The first Friday of San Francisco’s shelter-in-place, I walked down the dozen stairs to our front door, picked up a package that had just arrived, walked back up the stairs, and couldn’t breathe. I stood in the kitchen, chest heaving as I tried to tell my partner, AJ, what had arrived.
It wasn’t the first sign, but it was the first one I took seriously. Several days before, I’d caught a glimpse of myself in the bathroom mirror and wondered why my lips were blue, odd since I didn’t feel cold. The night before, I’d gotten into bed and, after my usual rassling around to get comfortable, had spent several minutes trying to catch my breath. I’d awoken that Friday morning with a burning pinch in my lungs, the sensation that I could feel their insides.
The next day, it was worse. I spent two hours in bed waiting for a nurse to return my call. When she did, I answered her questions: “Sometimes.” “All the time.” “Moderate, I guess.” “A few days.” I told her about the two times I’d had pneumonia, once at age 26, again at 29, and how, even though I’m a physically fit 32-year-old white woman, my lungs had never been as healthy since. I told her my lips were blue off and on. She advised me to present at the emergency department, alone, wearing a mask.
We scrambled. I put on real clothes, and AJ packed a bag for me. He drove me to the nearest hospital and pulled into the emergency bay. We said “I love you,” and I told him over and over that it would be all right, that I’d be home in a few hours. But we both knew that neither of us knew.
***
I walked into the St. Mary’s Medical Center ER, bracing for an hours-long wait. This was March, the early days of the pandemic, when we were starting to get news reports from other parts of the country of hospitals at capacity and air-conditioned trailers being used as overflow morgues. Instead of pandemonium, I saw one other person in the waiting room, a man delivering a wheelchair. The admitting nurse sanitized my driver’s license and insurance card, then handed me off to another nurse, who marked down my symptoms. She took my temperature and measured the level of oxygen in my blood; both were normal. She walked me back to a bed in the ER and gave me a gown. It was the first time in my life I’d been a patient in a hospital.
I’d woken up a handful of hours before but was already bone-tired, so I lay in the hospital bed, under the full fluorescence of the lights, and tried to sleep until the exam began. A tattooed and chipper nurse-practitioner came in and asked me to rattle off my symptoms again. He put a stethoscope to my back and asked me to pull aside my mask so he could look at my no-longer-blue lips. Had I been running a fever? No. Any sign of a cough? Only after using my inhaler. Had I come into contact with anyone who had tested positive? No, but 10 days before, I’d been in LAX.
He leaned against a cabinet near the bed, arms crossed over his chest. Did I think, perhaps, that this might just be anxiety? he asked gently. Before I could answer, he reassured me that it would be totally normal to be feeling anxious. “My wife is worried sick,” he said.
I was caught off guard, unsure of how to respond. No was the honest answer, but saying that would also feel a bit like I was putting on a brave face. I settled on “I mean, who isn’t anxious right now?” He nodded and looked at me expectantly. “But I’ve been having these symptoms when I’m not anxious,” I told him, adding that I knew what anxiety felt like. It knots my stomach, drenches my skin in sweat, makes my heart beat in 5/4. I’d felt none of that in the days and hours leading up to my visit to the ER. Instead, talking felt like a marathon; sitting still felt like drowning.
But I didn’t explain all that, and he informed me that I did not meet the criteria for a COVID-19 test. As a consolation, he offered me a chest X-ray. “I probably wouldn’t be able to do that for you, in your present condition, a week from now,” he said, intimating that he expected the number of people needing them to surge.
While waiting for the X-ray results, I texted AJ. “I am now feeling a bit sheepish and like it was maybe an overreaction to come here.” He replied immediately: “Well, another health professional told you to go. It wasn’t a panic, it was advice.” He was right, but I still felt embarrassed; what if this really was just in my head? I reminded myself that anxiety was an understandable response to a pandemic and a shelter-in-place order; that tests were scarce, so of course the hospital, in an effort to triage, had to ask a question like that; that the ER was empty, so I wasn’t taking a bed from someone who needed it more.
The X-ray results showed nothing abnormal in my lungs. The nurse told me to leave my hospital gown on the bed and isolate at home until my symptoms abated. I felt some small measure of relief knowing that my lungs looked healthy, but it mostly just deepened my sense of frustration and embarrassment. I felt sick, so why was nothing measurably wrong?
***
The days after my hospital trip were a merry-go-round of taking my temperature (always normal), weariness mere hours after waking up, and afternoon-consuming naps. Moving was exhausting, and talking left me out of breath, but most of the time I couldn’t think clearly enough to talk. Spiderwebs had grown in my lungs and brain.
When friends and family sent prayers and good vibes and emoji and advice, I had nothing much to report back. How are you feeling? About the same. Progress report? None.
