As a college freshman in 2012, my life seemed perfect. I was attending Rhodes College in Memphis, TN, with the dream of becoming a pediatric oncologist. To that end, I was serving as a volunteer, researcher, and clinical intern at the world-renowned St. Jude Children’s Research Hospital. I was thriving in my classes and building incredible relationships with my peers and professors. I had never been happier.
Everything changed when I grew ill in early 2013. At first, it seemed like a minor infection: a sore throat and swollen lymph nodes that kept coming and going. By the summer, however, I had become a mere shell of my former self. I was exhausted, frequently sleeping 20 hours per day to no avail. I was confused almost constantly; I could not read nor comprehend most words, didn’t understand what a red light meant while driving and forgot how to make a meal as simple as cereal. I was losing my balance, falling as I walked through the halls. I started to experience stiffness down my left side, then partial paralysis.
No one knew it at the time, but the seemingly trivial virus from months earlier had traveled to my brain and caused swelling, known as encephalitis. And beyond my wildest imagination, it would be chronic: I would come to suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which would leave me with periods of fatigue, confusion, and weakness for years. Eventually, I would learn that 25% of people with a story similar to mine are entirely bedbound, and another 50% are able to work only part-time. The hand we were dealt was horrible, but from that terrible draw, I am one of the “lucky ones.”
During the formative periods of my illness, however, I was too sick to realize that I was sick. It was only after many months of excruciating delirium that a caring professor noticed something was wrong and pushed me to seek medical help. In my cognitively aware moments, I was hopeful that a physician would know what was wrong and give me a simple pill that could return me to my former, non-sick self. I was stunned when instead, the doctor said just a few minutes after meeting me, “Well, college is hard, and maybe it’s not for you. We need to deal with this mood issue.” I was devastated. Somehow, my physician had internalized my illness to his perception of my faults: I was not smart enough for college, I was not strong enough to handle the stress, and changing my mood or attitude would somehow cure me as opposed to running even one medical test.
Shortly after arriving to medical school, I found myself on the other side of the hospital bed as part of the team listening to patients with stories like mine. Unfortunately, I was frequently discouraged by what I saw. In my first year, for example, the other students and I were assigned to interview a patient whose main complaint was fatigue. This patient described how he had lost the ability to participate in the things he once enjoyed and how he could barely think straight. My heart broke as I listened to his story, knowing the indescribable pain that accompanies the loss of such core components of one’s identity. Yet as I left the room, I heard some of the students say, “I had no idea what to do … there was nothing wrong with that guy.”
At first, I was angry. I knew how shattered I felt when my doctor said nearly the same thing to me. It was hard for me to understand how, as early as our first semester of training, it had become natural for students to deny the existence of the problem when there was a concern that couldn’t be measured, seen, or immediately fixed. As I reflected more deeply, however, I realized that the issue was not a lack of compassion. It was a lack of training.
Before this encounter, we were taught a widely-used mnemonic to interview patients and ascertain the medical issue: OLDCARTS. Origin, location, duration, character, associations/alleviations, radiation, timing, and severity. “Where does it hurt? When did it start? How bad is the pain, on a scale from 1 to 10?” This works great for something like chest pain, where there is a clear onset and physical manifestation of the condition. Yet not every illness works this way, and no one had even mentioned that possibility to us. As a result, future physicians with less than a year of training jumped to the conclusion that if an illness does not fit these criteria, it simply does not exist. And by neglecting to prepare us for the possibility that OLDCARTS may fail and present us with alternative question schemes, medical institutions are silently conveying the message that these types of beliefs are OK.
On some occasions, I have also found myself nearly falling into this trap. I have listened to a patient describe her symptoms related to congestive heart failure, and as some of these did not align with descriptions in our lectures or textbooks, I began to doubt the patient’s recollections and motives. The only thing that transformed my encounter was my lived experience. I had been on the other side of that bed, desperately trying to explain something that didn’t make sense based on lab values or physical examination findings. I understood this patient’s struggle not because I was a better student or doctor than my peers at this stage, but because I innately understood the words and plight of invisible, complex illness better.
This, too, underscores the need for more doctors who have experienced disability or chronic illness. We are often overlooked, but we are an asset to a field that struggles with diversity and inclusion. I will certainly have limitations; fortunately, I never wanted to be a surgeon even before I grew sick, but I know that the periods of weakness down my left side would prevent me from excelling in long days of standing in the operating room. But I – and many future doctors like me – will understand my patients in ways that others cannot. I will fight endlessly for them because I have known the isolation and despair that result from being disbelieved by the person whom you trusted to help. I will have considered every aspect of my patients’ health, knowing all too well the physical, emotional and mental toll that illness takes.
Ultimately, we all have our strengths and weaknesses. The best thing we can do as physicians (and perhaps simply as human beings) is to be intimately aware of them. From there, we can skillfully craft our everyday practice to maximize our strengths and find resources to compensate for our weaknesses. And, contrary to common belief, I would argue that illness forces you to do this. I am not the person I was before I became sick. I am acutely aware of the skills I have lost. Yet I am also in awe of the beautiful traits I have come to develop and the incredible strength I can derive from places I never knew existed before my illness. The profile of my strengths and weaknesses is different — but just as expansive and just as wonderful — as that of my peers. Too often do we see chronic illness and disability as only a disadvantage when truthfully, they can benefit the medical community in ways that fill many of our current gaps.
Emily Hayward is a medical student.
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