“Is there something else going on… outside of all of this?”
This is the question my jaw surgeon tenderly asked me a little over a week ago when I only made it one sentence into explaining why I was there, laying in a well-cushioned hospital chair with six lights shining directly onto my face, before dissolving into sobs. Not crying. Sobs.
“I’m worried about damage,” I said, summing up my concerns into a short phrase that did not describe the magnitude of my sorrow but was not a lie. He did his best to reassure me. We discussed further imaging and medications and surgeries. He was gentle and encouraging. I pulled myself together not because I was no longer upset, but because the very reason that I was dictated how I must act in this scenario.
I am a fairly well-educated person, with a parent who works in the medical field, stable health insurance, and excellent medical resources. I have educational background in public health and the health humanities, and I am reasonably medically literate for an undergraduate. Still, when it comes to the case of my jaw, I cannot help but feel like for years on end I slipped through the medical cracks and gradually became a victim of a sexist healthcare system. Some people are uncomfortable with the use of the word “victim” in situations like these, and I respect that completely. I would never refer to someone as a victim without knowing that that was their preferred term. But please hear this: I am a victim of medical sexism. I hope this word makes you uncomfortable. I hope the brief excerpt of this story that I have published below does as well.
Last January, I saw my New Orleans rheumatologist due to increased joint pain, particularly in my jaw but in other joints as well. I shed a few tears when he asked me to describe my fatigue and physical limitations; after all, Mardi Gras was coming up, and I was keenly aware that I was not going to be able to participate based on all of the health problems and chronic infections I was experiencing. During a brief physical exam that left me feeling more like a piece of meat than I ever have before (and that is saying a lot), he observed inflammation in some of my other joints, but never even examined or measured my jaw. Instead, he barked for a nurse to come in and administer a steroid shot to try to control the flare, and then, without ever saying one word about it or asking a single question, dropped “anxiety” into my EMR and left the room. I was livid. And teary and upset and emotional. If I am too honest about how arthritis affects me and I display any sort of emotion as a result, my symptoms are disregarded or assumed to be psychological in nature. If I am too stoic, my symptoms and their effect on my quality of life are underestimated and I am undertreated as a result. There is no way to win this game. Sometimes it feels as though there is no way to be a woman in a hospital gown and to be believed.
By the time other medical professionals, none of whom are actually responsible for the care of my jaw but who look out for me with all of the expertise and concern in the world, alerted me to the severity of my jaw problems (read this post for more background on how this happened), it was, in some sense, too late. An MRI showed permanent damage. I had a minor procedure in the fall to try to prevent even more damage and to clear out some of the “debris,” which, by the way, is never a word you want to use in reference to your own body. I probably would have been more infuriated by the necessity of surgery had I not been so consumed with an unidentified rheumatologic illness that was destroying my body. Just a few minutes before its scheduled time, the procedure was almost cancelled due to a heart abnormality that had been discovered when I ended up in the ER for chest pain the previous week. Even on jaw surgery day, my jaw was the last thing on my mind.
We were about to start a handbell rehearsal a few weeks ago at my church when I opened my jaw, probably to yawn or to say something, and I realized that it was loud. My mom could clearly hear the joint moving while standing next to me. And it hurt. I slipped off a handbell glove and sent a message to my surgeon while everyone else was organizing their sheet music. I knew just by how it felt and sounded that it was not going to be good. I became furious all over again at my New Orleans rheumatologist. I thought of the almost ten months of active damage that potentially could have been prevented if he had trusted me enough even just to place a hand on the side of my face and ask me to open my mouth. That three-second process was all it took for my more empathic doctors and dentists to realize that I needed to see a surgeon and return to my rheumatologist as soon as possible.
Despite referring to myself as a victim of medical sexism, I still blame myself for several aspects of the damage my jaw has incurred over the years. I could have been more compliant with my medications as a young teenager. At one point an MRI of my jaw was ordered when I complained of discomfort at an appointment, but I chose not to go through with it because it would have required the removal of my dental braces. If I had been informed by my doctors at the time that juvenile arthritis patients often underestimate the damage done to their jaw when attempting to evaluate this damage through pain levels alone, I probably would have gone through with the MRI, despite the inconvenience of having my braces removed and placed back on within the span of just a few hours. But I did not know. And no one told me.
