Editor’s Note: Dr. Susannah Hills is a pediatric airway surgeon at the New York Presbyterian Hospital and the Columbia University Medical Center. She also serves as assistant professor of otolaryngology-head and neck surgery at the Columbia University College of Physicians and Surgeons. The views expressed in this commentary are her own. View more opinion on CNN.
I feel so tired, all the time. I’m having trouble remembering things. It’s like living in a fog.
Dozens of patients have told me their stories of Covid-19 recovery, some long after they have left the hospital – after the lines and tubes have been removed and they are walking on their own again, after they have returned to their normal lives, but not to their normal selves.
These long-Covid stories are not unique. As many as 30% of Covid patients may experience prolonged symptoms ranging from fatigue to loss of smell to difficulty doing everyday activities. New studies are showing these symptoms can last as long as nine months after illness, and time will likely show symptoms lasting even longer. With over 30 million cases of Covid-19 in the United States so far, there could be millions of Americans struggling with long-term symptoms.
As I listened to these recovery stories from my doctor’s chair – the relentless fatigue, the shortness of breath, the mental fog – my own experiences as a patient started coming back to me, experiences that I had buried years ago. These Covid long-haulers were telling me my story of long-term recovery, giving voice to struggles I understood all too well but never talked about.
My illness wasn’t Covid-19. I was diagnosed with Stage 3 breast cancer in the second year of my surgical residency training over a decade ago. I took nine months off for surgery, chemotherapy and radiation, and I came back to work a couple of weeks after my last radiation treatment, expecting to put it behind me.
I had fought for my life, and won. I was a survivor. I was supposed to feel changed. Enlightened, even.
Instead, I felt exhausted. I was having a hard time remembering things. My body felt heavy and my head was in a fog.
One afternoon, a few months after my return to work, we were making rounds on a long list of patients. It had become my norm to lag a few feet behind, trying to keep up, slightly winded. But when I climbed a flight of stairs from the fourth to the fifth floors, I completely lost my breath, became dizzy and had to stop. As I gripped the railing and sat down in the middle of the staircase, I realized that this was only the beginning – the hardest part of my recovery was ahead.
I compensated for my depleted state by staying longer and working harder, which in turn made me more exhausted. I had developed a tremor and neuropathy in my fingertips, which made performing surgery even more challenging. So, I moved more slowly in the operating room, with an almost paralyzing fear that I would make a mistake.
I never talked about my symptoms. When someone asked how I was doing, I was always “fine.” I hoped by not talking about it that it would go unnoticed, that it would disappear. I didn’t want to be seen as “recovering.” I just wanted to be seen as myself.
Many suffering with long-Covid symptoms will also remain silent. We have learned about the power of stigma to invoke silence from other invisible, chronic syndromes like myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), which health care experts, including Dr. Anthony Fauci, believe is similar to long-Covid. Fatigue is one of the most common symptoms reported by Covid long-haulers, affecting as many as 85% of long-COVID patients in a recent study out of Northwestern Medicine. And nearly 40% of ME/CFS patients have reported in previous studies the need to be secretive about their symptoms.
Stigma from health care providers can be especially damaging. Studies show as many as 77% of ME/CFS patients are labeled with psychological diagnoses by their physicians. Patients with chronic illness who experience or anticipate stigma from health care providers are less likely to access the health care they need, and may have a decreased quality of life.
Despite my silence about my own symptoms, they did not go unnoticed. My co-residents and faculty supervisors noticed. I was frustrated with myself, and I could tell that others were frustrated with my performance, too. I felt the scrutiny, the constant evaluations. As self-doubt came creeping in, I began to wonder – was I damaged beyond repair? Could I actually complete my training successfully?
As it turned out, I could. But it took time, healing, and rigorous compensatory strategies.
The neuropathies eventually disappeared, the tremor gradually faded. I passed my written and oral board exams readily. I completed a subspecialty fellowship in pediatric otolaryngology and moved on to a fulfilling academic surgical practice. I still feel tired all the time, but I’m pretty sure I’m no more exhausted than my fellow female surgeons.
But the lack of understanding about the chronic symptoms of recovery from long-term illness, both by me, a doctor, and other doctors around me, made it harder.
As Covid long-haulers fight to balance the physical and emotional challenges of recovery with the everyday difficulties of a pandemic, the one thing that all of us can offer is understanding. Many of these patients are, for example, parents trying to help children navigate remote learning, or caregivers to elderly or disabled family members. And for those struggling with the threat of job and food insecurity, working less hours to cope with long-Covid symptoms could mean paying bills late, getting a past due notice, or being fired.
My recovery took years, and so will the recovery of thousands – perhaps millions – of patients who have survived Covid-19. They will live with the effects of this virus for years to come, and they will fight to keep up, to compensate, to get their lives back. Many will be unable to talk about how they are changed for fear of stigma, because they just want to be themselves again. This will be a new pandemic of long-Covid, lived out largely in silence.
So let their stories be heard, without judgment, even when they can’t be spoken out loud. It will be our job to support these warriors as they heal in the months and years ahead, to acknowledge that long-Covid is real and that recovery is a deeply personal and individual path.