When Nessi Hunter Alice was 13, they started experiencing nausea every time they ate, sometimes even to the point of throwing up. Nobody took Alice seriously, though, because they’re a non-binary person who was assigned female at birth. Health care providers wrote Alice off as hysterical.
“I went to an older male doctor for a while for that and other concerns,” Alice tells INTO, “and he basically refused to treat me for anything because I was delusional and he didn’t want to treat me until I got psychological stuff worked out. And he called me delusional partially because I identified myself as non-binary.”
It wasn’t until Alice found a doctor who was non-binary supportive that Alice was diagnosed with gastroesophageal reflux disease (GERD), which is when stomach acid gets into the esophagus, and got the treatment they needed.
Sadly, Alice’s experience is not an anomaly. “Jasper” (who prefers to be anonymous) tells INTO that they went into a psychologist’s office for a disability evaluation, but left the appointment in tears when the psychologist refused to use their pronouns and asked invasive questions about Jasper’s genitals. Others have health care providers that say they’re supportive, but their actions show otherwise. Jay, for example, was misgendered by their doctor in two referral letters to a gender identity clinic.
“I wish someone would hold doctors accountable for learning how to handle trans and non-binary folks on their own time without grilling patients for all we know and treating us like lab rats,” Jasper says, “asking irrelevant and frankly humiliating questions.”
A recent study published in LGBT Health broke down non-binary people’s negative experiences with health care providers into four categories. Some non-binary people experienced health care providers that had a very strict binarist view of gender. One named Vera, an indigenous two-spirit person, reported quitting their medical care because their provider kept assuming Vera wanted bottom surgery. Some reported difficulty finding health care providers who knew what non-binary meant, while others said they had to identify as binary trans people in order to receive proper medical care. Even some trans-friendly providers lacked knowledge about specific needs non-binary people have.
“It’s interesting because there’s a layer of folks who are going out and seeking care and either be actively discriminated against or not getting the best care possible because their providers don’t know how to offer it,” HRC Children, Youth and Families Program Coordinator Sula Malina tells INTO. “Then there’s the other layer of folks who simply don’t care to try anymore because they probably had terrible experiences in the past or they’ve heard terrible stories. So I think there’s a lot of missed opportunity in terms of affirmatively and even just correctly serving folks who really need it.”
Malina–whose pronouns are they/them–recently co-authored an article for the Annals of Family Medicine called “Communicating with Patients Who Have Non-binary Gender Identities.” The article was originally for Fenway Health, an LGBTQ-centered health care facility in Boston that Malina used to intern for.
“I just had some kind of negative experiences with my own health care as a non-binary person,” Malina tells INTO, “so I proposed we have a lot of documents and publications that deal with navigating being a frontline staff person and what do you do when somebody who’s trans comes in, or really what do you do when anybody comes in because anybody could be trans. But I don’t think that we have anything yet speaking specifically to the need for non-binary folks and the simple ways that providers and frontline staff can adjust to create space for folks with identities beyond the binary.”
Malina says they didn’t have a lot of negative experiences with health care providers themselves, but the few negative experiences they did have left Malina in tears. When Malina went in for top surgery consultation, for example, a health care provider didn’t take them seriously because they’re non-binary. Malina also had negative experiences seeking treatment for an eating disorder, which they say was closely connected to their gender dysphoria.
“There wasn’t an acknowledgment of the ways in which my eating disorder and my body image interacted with gender dysphoria and the ways that I was using the eating disorder as a way to control the transition in an unhealthy way,” Malina tells INTO. “Because there wasn’t an acknowledgment of that, I was just immediately, completely resistant to the idea of being helped by this provider.”
So what are ways health care providers can better serve non-binary patients? One example Malina gives is more inclusive intake forms that ask for a patient’s preferred name and pronouns.
“Of course, there’s still times when your legal name still needs to be used for insurance purposes,” they tell INTO. “But there are really quite simple ways to navigate that even with a kind of restrictive data system, which I know that folks are working with those data systems to just make those more inclusive as well and create more fields and spaces for preferred name and pronouns and things like that.”
Other tips include gender-neutral restrooms, avoiding gendered language until a patient’s preferred pronouns are known, using the terminology trans and non-binary patients use for their body parts and being aware of certain issues–like eating disorders and self-harm–that disproportionately affect trans and non-binary people. The main thing Malina wants health care providers to know is that providers don’t need to know all the LGBTQ terminology; just the simple act of listening to patients can have a tremendously positive effect.
“Of course there’s an important foundation of knowledge to have,” Malina tells INTO. “You should know what LGBTQ stands for. You should know the definitions of a few gender identities. But the reality is those definitions are only an approximation of an experience. Everybody who uses those terms to describe themselves around gender identity have a completely different experience of it. So I think the most important thing that a provider could have in that way is humility and, a knowledge of how to respectfully ask somebody what their experience is when it is necessary.”
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