Then, about a week after my trip to the ER, I noticed that my lungs weren’t tight and burning all the time; a few days later, they stopped burning altogether. Somewhere in the second week, I woke up in the morning and realized I could think clearly; the spiderwebs were gone. It was the first day I felt a bit more like myself, the first day I didn’t need an afternoon nap. AJ cautiously marked it on our fridge whiteboard as Healthy Daze 1. The next day, we erased the 1 and wrote a 2; the day after that, a 3.
I felt fine for days on end, then weeks. But then, seemingly out of nowhere, I would have a day or two or three when conversation left me feeling like I’d bolted up 10 flights of stairs. AJ would lean in to kiss me, then pause and turn me toward the light to search my lips for signs of a cold blue shadow. I’d burn out by 3 p.m. and burrow into bed.
I called my own nurse-practitioner, whom I hadn’t been able to reach prior to my ER visit, and told her how I was feeling. “Sounds like classic anxiety,” she said. No, I told her, I know how anxiety manifests in my body, and this isn’t it. She was stumped and left me with no answers, just the instruction to follow up if my symptoms worsened.
She wasn’t the only one suggesting a psychological rather than physiological cause. Around that time, a handful of friends and family had asked whether I thought it was just stress. Despite my ER sheepishness, I had felt confident that my symptoms pointed to a physical illness, but all these suggestions made room for doubt to creep in. As my symptoms cycled, waning and waxing, I became consumed by the idea that I was anxious and didn’t know it and, therefore, no longer knew myself. It was a profoundly unsettling thought. Weeks slid into months, and from the cocoon of my apartment I watched the country struggle, and fail, to contain the outbreak. Was I really sick, or had I grown so accustomed to stress and anxiety that I was the proverbial frog in the pot, unaware of being slowly boiled? Perhaps something about this entirely new situation, a pandemic and sheltering in place, had changed the way anxiety reared its head in my life? Or, I wondered more darkly, could I no longer trust my body to tell me the truth?
***
During this time, I read about a Black woman named Rana Zoe Mungin. The 30-year-old Brooklyn teacher and writer had gone to the ER with a fever and difficulty breathing, had been treated for asthma and a headache, but had been denied a test for COVID-19. Four days later, still struggling to breathe, she headed back to the ER in an ambulance with a paramedic who dismissed her symptoms as a panic attack. The third time she went to the hospital, she was finally tested for the virus—she had it—and was so sick that she needed to be placed on a ventilator. After more than a month on a ventilator, she died of complications from COVID-19 on April 27.
Reading about her death left me enraged. Sadly, it was also clarifying; Mungin and I had experienced different degrees of a long-standing, dangerous, and sometimes deadly predisposition to dismiss women’s symptoms and pain. Even before this pandemic, it was no secret that not all bodies are equal in the eyes of our medical system. Studies have found that women in emergency rooms wait longer for medication for abdominal pain and are more likely to have clinicians suggest that their illness or discomfort has a psychosocial cause—for instance, anxiety.
Not having my symptoms taken seriously had led to weeks of worry; Mungin’s not having hers taken seriously had cost her her life. And one of the reasons her story and mine have different endings is that she was Black and I am white, and racism saturates our country and our healthcare system. Black men and women today live shorter lives than their white peers and are at a higher risk of developing chronic illnesses, injuries, and infections.
Our medical system has long done Black people wrong, from clinicians who ran inhumane or unethical medical experiments on Black people to doctors who tried to justify slavery by perpetuating false beliefs about physical differences between Black and white bodies. These actions continue to have repercussions: Black patients are 22 percent less likely than their white counterparts to have their pain treated—that is to say, their bodies and experiences validated—by medical professionals, likely owing in part to myths about Black people’s higher pain tolerance, which have their roots in slavery and continue to this day. In 2016, approximately 50 percent of medical students and residents believed in false biological differences between Black and white people. Furthermore, those who did were more likely to underestimate the pain of Black patients and make less accurate treatment recommendations.
Mungin was no stranger to racism: She often encountered it in writing workshops and while teaching, and made it fuel for her graceful and powerful prose. But she also encountered it as she fought to save her own life. From the first time she went to the hospital, Mungin was running a fever. She had preexisting medical conditions that put her at greater risk of complications from COVID-19. She lived with her sister, a nurse, further increasing her risk of exposure. This combination of facts offered a warning that wasn’t heeded.
I don’t know if Mungin ever wondered whether her symptoms were panic. Given how hard she fought for herself, I doubt it. Were the clinicians each of us saw in the wrong for asking whether we were anxious? No, that’s part of their job, too. But once we replied in the negative, their investigations should have begun, not ended—especially in the case of Mungin, who had alarming, physical signs of the virus. Finding answers sooner might have saved her life. At the least, it would have said something that every patient who is sick and scared needs to hear: I see you, I believe you, I value you.
Lindsey J. Smith is a freelance journalist and essayist based in San Francisco. She writes primarily about the environment, science, and health.