Long COVID Is a Disabling Disease—And It’s Not Rare

Today is International Long Covid Awareness Day, and the millions of people struggling with life-altering symptoms of Long Covid need us to pay attention. Many have been sick and disabled for almost four years now. For me, it’s been over two years since Long Covid stole the pediatric career I loved.

Source: Nadia Snopek/Shutterstock

Long COVID Has Taken So Much I Loved

I left work on January 13, 2022, completely unaware that it would be my last day seeing patients as a pediatrician. That day marked the beginning of weeks fighting to breathe with my first COVID-19 infection. The nights and days blurred together as I slept for barely and hour at a time, waking from the shortness of breath to take nebulizer treatments every two hours around the clock. My doctor barely kept me out of the hospital with “maximal outpatient therapy.”

As the weeks wore on, I began to be able to hear over the sound of my own labored breath. What I heard was the loud, high-pitched continuous ringing of tinnitus. Often louder than my kids’ voices when they try to talk to me, that tinnitus has never gone away.

Before I got Covid, I was an active person who loved to exercise. I took the family hiking and on long bike rides, walked miles with the dogs, and was always up for an adventure. I loved travel, whether long walking tours of cities in Europe or riding roller coasters with my kids. I did all the things other moms do: cooking, keeping the family organized, getting together with friends. As a pediatrician, I worked doctor hours (a lot of them), rounded at the hospital, took overnight call, attended long meetings after work. I was also giving talks at speaking events and writing five to ten articles a week in national publications.

Cooking dinner for the family is now an aspiration that I only occasionally realize. Sometimes, I can have a conversation, sometimes I can’t follow what others are saying or find the words to respond. I can no longer count on my body to be able to do basic things like standing up without a near-fainting episode, or the world spinning from vertigo.

The Symptoms of Long Covid

I’ve adapted by using mindfulness and focusing on what’s going well in the moment, and I personally find my symptoms boring. But this is National Long Covid Awareness Day, and people are curious about this misunderstood disease.

When most people think of Long Covid, they think of fatigue. When I first started sharing with neighbors about my illness, many of them said, “Oh, I’m tired too.” I would think to myself, “You worked out this morning, drove the kids to school, worked all day, made dinner, drove the kids to their activities, walked the dogs… You have no idea.” The fatigue of Long Covid means I can’t walk up six stairs without my heart rate jumping to 120 or 130 beats per minute, becoming short of breath and needing to rest before I climb the remaining steps. It means getting dressed in the morning costs me the effort that a six-mile hike used to. It means that mental activities change my breathing so my husband tells me I sound like I’m running a marathon while sleeping. The bone-wearying fatigue of Long Covid has made me hypersomnic: I must sleep 10-12 hours at night plus nap two to four hours in the afternoon and always wake up exhausted. More commonly, people with Long Covid develop the opposite sleep symptom: insomnia.

Long Covid commonly triggers dysautonomia, a dysregulation of the autonomic nervous system that controls our heart, breathing, digestion, blood pressure, heat tolerance, and more. My own symptoms of dysautonomia include dizziness with standing or even sitting up straight for too long, rapid heart rate, shortness of breath, gastroparesis (which means my stomach stops moving food through), vomiting, nausea, and diarrhea. I rapidly become ill in even mild heat.

Long Covid Crashes

If I overdo it even slightly, by trying to do too much mental activity or trying to walk halfway around my cul-de-sac, I crash. These crashes, which can also be random, last a few days up to a month. These are the times when I draw on all of my grit to endure a body that feels like a prison. Symptoms include: sore throat, severe headaches of a variety of types, muscle pain all over my body, drenching sweats, tremors, blurred vision, painful foot spasms, myoclonic jerks, numbness and tingling in arms and legs, intense vertigo, weakness, muscle fasciculations, constant rapid heart rate, and shortness of breath.

Among the oddest of my crash symptoms are two that are surprisingly common among people with Long Covid. The first is a feeling of either my own body or the world vibrating for hours. But the worst symptom of Long Covid is the feeling that my body has been poisoned. It is indescribable if you’ve never had it: like the worst day of a fresh Covid infection but so much worse.

