As COVID-19 infection rates fall, doctors and patients are sifting through the wreckage of symptoms left behind.
Shortness of breath, heart palpitations, chest pain, fatigue and brain fog — those are just some of the ongoing complaints of a growing number of people, many of whom had only mild cases of acute COVID-19.
“Long COVID,” also known as post-acute sequelae of COVID-19, is associated with a whole host of problems involving multiple body systems, much like other chronic diseases that often go unrecognized and undiagnosed. Today, doctors and scientists are seeing epic spikes in immune dysregulation following COVID-19.
The complex and confounding nature of chronic illness is all too familiar to poet and author Meghan O’Rourke. In her new book, “The Invisible Kingdom: Reimagining Chronic Illness,” O’Rourke integrated her experiences of coping with undiagnosed, incurable long-term sickness with reporting on the role of chronic illness in Western medicine.
O’Rourke’s call for medical system changes could help not just the 24 million to 50 million people in the United States already struggling with chronic illness but also the increasing ranks of those affected by long COVID.
Estimates of the frequency of long-term symptoms and conditions after COVID-19 infection range from five per cent to 80 per cent, according to the U.S. Centers for Disease Control and Prevention. The World Health Organization‘s estimates range from 10 per cent to 20 per cent.
Whatever the final numbers, medical recognition of post-COVID conditions is driving new research into the long-term effects of infection. These findings, O’Rourke argued, could advance diagnosis and treatment of other chronic diseases as well.
This conversation has been edited and condensed for clarity.
CNN: How does Western medicine’s approach to disease impact people with chronic illness?
Meghan O’Rourke: Western medicine is very siloed — different kinds of doctors treat different parts of our bodies. This works well for acute care but not as well for chronic diseases that roam the body, as autoimmune diseases often do.
Systemic illnesses that produce a whole array of symptoms, say neurological problems combined with joint pain, require treatment from multiple doctors. Assimilating information from different providers and making sure your doctors are communicating can make it harder for patients to get comprehensive care.
Modern medicine is uncomfortable with treating problems it can’t easily see on X-rays, MRIs, echocardiograms or through lab work. Patients whose bodies exists at the edge of medical knowledge get left behind.
CNN: You mention that doctors tend to interrupt patients after 11 seconds of speech. What have you experienced?
O’Rourke: When you’re ill, you desperately want validation from others. Recognition gives you the possibility of treatment and even cure, but more importantly, the dignity of your reality.
In my 20s, I saw doctors for a roller coaster of symptoms, but no one ever thought I was sick. I got acutely ill in my mid-30s and was incapacitated for days on end. Initially, no doctor could find anything.
Loneliness came not just from missing out on life but from being alone with my illness.
Instead of doctors saying, “We don’t have the tools, yet, to see your disease,” they tend to assume symptoms are psychological and channel patients to a psychiatrist. That happened to me, too.
Medical science is based on doing no harm. But there’s a harm done by means of incuriosity when doctors reflexively categorize as psychological the symptoms of patients with hard-to-measure illnesses.
CNN: What impact does the “care effect” have on health?
O’Rourke: The “care effect” shows that patients treated by a doctor who is warm, asks questions and expresses empathy for your suffering show dramatic health improvements.
One study found that patients with irritable bowel syndrome treated by an empathetic versus a brusque researcher had symptom relief as high as that associated with the most powerful drugs.
Doctors need to get reimbursed for spending time with you and getting high empathy ratings.
CNN: What has helped you cope?
O’Rourke: I’ve spent a lot of time asking myself, how can I make this sickness a little more manageable? What are my goals for my life, my day, my morning, and how do I dispense my energy accordingly?
But validation must come first. You can’t get to that place of doing your own work until you’re not spending your energy just persuading people that what you’re dealing with is real.
Once you have that recognition, you’re faced daily with balancing what brings you joy within the limitations of your energy. I reminded myself often that I could own those tiny pockets of energy. Those were mine.
We love to tell other people how to be sick. But there’s no algorithm for it, no right answer. It’s different for every person and changes day by day.
CNN: What extra challenges do members of some communities face?
O’Rourke: I still remember the flush of shame and anger, followed by a wave of nausea, after a doctor had patronized me.
It became embodied for me in that moment that this was not just my story but that of tens of millions of Americans. If anything, I was having a good experience with chronic illness compared to many.
Privilege — financial, educational, geographical, language — plays a huge role in people’s experiences with these diseases, which require a huge amount of perseverance. Compounding the problem are structural racism and the lack of a social safety net that have tangible impacts on a person’s immune system.
Also, many doctors who understand these complex illnesses do not take insurance. They want to be free of the bureaucracies that limit time with patients to the 15-minute appointment.
CNN: What has the COVID-19 pandemic taught Western medicine about chronic illness?
O’Rourke: COVID has vividly dramatized the fact that infections can affect people in a wide variety of ways.
An emerging vanguard of medicine points to the idea that a lot of chronic illness is actually caused by repercussions of infection that affect a subset of patients who never fully recover.
Even before COVID, researchers were working to advance the idea that infection can trigger many kinds of chronic illnesses, including autoimmune disease, myalgic encephalomyelitis/chronic fatigue syndrome, or even chronic Lyme disease. Long COVID fits into this model.
CNN: How does long COVID manifest? What do you recommend for people suffering?
O’Rourke: Some patients report physical, neurological or cognitive symptoms. Evidence suggests that the immune response to COVID may impact your autonomic nervous system, triggering dysautonomia.
Many people with long COVID have documented postural orthostatic tachycardia syndrome, which affects blood flow. This can cause irregular blood pressure, fainting, dizziness, chest and abdominal pain, brain fog and even nausea. POTS is measurable, but doctors don’t routinely screen for it.
One piece of advice I give to any long COVID patient is that you actively ask for tests, including for dysautonomia and POTS, because they will not be given automatically.
Research also suggests that COVID can trigger food sensitivities, creating an immune response that would cause brain fog and fatigue.
Even patients who only had mild COVID cases can experience ongoing changes to breathing patterns that compromise both their nervous system and their blood oxygen levels. Targeted breathing exercises can help.
My overall recommendation is to keep searching for a really informed doctor, ideally one from a specialized unit like the Mount Sinai Center for Post-COVID Care. As with any multisystem chronic illness, coordinated care is best.
CNN: How has the prevalence of long COVID symptoms among health care workers shifted medicine’s view of these illnesses?
O’Rourke: Invisible diseases are more visible than ever.
Post-acute COVID syndrome will probably turn out to be an umbrella term for different kinds of diseases triggered by SARS-CoV-2. But long COVID is shining a light on a wide variety of chronic illnesses that all share immune and nervous system dysfunction.
The scope of the problem, now that so many people have been infected with COVID, has led to new research funding. The WHO, NIH (National Institutes for Health) and other places are dedicating new funds. But will these new research dollars be applied appropriately? Will patient’s voices and experiences be centred?
Some researchers are concerned about the ongoing tendency in Western medicine to sideline patients’ testimony.
Still, many researchers express hope that new attention and urgency around long COVID will lead to a sea change, improving diagnostics and treatments for a wide range of diseases.
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