When A Sweatshirt Is Armor
Five weeks after I had a total knee replacement, I was walking 2 miles every day and had obtained 124 degrees of flexion. And after dealing with the after-effects from an undertreated tibial plateau fracture as a child, I was obnoxiously happy with my new found mobility. I even made a video of myself tap dancing and posted it on every possible social media outlet.
Seven weeks after I had a total knee replacement, I was in the emergency room with a deep stabbing relentless pain that left me unable to move, a knee so swollen I had to flex my quadriceps in order to demonstrate where my kneecap was, and a group of providers who couldn't decide if I had anything interesting or relevant to say about this unpleasant development.
This wasn't a situation that developed overnight; I had called my orthopedic surgeon ten days back when I started to have increased pain. His PA returned my call and explained — in a voice dripping with patience — "knee replacements hurt." My face reddened with two parts embarrassment and one part frustration, and I reluctantly hung up the phone.
I could kick myself now (well, I could if my knee worked better) for not pushing the PA more. As a registered nurse with 20 years of clinical experience, I knew that post-surgical pain should generally decrease, not increase, over time. But I was raised in the kind of large stoic Germanic farm family where it's entirely possible that a child's tibial plateau fracture might go unaddressed. When my dad first heard my oldest sibling playing the younger kids Rosey Grier's "It's Alright to Cry" album borrowed from the library, he even stopped and instructed us: "No one's getting any ideas around here, right?" We weren't. My parents were heroic in many ways, but they had a zero-tolerance policy for complaining.
With that backdrop, I hadn't learned the importance of reading my body's cues and, thus, wasn't very good at recognizing them. So I even took the word of the PA at a routine follow-up a few days later when she decided that I had "just a little superficial cellulitis." She made this diagnosis without blood work or obtaining fluid from my knee.
By the weekend, my lack of confidence in my body's communication tactics and provider guilt about being a high maintenance patient were overpowered by the fact that I could no longer extend my knee enough to walk. I left a message with my surgeon's answering service and went to the ER.
Once I was there and triaged, the first two providers to pull back the curtain and chat with me were both residents. Resident #1 came in while I was still mostly dressed with my ball cap advertising an energy drink and my tattered dark blue sweatshirt. He clearly hadn't looked at my chart, which would have shown that I was assigned female at birth, but between my hoodie camouflaging my size DD chest and my close-trimmed hair under my hat, he had so confidently concluded my gender was male that he began the conversation with a friendly but concerned bro-like "Hey man, what's going on." I didn't correct him. I identify as genderqueer, and in short-term situations, I normally let folks choose a gender for me that feels most comfortable to them — it shortens annoying conversations. Dr. Bro-Friend listened closely while I described my symptoms, didn't try to multi-task with his phone while we conversed, and asked before he touched me. In other words, he took my pain seriously.
When he left, I changed into a hospital gown and took off my ball cap. Resident #2 came in. He interrupted me twice in my first three sentences. He took a call in the middle of our interaction. He repeated the sage advice, "Well knee replacements just hurt, that's just normal." When examining my red, swollen, painful knee, Resident #1 had asked "Can I…"as he reached towards me; this is a subtle but important technique for obtaining patient consent that I learned in nursing school and one that, I imagine, he was also taught in his physician training. But Resident #2 didn't ask before he touched — even cursorily — and in fact began the exam while I was answering a question. His intrusion didn't even save him time; the combined impact of pain and surprise made me stop mid-sentence to collect myself. Throughout the visit he shrugged a lot. And — perhaps you have already guessed this — he called me Ma'am.
When he exited the room, I looked over at my friend whose angry face was almost as red as my knee. "What the hell–"
But we didn't have a chance to talk before the next person was headed in. My friend whispered, "Pretend you're using a truck stop restroom in rural Alabama."
I blinked at my friend, wondering for a brief moment if she was more sleep-deprived than me. But she continued to look straight ahead and whispered, "Just do it. Man."
Finally understanding, I pulled the blanket up so it covered my chest. Then I reached over and put on my ball cap. A ball cap and a hospital gown is not a fashionable look, but fashion wasn't my goal. Once they had started the IV, I even put on my baggy sweatshirt, covering myself everywhere but my IVed arm. I also shortened my sentences and smiled a bit less. As providers wove their way in and out, I was sometimes able to wear my ball cap and sweatshirt throughout the encounter and our interactions were much like I had with Resident #1. When I had to remove my social gender cues (or as my nephew calls them "Dude-ifications") the interactions were like those I had with Resident #2. It was more subtle with some folks than others, but it was consistent throughout the first two hours of my ER visit.
At first, I and my gang of queer friends thought this was transphobia; that is, providers behaved more positively towards me when I had on my sweatshirt because I fit more clearly in the M or F box. But by this time everyone was looking at my chart, using female pronouns and calling me "Ma'am." No one but the first resident ever thought I was a guy (cis or otherwise). Despite this, when I was wearing the sweatshirt and appeared more male, I was considered what providers call "a good historian," meaning the description I gave of my own experiences was presumed to be accurate. Without the sweatshirt (when I looked more female) my words and experiences needed back-up. My sister (also an RN) observed it this way, "Oooooh so you don't even have to be a dude to have your pain taken seriously. Looking like a dude is enough."
Huh. So misogyny masquerading as transphobia then? Sometimes it's hard to keep up.
After two hours, the results of my lab tests and blood work were back. Resident #2 had the humility to be sheepish when he told me I had a "raging infection." I handed my ball cap and sweatshirt to my friend as the staff prepared me for emergency surgery. Now that we had some objective evidence of the reason for my pain, I hoped to need my dude accouterments less.
I realize that it would be a mistake to generalize or assume causation from my two-hour anecdotal experience but — at least partly as a result of my delayed treatment — I'm one of the 2 percent of all patients who experience chronic infection related problems after a knee replacement. In the subsequent four years, I've had three more surgeries and logged more than 45 inpatient days. And even when I'm known to the provider and the medical staff sees the "F" on my bracelet and my chart, a more male presentation seems to positively correlate with providers simply paying attention to what I say about my own body, especially my experience of pain.
I would have preferred to sidestep the long-term damage. But enduring the days spent believing a health care provider instead of my own body when I knew something was wrong has had the happy impact of greatly increasing my confidence in my body's cues. The whole experience has also been a very serious reminder to examine in my own practice where my implicit bias might be impacting my ability to listen and care for my patients' pain.
It's pretty ridiculous that the key to having pain adequately addressed is these dude-ification measures. But I believe in the harm reduction approach to medical self-advocacy, and since my identity and appearance makes it possible for me to temporarily embrace the rigid gender binary in exchange for the privilege that comes with simply appearing male, I grab onto this opportunity with both hands. So if you see me with a fresh new short haircut, ridiculously oversized sweatshirt and a baseball cap that would look at home on a frat dude's head, you might think I'm on my way to a date or a barbecue or a practice for the Middle-Aged All-Genderqueer Softball League. And any of those are theoretically possible. But it's more likely that I'm headed to a healthcare appointment, and I'm wearing the uniform of the team that has its pain taken seriously.