This Is Why The Concept Of Consent Is So Important In Healthcare

Dear Doctor,

I remember the first time I met you. I was lying on a table. My clothes were off with the exception of my underwear, and my body was almost completely exposed. Several pairs of strange eyes were on me. I felt them on every inch of exposed skin. They felt heavy. A pair of hands were on me—your hands—pulling down the only piece of cloth I had protecting me from those eyes. I felt exposed, ashamed, humiliated. Like I was no longer human; like I had been turned into one of the animals behind the glass windows my friends and I looked through during our last trip to the local zoo. I squeezed my eyes tighter and tried to block out the feeling of the strangers you had brought into the room with you staring at me—strangers that didn’t need to be there, that weren’t performing any medically necessary function—and the overwhelming sense of powerlessness that was enveloping me. I tried to make myself invisible, even though I was the focus of everyone in the room. I waited for it to be over. I was 8 years old.

It’s been years—by now you don’t remember me or what brought me to you. Around the age of 8, I began developing white patches on my face. At first they were only around my eyes, but they spread quickly. My mother, noticing them too, took me to her dermatologist, a local doctor she had seen on and off for years. He promptly diagnosed me with a condition called vitiligo, a disease that causes pigment cells, or melanocytes, to die or stop functioning. He gave my mother a referral to a doctor with experience treating the condition in children, saying he would be better equipped to help me. He gave her a referral to you.

We walked into an exam room at a large, well-known teaching hospital a few weeks later—the teaching hospital where you worked. Until this point, I was not a child who was frightened of doctor visits. My mother took me for a physical and a flu shot every year to a small local practice, where I saw the same physician pretty much each time. He was easygoing, approachable, and funny—even at an early age I could see that his priority was the well-being of his patients. I trusted him, and he never broke that trust. I thought that you would be just like him.

I realized early into the first appointment with you that things here were going to be different. When you walked into the room, you didn’t come alone. There were other people with you—people nobody told me would be there—but they weren’t really doing anything. They were just standing there, looking at me. Staring at me sitting there wearing nothing but a paper gown. You spoke with my parents for a bit; I honestly don’t recall what you said. You certainly made no effort to establish any sort of rapport or relationship with me. After you finished speaking with my parents, you turned off the lights, picked up a UV light (to make the white patches more distinguishable from my unaffected skin), and told me to close my eyes (so the light wouldn’t hurt them). The strangers standing behind you made no moves to leave the room. So there I was, lying on a table in a dark room, deprived of my sight, while a man I didn’t know pulled back the paper gown I was wearing and pulled down my underwear and looked at every inch of my naked body while strangers stood over his shoulder—your shoulder—staring.

Someone explained to me after the fact that those people were students, and they were seeing patients with you as part of their schooling. I still didn’t understand. Students? Why did students need to see me without my clothes on? Why didn’t anyone ask me if I minded? Why didn’t you ask me if I minded? Were these students going to be there every time, just staring at my exposed flesh like I was a specimen in a petri dish? How would they feel if someone did this to them? How would you feel if someone did this to you? Wouldn’t you be embarrassed and ashamed, and if so, why did you think I would feel any differently?

We kept going back to you several times a year for roughly five years. You prescribed different creams that were meant to bring color back to the affected parts of my skin—which were multiplying quickly, regardless of what treatment you tried—and I needed to see you regularly so you could assess their progress. Every time we went, there was a new batch of students in the room. Sometimes one, sometimes more, sometimes male, sometimes female, always staring at me with my clothes off. I will never forget the first time one of them photographed me. She was a young woman with a too-wide smile and a high-pitched voice, as well as an enthusiasm for science that overrode any tact or people skills she may have had. She practically pounced on my mother with her announcement that she would like to take pictures, saying how educational it was for them (presumably she meant herself and her fellow students). She rushed out of the room for a camera and was back in a minute, reminding me of myself on Christmas morning when I was about to open a new toy. She aimed a camera at my exposed body and snapped away, without a thought as to whether I was okay with what she was doing or what this experience must be like for me. To this day, I live with the fact that strangers have, and may still be, looking at my naked body in photographs that I did not want taken. That did not need to be taken in order to provide me with healthcare. That were taken solely for the benefit of people who were supposed to be providing me with help, not the other way around. I wondered, did you teach her that this was okay? Would you have wanted that done to you? And if not, why didn’t you teach her better? To ask permission before jumping on a patient like they were an exciting new toy? Is this the way you were taught too?

I dreaded those visits more and more every time. I had to leave school early for them, and I became paranoid my friends would find out what happened when I did. I was ashamed of what was going on, and I didn’t want anyone to find out. If they did, then they would have known my secret. They would have known that I was less than them. I must have been; there must have been something wrong with me, or else why would adults that were supposed to be helping me think it was okay to treat me as if I was less than human? Like I was an exhibit or an object that was there for them to use? I grew up being used as a tool by a system that calls itself “patient-centered.” I spent my formative years being treated like a lab specimen by a physician who was supposed to be helping me, but whose priority seemed to be using me for the benefit of the strangers he kept bringing into the room to look at my naked body. I grew up being used by you.

I started to develop anxiety around my appointments with you. My heart rate started to go up and my chest started to tighten as our car neared the hospital’s parking lot, and by the time we arrived in the waiting room, my fists were clenched tight and I had begun bracing for what was about to happen. By the time we arrived in the exam room and I was told to remove my clothes, I was holding back tears. By the time you and your students arrived, I had begun zoning out. The only way I could get through the appointments was to mentally go somewhere else. To try to dull the sound of your voice and the feel of your hands and the sensation of your students’ eyes on my exposed skin as much as possible, while I imagined being somewhere—anywhere—else. After a while, I stopped looking at you and your students. I was too humiliated. To this day, your face is a blur to me. I have an incredible memory. I meet someone once and remember them in near perfect detail for years, but you, who I saw regularly for five years, are a complete mystery to me. I wonder if that is because of trauma.

