All I need is one kindness

When medical care for a transguy goes wrong

There’s this funny thing that happens when you’ve been through trauma. You’ve taken hit after hit, you’re constantly bracing for the next impact, and yet all it takes is one brief moment of something good to make you feel like you might be okay. It’s a low bar, too, to get to that feeling of hope. Maybe it’s a nod or a smile, recognition in the simplest of forms, a skosh of respect. How is it that we can take so much hurt and then crave relief only to be satisfied with a dribble?

I am going to tell you a story, and some parts of it you might already know. Others I know I haven’t said out loud. It’s incredibly hard to write a thing like this. It’s revealing and vulnerable and scary, and I know this is exactly the sort of thing that the internet would love to take out of context, to use against me or other trans persons who have endured similar pain and trauma. But if I don’t say it out loud, if I don’t acknowledge that it happened, that it happened in a west coast city that should be better, that it happened with people who have sworn oaths to be better, then I am not doing my best to help my trans siblings, and I am not doing all that I can to support everyone else who needs to hear this kind of thing.

Let me dive into that for just a second before I get to the grit. THERE ARE TRANS PEOPLE EVERYWHERE. We are in every country, every state in the US, every province of Canada, in territories and towns and cities and on islands. We cannot help being who and where we are. We don’t choose our identities. We don’t pick what families to be born into. We don’t automatically line up with the political demographics that best support us. And because of all of these factors – and further owing to the isolation that society intentionally perpetuates upon us – nearly all of us grow up alone. It is a unifying commonality that nearly every trans person has felt (at least at one critical point in their lives) that we are the only one who has ever felt the way we do, that we are alone, that there is nobody else like us in the whole world. And so because of this, because of the isolation and the difficulty finding support, because of the lack of resources, because it’s hard to find your community and your place when you are transgender, it is all the more essential that those of us with voices and with an ounce of agency share our experiences.¹

Finding a doctor is hard work, especially in the face of pandemics, economic downturns, and the growing demands placed upon medical facilities and personnel. I didn’t know that I would need an endocrinologist when I was first coming out as transgender, but I quickly discovered that my primary physician wouldn’t prescribe me what I needed, and that I’d need to seek out a specialist. I sat in her office and tried desperately to find the words to come out to her, but I was terrified of speaking the words aloud to anyone, let alone a doctor I only saw once a year at most. I failed. I did not ask for what I needed, and when I hinted around the edges, I was dismissed.

There was no referral to endocrinology. I looked for a doctor myself, called and asked for an appointment and discovered it would be at least four months before I would get to see anyone. There was no choice in doctors. At my first visit he agreed to begin me on low dose testosterone. We would review my blood labs regularly to ensure that everything was safe and working well.

That didn’t happen exactly as I understood it should.

My dose went up when I felt comfortable with it, and I was overjoyed. I could feel my body coming into alignment with my identity, I could sense that my emotions were more manageable and stable, and I knew this was the right path forward.

But anytime I needed a refill of my medication I was facing countless phone calls, sitting on hold, leaving messages that were never answered, never getting a call back. The pharmacy had the same problem. The doctor’s office never responded to them either.

Things I was told regarding my prescription:

• One 10mL vial should last you for three months. (But the vial expires 30 days after opening, which means it’s only good for four weeks.)

• Single use vials can be used multiple times over the course of a month. This one should last you four shots. (But the CDC has pretty easy to understand guidelines on what “single dose vial” means, and it’s kind of obvious. It means one. Single means one.)

• I shouldn’t need to call them all the time as the prescription was written to be good for six months. (Except that it wasn’t.)

• My insurance company was going to reject payment for my prescription because I wasn’t using all the medication and was throwing it away. “And when that happens, I don’t know what you’ll do.”

I’m going to zoom in on that last one. “I don’t know what you’ll do,” were the exact, venomous words that woman used with me over the phone, and it crushed me. Because she was right. I didn’t know what I would do either. I was asking for help and getting berated for trying to do the right thing, and I was hitting a brick wall every single time. That call got reported to the office manager because I complained about her tone, about how it made me feel, about how it impacted me so severely. They promised me the office manager would call me back and discuss it with me. I bet you can guess whether they did.²

When we finally got things figured out, I was finally able to relax and know that my prescription would be there for me every month. Listen, I don’t know if you have ever needed a medication and required it for your mental, emotional, and physical health and wellbeing, but the fear of not getting it when you are running out is absolutely petrifying. And I was going through that cycle every four weeks for more than seven months. Over and over again I would ramp up in anxiety as we closed in on refill week. Over and over again I had to fight for what I needed.

