In early March, a friend from New York City visited me in New Orleans. Over the course of a long weekend, we went out for dinner twice, hit some bars, and I had him over to my house for drinks. Four days after I gave him a big hug goodbye and sent him off, I got a troubling text message. He was back home in New York, he explained, and had started running a fever. He went to his doctor and was given a test for COVID-19. Twenty-four hours later, he texted again to say the results were in. The test was positive.
The very moment my friend’s text came in, I stopped rationalizing my mild symptoms—I guess I wasn’t unusually winded riding my bike because I’d eaten and drank too much over Mardi Gras, as I’d told myself—and sought out a test. I called a local urgent care that had just been designated an all-COVID facility and told them I had hosted a confirmed COVID-19 patient in my house and was having symptoms. They told me to come in for a test.
New Orleans still looked normal that Friday the 13th, but the urgent care already did not. The parking lot was uncharacteristically filled to capacity, and I had to park around the corner on a side street. As a designated COVID-19 response center, the urgent care was packed with patients with all manner of respiratory illnesses—some with conventional pneumonia and the flu, and others with the novel coronavirus. The waiting room was so packed that patients were unable to sit every other seat for their protection. As patients coughed through the masks they’d provided, I figured if I didn’t have the famously infectious coronavirus yet, I surely would by the end of my time at the urgent care.
At intake, the nurse asked my age—42—and whether I’d experienced any of roughly a dozen symptoms. There were of course the Big Three—fever, cough, and difficulty breathing. Of those, I’d only definitely experienced difficulty breathing. Walking up one flight of stairs felt like two or three. Earlier in the week, I’d also woken up with night sweats and chills—signs of fever—but couldn’t find my thermometer to know for sure. I didn’t have a cough at all. As a childhood asthma sufferer, I was keenly aware that my breathing had gotten worse but not in the usual asthmatic way that feels “wet,” with lots of phlegm. This was totally dry. The nurse also asked about pinkeye, which I had indeed developed that week—and again, not in the usual goopy “wet” eye crust–y way but in a dry scratchy viral version. Then she asked about “lack of appetite.” Once she said it, I realized I had been experiencing the most severe lack of appetite of my entire life. I had lost interest in eating as well as cooking, two of my passions. I chalked it up to stress, first from work and then from the impending pandemic. Never had it occurred to me that this could be caused by a virus. (Research on COVID-19 symptoms is complicated and changing rapidly, but the Centers for Disease Control and Prevention recently added several symptoms to the main three.)
In the end, my trip to the urgent care proved fruitless. Because I didn’t have a high enough temperature on-site, I was denied a test, despite having hosted a confirmed patient in my home and having symptoms of the novel coronavirus. The manager of the urgent care, who came to my examination room accompanied by a gun-toting armed guard, told me to act like I had the flu—coughing into my armpit, staying home from work—even though her staff had just tested me for flu and it had come back negative. The manager assured me there was little to worry about, that the coronavirus was nothing but, in her words, “mass hysteria.” Then she sent me on my way. Instead of getting a test, I had spent two hours in a waiting room being exposed to COVID-19 patients and gotten a lecture full of talking points I could have watched from the safety of my own couch on Fox News.
Following best practices as well as I could glean them from reading up on the pandemic and texting with friends and colleagues who had gone through it in China, I decided to self-quarantine for 14 days and contact people I had seen in the previous week. I texted my barber and a friend I’d had a beer with at a bar, and emailed the hosts of a theater talk-back panel I’d attended with an audience of about two dozen people, many of them elderly. But all I could tell them was that I had been exposed to the virus, experienced some symptoms, and was unable to get a test. As for what exactly they should do with this information, I was at a loss. Behave normally? Self-quarantine? It was unclear. The talk-back venue sent out an email to everyone who attended informing them that they may have been exposed.
A few days later, I woke up to a text from a friend who works as a doctor in a local emergency room telling me that a drive-thru testing site had opened up in the suburbs of New Orleans, and I should try to get a test there “while supplies last.” I called the hospital’s COVID-19 hotline dozens of times that morning and finally got through to a nurse. Like the intake nurse at the urgent care, she rattled off a dozen or so symptoms that could be related to COVID-19. In addition to the Big Three and several others, she asked about “loss of arousal.” As with the urgent care nurse who had asked about my appetite, the minute this nurse mentioned arousal, I realized I had experienced that as well. As a generally healthy 42-year-old male, I wake up consistently with what urologists call nocturnal penile tumescence, or NPT—better known as morning wood. When she flagged it for me, I realized that my usual morning wood had gone MIA for a full week. Since I hadn’t read about this being a symptom, I later confirmed with an expert, Dr. Amin Herati, the director of men’s health at the James Buchanan Brady Urological Institute at the Johns Hopkins School of Medicine, that this really could be a COVID-19 symptom. “There’s a really interesting dynamic with testosterone and illness,” he told me. Illness depresses testosterone levels, which in turn lessens arousal, including the weakening or disappearance of NPT. In concert with other more COVID-specific symptoms, Herati said, loss of NPT could be a sign of coronavirus infection.
