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As A Mother With COVID-19, I Faced Stigma And Shame

June 08, 2021

Sara N. Edmond, PhD, Associate Research Scientist in Psychiatry, wrote about her experience giving birth to her daughter in April 2020 after having tested positive for COVID-19 the day before her scheduled cesarean delivery. Her essay appeared in Health Affairs.

Clothed in full personal protective equipment, her face hidden and eyes barely visible but seemingly full of suspicion, my obstetrician asked me, “So you really haven’t been anywhere?”

I was about to welcome my second daughter into the world in April 2020, at the height of the first wave of the COVID-19 pandemic, after testing positive for COVID-19 at my preoperative appointment the day before my scheduled cesarean delivery. That nasal swab changed my entire birth experience, starting with a jarring early morning email with a link to my test result—SARS-CoV-2 RNA (COVID-19): Detected. My heart skipped a beat. I shook my husband awake and shared the news. My face felt hot and my hands shook as I called my obstetrician’s office. The next few hours were a blur as we navigated how the positive test result changed our plans. Eventually we were escorted through back hallways and service elevators to a makeshift COVID-19 maternity wing. The extra equipment piled in the corner of our room and the staff struggling to find supplies on a floor they were clearly not accustomed to reminded me that this space was not intended to be a maternity ward.

I sat on the hospital bed in my cloth gown holding back tears as I waited to be wheeled away from my husband to the operating room. I was grateful that he was allowed to stay at the hospital, but I had not anticipated that he would not be allowed to accompany me for the surgery. I sighed through my single-use blue face mask as, for what felt like the twentieth time that day, I retold my story, relaying details of working from home, providing therapy to veterans with chronic pain via telehealth, and only leaving the house for prenatal appointments. The medical staff’s repeated questioning left me numb.

My obstetrician probed again, wondering out loud how I managed to test positive for COVID-19 if I really had been that careful—how strange. The positive result was a shock to me, too. I was asymptomatic and had not even been to the grocery store in the past six weeks.

My daughter’s birth day had become judgment day for me.

A Pandemic Birth

I was nearly eight months pregnant when the World Health Organization declared COVID-19 a pandemic. As someone with a data-driven mind, I found that the uncertainties and constant changing of our understanding of COVID-19 fed my anxiety as I searched the news and medical journals for more information. At my thirty-four-week appointment, an obstetrician assured me I could keep going to work in person because pregnant people and babies, at the time, appeared to be low-risk. Then all nonemergency outpatient operations at the medical center where I work shut down a few days later. At my thirty-six-week appointment, hospitals in a nearby city were no longer allowing any birthing partners into the hospital, and another obstetrician from my practice bluntly told me he was not at all sure what the policy would be when I delivered. Stuck at home with few coping mechanisms, I went on long walks around my neighborhood each day, trying to distract my anxious mind.

At thirty-eight weeks, I asked the obstetrician I was seeing to review the hospital’s COVID-19 policies. In a condescending tone, she replied that I did not need information about delivering with COVID-19 because I was taking precautions. When I pushed for more, she confirmed that one birthing partner was allowed in and told me not to be afraid, misreading my attempt to prepare for all scenarios as fear and anxiety.

At forty weeks, I asked another health care provider to answer my “what if” questions. She explained that the policy was to separate COVID-19-positive mothers from their babies and that mothers should not touch their newborns for fourteen days. “What if I don’t want to be separated from her?” I asked. She paused, empathy and apprehension in her eyes. “You work in health care, so you know about patients’ rights. You can decline treatments, and you can decline to follow these recommendations.”

The charts of patients in my own clinic who have declined recommendations flashed through my head: “non-compliant; refuses recommended treatment.” I pushed further: “Are there consequences to declining?” She sighed and answered, “Well, we probably won’t call child protective services on you for wanting to hold your own baby, if that’s what you mean.” I was caught off guard—that thought had never crossed my mind. I asked about testing for hospital staff, including the staff members who would care for my newborn if I agreed to be separated from her. Asymptomatic staff were never tested—it was assumed they did not have COVID-19.

I am a “prepare for every scenario” type of person, so despite the surprising diagnosis, I knew immediately that I would decline to be separated from my newborn. I had read recent studies about COVID-19, pregnancy, and newborns, including preliminary research suggesting that COVID-19-positive mothers were not transmitting the infection to their babies and that infants were rarely getting sick. I made this decision quickly and with confidence, but my heart breaks for all of the women who were caught unaware, unsure of what to do.

When I first declined separation, the obstetrician who performed my cesarean delivery suggested that if we refused separation, perhaps my spouse could touch the baby—but I couldn’t. The policies may have evolved since I gave birth, but the logical fallacies were maddening to my research-driven mind. My spouse, with whom I live, was asymptomatic, so they assumed he did not have COVID-19. The hospital staff who were regularly exposed to COVID-19-positive patients were asymptomatic, but they probably did not have COVID-19. I was asymptomatic and still tested positive. I had worn a mask and practiced hand hygiene, yet my decision to take care of my baby myself was met with questions and concerned looks by nearly every clinician I encountered, leaving me feeling irresponsible and reckless just for wanting to hold and feed my newborn.

