For Those with Long-Haul COVID, the Virus Was Just the Beginning
“I wish people understood the reality of long-haul COVID. It’s hard to fathom going from perfectly healthy to completely debilitated in a few short weeks or months, but it is happening all over the world. This is going to pose such a challenge to health care and economies for many years to come,” says Megan Scholl, PA-C.
Megan has been a Physician Assistant for twenty-two years and a frontline worker throughout the pandemic. Shortly after joining an urgent care group in 2019, COVID-19 struck, and her life has revolved around the Novel Coronavirus since. In full hazmat suits, she and her colleagues trudged through snow and sweat under the blistering summer sun to provide testing and care for patients in their cars. Over the last two years, she has witnessed thousands of patients presenting with the full spectrum of COVID symptoms, including those who have been left with catastrophic long-term effects.
“Most people will survive a COVID infection, but those who end up with long-haul COVID will face a harsh reality,” Megan tells us. She is especially concerned with the one in four patients suffering with post-COVID, or long-haul COVID, defined as a “broad range of symptoms (physical and mental) that develop during or after COVID-19, continue for at least three months from the onset of illness, have an impact on the patient's life, and are not explained by an alternative diagnosis.”
“With over two-hundred symptoms reported thus far, long-haul COVID looks different for everyone,” Megan reports. “These symptoms include fatigue, pain, headaches, brain fog, GI disturbance, shortness of breath, chronic cough, heart palpitations, cognitive dysfunction, neuropsychiatric illness, sleep disorder, post-exertional malaise, memory loss, blurred vision, skin manifestations, hair loss, tinnitus, menstrual cycle issues, muscle weakness, modified sense of taste/smell, and on and on. Studies show that about half of all long-haulers have to modify their work schedule, and a fourth of them are unable to work at all. Women are twice as likely to become long-haulers compared to men until around age sixty, when the risk becomes equal.”
Unfortunately, in May, 2020, the virus hit Megan even closer to home when her bright, ambitious teen daughter became a COVID long-hauler. “My daughter’s COVID was not uncommon; she lost her sense of taste and smell, had a headache and mild GI distress, but then her headaches continued and almost overnight, she developed one of the worst cases of Obsessive Compulsive Disorder I have seen in my career. From the OCD grew anxiety, panic attacks, and depression. On top of the mental illness, she also suffered memory issues, loss of focus, and decline in cognitive function.” Her straight-A student who, prior to COVID, had been sailing through AP classes and had her heart set on Stanford, “could no longer tell me the order of the months of the year.” Along with the headaches and mental illness, Megan’s daughter was also diagnosed with chronic fatigue and postural orthostatic tachycardia syndrome (POTS).
“We are seeing a huge number of patients, predominantly female, diagnosed with dysautonomia, a group of medical conditions involving the nervous system that controls involuntary body functions like heartbeat, breathing and digestion.” Megan herself has been living with and studying POTS for over a decade, so she knows just how detrimental it is. “An estimated thirty-eight million Americans have developed a disorder of the autonomic nervous system following COVID, and once there is an insult to the autonomic nervous system, there is no coming back to normal,” Megan reports. “These patients’ lives will never be the same. This is going to be a huge burden across the world in so many ways.” She does note that the silver lining to this virally-induced chronic illness pandemic is the much-needed attention and research dollars being syphoned in that direction.
The only sure way to prevent long-haul COVID is not getting COVID in the first place.
Megan reminds us that “Anyone who has had COVID is at risk of getting long-haul COVID,” and that Black and Hispanic communities have been hit especially hard with the virus and its aftermath. There are those patients, like Megan’s daughter, who had a very light case of COVID when initially infected, but later end up with symptoms involving nearly every organ system. There are also those who become acutely ill when first infected, requiring hospitalization and even breathing support via ventilators, who now suffer from lung scarring, multi organ damage, blood clotting issues, musculoskeletal problems, as well as PTSD and the myriad long-haul COVID effects. Vaccines (and boosters) have made those critical cases less common.