Even with my myriad symptoms and confirmed exposure, the nurse thought my chance of getting a test at the drive-thru without manifesting a fever on-site was low. The previous day, she told me, more than 200 vehicles had shown up at the drive-thru testing site, and only 14 people had been given a test—a rejection rate of more than 90 percent. Still, she suggested I might as well do a telehealth exam with a hospital doctor over Zoom. Figuring I had nothing to lose, I went ahead with it. The doctor for my virtual visit assured me that with my confirmed exposure and symptoms, I would be given a test. When I told her that I had gone to the urgent care with the same guarantee only to be denied a test, she texted the medical director of the entire hospital and got confirmation. With an emailed letter from her in hand promising a test, I got into the car.
After a two-hour wait at the drive-thru clinic, I was given a test that afternoon. The doctor who swabbed me said results would take anywhere from two to seven days. But I was concerned that the doctor had not gone deep enough into my nose with the swab. Having already taken two flu tests—one at the urgent care and one in the drive-thru line right before the COVID test—I had become a bit of a connoisseur of swab technique. One seemed very deep, one medium deep, and this one just barely in the nostril. More worrisome, since I was already feeling better, I figured my body may have already killed off the virus, so it might no longer be present to trigger a positive test result. Early evidence suggests that the longer the delays in getting tested, the more likely the virus is to have moved into the lungs and no longer be present in the nasal cavity where the swab goes looking for it.
Days 2 through 7 came and went with no results. Finally on Day 9 (of 7) the test came back: negative.
Confused, I circled back to every doctor I had talked to about my symptoms. Because my primary care physician had been so overwhelmed with more critically ill patients as the outbreak overran New Orleans, we weren’t able to connect by phone or in person. But friends and family who were doctors were always eager to stay posted on my symptoms and progress. To my surprise, with confirmed exposure and the telltale respiratory symptoms, none of them would budge on their positive diagnoses just because of this negative test result. “Testing is missing a number of cases,” my emergency room doctor friend told me. “If someone has COVID-19 symptoms, and not strep throat or the flu, they have corona.” Two others agreed that “clinically,” I had it.
Still, with my results finally in fully three weeks after my exposure to the virus, I circled back to my contacts. The theater that had hosted the talk-back sent out a new email beginning “I am happy to report that the attendee who came into contact with COVID-19 has tested NEGATIVE. This is wonderful news.” The email did not mention that none of my doctors had changed their diagnosis from positive to negative on the basis of the test though I did inform the event organizers.
As the days went on, news reports on false negatives began to appear. The day after my results came back, a local newspaper ran a story about New Orleans’s most terrifying death of the outbreak: a 39-year-old woman who began having respiratory symptoms, took a test, and then collapsed dead in her kitchen before the test came back. Her results later turned up negative as did a subsequent test of her body. A Yale medical school professor, writing in the New York Times, cited a study from China that suggested about 30 percent of the tests come back as false negatives. And the Wall Street Journal reported that in the rush to get tests available, the Food and Drug Administration “relax[ed] requirements for labs to prove their tests actually work.”
Last month, I tried to get into a clinical trial for an antibody test run by Stanford University that was collecting samples from outbreak-stricken New Orleans. But I was told the study excludes anyone who has tested negative—even though the intake staffer said she too thought I was a false negative.
I then volunteered to donate blood to the Red Cross, which is seeking antibody-rich plasma to help COVID-19 patients fighting the disease in the hospital. But donating requires a positive test result, so I’m excluded. The Red Cross explained to me in a form email that soon it will have its own test to screen potential donors, but not yet.
Just this week, I messaged my primary care doctor to see if he could order an antibody test, which are becoming more widely available. He wrote back that he still had no access to them but to check back next week.
Even once I get an antibody test, the results might not be bankable. The same type of hurried FDA process that made the swab tests unreliable was used to rush blood tests to market. The tests are promising for research, but they may not be especially meaningful for individuals.
One day there will be a reliable test that I can take that will resolve my uncertainty. But it could still be many months away. For now, I do my best to suppress any assumptions that I already had COVID-19 and am likely immune. When I’m in public around other people, I wear a mask and convince myself that even if I can no longer catch or spread the virus, modeling good behavior is a good in itself.
But my lingering uncertainty is bigger than me. It’s a problem for us all. The testing fiasco, with its delays and false negatives, has made it impossible to trace contacts and isolate in America the way it’s being done in places with better responses, like South Korea. The effects of that uncertainty—only getting a definitive answer about whether my barber, my friend, and the audience at the theater panel were exposed, at best, nine weeks after the fact—are irreparable. For the elderly audience members, getting the email about my test results even three weeks later was already irrelevant to their health and behavior. By now, a chain of infection I may have started could have infected thousands, but we just don’t know. This mass uncertainty is central to our worst-in-the-world outbreak. It is why the U.S. and South Korea discovered their first cases on the very same day—but more than 275 times as many Americans have since died of COVID-19.