As I bonded with my daughter in the hours after her birth, disapproving probes by providers continued to cut into me. Everyone who entered my room questioned my hygiene practices as I breast-fed my daughter, reminding me that I was putting my newborn at risk by declining to follow the hospital’s separation policy. The morning after the birth, a nurse entered my room to check our vital signs to find me masked, cradling my tiny, swaddled daughter in my arms as I fed her. She raised her eyebrows behind her face shield and asked, “Are you washing your hands and upper body with soap and water before you pick her up?” I nodded in affirmation. “Every time?” she probed. “Make sure you are getting up and walking, too.” I nodded again, although I wanted to scream: My newborn was feeding for thirty minutes every two hours, leaving me just ninety minutes in between feedings to sleep, eat, walk, and wash up.

On Stigma

I share this story both as a mother who gave birth with COVID-19 during the pandemic and as a clinical health psychologist who specializes in patient-provider communication. I work with health professionals at every experience level, from first-year medical students to seasoned physicians, on using patient-centered approaches to enhance patient-provider relationships. I explain to my students that an important predictor of adherence to a treatment plan is how much a patient likes their provider, encouraging them to never underestimate the importance of provider communication in their work. The clinical population with whom I most frequently work is a stigmatized one—patients with chronic pain who are prescribed long-term opioid therapy and are experiencing problems related to opioid safety, efficacy, or misuse—so this is especially relevant in my clinical work.

Through this lens I saw the parallels between what I teach and what I was experiencing as a patient. People with chronic pain, particularly those prescribed opioids, often experience blatant stigma. They are labeled “addicts” before even meeting with providers, and the legitimacy of their pain is questioned. Although it was much subtler, the onslaught of implied judgments that seemed to label me an irresponsible or careless mother accosted me at one of my most vulnerable moments.

Everything a provider says or does teaches a patient something. Provider behaviors, intentional or unintentional, all convey messages. Curiosity undoubtedly accounts for some of what I experienced (how did I get COVID-19?), but it felt like more than that. Although public health messaging about reducing the transmission of COVID-19 is important, responsible people following public health recommendations can still get COVID-19, and blame does not help a COVID-19-positive person or one recovering from birth. Most of these health care providers were probably well intentioned, but intentions and impact are not equivalent. As a health care provider myself, I have some empathy for their position. Our health care system is overtaxed, overworked, and overburdened. COVID-19 is scary, and especially at the time of my daughter’s birth in the spring of 2020, we knew very little. Health care providers face their share of stigma and alienation as well. The nurse who cared for me overnight told me that her husband had not seen his children (from a previous marriage) for weeks because their mother would not allow them to visit as long as she, the nurse, was in the home and continued working. Nevertheless, I remember feeling afraid to tell staff that I had chosen to breast-feed my baby in the hours immediately after her birth, nervous about how they would react to my decision to go against hospital recommendations.

Being COVID-19 positive overshadowed everything about my birth experience. My hospital stay was lonely and abbreviated. I went home within forty-eight hours of my surgery, much more quickly than my hospital stay after my first birth experience. As I was in isolation, hospital staff rarely visited my room, and I watched our garbage cans overflow. Providers conducted most visits via video, understandably not wanting to suit up and risk exposure. The lactation consultant was relieved that my baby was latching well and that I was not requesting an in-person visit. In the months to follow, I was bombarded by doctors asking whether I was still asymptomatic and by requests to participate in research. Repeatedly, I encountered probing questions and expressions of doubt as I retold my story.

Questioning my behavior implied that I wasn’t telling the truth, that I must have been acting irresponsibly. That’s a dangerous message to send: If we suggest that people only get COVID-19 by being reckless or careless, we increase shame and stigma and discourage honesty, not to mention that once a person has it, how they got it is no longer relevant. Discrediting patients will not make the provider safer while treating an infected patient.

Shame-induced stigma is an ineffective tool for motivating behavior change and does not encourage future risk reduction, and most health care providers should know this. When stress levels are high (as they have been for most health care workers during the pandemic), we do not perform at our best, and the essential interpersonal “soft skills” of empathy and patient-centered care are often the first to disappear. Questioning patients’ narratives is not helpful, just as I teach medical students that it is not helpful to question whether a patient’s pain is “real.” Judgment increases stigma, alienates patients, worsens health disparities, and serves us poorly as we tackle downstream issues such as vaccine hesitancy and misinformation. During the pandemic in particular, taxed health care systems risk alienating patients when overburdened health care providers struggle to provide optimal care while managing the stress of working during a global pandemic.

This is one of the many reasons I emphasize self-care when I teach and supervise health care trainees. I ask trainees to identify adaptive ways to cope with negative emotions that arise in the course of their work; offer a space to process difficult clinical encounters; and encourage trainees to advocate for themselves when they need additional resources, a change in responsibilities, or even time away from work. When we allow stress or personal biases to interfere with our ability to provide high-quality care, including nonjudgmental patient-centered care, our patients suffer. Hospital systems can apply lessons learned from other public health crises, such as training in nonjudgmental patient-centered approaches and training in stigma, and ensure that providers use precise language that does not blame patients diagnosed with COVID-19. Health systems can also ensure that staff members are regularly provided with up-to-date evidence to reduce misinformation.

In my postbirth fog of exhaustion, I wanted to share the news of my daughter’s birth with friends and family, but I lacked the words to describe my experience. I circulated a generic birth announcement, omitting the details of my COVID-19 diagnosis. We left the isolation of the hospital to return to isolation at home, and without any visitors, I had few opportunities to share my story. As I wrote this piece, my then-nine-month-old, healthy, happy daughter was sleeping in the next room. I realized that even today, many friends, family, and colleagues do not know my story, and I wondered: Did the stigma get under my skin more than I realized?

Submitted by Christopher Gardner on June 08, 2021