Post COVID syndrome is not just in your head — it's real. Like autoimmune diseases or invisible illnesses, triggers for symptoms can be unique to the individual and difficult for outsiders to see and understand. Also, as with other illnesses, validation of your experience can be an important part of recovery.
The evolution of what we know about COVID-19 infection has been head-spinning and difficult to keep up with, even for some healthcare professionals. Months into the pandemic, it became clear that many who were considered (at least in terms of timeline) to be recovered from the novel coronavirus were instead citing a continuation of symptoms — and sometimes debilitating ones.
Without substantial evidence and understanding, these patients - now often referred to as COVID long haulers - were initially largely written off as having unaddressed anxiety or chronic fatigue. Simply put, they were made to feel as if their COVID long haul symptoms were all in their head.
An article published in TIME notes, “in long-hauler support groups, there are countless stories of doctors who were skeptical, rude or unhelpful, if not baldly disbelieving.” An additional barrier faces many potential COVID long haulers: a lack of access to testing leaves them unable to prove that they had COVID-19 in the first place.
Still, their COVID long haul symptoms are real — and thankfully, belief in their reality has steadily grown and is now widely accepted.
What is Post COVID Syndrome?
COVID long haul is defined by the Centers for Disease Control and Prevention (CDC) as, “a wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected with the virus that causes COVID-19.” COVID long haul is also known as long COVID, Post-Acute Sequelae of SARS-CoV-2 infection (PASC), and post-COVID conditions, among other names.
Some studies show that over 30% of those previously infected with COVID-19 go on to experience COVID long haul symptoms, even if their initial infection was mild or symptomless. According to Yale Medicine, while the definitive causes of COVID long haul remain uncertain, three main theories have emerged: residual organ damage, remaining virus, exaggerated immune response.
The most common COVID long haul symptoms include difficulty breathing, fatigue, brain fog, and cough. However, there have been over 200 symptoms reported by those afflicted, adding to the complexity of helping patients affected.
COVID Long Haul and Contested Illnesses
During the early months of reported COVID long haul symptoms, PASC seemed on track to become a “contested” illness. According to Psychology Today, a contested illness is named as such because “some people, including physicians and scientists, dispute their existence.” The most well-known among them are “chronic fatigue syndrome (CFS, also called myalgic encephalomyelitis or ME), fibromyalgia, multiple chemical sensitivities, and chronic Lyme disease.”
Understandably, those struggling with these health issues would argue that their conditions are very much real. But unfortunately, they are often misdiagnosed with anxiety, depression, or other mental health conditions.
However, the mass influx of patients experiencing COVID long haul helped the condition to gain quick attention - and widely accepted validity. In fact, under the Biden administration, “people with long Covid may qualify as having a disability under the Americans with Disability Act because the pandemic-related condition can substantially limit one or more major life activities.”
This is echoed in an opinion piece published within the New York Times: “One thing we’re definitely doing better with long-haul Covid than with Lyme, chronic fatigue syndrome and all their strange companions is taking the lived experience of long-haul patients seriously — probably because we have so many of them all at once — instead of treating them as weaklings or hypochondriacs.”
COVID Long Haul as an Invisible Illness
So, while COVID long haul might have been more quickly “legitimized,” it’s still often undiagnosed, misunderstood, and lacking in research, continuing comparisons to the likes of CFS/ME. Furthermore, for most, COVID long haul is an invisible illness: a disease that affects a person’s ability to conduct her life as she’d like to but that you can’t “see.”
Similar to many autoimmune diseases, COVID long haul manifests itself in complex and unique ways with no two sufferers being exactly alike. Furthermore, diagnosis can be difficult and elusive with symptoms “like fatigue, headaches, and body pain, that could be associated with hundreds of different medical conditions.”
According to Yale Medicine, “There is no single test that can diagnose long COVID. Doctors diagnose it, in large part, based on a patient’s history of COVID-19 and by ruling out other possible causes.” And proving you’ve had COVID-19 may not always be easy, especially if your infection took place before widespread testing reliability and availability.
A Health.com article delves into the experience of living with an invisible illness, noting that sufferers often face judgment due to their condition not being readily visible -- from being told they’re too healthy-looking to be sick or being barraged for using designated handicapped spacing.
COVID long haulers might do well to heed advice for those with other invisible illnesses: be your own best advocate, maintain journals of your experience, find healthcare practitioners willing to believe you, and always request records of testing results and notes from medical appointments.
When it comes to making the invisible more visible to loved ones of those suffering, it’s best to have one-on-one, direct conversations. While those around you might not see fatigue, headaches, or other COVID long haul symptoms directly, they should know that they are there -- and that they can be debilitating. This open communication may alleviate unnecessary judgments on your ability to “show up” while you manage COVID long haul.
COVID Long Haul Treatment
Thankfully, treatment options for COVID long haul are coming to light nearly as rapidly as findings from research regarding initial COVID-19 infections. While obtaining a diagnosis and finding initial footing in receiving care may be an arduous task, hope grows.
According to Mount Sinai’s Center for Post-COVID Care, “COVID-19 affects every patient differently, so your treatment needs to be personalized to you. While the long-term effects of the virus are not clear yet, we do know that it can affect many different systems within the body—from the lungs to the heart to the kidneys.”
Mymee’s Post-COVID Support Program was initiated in collaboration with Mount Sinai Hospital and is the first remote, self-care program specifically tailored to address the extreme symptoms resembling autoimmunity in people who have recovered from the virus. Several published research studies have begun to draw links between COVID long haul and systemic autoimmune diseases.
Building upon Mymee’s clinically validated Mymee Core Program, the post-COVID program has seen success in providing personalized, effective care through a combination of data tracking and assessment and one-on-one expert health coaching.
Mymee understands that COVID long haul is real and works with members to create a personal health plan tailored to their lifestyle and goals — so that they can feel like themselves again. Learn about how Mymee has helped others and get started on conquering COVID long haul.