Long Covid Stole My Career as a Doctor

Of all of the things in my life that Long Covid has taken from me, one of the most painful losses is that of my pediatric practice. Being able to care for children and adolescents as their doctor was one of the greatest joys of my life. It has been my purpose and my mission.

As both a physician and a patient, the frustration of not being able to work is overwhelming. I intimately understand the needs of Long Covid patients and the variability of treatments available, yet I find myself facing disbelief from doctors who are unfamiliar with the condition. To be unable to get out there and help other patients who need a doctor that understands Long Covid is infuriating.

Which Treatments Work for Long Covid Vary by Person

At this time, the available medical treatments for Long Covid are symptomatic. Because we don’t yet know the root cause of the disease, all doctors can do is treat symptoms. The more we learn about the disease, the more we find it affects every body system.

For example, just two of the possible mechanisms involved in brain fog include disruption in the blood brain barrier with associated inflammation, as well as immune system dysregulation in the brain that leads to neurotoxicity. Meanwhile, exercise notoriously makes many people with Long Covid sicker, sometimes in an ongoing way. Two of the many mechanisms involved in this phenomenon include malfunction in muscles’ ability to extract oxygen from the bloodstream and post-exertional muscle damage.

These examples barely scratch the surface of the medical complexity of Long Covid. Perhaps due to the many body systems involved, the available treatments may work for one person and not another. So far, doctors are repurposing existing medications developed for other diseases to try to help their patients. I myself have worked with a Long Covid specialist and tried 90 percent of the currently available treatments.

As Eduardo Cuevas and Karen Weintraub so aptly wrote in USA Today, “The complexity of both the disease and the drug development system, not to mention the difficulty of getting doctors to believe them and insurance to pay for visits, has left Long Covid patients feeling alone and adrift.”

The Need for Research on Long Covid

Despite the hardships, I refuse to give up hope. I am determined to recover, but it’s been over two years and my body has not naturally recovered. Those of us living with Long Covid are in dire need of significant advances in our understanding of the disease and effective treatments.

While there has certainly been research on Long Covid, most of it has focused on defining the condition rather than on treatments. Patients have expressed deep disappointment with the way the NIH allocated the $1.15 billion Congress provided to help patients in December 2020. The vast majority of those funds (by far the largest funding grant for Long Covid research) went towards observational studies, not clinical trials to find treatments.

In contrast, the Patient Led Research Collaborative for Long Covid group focuses on studying what will most help patients. But the $5 million in funding for biomedical research they’ve secured is hardly a match for the NIH funds. Meanwhile, labs like those of distinguished researcher Resia Pretorius at Stellenbosch University have concurrently studied both the biology of Long Covid and treatments for patients.

NIH Announces New Funding for Long Covid Research

Fortunately, the NIH recently announced $515 million in additional funding. These funds will be used for several observational research goals, however some of the funds will also be used for clinical trials, though the allocation is not clear.

Just this week, the NIH announced that they will study three different treatments for Long Covid. This will consist of two phase 2 clinical trials, together testing the safety and effectiveness of the three treatments, only two of which are medications.

The first is a type of intravenous immunoglobulin product called Gamunex-C, which provides antibodies via IV infusion, a treatment that may protect from infection and combat certain autoimmune responses in the body. The second is Ivabradine, an oral medication that reduces heart rate and is currently difficult for Long Covid patients to get covered by insurance. The third is non-drug care in the form of weekly phone calls with a care coordinator to manage a series of activities. I hope that this is not the full extent of what the NIH has planned when it comes to testing treatments.

I understand why Americans generally want to treat the COVID-19 pandemic like it’s over. Even so, let’s not forget that funding treatment-related research for Long Covid treatments continues to be an urgent need. Whether we fund research for Long Covid or try to ignore it, society is still paying the costs. Unemployment due to disability from Long Covid has been estimated to cost the U.S. 1 percent of GDP, or between $168 and $230 billion a year. By comparison, funding research is relatively cheap. It just makes sense to keep researching treatments that allow people like me to return to our work and our lives.