When the doctor walked in and immediately asked me about my prostate during an appointment I'd made about an issue entirely unrelated to my gender, I knew things weren’t going to go well.
“I don’t have any reproductive organs,” I answered.
He fumbled with his clipboard. “Oh.”
We tried to recover a neutral mood in the room, but the visit remained tense and awkward. I couldn’t feel fully comfortable with him.
Trans patients face polar struggles in seeking medical treatment: We need doctors to diagnose us with gender dysphoria in order to receive trans-related treatments that align us with who we are, while general practitioners express total ignorance of our basic health needs and mishandle our gender identities and bodies instead. Close medical scrutiny, which is supremely important in making effective individualized care possible, is still taxing, complex, and draining to navigate.
I am a trans boy with chronic back and neck pain that has worsened over time. After my ability to drive to and stand at work deteriorated, I left my apartment, friends, and job to move across the country so my mom could help with my care as I sought a diagnosis. With so much lost and even more at stake, it was especially frustrating when doctors focused on the fact that I'm trans instead of my symptoms—like in the visit where I had to explain my lack of reproductive organs.
By the time I turned to the healthcare abyss in search of answers, I was a veteran of the system, having undergone hormone replacement therapy and two surgeries over the prior four years. Navigating my medical transition was exhausting, expensive, and complicated, but the surgeons, therapists, and physicians I saw specialized in trans-related treatment. They gave me the naïve belief that, with decent insurance, emotional support, and the willingness to complete a thousand forms, I could receive adequate care.
But needing non-trans-related care meant dealing with doctors who had little to no experience treating trans patients, who often conflated my gender with my wider health. Over the span of two years, many medical professionals immediately questioned if my gender-confirming surgeries were responsible for my pain. One doctor read my chart and cross-examined me about my genetic material. “So, if we were to test your DNA and chromosomes, you’d actually be a woman?” she interrogated. A rheumatologist asked me if I believed in God, which apparently would give me the strength I needed to—I don’t know—survive this appointment? I was sometimes asked when I first “felt” I was trans, and whether I was considering further surgeries.
After ruling out these concerns, providers brushed me off with a painkiller prescription and the recommendation to see a psychiatrist. I did, and she helped me understand and handle the toxic cycle of pain and stress familiar to many chronically ill folks. But my pain never went away. I wondered if doctors’ suggestions for me to “see a psychiatrist” were informed not only by my symptoms or behavior, but by my previous medical record of gender-related therapy.
I underwent countless appointments, misdiagnoses, and stressful tests in search of a cause: MRIs, CT scans, X-Rays, corticosteroid shots, antibiotics, four rounds of physical therapy. Nearly a year after the onset of my pain, I remarked to one physician’s assistant that doctors didn’t seem to believe I had a legitimate health problem and asked inappropriate questions about my gender. The PA told me straight out, firmly but sympathetically: “You’re young, transgender, and have a mental health diagnosis," he said, referring to the gender dysphoria diagnosis I'd needed in order to transition. "Most doctors will think you just want drugs or have psychological problems.”
His candor was shocking. Throughout six years of working with doctors during my transition, I jumped through hoops to prove my mental stability in order to access the gender-confirming procedures I needed. Yet, regarding my chronic pain, the body I'd worked so hard to align with was used against me—evidence that I was prone to “psychological problems.”
Doctors have always been trans people’s biggest allies and biggest antagonists. Doctors made it possible for trans people to access new levels of harmony in their own bodies, and doctors helped dispel the stigma that trans people are inherently mentally disturbed. But doctors were also the very people who determined that being trans was a mental illness in the first place.
In the 1940s and 50s, during the early years of trans medicine in the U.S., doctors instituted a system of gatekeeping to sort the “real” trans people from the rest. They prized trans folks' ability to “pass"—to move through society undetected as trans—and patients needed to play the game if they wanted approval for treatment. In Julia Serano’s queer classic Whipping Girl, she describes how trans women learned to “show up for their psychotherapy appointments wearing dresses and makeup,” stick to a narrative about being “trapped” in a man’s body, and deny being sexually active.
The functions and language of this system of control linger: When I had top surgery in 2012, my insurance listed my diagnosis as “true transsexual,” a term from endocrinologist Harry Benjamin’s 1966 “Sexual Orientation Scale.” Just this May, the world’s two gold-standard diagnostic tools, the World Health Organization’s International Classification of Diseases (ICD) and the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM), de-categorized transness as a mental illness. Until then, trans patients were labeled as suffering from “gender identity disorder” (GID). The new ICD terminology is “gender incongruence,” and the DSM replaced GID with “gender dysphoria.”
Susan Stryker highlighted medical science’s power to “regulate” society in Transgender History , writing , “Medical practitioners and institutions have the social power to determine what is considered sick or healthy, normal or pathological... to transform potentially neutral forms of human difference into unjust and oppressive social hierarchies.” Still today, doctors play god with trans bodies, deciding who does and doesn't deserve access to care—as I found out, this time around, in my experiences with general practitioners.
The doctor who cluelessly asked about my prostate was, ironically, the doctor who gave me the best advice about subjecting myself to doctor after doctor: “You have to prepare yourself to go through this for a long time.” By “this,” I think he meant not only physical discomfort, but the very process of seeking care itself, of dealing with the unpleasant assumptions, of being profoundly disappointed and dismissed.
I finally received a diagnosis when a friend recommended a rheumatologist close to home. His office didn’t take insurance, but I was desperate. The doctor himself actually received me on time from the waiting room—a first. He went over my trans-related treatment briefly, but spent nearly all of the appointment directly addressing the actual symptoms I was there to discuss. He determined I have undifferentiated spondyloarthritis, an auto-inflammatory disease that affects the spine, joints, and where tendons and ligaments attach to bone. I will most likely struggle with pain for my entire life, although medications and physical therapy can help. I felt dejected, but grateful to regain a modicum of understanding and control. And I'd found a doctor who made me feel believed.
This should not have taken as long as it did, especially given the amount of specialists I saw. 2016 data suggests around 1.4 million people in the U.S. identify as trans, which means we can bust once and for all the myth that the average American (and doctor) has not met a transgender person. Trans healthcare is no longer a niche business, and with unprecedented media visibility for trans folks this decade, a lack of basic knowledge about trans identities and healthcare needs is more inexcusable than ever.
My doctor didn’t specialize in trans healthcare, but he could provide tailored care for my specific body with kindness and respect. I’m certain my positive experience at this practice was directly correlated to the fact that I paid out of pocket for the care, a more-lucrative exchange for doctors which subsequently incentivizes a more hands-on approach, but there are things all medical care providers can do to educate themselves and make trans patients feel more welcome.
We can’t fix the outdated, for-profit healthcare system overnight, but we can start by advocating for the humanization of disenfranchised patient populations. Practices should prioritize having at least one doctor with some experience treating trans people and have all of their staff take full advantage of free resources about how to offer respectful and effective care, like the University of San Francisco’s "Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People." Healthcare professionals with an online presence can openly list their trans-friendliness in order to help clients find them (and avoid doctors who aren't aware or respectful of trans health). Even seemingly small things, like “safe space” stickers and LGBTQ health brochures are always appreciated. It is an anomaly for anyone to have reliable access to good healthcare in America, but for trans patients like me, especially ones seeking care for chronic issues, it's, devastatingly, even rarer.
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This article originally appeared on VICE US.