Until this last year, accessing top surgery was a losing battle for me. But it’s not because of where I live, my health insurance, or any of the other typical barriers you might imagine when trans people are looking for care.
It’s because I’m mentally ill.
I live with obsessive-compulsive disorder (OCD) and complex trauma; I’m also transgender. And I’ve found that, at this particular intersection, accessing the health care I need has been an uphill battle.
I’ve been denied care numerous times over the years, under the premise that I was too mentally ill to undergo a major surgery — ignoring that gender dysphoria, an acutely painful experience for many trans people, was contributing to my poor mental health.
It took two years to be placed on a waitlist for surgery, when a therapist finally decided that I was “stable” enough (without any explanation of what that actually means).
And it wasn’t just surgery that was made difficult. Psychiatrists in the past have encouraged me to stop taking testosterone, convinced it was making me “worse.” While hospitalized for depression, I had nurses trying to withhold my hormones because they didn’t feel it was “necessary.”
This last January, I finally got top surgery and I now have consistent access to hormone replacement therapy. But I still live in fear that, should my mental health decline again, I won’t have access to the gender-affirming care that has vastly improved my life and wellbeing.
Frustrated by my own experiences, I started reaching out to other trans people with mental illness to see if they’d encountered similar challenges — and I was horrified by what I found.
“A lot of doctors I saw questioned my ability to handle hormones as someone with a history of depression and self-harm,” Luke, a non-binary trans man in Ontario shared with me.
Could that history really justify someone being denied hormones altogether? I was wondering that, too. So I did a little research on the literature we have. And… it’s not exactly helpful, to say the least.
The World Professional Association for Transgender Health (WPATH) created their Standards of Care. The SOC are, more or less, the most recognized clinical guidelines for treating transgender patients. They advocate for an “informed consent” model: allowing for trans people, once fully informed of the risks and benefits of treatment, to choose for themselves the right path forward.
The standards also advocate for competent treatment of co-existing mental health conditions with the use of therapy and medications, where appropriate.
But if you look closer, you’ll find that they are limited in how they discuss treatment of mentally ill trans people. “Clients should be assessed for their ability to provide educated and informed consent for medical treatments,” it reads, without actually offering adequate guidelines for what this looks like in practice.
It also states that, before surgery is considered for someone with severe psychiatric disorders and impaired reality testing (so delusions or hallucinations, really), “an effort must be made to improve these conditions with psychotropic medications and/or psychotherapy before surgery is contemplated.”
This raises a really important question: How, exactly, do we measure “improvement” in mentally ill trans people?
And if there isn’t significant enough improvement, is a trans person simply in limbo, unable to access transition-related care?
Mentally ill trans people, then, are ultimately left to the whims of whatever mental health clinician they happen to be seeing — with very little recourse if they disagree with that clinician’s assessment of their readiness for care.
The SOC directly list conditions like psychosis, bipolar disorder, dissociative identity disorder, and borderline personality disorder as mental illnesses that could impact “readiness for surgery.”
But in a document of 120 pages, the SOC actually say very little on how, exactly, to assess at what point a mentally ill trans person might be “ready” to access surgery. Until this is made clearer, transgender people are put in an impossible position of deciding whether or not it’s safe to disclose their mental health status.
Interestingly, WPATH — and the overwhelming majority of care providers who work with transgender people — agrees that gender-affirming care is medically necessary. What’s puzzling is that, in almost any other context, mental health status would not preclude someone from medically-necessary care for any other condition.
Gender-affirming care somehow seems to be an exception, reinforcing the notion that trans-related care is “optional.”
The most direct mention of denying access to surgery in the Standards of Care reads, “No surgery should be performed while a patient is actively psychotic.”
This seems to be the only statement that a trans person can point to when they encounter obstacles, but given the other mentions of “readiness” and “improvement,” there are still too many ambiguities— and too many clinicians who aren’t at all familiar with the SOC to begin with.
Not to mention, none of this helps trans people with more severe mental health challenges who still need to access care.
It’s worth noting, too, that disorders like borderline personality disorder — which is flagged as a potential issue in the SOC — include an “unstable sense of self” as a diagnostic criteria, as well as difficulty trusting others and recurrent suicidality.
Coincidentally, these sound an awful lot like issues any trans person could struggle with simply because they are transgender.
