives are unsettled or on hold. As with COVID-19, having other medical conditions such as heart disease, high blood pressure, diabetes, or cancer can make long hauler symptoms worse. Or long COVID can make those conditions worse. In any case, long haulers can expect to spend more time getting tests and seeing doctors than they did before COVID. The health care system, already stressed by the pandemic, may be burdened further by large numbers of long haulers.
If you have had COVID-19 and think you may be a long hauler, get checked, even if you have never had a positive COVID test. (Of course, not every new problem is caused by COVID, so call your doctor if you have any severe or long-lasting symptoms.) Doctors and other health professionals should be knowledgeable and sympathetic, but we must be our own advocates. Don’t give up. If you are not satisfied, or feel you’re not being listened to, seek help elsewhere. Getting a second opinion is never the wrong thing to do.
Informed patients do better, so read and learn. Get information from reliable sources such as Harvard Health, Johns Hopkins, and the CDC. Follow or join advocacy and support groups. Centers for post-COVID care are starting around the country. An organization called Survivor Corps has an up-to-date list. (Right now, the closest are in Philadelphia and Pittsburgh.)
The end of this pandemic is in sight, though not certain. Vaccines are the only sure way to stop it, so get yours as you can. And please keep doing the common-sense things that keep the virus from spreading: wear a mask, wash your hands, and avoid crowded places, especially indoors.
Let’s end COVID!
Michael Heyd, a retired medical librarian from Fairfield Township, spent more than forty years searching the professional literature for doctors, nurses, educators and other staff at The Williamsport Hospital/Susquehanna Health; he is a member of Let’s End COVID!