COVID vaccines lower the risk of long-haul COVID, so getting vaccinated and boosted is a sound safety measure, but the only sure way we know to avoid it all together is by never getting infected with the virus. “COVID IS NOT OVER!” Megan reminds us. “We are seeing numbers rising in my office, across the US, and globally. There will be more variants of concern, people are going to continue to die, and others will suffer the effects of long-haul COVID. I have pandemic fatigue like many others, but the alternative is very scary, believe me. I’m living it and I see patients daily with post-COVID sequelae.”
Who to turn to if experiencing long-haul COVID?
“Because of the multi-system effects of long-haul COVID, it takes a multidisciplinary team of specialists to care for them,” Megan reports. “Long-haul COVID clinics are popping up all over, with Physical Therapy, Occupational Therapy, mental health providers, and various medical specialties including pulmonary, cardiology, neurology, rheumatology, social workers, and more.” Of course, those who are economically disadvantaged or underinsured may find access to care even more challenging.
Fifty-one-year-old weight lifter and small business owner, Sonya Mastick, eventually found a team of practitioners to help her through long-haul COVID, but it took a while. Sonya contracted COVID before it was widely known to be in the United States, so she initially encountered skepticism and dismissal from healthcare providers. “Mine started with coughing, sinus infection then strep throat, and bronchitis. A month later I ended up in the hospital with chest pain, which was costochondritis, or inflammation of the intercostals of the ribs,” a pain which would plague Sonya for almost 2 years. A few months after the respiratory symptoms began, she developed mysterious body rashes which stumped dermatologists and took 6 months to resolve. Later, she experienced memory issues, speech problems, and loss of grip strength in her hand, all related to hypoxic brain injury. It felt like her body and mind were falling apart and it took months to figure out that these things were all related. In the end, Sonya saw neuropsychology, neurology, and many other specialists, and received months of speech, physical and occupational therapy, essentially following stroke protocols to relearn speech, regain strength, and recover lung capacity.
Now, over two years since her initial COVID infection, Sonya reports that she is doing fairly well physically and mentally. But, emotionally, this experience has also been difficult. “I went through the gamut of emotions; fear, frustration, and lots of anger.” Sonya says that her anger was mostly aimed at others’ denial and indifference to the dangers of COVID. In early 2020 when she was experiencing the traumatic, bewildering effects of the virus, “We had a government that was downplaying its danger. I am still angry and in disbelief. It felt very invalidating. I had to protect my peace with less exposure to social media and the news.”
How can healthcare providers best meet the long-haulers’ needs?
Megan’s advice for providers who are seeing patients with long-haul COVID is to validate them, listen to, and believe them. “We need to a medical community who is willing to learn and think outside of the box. We have a long way to go.” She also recommends that patients (with discernment) find others fighting similar long-haul COVID battles through online forums and support groups.
What does the path forward look like for long-haulers
“The primary goal of therapy is to manage symptoms and work towards getting patients functioning again,” Megan says. Dr. Christian Sandrock, a professor of pulmonary and critical care medicine, emphasizes this point in the UC Davis Health News, “From the pattern we’ve seen so far, we can say some patients don’t get better, but many do, although the pace is glacial. We tell people not to look back day to day or even week to week, but they can see they’re improving month to month. Right now, that is at least something. And we hope we will learn more soon.”
Sarah Zimmerman is a freelance writer in Northern California and is working on her first novel. In past lives,, she has been a Physician Assistant in Women's Health and the owner of a vegan ice cream business. Sarah writes about marriage, sex, parenting, infertility, pregnancy loss, social justice, and women's mental and physical health, always with honesty and humor. She has written for Ravishly, Cafe Mom, Pregnant Chicken, and more and can be found at sarahzwriter.com and on Medium, Twitter, Facebook, Instagram and TikTok at @sarahzwriter.