An illustration created by Christine Goldschmidt, an artist and Long-COVID survivor
By now, most people have probably heard of Long-COVID but what is it, really?
First off, as of June 2022, the CDC reported that nearly one in 13 adults in the United States have Long COVID symptoms. What symptoms, you may ask? Well, according to one published study, there are more than 200 different symptoms that a person living with Long COVID may be experiencing. Yup, 200, affecting pretty much every organ system of the body. Of that ~200, each individual person may be living with a distinctly different constellation of symptoms. Many people deal with brain fog, chronic pain, memory loss, tinnitus, head pressure, fatigue (bone-crushing, not simple tiredness), post exertional malaise, migraines, unexplained rashes, difficulty breathing, a frighteningly high heart rate, etc. In my mind, one of the most distinguishing features of Long COVID is how almost indistinguishable it is. It’s possible to see one person with Long COVID with a list of symptoms that has no overlap to another person with Long COVID’s list of symptoms! Unfortunately, this all makes understanding the medical nature of the syndrome particularly difficult. Even more tragically, there are many reports of patients suffering with long haul symptoms who are told by their physicians that their pain is psychological in nature. It should also come as no surprise that there is a distinct segment of the population that pushes the conspiracy theory that Long COVID or PASC (Post-Acute Sequelae of SARS-COV2) is just a made up disorder or that it is specifically a result of receiving a COVID vaccine and not as a result of COVID infection.
While it is possible for an individual to develop Long COVID as a result of vaccination, it is also very true that many people (in truth, more people) have developed Long COVID as a result of COVID infection, whether vaccinated or not. (While vaccines are not a guarantee against COVID infection or even Long-Haul, they are still generally recommended for the majority of children and adults and are mostly protective.) In fact, there have been reports of people developing Long COVID after their second or third COVID infection despite having fully recovered from previous bouts with the virus. While there is a high degree of variability of symptomatology, one thing is almost universally true, Long COVID is primarily an invisible illness.
What does it mean to have an invisible illness? Simply put, you don’t look sick. Persons who appear unwell are easily afforded kindness, compassion and empathy. Friends, family, and coworkers adjust their expectations of your capacity and accommodate for things like reduced physical and emotional energy, mood shifts due to chronic pain, and even proactively offer support with things like medical appointments and carrying out daily activities. Unfortunately, when a person’s outsides don’t match with how they’re feeling inside, they are typically subjected to a level of expectations that is impossible to achieve. Making plans and sticking to them can feel impossible for someone dealing with Long COVID when you’re never sure if this minute, this hour, this day, or this week, you’re feeling up to it. It’s easy for others to judge the lack of capacity negatively and to eventually penalize the person with the illness whether through social withdrawal among friends and family or being put on a performance improvement plan at work. Worse still, the individual may face disbelief and skepticism about their symptoms from medical providers.
Personal narratives abound in the Long COVID world of patients being gaslit by their doctors who psychologize their lived experience. To give medical professionals the benefit of the doubt, there are very few, if any, clinical lab tests currently available that are able to detect any abnormalities in a Long COVID sufferer’s bloodwork. Frustratingly, nearly every person’s MRI, EKG, CBC blood tests, etc are infuriatingly within normal limits. On paper, people with Long COVID look perfectly healthy. For some physicians, this leads to a diagnosis of depression or anxiety and a prescription for Cognitive Behavioral Therapy. Listen, I’m not against CBT, I am a huge fan of psychotherapy (it’s a job requirement) to help patients cope with the physical, mental, and emotional stress that comes with Long COVID. I even run a support group for persons living with Long COVID (Read more about the group here!) But, it’s so important to look at mental health support as in conjuction or parallel to medical treatment for symptoms if not for the underlying disease process. Millions of people around the world (65 million people to be more specific, many of whom have suffered life-changing consequences such as job loss and social isolation) are not having mass psychogenic illness. All this said, while it’s preferred to have people believe you about Long COVID, it’s not enough. We need viable treatments that get persons suffering with Long COVID back to their hobbies, their jobs, their friends, and their families.
So, what is Long COVID? It’s a syndrome, or a group of symptoms, that may occur sometime after a COVID infection or a COVID vaccine. Symptoms can wax and wane while new symptoms can appear seemingly out of the blue. It can occur immediately following infection, kind of like when you are at the tail end of your illness and you never actually end up getting all the way better. It can also occur months after your illness which can lead a person down a long, opaque rabbit hole of trying to figure out what’s going on only to come up confusingly empty-handed until Dr. Twitter, Dr. Google, and Dr. Reddit offer some possibilities for self-diagnosis. For yet unknown reasons, it appears that Long-COVID affects women more than men though not so much so that you can breathe easy as a male. Additionally, Long COVID is not just found among the elderly or immune compromised. It clearly impacts people who are young, active and healthy. (There is also a cohort of Long COVID survivors who are under the age of 18 though it is rarer the younger you get.) The syndrome can also include levels of depression and anxiety previously unknown for the patient. For a significant subset of the LC population, their constellation of symptoms can lead to a diagnosis of ME/CFS - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - yet another invisible (read: deprioritized) illness. While the dx for ME/CFS has been around for four decades, there is very little research and zero treatments yet available.
