Originally published at Everyday Feminism.
“I think we need to hold off on this,” the therapist tells me, “until you’re doing a little better.”
My heart dropped. I was stunned, sitting in total silence.
This was the third time I’d been given a red light and told not to proceed with top surgery – a surgery I desperately needed, but struggled to access because of my mental illness.
This was a struggle I knew all too well as both mentally ill and trans – a struggle many of my other transgender friends had never even heard of.
Intersectional feminism tells us that the various aspects of our identity will impact our lived experiences – especially as it relates to power and privilege.
This is true for me as a transgender person who is also white, and thus does not experience racism and benefits from white privilege. I think it’s really important to be mindful of the ways that this impacts how I move through the world – and how I can be a better ally to trans people of color.
I wanted to write this article because, as a trans person with mental illness, I encounter obstacles that trans people without mental illness seldom, if ever, need to worry about.
Issues of access and competence because of my illnesses are a daily struggle – and these are issues that many neurotypical trans people take for granted.
If we’re going to uplift all transgender people, and not just a select few, we need to be mindful of the complex lives we lead – which necessitates an intersectional approach.
And for mentally ill trans people, you’d be surprised by the complexity of our struggles.
Here are three obstacles I never expected, and the real consequences that I’ve had to deal with as a result.
1. My Clinicians Have Interfered with My Access to Hormones
The first time I was hospitalized for mental illness, the psychiatrist said to me, “Have you ever considered stopping the testosterone?”
I was in total shock.
My hormones were suddenly being considered optional, rather than a necessary part of my care as a transgender person. No one seemed to believe me when I said testosterone was not optional, and that not having it would make things worse – not better.
Later that day, when I went to the nurse’s station to receive my medications, my testosterone was nowhere to be found.
“Do you need that?” the nurse asked me. “I don’t think we have that.”
Furious, I had to advocate for myself – demanding that I receive my testosterone and even threatening legal action. My partner then contacted the prescribing physician, who said, defeated, “If they won’t give Sam his hormones, I’m not sure if there’s anything I can do.”
Eventually, I did get my testosterone the following day, despite being discouraged by doctors and nurses alike from taking it. The prospect of being hospitalized under an involuntary hold, with my hormones being left to the whims of a trans-incompetent staff, terrified me.
I’ve never felt so powerless in my entire life.
I wondered how many other mentally ill trans people had this exact experience, and when I started writing publicly about it, I quickly learned that I wasn’t the only one.
A psychiatric hospitalization is meant to stabilize you with competent and compassionate care. But as a transgender person, my experiences taught me that even a so-called “safe space” can re-traumatize us in ways we didn’t think were possible.
While access to hormones can be a struggle for many transgender people, mentally ill trans people are especially vulnerable because we’re assumed to be untrustworthy and unable to determine our own needs.
This is unacceptable. Yet, it happens to mentally ill trans people far too often.
2. I Keep Being Denied Surgery
It’s not a secret that medical transition can be necessary for some transgender people – trans people like me – and that our mental health outcomes are often better when we access the care that we need.
And even though this tends to be the prevailing attitude amongst the majority of clinicians, I still struggle to access surgery because of my psychiatric health.
It becomes a catch-22 for mentally ill trans people: Clinicians want us to be reasonably stable before we access surgery. Yet, many of us can’t be stable until we access those same surgeries.
The fear is that if our mental health is too poor, we will be unable to care for ourselves after surgery, or the stress of a major surgery will trigger a worse episode and fling us into crisis.
While these can be valid concerns, overly cautious clinicians have used these concerns to deny mentally ill trans people their agency and bodily autonomy, resulting in an unbearable limbo in which we spend months, and even years, unable to access surgeries that are necessary for us to be mentally well.
A friend of mine who struggles with schizophrenia and gender dysphoria told me that they fear they may never be able to access surgery, after continually being denied because their clinicians don’t trust them to know what they need and what they can handle.
Accessing surgery can be a tremendous challenge for any transgender person – but mentally ill trans people are at a significant disadvantage, because we’re not believed to be “objective” enough to assess our own needs and priorities.
And the worst part?
This leads trans people to lie to our clinicians about our mental health, or not seek out mental health treatment at all because we fear it will interfere with our transitions.
For example, recently, a blog reader reached out to me to say they desperately need anti-depressants but are fearful of taking them because they’re scared they won’t be able to access surgery if they do.
This is outright dangerous. We’re taking huge gambles with our mental health – and it’s antithetical to why we transition in the first place.
3. My Clinicians Don’t Have the Research They Need to Help Me – Because It Doesn’t Exist
When testosterone led me to start losing my hair at a significant rate, I was prescribed Finasteride (also known as Proscar/Propecia) to help me.
Not much later, I experienced a deep depression that led to suicidal thoughts – and my first psychiatric hospitalization.
I stopped taking Finasteride while in the hospital because the nurses didn’t give it to me. Interestingly, I completely recovered from my depression not long after stopping.
