Mental Health From the Inside Out: Harnessing the Lived Experience of the Trans Community.

Guest Blog By Greta Gustava Martela and Nina Chaubal

No discussion about mental health and the Transgender community can be complete without addressing and understanding the community’s distrust of health care providers. The Trans community generally struggles with healthcare providers who have very little, if any, formal training in working with Trans patients. However, the widespread distrust of healthcare providers goes back further than that. For many years, the standards of care put forth by the WPATH included the practice of gatekeeping - where mental health providers became the arbiters of who was “trans enough.” These practices forced Trans people seeking transition-related health care to be put through a year of living as their gender before being allowed to access hormone therapy. Whether or not one could access transition-related healthcare such hormones, surgeries relied heavily on how well they would conform to society’s norms. The mostly heterosexual male mental health field perpetuated society’s homophobia and misogyny. Trans women who were queer or did not meet the stringent beauty norms our society places on women were often denied the care. Trans people who did manage to get the health care they needed were forced by their mental health providers to go “stealth”-live a life where they never disclose their Trans status to anyone.

In some ways, this has changed, in other ways it has not. The WPATH no longer restricts healthcare to queer Trans people, it no longer requires Trans people to go through a year of transitioning without access to hormones and it no longer requires letters from multiple mental health providers to access transition-related surgery. However, many mental health providers haven’t gotten the memo. It’s very common for a trans person seeking mental health care to find a provider who has never interacted with a trans patient before who will ask patients to wait a year before having access to hormones or bring up a Gender Identity Disorder diagnosis from an older version of the DSM - which in 2012 was updated to use Gender Dysphoria instead to avoid describing trans people as disordered. Even when a Trans person is able to find a mental health provider who is cognizant of the issues around Trans healthcare, insurance companies are more than happy to enforce antiquated requirements.

Transition is the most effective treatment for people dealing with Gender Dysphoria. Historically, this didn’t come from the medical profession. It came from the lived experiences of Trans people not being able to get the help of medical providers and self-administering hormones. The community designed a treatment that worked for its members because the medical profession at the time didn’t seem to particularly care. A community that’s been taking care of its own for generations, values lived experience. This extends beyond transition related care to mental health and psychiatric care. It is disappointing to see health care and mental health care providers consistently devalue their Trans patients’ experiences. The theories of healthcare providers are taken more seriously than the lived experiences of Trans people where these healthcare providers have no training around Trans lives and show a lack of understanding of Trans lives.

A classic example of this lack of understanding is what the Trans community calls the “trans broken arm syndrome.” It comes from the idea that a Trans person seeking care for a broken arm will have some health care provider blame it on their Trans status. The broken arm, of course, is a placeholder for any ordinary ailment. “Go off your hormones” becomes the default advice given to Trans people who are sick. The authors are well versed with this effect from their own experiences. Greta recently checked into the ER unable to breathe after a particularly bad asthma attack. As she was in the middle of the breathing treatment, a doctor noticed her hormones on her list of medications and started asking for her surgical history. How is whether or not a patient has had surgery on their genitalia relevant to their breathing? Nina is currently recovering from pancreatitis as a result of high triglyceride levels. In spite of her explaining her family’s history with high triglycerides, two different doctors tried to pin it on her hormones with one suggesting she go off hormones in the event of another bout of pancreatitis. Sadly, experiences of this nature are far from uncommon among Trans people.

Trans people on hormone replacement therapy repeatedly report increased levels of mental wellness. There are many anecdotal accounts of improving mental health coinciding with the onset of hormone replacement therapy.  We hear stories from a lot of Trans people saying they had to pick between transitioning and ending their own life. Asking a Trans person on hormones to go off hormones is one of the most misguided and irresponsible things a provider could recommend.