In other words? Any trans person could be denied care if a clinician who’s unfamiliar with this population misdiagnoses them. In fact, at the time at which I was denied surgery, I myself was misdiagnosed as borderline. When that diagnosis no longer applied, I finally found myself on the waitlist.
While some boundaries surely need to exist, the utter lack of clarity in these guidelines means that trans people with any mental health struggle are at risk.
I spoke to Traci Lowenthal, a licensed psychologist that has worked closely with the transgender community. Most of the time, she shared, “mental illness should not be a barrier to getting necessary trans health care.”
The keyword here being, of course, “should.”
When assessing the readiness of a mentally ill trans person to pursue surgery, the most important factors, she says, are safety and the ability to consent.
So long as they can provide informed consent and keep themselves safe (the example she gives is proper hygiene and medication compliance post-surgery), there should be no barrier in accessing gender-affirming care.
“If a person has delusions,” she continued, “it would be ideal if their mental health provider could help them prepare for how those delusions may impact them while they receive medical care and during recovery.”
Compare this to my two-year battle to access surgery. It wasn’t because I was delusional — I was told, in essence, that I was too depressed to undergo surgery. There was no effort made to determine if surgery might improve that depression, and if there could be ways to better prepare for surgery in that state of mind.
The end result? Transgender people are scared to be honest about their mental health. And this has serious consequences.
I spoke with Ghost (a pseudonym), a trans person in Detroit, Michigan, who experiences schizoaffective disorder, delusions, and anxiety. For them, this has meant a constant fear of interference and mistrust in clinicians. “I am absolutely terrified that my mental health status will be used against me [in transitioning],” they explained.
“I’ve already experienced ‘the look’ from a medical professional,” they went on. “The one they use when you tell them [your mental health status], and they’re suddenly very skeptical of you.”
And with disorders like schizophrenia and borderline disorder especially, all of the trans folks I spoke to said they encountered disbelief when disclosing they were transgender, simply because they had one of these illnesses.
Some trans people have resorted to hiding their mental health history, or outright lying about their mental health status to providers. Others postponed psychiatric treatment altogether to ensure they could first transition without interference, which included forgoing psychotropic medications they desperately needed.
The unfortunate reality is, clinicians can’t adequately prepare someone for the specific challenges of medical transition if they don’t know about their client’s mental health status. And of course, when trans people have greater reluctance to seek out psychiatric care during their transition, they’re unlikely to get the support they need for the best possible outcome.
The fact that trans people should have to choose between gender-affirming care OR mental health care is unjust. Access to both is critical, especially for such a vulnerable population.
Trans people face an extraordinary risk for suicide — but if they fear disclosing their mental health struggles, they are likely to suffer in silence. This puts their lives in danger.
And when a trans person with mental illness is, indeed, denied access to care, the path forward is equally unclear.
Florence Ashley, transfeminine activist and LL.M. candidate at McGill University — with a special focus on bioethics and transgender health care policy — highlights just how much of a grey area this is.
Pointing again to the WPATH Standards of Care, she notes, “The only case that WPATH describes as precluding surgery is while the patient is ‘actively psychotic.’”
The rest, she agrees, is murky at best. “As with many issues faced by trans people, the best we can do is extrapolate from sources of law that have yet to be applied to the specific issue,” Ashley said, noting that a case might be made on the grounds of medical liability and professional ethics.
However, there appears to be no legal precedent for trans people specifically to look to when making such a case.
“This really ties back to a core problem in trans law,” she continues. “At some point, policymaking bodies will have to take up responsibility and pass enforceable policies and laws on trans-specific problems in collaboration with trans communities. Otherwise, we’re always going to be left behind.”
It’s evident, then, that more research and attention is needed to properly support trans people with mental health struggles. We need clearer guidelines, direct policies, and competent clinicians who are prepared to work with trans people regardless of mental health status.
For the transgender people who fear that they will not be able to access gender-affirming care, however, this offers very little comfort.
“I’m constantly worrying that someone will look more deeply into my history and see attempts, hospitalizations, a history of self-harm, and take it all away,” Tamsin, trans woman in Vancouver confessed.
While she finally has access to hormones, she fears it isn’t guaranteed. “[It will] cause me at least some anxiety for life.”
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