I learned from a very young age that it is possible to be several things at once.
My mother, a strong and jovial woman at all costs, spent much of my childhood battling a heart condition that repeatedly landed her in the emergency room. She taught me that sometimes you are born with a condition and that you must handle all associated crises as they come, and then trudge forward with what is next. My father, a loving and hardworking man who struggled with alcohol abuse my entire life, taught me how to love those who carry demons with them because it is possible to be both a wonderful person and someone who is trapped by addiction. I, like so many others, live with a relatively silent disease. I have learned to effectively manage my disease in a way that convinces people there is absolutely nothing wrong with me. Prior to the COVID-19 pandemic, I did this with relative ease. It is within this pandemic that I have been forced to live three distinctly different lives in unity, a skill I never anticipated having to acquire.
I was born a twin, the older of two small but healthy girls. Although I was older by a mere ten minutes, I was the smaller twin and always tended to be the sick one. I was happy and active, but my years were filled with consistent infections. The first sign that something might be chronically amiss came when I was six years old. Following a respiratory infection, I developed a condition called Henoch-Schoenlein purpura, a disease that causes severe inflammation in the small vessels of the body, which leak blood into the skin, joints, intestines, and kidneys. I remember screaming and writhing in pain, unable to walk due to the inflammation in my joints. My skin was covered in dark purple splotches—the first physical manifestation that my body was prone to fighting itself.
When I was eighteen, my father was diagnosed with Multiple Sclerosis, a devastating addition to his existing myriad of health issues. I spent my freshman year taking a full course load, working full time on the night shift at a reference laboratory, and helping take care of my father. When I began noticing symptoms like crippling fatigue and joint pain, I wrote it off as nothing more than exhaustion and stress from my hectic lifestyle. When it got worse, I finally paid a visit to my physician. After years of various diagnoses and multiple treatments for conditions like Lupus and Rheumatoid Arthritis, I was declared to have an inflammatory condition without a name. I learned to become precisely aware of my body’s needs and triggers. It was too difficult to explain to people that I had a disease in which my body fights itself daily, so I just didn’t explain. In a society where fatigue and chronic pain are most often recognized as excuses for lack of effort, it was easier to suffer in silence.
It was too difficult to explain to people that I had a disease in which my body fights itself daily, so I just didn’t explain. In a society where fatigue and chronic pain are most often recognized as excuses for lack of effort, it was easier to suffer in silence.
It only took seven years for Multiple Sclerosis to kill my father. Weakened by his existing disease, he succumbed to pneumonia after acquiring a respiratory viral infection. He died unexpectedly overnight, swimming in delirium and calling for his mother. Losing him at only 51 years of age in such a horrible way crushed my very being. I could not help but think that I was just like him, my fate predetermined by a disease I did not fully understand. I refused to be anything other than my perception of normal, and I dove deeper into my work and studies, pushing myself to the brink. Not long after his death, I found myself in the emergency room, a visit that would turn into a six-day admission for a blood infection caused by Campylobacter. I am lucky to be alive, and the misery of being helpless in the intensive care unit of a hospital has been impressed upon me forever. Every day that I am alive takes work. I take measures to ensure that the stress of my busy life does not overtake me and cause an inflammatory flare-up that might send me to the hospital. I pay attention to every little change in my body. I wear a CPAP (Continuous Positive Airway Pressure) machine to help me breathe at night, and I watch closely for any sign of an infection that may turn into something more systemic that could kill me.
One small caveat exists: I am a microbiologist who deals with infectious material for a living.
I have loved science for as long as I can remember. I read The Hot Zone when I was in fifth grade and knew that my life would somehow be dedicated to the study of infectious diseases. I have spent the last thirteen years fine-tuning my skills, first through advanced certification in microbiology and years working in the clinical lab, to a master’s degree in public health, to the eventual pursuit of a Ph.D. Handling live infectious pathogens has always been both exhilarating and meaningful, and I love that I take part in every patient’s diagnosis and treatment. In the lab, I am protected by various safeguards, from gloves and a lab coat to biological safety cabinets and masks, and the risk of infection is low if proper precautions are taken.
In a country where healthcare is unaffordable, there is no unified national plan to combat this virus, and social inequities drive the disproportionate rate of cases and deaths among minorities, my heart aches.
As a member of the public and as someone with an underlying disease, I no longer feel safe. Sometimes I find myself talking about my fears out loud with friends or acquaintances, only to be met with loving disregard; I am a healthy and energetic young woman, I don’t need to worry, I will be just fine. In a country where healthcare is unaffordable, there is no unified national plan to combat this virus, and social inequities drive the disproportionate rate of cases and deaths among minorities, my heart aches. I am baffled by our ability to lament for one loss of life but casually dismiss 200,000 others.
As a clinical microbiologist, I have seen this virus completely overwhelm laboratories and expose shortcomings we did not even know we had. In many places, staffing is insufficient, a result of years of undermining a field that is crucial to healthcare. Samples come into the lab faster than can be physically handled, a race one feels they can never win. The number of tests that can be processed and completed by a laboratory depends on laboratory size, number and types of testing platforms, and staffing. Hospital laboratories may only have the capacity to test 500-1,000 samples a day, while some private labs may be able to test 35,000 or more. Supplies are exhausted, not only for Sars-CoV-2 testing but for various other microbiological tests as well. Working a shift in the clinical microbiology laboratory during the COVID-19 pandemic is an exhausting, frustrating, and saddening event. The weight of the world has now fallen on the shoulders of clinical laboratory scientists, the same professionals that have been seemingly invisible to the outside world for many years. At times, all feels hopeless.
I often find myself feeling equally lost as an academic. As a member of a COVID-19 scientific committee, it is my job to pore over the diagnostics literature and try to make sense of it all. Yet with scientists arguing over transmission and appropriate testing methodology daily, and otherwise trustworthy scientific agencies continuously changing COVID-19 guidance based on politics, things have never felt more divided. The mixed and sometimes questionable quality of COVID-19 research has put my critical appraisal skills to the ultimate test, specifically with the rapid release of preprint articles that are timely but are not subject to peer-review at the time of release. I feel constant pressure to keep up with the literature, sometimes to the tune of hundreds of new articles per day. As is true for so many other scientists and clinicians, COVID-19 is not my primary work. It is an addition to the large stack of problems I am already trying to solve. This is where my three lives converge; balancing a full-time Ph.D. workload with my newly found academic role as it relates to COVID-19, clinical work at the hospital laboratory, and being a member of the public who also happens to have a compromising condition. How do I do all these things well and keep myself healthy?
Just like my father, I am a living, breathing example that the world does not exist in black and white. Things occur in varying shades of gray.
For me, the answer is to follow the science and take one day at a time. Just like my father, I am a living, breathing example that the world does not exist in black and white. Things occur in varying shades of gray. An individual can be a front-line worker and have an underlying condition that makes them more susceptible to poor outcomes because of COVID-19. An individual can be immersed in the science and feel still confused about what the best steps are. A victim of COVID-19 can have underlying conditions and still be actively involved in their health. Humans are complex. It is our responsibility to have enough respect for our neighbors that we slow the spread of this disease as much as possible. Being conscientious and responsible helps relieve the burden and risk to front-line workers, protects the vulnerable, and gives scientists some time to figure out what to do next. All three versions of me will thank you for it.