Schizophrenia rates are significantly higher in trans and gender-non conforming (TGNC) people. Yet, there is little research to tell us why that is and how to address it.
“It’s a big problem, the way marginalized communities in general are treated by researchers. We need to be better,” said Melissa Perreault, a professor at the University of Guelph who studies sex-based differences in the brain.
Perreault recently published a paper with grad student Caitlin Nolan and Rutgers University professor Troy Roepke on the need for more gender inclusive research around schizophrenia.
Nolan, who was the primary writer, has a background in neuroscience, and Roepke studies the interactions between hormones and the brain; they are both part of the LGBTQIA+ community.
While Perreault is not part of the queer community herself and said she doesn’t want to speak for them, as a Métis woman, she is well aware of the difficulties and misconceptions that exist in research approaches for marginalized communities.
“I have a solid understanding of what researchers are doing wrong,” she said, adding that when it comes to schizophrenia research, there are “a lot of problems."
One such problem is recruitment. These communities don't have a lot of trust for healthcare practitioners and researchers, she said. This means researchers typically resort to recruiting gender diverse subjects through gender identity clinics, which she said is a small niche, and not representative of the population as a whole.
“This is the easiest way to do it, but it’s not representative.”
Another problem is the lack of separation between gender diverse groups; researchers tend to lump them all together.
“So whether someone identifies as a trans man or trans woman, whether they are gender non-conforming, often they’re all grouped together instead of being separated into these distinct groups,” she said.
And just as the biology is different between a cisgendered men and women, the biology is different between a trans man and trans woman.
“The mechanisms that drive these disorders would be inherently different,” she said. “So unless we look at these subgroups separately, how can we fully understand and develop an individualized treatment regimen?”
Researchers also typically consider deficit-based approaches, she said, meaning they look at the community, see a problem, and feel like they need to fix it without having a proper understanding of why there is an increased prevalence of schizophrenia in these groups – one study suggests it’s as much as five to nine times more common.
While there is no known cause, stress is considered a major trigger for schizophrenia, and one theory suggests these higher rates are because of the stress that comes from stigma, prejudice and discrimination. This can include being misgendered, being refused access to gendered spaces like bathrooms, stigma and stress around transitioning.
She said it’s important for researchers to consider factors like these that may be contributing to their stress in order to address them. Otherwise, people tend to see these numbers and blame those with a diagnosis instead of the environment and stigma surrounding them.
“This perception is really affecting the care for these individuals,” she said.
And because this isn’t often mentioned or explored in research, she said it further contributes to the stigma around gender diverse people.
Another concern is that schizophrenia typically emerges during the same years as gender dysphoria, meaning there is often a delay in treatment or no treatment, because clinicians are unsure which the symptoms belong to.
“Even now, binary sex differences, sex and gender differences, are not being appropriately considered. It’s very, very rare that a gender continuum would be considered in neuropsychiatric disorders.”
While there are some researchers who specifically focus on this kind of thing, she said it needs to be brought to the broader research community.
“We need to understand why the prevalence of schizophrenia is so much higher in this community,” she said. “And we need to understand intersectionality, so those from different racial backgrounds, and how that contributes as well.”
This will help to develop personalized treatment strategies for those with schizophrenia, along with addressing some of the stigma those communities face.
“It will force people to become educated, and have cultural awareness of these groups, which makes the entire process more inclusive and makes these individuals feel more comfortable,” she said.
