A few years ago, Casey Weaverling walked into a transgender health clinic in Pittsburgh, tentative but excited to embark on a new journey of starting gender-affirming hormone therapy.
At the front desk, Weaverling filled out a chart with their pronouns - they/them - and preferred name. But once they got past the waiting room and into the consultation, things took a sharp turn from gender-affirming to alienating, according to Weaverling, 35.
"I get back there, and it's not a conversation at all," they said. "The nurse is telling me what's going to happen and how I have to do things. The assumption was, you're here for [testosterone], therefore you're a trans man, therefore you want maximum testosterone and effects, and that's what we're going to do."
Like many other health providers, the nurse, from Weaverling's perspective, was ill-equipped to deal with a nonbinary patient. The nurse not only assumed Weaverling was a trans man, but also bypassed all of their questions about starting slowly with a low dose of testosterone to see if they liked the changes, and instead prescribed a rigid plan that they could not customize, Weaverling said.
"I was just so turned off by the whole thing that I never went back," they added.
For the past at least 70 years, the trans medical model has been formalized in clinical guidelines by the World Professional Association for Transgender Health (WPATH), which primarily understands transgender health care as transitioning from woman to man or man to woman. Accordingly, patients are typically expected to follow certain steps: a gender dysphoria diagnosis from a therapist or primary health provider, followed by hormone therapy, and finally a range of possible surgeries.
"Nonbinary folks upend all of that - the entire model," said Stef Shuster, an assistant professor of sociology at Michigan State University and the author of "Trans Medicine."
For instance, while trans men and women might want full doses of hormone replacement therapy and aspire to complete all of the available steps of transgender care, nonbinary patients might want surgery without hormones. Others, such as Weaverling, may want to experiment with microdoses of hormones for more subtle changes.
Nonbinary and gender-nonconforming people are a substantial population, and identification is expected to increase with growing visibility in American society. More than 1 million U.S. adults identify as nonbinary, and one in four LGBTQ Americans ages 13 to 21 identifies as nonbinary.
And yet, the medical establishment has not caught up to the health needs of nonbinary patients, according to many advocates and providers. While trans and nonbinary people are often discussed as one group, research shows nonbinary patients face specific struggles that go under the radar - clashing with particular stigmas and lack of provider understanding. This is often because nonbinary patients disrupt a health system that has long relied on a gender binary.
Providers are taught a very specific narrative of who "counts" as trans, as well as rigid steps for providing care, according to Shuster and other experts. In the current guidelines, phrases such as "male to female" and "female to male" are used throughout.
But what if a patient doesn't want a medical transition from one binary to another? Or if one's gender journey isn't as neat and tidy as "I've always known I was a boy"?
In my own research with patients as a medical sociologist, I've seen how and when nonbinary experiences are brushed aside - even at specialty trans clinics. Some patients have to lie to providers or insurance companies to receive gender-affirming care. Others simply go without it, which can be dangerous for mental and physical health. Some nonbinary patients avoid the medical system altogether to bypass the hassle of explaining their gender and pronouns to provider after provider, or to avoid the stress of being misgendered.
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In the current trans medical model, the onus is on patients to prove they are "transgender enough" to qualify for gender-affirming care. As proof, providers often expect descriptions of gender and bodily and social discomfort that fit the accepted diagnostic criteria. If the narrative matches these characteristics, patients are diagnosed with gender dysphoria. This psychological diagnosis then serves as a green light for subsequent trans medicine, provided the person follows the requisite steps in the correct order.
For many providers, following the guidelines is important to ensure they are providing high quality care to their patients. Charles Garramone, a plastic and reconstructive surgeon in Florida who specializes in trans-affirming top surgery, said he adheres strictly to the guidelines set forth by WPATH to make sure he is "helping his patients transition safely."
But public health experts say this process can be particularly taxing for nonbinary people, whose experiences of gender deviate from the typical medical script.
For Shuster, the gender dysphoria diagnosis requirement often serves as a double standard for nonbinary people: "It makes it incredibly difficult to access care at all without either giving them the story that they want to hear or being open about who they are," they said.
Experts increasingly understand this phenomenon as "transnormativity" in medicine.
