I sat in the exam room, holding my breath as the doctor deliberated before delivering a diagnosis. “Well,” he said, “I don’t think there’s anything wrong with you. Your MRI is normal.” He paused momentarily, managing to give me a sympathetic look. “You’re stressed out by medical school. It’s probably just anxiety.”
But I knew something was wrong. And I knew what anxiety felt like. And the throbbing pain in my knee wasn’t it.
My left knee began to hurt in January of 2023, six months after I started medical school. At first, it was just frustrating. I tried to go on a run one day but had to stop because of the pain. Running was my escape. It was a coping mechanism for me to deal with school. I was not a serious runner, but I loved it. And even taking a few days off—I remember thinking—would be difficult.
The pain, unfortunately, did not subside over the next few days and months. After the initial few weeks, I saw my first orthopedist, who attributed it to a classic case of “runner’s knee.” I got x-rays and an MRI, which came back completely normal. “Just rest, stop running, and you’ll be fine,” the orthopedist said.
But that break gave me no improvement. Walking and standing became difficult too. I stopped walking to school and began taking the bus. In fact, having my left knee bent whatsoever—when sitting, even—was painful. So I tried to keep it straight whenever I could.
This often resulted in awkward situations. I would try to keep it straight under a table but then would inevitably contact other people’s legs. It was most comfortable to put my leg up on a chair next to me, but I often had to choose between prioritizing comfort or abiding by social norms. Once a friend tried to sit down next to me, not realizing my leg was up on the seat, and I asked if she could pull up another chair so I could have my leg up. But I felt embarrassed, especially when I had no explanation for what was wrong. And in many similar situations, I chose not to speak up and to instead sit in discomfort.
No one expects a healthy-appearing twenty-three year old to be immobile. One day on the bus, there were no regular seats left, but I saw an open seat in the area reserved for the elderly and handicapped. Since no one else needed to sit, and my knee was feeling particularly painful, I sat down. But a woman next to me told me those seats were not for “young people like me.” Rather than argue, I smiled and stood up obediently.
Slowly but surely, various aspects of my life began to change. The first things to go were out-of-the-ordinary plans, like the hiking trip out west I was supposed to go on with my new friends from medical school and my friend’s wedding I wouldn’t be able to dance at.
But soon, my day-to-day life shifted too. It started with my wardrobe. I had to wear sneakers to support my knee as much as possible. I thought they did not match with more formal clothing. So, I started wearing athletic clothes every day. My diet changed too. Since I could not exercise and was not moving as much, I began to gain weight. So, I restricted what I was eating, limiting myself in a way that I now recognize was not healthy. It was also easier to spend more time by myself at home, to avoid the stress of getting somewhere. It was mentally isolating but physically necessary.
As the pain persisted, I thought about my knee constantly. Whenever I walked into a room, I strategized how I could position myself to minimize the pain. I often found myself thinking about my mom’s knees and my friends’ knees. I marveled at their painless functioning and crepitus-free gliding. And I felt pangs of jealousy for strangers whom I saw on runs. Do they even recognize the privilege they have? I wondered.
Other times, I felt a sense of disbelief regarding what was happening to me. I had thought of myself as an active person. As someone who would stand so that others could sit. As someone who would volunteer to do the dishes. As someone who appeared put-together. I felt that so many parts of myself were slipping away. My thoughts and memories crystallized into a clear before and after. I found myself recalling mundane moments from before the injury, as if anchoring myself to a random memory could transport me back in time.
After seven months of pain, two ineffectual joint injections, and failed physical therapy, I convinced my second orthopedist to allow me to get another MRI. It took a good amount of advocating for myself. The orthopedist told me he didn’t think it would show anything but reluctantly gave me a script.
The MRI came back with clear abnormalities, which initially brought some vindication. But my relief was short-lived because the findings did not provide a clear path forward. The imaging suggested that the pain was most likely from a severe case of “plica syndrome,” a rare diagnosis. The plica is an extra fold in the membrane of the knee joint, which is an embryological remnant found in 50% of the population. Although usually benign, the plica can become inflamed and thickened due to overuse and can consequently wear away at the cartilage underneath. The treatment of plica syndrome—namely to operate or not—was the subject of controversy in the field. Surgery was an option, but it was not clear it would help. It could do nothing or make things worse. I agonized over the decision, considering the opinions of many doctors who said contradictory things.
Eventually, after eleven months of pain, I felt the risk was worth it. I had not felt fully like myself physically or mentally- since the pain started. And I wanted my life back. But knowing that I could wake up worse after the surgery made the experience fraught with tremendous anxiety.
On the day of surgery, following a sleepless night, the anesthesiology resident put in my IV wrong, eliciting a sharp sensation of pain from my arm. I was embarrassed when tears began to trickle down my face, but once they started, they would not stop. It was not about the IV. It was the culmination of 11 months of pain, the uncertainty of the outcome, and the terrifying cessation of control that surgery necessitated.
I cried myself into the operating room, silent tears falling as I lay down on the table and they stuck my arm with another IV. I have never felt as helpless as I did then. The surgeon placed a comforting hand on my shoulder—a moment of warm human connection that stood in stark contrast to the mechanical whir of machines around me. It was a kind gesture I will not forget.
***
The experience of being in medical school during this episode often helped me keep perspective on my situation. We learned about terminal diseases and met patients with truly life-altering situations. I met patients with spinal cord injuries who were paralyzed from the waist down. I met a patient with fibrodysplasia ossificans progressiva, whose entire body was slowly calcifying into bone, who was decreasingly mobile with every passing day. I met a boy with long QT syndrome, whose heart stopped spontaneously and needed to consistently be shocked back to life, hopefully fast enough.
Classes on the social determinants of health also allowed me to appreciate that my privilege extended beyond the strictly medical. I was lucky to have insurance, access to care, a system of social support, and scientific literacy. My education in medical school constantly reminded me that it could be worse.
Yet at the same time, having a medical condition in medical school, ironically, was not easy. We were supposed to be the providers, not the patients. So, while it was always painful for me to stand in our various obligations, I generally opted to do so. I could have asked to pull up a chair when we stood during ultrasound sessions or on the days when I shadowed physicians, but my sense was that doctors—much less medical students—should not call attention to their needs, especially around “real” patients.
My education in medical school also left me ill-prepared for the experience of being a patient. There were so many aspects of disease I had not considered until I experienced them. The way that chronic pain wears you down. The terrifying uncertainty of potential permanent impairment. The way that illness breeds isolation. This was the stuff that our textbooks didn’t teach. A year ago, if a patient came to me with “knee pain,” I would have thought of it as such and nothing more. I would not have imagined that a relatively small medical issue could have spiraling effects, slowly chipping away at someone’s identity, until it feels like the problem is the only thing left.
As I write this, I am on week five post-op. I still am having significant pain in my knee, and it is unclear whether the surgery fixed the problem. In a month, I am supposed to begin my clinical rotations, when I will begin providing care for patients. I am not sure in what capacity I will be able to do, should the pain persist. But I am sure that once I do encounter patients, I will empathize with them on another level. And I hope to use my experience to advocate for patients, to honor their description of pain, to understand the pervasive effects of illness, and to ultimately better their lives.
Ayelet Rubenstein is an MS2 at the Perelman School of Medicine.
