Authors: Camille Kroll, Timothy Poor, Amy McQueen, Mikayla Johnson
From February to April of 2023, our research team interviewed several people with Long COVID to share with us what it is like living with the condition. Long COVID is different for each person. While not everyone had severe cases of COVID-19 requiring hospitalization, they all were still struggling with debilitating symptoms following their infections. The most common symptoms were fatigue, brain fog, memory problems, and symptoms that worsen after physical or mental exertion, called post-exertional malaise (PEM).
Patients shared how these symptoms stopped them from living their normal lives. Long COVID can be a devastating and draining experience. It can prevent people from completing normal tasks like cooking, cleaning, or even showering. A person with fatigue and PEM explained, “I am always so tired that it’s debilitating. I just can’t do anything. Not that I don’t want to its just that, I can start and after a few minutes my body will start hurting I’ll get tired, I’ll get drained, I’ll get weak and possibly fall. It’s horrible.” Cognitive and neurological symptoms are common among Long COVID patients. Several people with Long COVID explained that long COVID affected their thinking. One patient told us, “My head started getting a little fuzzy – it was hard to follow what people were saying, I was having a hard time keeping up with work. It wasn’t necessarily focus, it just felt like my head was fuzzy.”
I am always so tired that it’s debilitating. I just can’t do anything. […] After a few minutes my body will start hurting I’ll get tired, I’ll get drained, I’ll get weak and possibly fall. It’s horrible.
A woman dealing with Long COVID fatigue, post exertional malaise, and pain
Several people who spoke with us needed to take time off from work or could not return to work following their COVID-19 infections. Those who continued working often struggled to get workplace accommodations. One woman shared that her job wanted her to come back to work in person despite her doctor recommending against it. She explained, “My doctor is afraid [another COVID infection] could be life threatening to me. I am fighting with the job to be able to continue to work from home. I’ve submitted doctor’s statements and paperwork and they’re still pushing for me to come in.” Patients who could not work worried about losing their health insurance. A patient shared, “The short-term and long-term disability stuff was a headache. They were transferring me from short to long term and I lost my benefits. Then I resigned, I need the health insurance to figure out what’s going on.” Another woman shared, “It sucks that it took 6 months to get into the Clinic because now I’ve lost my insurance. I was on leave from work. So now I’m a self-pay patient. I’ve lost my job. There are things I would have liked to have learned 6 months ago.” Keeping health insurance coverage is critical for Long COVID patients because extensive, long-term treatment and monitoring is often needed see improvement.
People with Long COVID need support from family and friends a lack of awareness of Long COVID can weaken support. Patients are hurt when friends and family do not understand that Long COVID is real. One patient remarked, “It’s like they don’t believe it. They believe that you’re making it up. That you’re a hypochondriac, like it’s all in your head, it’s not really going on or that it’s not as bad as you’re making it out to be.” Social support is key to help with navigating appointments and activities of daily living. People who are suffering with Long COVID often see their social circles shrink as they become largely housebound, with one woman stating, “I feel like a prisoner in my own home.”
It’s like they don’t believe it. They believe that you’re making it up. That you’re a hypochondriac, like it’s all in your head, it’s not really going on or that it’s not as bad as you’re making it out to be.
A Long COVID patient
Overall, patients wanted to be “back to normal”. Patients wondered when doctors and scientists would have more answers about Long COVID. They wondered when their symptoms would end. One patient asked, “I just want to know how much longer, or is this going to be the rest of my life? Is this my life now?” Patients spent a lot of time and energy getting themselves evaluated and treated for Long COVID, often visiting dozens of doctors. One woman had been to over 200 doctors’ appointments in the past year. Getting a diagnosis and treatment can be a difficult process. Long COVID patients have to overcome many barriers to start to get answers.
Long haulers sought information and answers from doctors, the CDC, and used social media, websites, and online forums. Patients are often frustrated when there are not clear answers. One woman remarked, “I don’t trust the information anymore because nobody really knows. Every doctor I go to has a different viewpoint. And there’s a lot of doctors that don’t even believe it’s true.” Although doctors and researchers are studying Long COVID, some patients feel like not enough is being done. One man shared that what worries him the most is, “The fact that almost nobody is doing anything about it.”
“I don’t trust the information anymore because nobody really knows. Every doctor I go to has a different viewpoint. And there’s a lot of doctors that don’t even believe it’s true.”
A Long COVID patient
People with Long COVID suffer because many people, even doctors, are unaware of Long COVID or doubt its existence. Long COVID is a real and serious condition. As many as 39 million Americans have Long COVID. The federal government is funding research to better understand Long COVID. However, it is a new disease so there are not always clear answers for patients about the causes of Long COVID, how long it may last, or its treatment. Doctors who treat Long COVID say that each person’s journey and treatment plan will be unique. It is important to listen to those dealing with Long COVID. Support and believe friends and family when they share their struggles. If you think you may be dealing with Long COVID, see your doctor and request evaluation as soon as you can.