It is important to remember that none of this was necessary in order to provide me with healthcare or ensure my well-being. The treatments that you provided me with over the years did not require photographs to be taken or students to be involved. They necessitated periodic examinations, but those could have been conducted privately. Alternatively, you could have asked if I was okay with students being there. Had I felt like I had a choice in the matter, like you and they didn’t see me as a thing you were entitled to use but as a feeling and thinking human being whose help you needed, maybe it wouldn’t have hurt so much. Maybe it wouldn’t have hurt at all.

I stopped seeing you around the age of 14, and I spent a lot of years trying to forget my experiences with you after that. The truth was, I felt dirty. I felt embarrassed. I constantly felt exposed, even when I was fully clothed. And I felt really, really angry. I avoided doctors almost altogether for a long time, because those feelings were—and still are—stronger every time I enter a medical office, let alone allow a doctor to touch or examine me. And honestly, I am scared of them. I am scared that they will do something to me that I don’t want without my consent. I am scared they won’t respect my privacy. I am scared they are going to do what you did, if not worse.

I stumbled through the rest of adolescence and into early adulthood suppressing the memories of my time in that teaching hospital and the feelings associated with them. As long as I did that, I was mostly happy. My white patches spread so much that my skin actually looked even again, albeit very pale, so my body image and self-confidence actually improved. I went away to college and made friends who didn’t know about my skin condition, and I pretended that time never happened. “I’m finally normal”, I told myself. And I believed it. As long as I had left that time behind, as long as I never thought about it and nobody in my new life ever found out about it, I could just be a normal girl with a normal body that nobody could poke, prod, photograph, or study.

But I had—and still have—triggers. If anybody touches me or even enters my bubble without asking permission, I snap. I can’t even walk by a hospital or watch an episode of Grey’s Anatomy without my old anger and shame bubbling up. I feel like I’m hiding a part of myself from my friends, and I’m alternately scared they will find out and sad that I have to keep secrets from the people closest to me. I’ve got a pretty strong inferiority complex, and I have spent a lot of time trying to prove my own humanity and worth to myself and the world around me by racking up academic and professional achievements. And I have anxiety about the future, particularly around marriage and children. If I get pregnant, I’ll likely give birth in a hospital. I’ll have to take my child to doctors. I’ll be exposing both of us to my childhood nightmare. What if I can’t protect us? What if it happens all over again? Even after growing into an educated and professionally accomplished woman, I still haven’t grasped the fundamental concept of consent in healthcare—I’m not sure that I’m allowed to say no, even when it comes to decisions about my own body.

My breaking point came at 27, toward the end of my first semester of graduate school. Most of us, including myself, were working full-time and studying part-time, and there happened to be three doctors in one of my classes. I was uncomfortable all semester sitting and listening to them talk about their work, but I didn’t have a choice, as this was a discussion-based course that relied heavily on the personal experience of its students. During our second to last session, our professor needed two students to roleplay a scenario involving a tense leadership transition within an organization, and I ended up paired with one of them. We had a disagreement, and for whatever reason he dealt with it by comparing me to a difficult patient. Someone else would have probably laughed him off or fired off a witty comeback, but I lost my mind. I couldn’t stand being put in that role—I still can’t. I had internalized the notion that you could be a patient or a person, but not both. You taught me that. And I was determined to never play the role of a patient, of a thing that gets poked and photographed and studied, that has no dignity or humanity, ever again. I ended up leaving the room and spending the rest of class in a corner down the hall, fighting off a panic attack and trying to regain my composure.

In the days, weeks, and months that followed, I spent a lot of time thinking about how close to the surface my anger and embarrassment still are. I realized that I have always, to one extent or the other, viewed myself through someone else’s gaze. I’ve always seen myself from the perspective of you and your students, and as a consequence have always fought to prove otherwise to everyone else. I’ve fought to prove to the world that I am a person, not a patient, not even having realized that I had internalized the notion that one couldn’t be both. To prove that I am an intelligent and accomplished woman, not a lab specimen.

What has always hurt me the most was that you didn’t think—and likely still don’t—that you were doing anything wrong. I would almost have rather that you had some malicious intent, because that would have meant you at least acknowledged my humanity. That you understood me to be a living, breathing person who experienced all of the same emotions and had the same desire for basic dignity that you did. The fact that you utilized me as a teaching tool and allowed your students to utilize me as a learning tool without asking whether it was okay with me or not and without a thought as to what the impact of doing so would be on my feelings in the short-term and my mental and emotional health in the long-term meant that, fundamentally, you saw me as less than you. As a body you were entitled to offer to your students to touch, look at, and do whatever they pleased according to their wants and needs, rather than as a human being with her own wants, feelings, and autonomy.

I have never stopped feeling dirty, ashamed, and embarrassed. I have never felt like my body fully belongs to me. I have never stopped thinking about those photos of my body. And I have never, ever felt more dehumanized or degraded than I did during my time with you.

At 28, I am just now learning to see my body as mine. I am fiercely protective of my physical boundaries and probably take self-advocacy just a little too far. I still feel your students’ eyes on me, but they no longer feel as heavy. I’m still ashamed of what happened but I don’t hide it anymore. I am more than just a body, a tool, a specimen. I am a human being with a spirit, a name, and a right to dignity, and for the first time in two decades, I am finally relearning to see myself as such.

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