I did not realize in those moments that this is gatekeeping.

A few months later another doctor I visited noted that my hematocrit was elevated. It wasn’t in a danger zone yet, but it was uncharacteristic for me. I’ve been anemic all my life. In some ways having better iron and hemoglobin has been a real gift. But no one said a word to me about that hematocrit and the trouble I was headed toward.

I even asked if my T dosage should be reviewed. I was reassured my endocrinologist would be in touch if that was needed. These doctors collaborated, after all. They spoke, they shared results, my care was coordinated.

But it never was.

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Months went by before my next visit with that endo. I did the obligatory blood labs the week prior, and even I could see that my hematocrit was wicked high. So was my cholesterol.

** Let’s note here that a few things are very normal for guys like me who decide to start up testosterone. Many of us notice our hematocrit and iron levels rise. We are often at risk for elevated cholesterol, an increased potential for diabetes, and risks of high blood pressure.

*** Let’s also note that these medical risks are often used against transgender people to convince us that hormones are “not worth it” if they come with elevated rates of heart attack or stroke.

The doctor’s response to my high cholesterol was to put me on a statin which my body perceived as an allergen. His response to my high hematocrit was to stop my testosterone completely.

Cold turkey.

I obeyed, in part because of the threat of serious medical consequences. These are things not to be taken lightly. But when I asked when I’d be allowed to return to my T, my questions were left unanswered. “We’ll see,” was the first response. And then, “When your levels drop a bit,” was the next line. And then, “Let’s give it a couple more weeks,” when the numbers DID NOT drop at all. Nowhere was there any promise that I even could return to taking T, and that fear ate me alive.

There is this widely held belief in America that it is “so easy” to get hormones, that anyone will prescribe them, that doctors are handing them out like candy, and my story is evidence to the contrary. In fact, I’ve never heard one transgender individual talk about how easy it is to get what we need. We’ve all been through some version of this, and many of us will go through it repeatedly.

In the meantime, my body started to react to having no hormones at all. Maybe you know the drill: hot flashes, night sweats, an inability to get to sleep or stay asleep, anxiety, headaches. I’ll spare you the other symptoms. Needless to say, the physical symptoms were far outweighed by the emotional ones.

Above all other things I was faced with the fear of losing all that I had come to gain in a year of having testosterone in my body. It wasn’t just the terror of my body reverting to a shape I knew I could not love or accept. It wasn’t just the loss of muscle mass or facial hair, it was the unbridled fear of being misgendered, of my body betraying me, of the world - which had only just begun to see the real me – losing sight of who I was before I even had a chance to feel steady on my feet.

Needing some type of hormone in my body forced me to face the possibility that perhaps this transition was not something I could have, that maybe, just maybe, I would be forced to accept estrogen, and that felt like a forced de-transition.

I need you to hear this. I need this part known above all the rest.

No one can make me go back to that. I would rather die.

I feel the need to recap here, again to emphasize how easily all of this happened to a relatively normal person in a politically liberal city with support and love and at least some resources: I started my transition, I got the hormone I needed, I started to feel better, my doctor failed to monitor my dose properly, my body flagged a warning, my doctor removed my medication, and I began a path of suicidal ideation within two weeks.

That is how fast this happens.

That is how quickly the lives of transgender people can be put at risk by not listening, by not understanding, by not believing.

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Change happens so slowly in a transition. We’re all staring into the mirror after our first shot of T, desperately searching for a hair on our chin or for our sideburns to fill out. And while we are preoccupied with our need to see and feel some outward presentation of masculinity that will signal to the world who we are, where we belong, that we often miss the subtle undercurrent of change that comes to our mental and emotional state. I do know that I felt calmer within the first month of being on T. By the end of the second month I wasn’t crying daily anymore. At the six-month mark I lived through the most destabilizing trauma I’ve had to face in a long, long time, and I know – in part at least – that it is because of my body getting the hormone it needed.³ Without it, my entire world began to crumble.