Evan Vipond, a PhD candidate in gender, feminist and women's studies at York University, said that amid this transnormativity, being able to access care is primarily based on a person's ability to describe their gender in specific ways that are "recognizable to medical practitioners."
"This often includes the sound bite of being born in the 'wrong body' [and] cross-gender identification and behavior in childhood," Vipond explained. But when seeking specific sound bites, doctors forgo a tailored approach to care and can ultimately do harm to their patients by gatekeeping access to critical care.
For Daní Benítez, 25, a nonbinary person in North Carolina, getting access to gender-affirming care has required a series of white lies for insurance companies or going along with false narratives about their gender, they said. Benítez has come up against providers that view them as a lesbian and therefore try to block access to their care, or others who assume Benítez is a trans man and therefore lay out inflexible treatment options.
Benítez said that when it comes to medical providers, "my identity has never been recognized."
When they wanted top surgery a couple of years ago, their insurance required a letter from a psychiatrist and one from Benítez, making a case for why they needed this surgery. Two letters were required because they decided against hormone therapy before surgery; WPATH guidelines require one letter for top surgery. In both letters, Benítez was described as a trans man.
In their own letter, Benítez said they intentionally wrote misleading things such as "I feel connected to being a man" in order to "convince" the insurance provider that they needed the surgery. Without the insurance coverage, the surgery would have cost thousands of dollars. And while many insurance plans consider transgender procedures such as top surgery to be "cosmetic," there is extensive evidence of gender-affirming care being lifesaving.
Garramone has seen the vast positive impact on his patients firsthand. "Surgery is a life-changing procedure for [transgender people]," he said. "It improves their quality of life greatly."
Milo Crane, a 29-year-old living in North Texas, identified as nonbinary and used they/them pronouns until recently. Before coming out as a trans man, he said, access to trans medicine had been akin to an obstacle course. At a top-surgery consultation, the provider was concerned Crane would regret the surgery and told him to come back in six months with a letter from a therapist.
"I cried on the way home," Crane said. "I felt utterly defeated and invalidated, and I felt like I had just been given a death sentence."
Crane ended up getting the surgery from a surgeon who doesn't specialize in trans medicine, after Crane was identified as being at higher risk for breast cancer. Throughout the whole experience, providers used she/her pronouns and treated Crane "like a woman," he said.
These negative interactions with providers can have significant consequences. Experiences with medical stigma can lead people to avoid preventive health care, producing palpable health disparities for nonbinary people on the population level across mental and physical health.
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The current way of defining trans medicine is failing nonbinary patients, but advocates and some providers are beginning to shift toward a new way of caring for those who defy the gender binary. Experts say standards of care must recognize that sex and gender are both spectrums and there is no "right way" to engage with trans medicine. As part of this, providers can move toward a patient-centered approach to gender-affirming health care.
For Vipond, this approach hinges on the idea that "each patient's needs and desires in regard to transitioning are different and equally valid."
This framework would pave the way for care for people who want gender-affirming surgeries without hormone therapy. In these cases, surgery would offer immediate relief from gender dysphoria without lifelong reliance on access to hormones or the unknown changes that might accompany taking them.
Decoupling trans care from psychotherapy and the need to be formally diagnosed with gender dysphoria would also be a step in the right direction, advocates say. Though trans health has been classified within the realm of mental health disorders since the 1980s, some providers are beginning to adopt an "informed consent" model instead.
Dallas Ducar, a psychiatric nurse practitioner and founding chief executive of Transhealth Northampton, said providers should abandon the idea of trans medicine as a "linear process" and acknowledge the way clinical guidelines are based on the gender binary.
"The only way that can happen is by listening to an informed and vocal patient population," she said. "And to me, that really means creating a patient-centered model, and one that is rooted in informed consent."
In an informed consent model, providers grant patients all of the available information regarding risks and benefits - empowering the patient to make their own decisions about a medical procedure, whether that's hormone therapy or surgery. This takes concerns about a patient regretting a procedure out of the hands of a provider and allows patients to be an active participant in their care.
Experts agree that informed consent for trans health would help reduce the stigma attached to medical transition and trans identities and make gender-affirming care more accessible to those who need it.
Many patients would also appreciate no longer having to make a case for why they need gender-affirming care.
As Benítez put it: "We know what's going on in our minds and in our own bodies."