The Negative Side (Literally) of Covid-19 Testing
The Emotional Impact of False Negatives in a World Sick of Ambiguity
The Emotional Impact of False Negatives in a World Sick of Ambiguity
Photo by Vincent Ghilione on Unsplash
As I write this, I’m experiencing a low-grade fever, dizziness, shortness of breath, tightness in my chest, intermittent tachycardia, and a headache. I’ve been riding waves — an ever-churning miscellany of covid-19 symptoms — for over seven weeks now. Occasionally, the symptoms calm, flatten, and I imagine that I’m well. It doesn’t take much — a light jog, a night of poor sleep — to realize I’m not. The symptoms swell, surge, tossing me to my bed for days at a time. The ebb, flow, and uncertainty are exhausting.
Add this to my uncertainty: I’ve never tested positive for covid-19. In fact, I’ve tested negative — twice. The conditions under which I was tested were far from optimal. For the first test, ten days after the onset of symptoms, I was instructed to swab my own nose to reduce the nurse’s risk of exposure. When the doctor contacted me with the results, he informed me that the test I’d taken had only 60% accuracy — that four in ten patients with covid-19 were ending up with a false negative. “We expected the test to be more accurate than this,” he lamented. Me too.
Twenty-four days after the onset of symptoms, I was tested again, through a different lab. Not because I was unsure as to whether I had covid-19 and not because my doctor expressed any uncertainty, but simply as a matter of course; I was being seen in the ER for covid-19 symptoms. The swab, guided by a doctor’s less squeamish hands, went far deeper into my nasal cavity, but the result was negative again. Perhaps my viral load was too low, given how long I had already been sick. Or perhaps it was a statistical inevitability. Some people are bound to end up with multiple false negatives, after all; experts estimate the average accuracy of covid-19 testing to be around 70%.
The public health implications of false negatives have been discussed in mainstream media. Can we talk for a moment about the private implications, too?
I said that these false negatives add to my uncertainty. They do, but not to my uncertainty about whether or not I have covid-19. Rather, they foment uncertainty about how I will be treated, whether I will be believed.
I hardly believed myself at first. As a woman, distrust of my experience and disowning of my body have been part of my training, my socialization. Besides, the symptoms were mild in the beginning — a sore throat, a cough, burning in my chest, fatigue. And it’s not like I had traveled to Wuhan or anything. As the symptoms became stranger and more severe — shakiness, vision disturbances, tingling limbs, kidney pain — my doubts about whether or not I had covid-19 subsided. Test results had no relevance to what I was experiencing. A negative test result couldn’t make my head stop throbbing, couldn’t boost the readings on my pulse oximeter, couldn’t alleviate the stab of pain with each breath. It couldn’t pull me from bed or give me the strength to care for my children.
All that a false negative result does, it turns out, is make others doubt and devalue your experience. If you are lucky, the doubters and devaluers are people on the periphery of your social circle, not close friends, family, your medical providers, or God forbid, your boss. For the most part, I have been lucky.
I have been lucky but also surprised. Surprised at how seemingly innocent questions like “But I thought your test result was negative?” or “Could it be allergies?” pull with them a flood of painful memories. Memories of a parent who didn’t believe me, of spending my adolescence with a frightening and undiagnosed heart condition. The relief of that badge of approval when Dad finally came around, tests were finally run, an ablation finally performed.
They pull up memories, too, of doctors who haven’t listened. Of days walking around with a kidney infection (my second one in two years) because “back pain is normal during pregnancy” and “you don’t look like you’re in enough pain to have a kidney infection.” Who knew you could feel smug about requiring hospitalization?
There was the baby that I popped out in triage after an hour-and-half of waiting for a delivery room. Apparently, you aren’t supposed to be polite and pleasant during late-stage labor. Screaming and crying are essential to a positive test result. What I was doing — calmly informing the nurse that I needed a doctor and then, minutes later, that the baby was crowning — didn’t fit the expected presentation. That particular false negative ended well — with a nurse shrieking in surprise and catching my healthy baby boy on his way out.
Sometimes the questions — “Have you been retested yet?” or “Could it be anxiety?” — pull up even darker memories. Men and boys who didn’t care that my body belonged to me. Men and boys who didn’t listen when I said no or who never gave me the chance to say anything at all. Questions like “Why didn’t you stop him?” Comments like “I bet she liked it.”
Nobody likes being sick with covid-19. Nobody likes being told that you know more about their body and their experience than they do. If someone you know is suffering from symptoms of the virus and either can’t access testing or tests negative, accept their experience, suspend judgment, or simply believe what they tell you. Denying another’s experience does not protect you from the reality of this virus. Being physically isolated and sick with a serious and frightening illness that we know so little about is lonely enough. Other people’s inexplicable fixation on one’s personal test results can only make it lonelier.
A week and a half ago, I finally connected with a covid-19 support group. It’s been comforting and at times startling to find even my weirdest symptoms and experiences reflected in others’ accounts. One experience has been echoed and bemoaned with the persistence and fire of a viral fever — the experience of being discounted, disbelieved, unsupported all because of some lingering question surrounding the contents of one’s nasal cavity.
I’m writing this for myself, for the thousands of other covid-19 patients who haven’t been tested or have received false negative results, and also for you. Because you, whoever you are, will soon know someone with symptoms of covid-19, if you don’t already. And once you know several such people, it is almost certain that one of them won’t be able to access testing or will receive a false negative test result. What would it be like to just treat them with the same trust and caring that you treat your ‘confirmed positive’ friends?
Remember my dad? Here’s the part of the story that I didn’t mention: that he is a loving father and one of my best friends. A loving father, who occasionally trips over his own stuff, the way we all do. We are all stumbling right now — tripping over fear, grief, lack of information, and the brutal inconvenience of a world turned outside in. Can we own our stumbling blocks, our blind spots? Can we see beyond the swab, can we leave space for the untidy realities of individual experience?