But this post is about kindness, so allow me to tell the other part of this story.

I have this amazing friend who stayed close through all of these hard moments, always listening patiently, frequently making keen observations, and often reminding me that I would find a way through to something better. He asked me to look for a new doctor.

Now I don’t know if you’ve ever tried looking for a new medical provider when your life was in a state of chaos, but it’s intimidating and hard, and I was scared to try. I was scared of the next person treating me the same way. I was scared for another doctor to agree with the first, to withhold testosterone, to imply that perhaps I’m just not a good candidate for HRT. I was afraid to look for a second opinion. I was afraid to ask for help. I was afraid to advocate for myself.

But I gave it a try.

I walked into a new clinic. I filled out forms. The kind person at the front desk asked me what pronouns felt best for me, and a tiny glimmer of hope in my chest sparkled. That’s not a common question to hear. By the time the doctor walked in, I knew something about that visit was going to be different. He asked about my other experience, and we went over how my treatment had been handled. And then he shocked the hell out of me.

“So, when a transgender patient has only been on HRT for a year, the last thing we want to do is remove that hormone from them. It can cause immense dysphoria, which is what you’re describing. It’s my preference to lower the dosage instead, so that you don’t have to face the instability and the risks associated with that type of extreme dysphoria.”

I felt like an idiot (in the best way possible). That was dysphoria? The terror that my body would revert? The nightmares? My fear of looking in the mirror? The dizziness and nausea anytime my mind even wandered close to the thought that I’d never get back on T again? The rush of fear over being caught in the men’s restroom when that anxiety had been calm for so many months?

I was too close to see it.

But this doctor understood. He put together a treatment plan, ordered some tests, and assured me that I was an active participant in determining how we would move forward. I walked out in a daze, sat in my car, and cried at the relief of it all (you know, low testosterone lets me cry again). I felt the real possibility of hope for the first time in a month. I was going to be allowed to take my medication. I was not being de-transitioned against my will.

Things were going to be okay.

Having worked in customer service fields many times in my life, I’m aware of the phenomenon that people are way more likely to leave a complaint than to leave a compliment or commendation for a job well done. But when we are the ones experiencing trauma and hurt, apparently the inverse applies.

All that I needed was for one person to be kind to me.

He did not give me a shot of testosterone in that exam room. We didn’t resolve my high hematocrit. We both ended the visit with unanswered questions and the need to get more data. And still, by the time I was sitting in my car wiping my eyes, I felt the depression subsiding, the anxiety relaxed its grip on me, and I could breathe for the first time in weeks.

That doctor saved my life.

Sure, that sounds pretty dramatic. But believe me, it’s not. I didn’t even acknowledge how close I was to the edge of not making it until he grabbed my arm and pulled me back up.

Just by being kind.

I wrote recently about the experience of being a transgender person seeking medical care, which was at the mid-point of this healthcare debacle. I’m writing about it again because there just isn’t enough out there about this stuff. It’s hard to talk about, it’s revealing and feels vulnerable, and it opens trans folks like myself up to criticism and hatred. The internet is a rough place to hang out. There are other important stories out there about people of color, people with disabilities, immigrants, and other vulnerable populations, including the intersection of them with queer identities that my story does not even begin to touch on. This kind of experience is more common than we think, and that’s because of the silence that hangs heavy over us and our fear over our treatment (or the gatekeepers standing between us and what we need).

My silence about this isolated me. I hope that my voice shows others they are not alone, and that it’s important to be our own best advocates where and when we are able.

If you are considering leaving a comment on this post, I’m going to ask you to consider this…

Please don’t mention bravery. Labeling anyone, or their actions, as brave sends out the message that anyone facing these types of challenges who doesn’t perform the same actions is not brave, and that message can be damaging to others in the trans community.

Along those same lines, this is a community shared by cis and trans identities, so please be kind to everyone here.

Your trans friend,

Robin

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1. Please remember that this part, the desire to share, is a choice. Not all trans folks want to share their experiences. Please don’t ask someone to do this. Come here, instead, where I am offering it to you.

2. They didn’t.

3. It’s also because of excellent, regular, gender-affirming therapy, a wife and family who cared deeply, and loving friends who showed up precisely when asked. These are all lifesaving factors.