“Grab the medical student! There’s a patient with Ehlers-Danlos here!” One of the family medicine attendings yelled with excitement as he rushed into the hallway. A few “wow” and “interesting” comments were made by the residents as I was corralled to the correct room. Not knowing what Ehlers-Danlos meant, I walked into the room unsure what I’d find, and was unexpectedly met by a male my age, seemingly in good health. The encounter began, and the patient started to discuss a cough and swollen tonsils. He had apparently come in for a cold, completely unrelated to the exciting Ehlers-Danlos diagnosis. The physician left the room as a strep test was being performed, and I asked the patient if he could explain Ehlers-Danlos to me, and what it’s like to live with the disease.
“I’m like a specimen to observe,” the patient said to me in a half-hearted laugh. He recited to me how his father and sister are also affected. He showed me the bruises on his legs and the hypermobility in his fingers. The patient had clearly talked through this routine before. When I thanked him for telling me about his condition, he replied: “No problem. I do this all time for medical students, residents, whatever. I know this is rare.”
Reflecting on this visit, I was particularly caught by the way the patient described feeling like a “specimen” when interacting with physicians and physicians-in-training. As a student, I have heard the phrase “patients as teachers” many times, but this was the first time I realized how difficult this notion may be for patients. Discomfort may be further amplified for patients with “rare” medical illnesses, as they are often shown to many students to increase exposure and knowledge for the next generation of physicians. While this practice is incredibly helpful to medical training, and understandably necessary, this may inadvertently cause tension for patients since they must have multiple encounters in which they are defined by their pathology.
In reaction to this visit, as well as to similar visits, I created the sculpture Under the Spotlight, on the cover of this issue. The piece is a mixed-media portrait composed of medical supplies and wire. I used medical supplies to create a human figure signifying this patient’s feelings of being studied as a representation of his pathology. It also addresses how I feel as a medical student, wanting to interact with patients as people but also needing to learn patterns of disease through trained observation. This duality reflects the delicate balance within academic medicine that we must deal with carefully to ensure that our patients don’t feel like the sculpture I have created—composed of medical tools to use and learn from.