Trans people experience high levels of economic injustice and often have a difficult time finding jobs. Trans people who transition in the workplace, often lose their jobs as a result of their Trans status. Trans people experience losing their families and housing as a result of being Trans. It’s not that surprising that Trans people are angry about the systemic discrimination and scapegoating society throws at the Trans community. Frequently this righteous anger becomes the basis for stigmatizing mental health diagnoses such as Borderline Personality Disorder. Trans people with this diagnosis often report it to be inaccurate and as a result of their Trans status.

These are some of the experiences Trans people have with the accessing health care both historically and to the present date. The communal mistrust of healthcare providers is largely a reaction to the way healthcare providers have been treating Trans people. A community under stress can’t trust a profession that contributes to its stress.

The lived experiences of Trans people are also instructive in the realm of suicide prevention. Trans Lifeline is a crisis hotline for Trans people by Trans people and prides itself in being unapologetically informed by Trans people’s lived experiences. Our earliest decisions about care were drawn from Greta’s experiences trying to access suicide prevention care. She found herself, during a crisis, explaining what it means to be Trans to the crisis worker she was connected to. Greta found the workers reaction to her Trans status further isolating and alienating.

Photo from Trans Lifeline website

Later, Trans Lifeline conducted a survey of over 800 Trans people asking about issues surrounding access to suicide prevention care. Our biggest finding was around the attitudes of our community around emergency personnel. We found that on average the majority of our surveyed population was uncomfortable interacting with emergency personnel. We compared Nurses, Doctors, Paramedics, Firefighters and Police on a 1-5 scale, 1 being extremely uncomfortable and 5 being extremely comfortable. Nurses, who scored the highest, came in at an average of 2.88, just shy of the neither comfortable nor uncomfortable mark. We found that of all those who told us they had never called a crisis line, 51% reported not calling a crisis line in spite of having been in crisis. We asked this group to tell us about their experiences and while some of them talked about phone anxiety, the overwhelming majority talked of being afraid of being forced to interact with the police and of being admitted to psychiatric facilities without their consent. These experiences have informed Trans Lifeline’s policies and we only enact active rescue with the consent of the caller.

More recently, we have put together a survey that our new operators take before a training class. While it’s too early for the data to be meaningful, we’re seeing about 90% our operators reporting lived experiences of suicide. We are also seeing a lot of our operators report feelings of not fitting in anywhere (Joiner’s Thwarted Belongingness) and experiences with familial rejection. According to Injustice at Every Turn, one of the largest surveys of Trans people, 41% of their surveyed population reported attempting suicide. It’s not unsurprising that most Trans people have lived experience of suicide. It’s perhaps a little telling that it’s these folks with lived experience of suicide who are most keen to take a stand and help prevent suicide in the community.

We are continually confronted with a lack of quantitative data regarding suicide and the Trans community. The Census Bureau and the CDC don’t keep data on trans people. The above 41% number - a striking contrast to the 4.6% lifetime suicide attempt risk in the general population - mostly exists in isolation. We don’t have numbers on suicidal ideation in the Trans community. We don’t have numbers on loss survivors in the community. In an effort to address this, on June 27, 2016, The National LGBTQ Taskforce and Trans Lifeline announced a collaborative Trans Mental Health Survey. We hope to find the experiences trans people have that make them afraid of mental health providers and psychiatric facilities. We aim to gauge the general level of trans competency among healthcare providers and to figure out how often Trans people are taken off their hormones or given diagnoses for no reason other than their Trans status. We hope to uncover the degree to which mental illnesses interfere with the lives of Trans people and finally have some decent data about the extent of the mental health crisis in our community.

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Greta Gustava Martela is the co-founder and Executive Director of Trans Lifeline. Ms. Martela has drawn on her own experience with suicidality to create a resource that is able to respond to the needs of the Trans community. Prior to Trans Lifeline, Ms. Martela worked as a software engineer.

Nina Chaubal is a former Google software engineer who co-founded Trans Lifeline with her wife and transition buddy, Greta Martela. She currently serves as Trans Lifeline's Director of Operations as Chief Executive Officer of her tech startup Cupcake Systems.