More importantly, I wish I had stuck up for myself more. I wish before surrendering to yet another steroid shot I had walked to the nurses station and demanded a new appointment with a different rheumatologist. I wish I had sent in complaints to the hospital. I wish I had looked that rheumatologist in the eye and said, “I am not leaving until you examine my jaw,” or even “The way you are treating me is inappropriate, and I do not think you would be dismissing a male patient in the same way.” I wish I had asked my primary care doctor to set me up with a new specialist. I wish I had paid more attention to my jaw when I was so focused on tidying up the other crumbly parts of my body. I wish I had been braver and bolder and firmer.
I also wish he had listened. I wish he had taken me seriously. I know what he saw. I was a seventeen-year-old girl who was thirteen hours from home in her freshman year of college. I am not upset that mental illness was a part of his thought process; for any good clinician, it should be. The problem is when assumptions are made based on my age, gender, and presentation that do not reflect my medical reality because it is easier to blame stereotypes than to confront a challenging medical case. The problem is that he was wrong, and had he been a better (or even just more thorough) doctor he would have quickly realized that he was wrong, and I suffered as a result. This is not an isolated case or story. That part hurts too. I wish this experience were rare. I wish that no one could relate. Instead, I feel like a statistic of something that is horrible, inadequately addressed, and frequent.
Recently, I was completing an academic paper in which I focused on variations in syntax between women and men.* I am always hearing messages that are intended to be empowering regarding the ways in which women speak, such as, “Don’t add qualifiers,” or “Be confident in what you say,” or “Be assertive.” These demands attempt to break women out of cycles of uncertainty. Just read this article as an example.
But here’s the thing: I do not want to be more certain. I want men to be more uncertain. I do not want to be asked to change my speech patterns in order to conform to a greater degree of certainty that is supposed to convey authority, expertise, and the overall worthiness of my thoughts and opinions. I want to keep admitting all of the things I do not know, and I want to keep apologizing readily and frequently, and I want people to stop telling me that I should be speaking more assertively. I do not want to have to mirror speech patterns associated with masculinity for my voice to be valued. I want my qualifying statements to be respected and viewed as a means through which to express self-awareness and to invite other ideas into the conversation. I want uncertainty to be celebrated as a tool for growing and learning and collaboration. I want to say, “I don’t know,” and ask, “What do you think?” more than I say, “I am sure.” I want to preface many of my opinions (though not all – there are obviously some things I am certain about) with “It seems,” or “Perhaps” or “Maybe it is possible.” I do not want to have to change in order for men to respect me. I do not want this awful, controlling version of masculinity to be the ideal that women must strive to reach, and I do not want to sacrifice my more feminine speech patterns in order to make myself worthy of being listened to. Why do we never ask men to make their speech more feminine? Why do men get to set this standard for how we should express ourselves?
In doctor’s offices, I find myself constantly monitoring my behavior and language, to figure out if I am coming across as too emotional or suspiciously uncertain about my own pain and body. The reason I dissolved into sobs in a hospital room with one of the most compassionate, intelligent, and trustworthy surgeons I have ever met was because I firmly believe that the damage done to my jaw was avoidable. I believe sexism played a critical role in the dismissal of my symptoms and the lack of proper and prompt imaging and treatment I received. I think that I should have stuck up for myself more. It hurts to think this. Every time I feel pain in my jaw, due to what my surgeon informed me at the appointment is “bone-on-bone” friction, I worry that at least in this part of my body, sexism has won and I have lost. We will never be able to restore my jaw to what it once was. There will likely be more procedures, perhaps even in the next month or so. I will likely shed many more tears over this. I cannot undo the damage that was permitted by sexist physicians practicing within a sexist healthcare system.
What I can do is tell you that if you are uncertain about your own uncertainty, I am with you. If you feel written off by incorrect diagnoses with sexist origins, not dissimilar to the labels of “hysteria” that plagued women before us, I have been there too. If you need someone to tell you how real you are and how valid you are and how brave you can be, I will remind you without any hesitation. If you feel suffocated by the voices of domineering men in white coats who walk through hospitals on endless power trips at your expense, I will demand that you be heard.
*I refer only to women and men in this discussion, because I do not have knowledge about research in this area that extends past the binary. If you have information, articles, literature, or just thoughts in general on this broader topic, please email me!
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