For the last several years, I’ve experienced intermittent stabbing pains in my right ear. I don’t remember when they started, but I know they’ve occurred at least as long as I’ve lived in Idaho, which is pushing seven years now. Sometimes the pain wakes me. I grip my ear, on the verge of tears. I tug on it, trying to pop my eustachian tube. I massage my jaw, trying to loosen that a bit. I wait for the pain to subside before I can sleep. It’s awful.
My right ear bothers me during the day sometimes, too. I get a marble-sized, subcutaneous bump between my jaw and my outer ear, but somewhat behind the jaw bone, so it’s not noticeable unless I open my mouth and put your finger on it. The pain seems to center there, but the discomfort is in my middle ear, too. Whenever I have a problem, I go see our school audiologist. She looks in my ear canal, runs a tympanogram to check my middle ear pressure. If I have an ear infection, I can at least bring some preliminary documentation to the doc-in-a-box, and they are duly impressed that I have access to an audiologist at my job.
A few years ago, the pain was worse than it had been and was lasting longer than usual. The school audiologist, amazing as she is at her job, didn’t know what to tell me. I was talking about it at my church one evening, and my pastor asked me a few questions about it. Prior to his life in the church, he had been an ENT surgical first assist in the military. We had talked about ears and audiological jibberjabber many a time, but this was the first time my own ear had been the topic of conversation. He asked if I had a recurring pimple in that area. I did. On or near my tragus, every couple months, usually around the time my ear pain would flare up. He said it sounded like a branchial cleft cyst, something he had excised on many patients, and suggested I see an ENT.
I made an appointment.
I did a little cursory internet research on them leading up to my appointment. If that was, in fact, the problem with my ear, mine was minor compared to some of the gnarly pictures I found online. The majority of cases seemed to occur in the neck. The majority of cases seemed to be pretty sizable. Of course, gnarly pictures are the cornerstone of Google images. Anyway, it seemed feasible that this could be my problem: aggravation of the facial nerve, a pimple that wasn’t a pimple but a cyst, flare-ups when I have upper-respiratory infections.
I never had a chance to tell the doctor any of that.
When I got into his office, I started explaining my ear trouble. He interrupted me and asked me to open my mouth. He felt along my jawline and outer ear area. He asked me a few questions and looked inside my ears, pronouncing them normal. By this time, of course, my flareup had subsided. I tried to explain that. He asked me to open my mouth again and said he was going to put his fingers in my mouth. He did, and pushed up behind my last molars. I nearly shot out of my chair. TMJ, he said.
I tried to explain that I thought it might be more than that. I’ve always believed in advocating for my health and working with my doctors. He interrupted me again with a lesson on ear anatomy, but not really. It was watered down. I work at the deaf school. I’ve taken basic audiology and know the anatomy. You could use more technical language for this conversation. He could, but he didn’t. Then he started talking about the jaw, again with the paternalistic tone. I know what the temporomandibular joint is. My mother worked in the dental field for 30 years and used all the technical jargon around the dinner table. I had braces for eight years to fix my bite, with the idea that we would prevent TMJ dysfunction. Obviously that trick inside my mouth is something. Is it possible I have two things going on here? He laughed at me. Told me to get a night guard. Then I left
I didn’t want to say it’s because he is a man in a field dominated by men. I didn’t want to assume it’s connected to the hints of his southern drawl still lingering after three decades in Idaho. Basically, I didn’t want to believe that he was dismissive and condescending because I am a woman. But in the grand scheme of things, when doctors interrupt their patients, male doctors interrupt more often than female doctors, and female patients are interrupted with greater frequency.
I wish I could say my chiropractor was more respectful. But I can’t. Not really. He wasn’t overtly condescending, at least. He let me finish what I wanted to say and he gave me credit for “listening to my body.” But when I told him the diagnosis, he was equally dismissive. Everyone has a TMJ. Everyone has two of them. That’s really the most ridiculous diagnosis. Next time it flares up come here and I’ll get you all fixed up. Then he adjusted my derby injuries and sent me on my way.
So the ENT was dismissive because he had the credentials and knew better. And my chiropractor was dismissive because my ENT had mainstream credentials, and I should have just known better. And here I sit, literally years later with a chest cold that turned into a head cold and another nasty flare-up of the ear from hell.
Yesterday I rounded up my students and we all went to the audiologist’s office. They’ve all been there countless times for broken earmolds or new batteries or their annual hearing evaluation. This was the first time they were not the subject (hooray for scrambling power dynamics!). I explained my problem. The audiologist has her scope hooked up to a television screen, so everyone got a good look at my very angry tympanic membrane (eardrum) and external auditory meatus (ear canal). We compared it to my very healthy-looking left ear. Then we checked my middle ear pressure: normal. The kids joked about my hairy ears and asked if a spider laid eggs in there. But most importantly (to me, anyway) she took me seriously and modeled an equitable doctor-patient interaction.
So, my ear still hurts, seven years later. And you know what? It could be TMJ. It could be a branchial cleft cyst. And the icing on that whole cake happened when I got the bill from the clinic. I owed far more than my $20 co-pay. I had done my homework, though, not only on my symptoms, but also on my in-network providers. I called my insurance company. Yes, they told me, my provider was in-network. But that diagnosis code was not covered. What? That’s a thing? I’ve heard of treatments not falling under an insurance plan, but a diagnosis?? I didn’t even go to the doctor for my jaw–how was I supposed to plan for an out-of-network diagnosis?! My appointment was covered up until the point he uttered and documented the letters TMJ. After that, my appointment went from $20 to $tupid. With a side of suspected sexism to boot.
And now you’ve just had an earful. Welcome to the club.