I figured the new psychiatric medications must’ve worked.
Fast forward many months later, when the hair loss started to accelerate. I gave Finasteride another try.
Shortly after, just exactly like before, I experienced a deep depression that led to suicidal thoughts – and was hospitalized for a second time. I was given Finasteride in the hospital this time, and when I was released, I was still hopelessly depressed.
That’s when I started to wonder: With Finasteride messing with my hormonal balance, was it possible that this was the culprit? So I stopped taking it on my own. And to the surprise of my clinicians, the depression and suicidality almost completely subsided within a few days.
My psychiatrists were shocked by how rapidly I recovered when I stopped taking it.
And my prescribing physician admitted that because this is usually prescribed to cisgender men, we don’t have enough research to know for certain what Finasteride might bring up for trans folks – and especially for those with a history of mental illness.
While this side effect was one she hadn’t heard of, she conceded that it was totally possible that Finasteride and I weren’t a good match. “I believe you,” she said.
And she had good reason to. I later found out that we actually have research that links suicidality and depression to Finasteride users, and we have users and loved ones alike who are demanding answers, including a lawsuit alleging that the drug company failed to disclose this as a potential side effect.
But – no surprise – that research still focuses on cisgender men.
We really have no concept of how risky Finasteride could be for trans people, especially mentally ill trans people who could very well be more susceptible.
My clinicians never once considered that the way that Finasteride affected my hormones may, in fact, be affecting my mental health. And because there’s no research or precedent on how to treat patients like me, I have hospital bills and trauma from two hospitalizations that may have been totally preventable.
My clinicians have unanimously urged me to never take Finasteride again.
This is all well and good, but what about the countless other transgender people who are still being prescribed this – especially those with a history of mental illness?
Without proper research, we will never be able to definitively say what the risks are – and trans people, especially those most at risk for mental health struggles, will continue to take drugs like Finasteride without properly knowing what those risks might be.
Hormones and psychiatric medications are so complex, and we have little to no research that tells us how to treat mentally ill trans people.
As such, we receive disjointed care – care that doesn’t take into account the complex interactions between hormones and mental illness.
I’m no doctor, but it terrifies me to know that without setting a precedent for how to holistically care for mentally ill trans people, we may very well be receiving subpar treatment – treatment that could endanger our lives.
Every day, I receive e-mails and blog comments from all over the world, with mentally ill trans people asking me what they’ll be up against if they begin their medical transitions.
I can’t say for certain.
For one, we’re all so vastly different, responding to hormones and medications in unique ways. Access and clinical competence also varies widely by geographic location. And, frankly, what little research exists doesn’t help us much.
Here’s what I know for sure: We do face potential challenges and risks that are understudied, and we’re a community that is astonishingly underserved.
I can only speak from personal experience when I say that the terrifying and unjust reality is that our clinicians often don’t know what we’re up against. We’re left to be our own advocates, a position that is both difficult and scary.
And as a feminist, I know, unequivocally, that we deserve better than that.
If we want to be supportive of the transgender community, it’s high time that we take an intersectional approach and start advocating for those most vulnerable among us – mentally ill trans people included.
Of the three obstacles you discuss here, I think #3, the lack of research is a huge key to the other two. If the “evidence based best practice” literature included, at least, the observation that for certain Trans and mentally ill people, the medical transition treatment they are seeking would improve their condition or stability, that barrier would be weakened (assuming the information reaches the clinicians).
In my career in mental health services virtually all of the clients I worked with were cisgendered, if not all “straight”. Nowhere in my periodic training, or in my grad school program were issues related to the intersection of mental illness and trans experience mentioned. Thank you again for bringing these issues to discussion.
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Reblogged this on cabbagesandkings524 and commented:
Sam brings a clear and hard won knowledge to issues facing people seeking help with Trans and mental illness problems.
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Thank you for writing this. I know first hand the frustration of having to be your own expert on how your prescribed medications interact and affect your mental health. It’s good when clinicians can say “I believe you,” but what about the people who were not believed or for whom that phrase is too little too late? Thanks again for sharing.
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Thank you Sam for this articulate and thoughtful article. I agree 100% with all that you have mentioned here, and desperately wish more providers had access to it. As a medical provider of transyouth care, I have heard the “you need to be stable before hormones and/or surgery” argument so often, that I developed an entire educational section on it for my lectures. As far as finasteride – I have often wondered what the impact of blocking the body’s access to the most potent form of testosterone (DHT) would do to exacerbate dysphoria in transmasculine individuals. Thanks for bring this up again! Dr. Olson-Kennedy
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Thank you for sharing your experiences, I agree the lack of research surrounding trans care is something that makes me worry as I start hormonal transition. I’m a non binary dude and I’ve just started low dose T and finastercide at the same time, hoping it will prevent balding along with body hair growth that I don’t want. I’m worried about the side effects though, so I’ll be watching closely to see if it sparks any depression or suicidal thoughts. Thank for the warning friend.
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