RERUN! Friday's Guest: Beck, "Getting T Wasn’t the Hard Part: beyond access into ongoing care"
[I’m reposting this because I keep running up against doctors who don’t have a clue. The other day, I took JJ to Urgent Care because they were dizzy and weak. Five hours later, we left with no diagnosis except for a deep regret that we’d ever entered the facility in the first place. This had nothing to do with JJ’s trans-ness. It was just your every day “why does this health care system make us suffer so” American experience.
Regarding trans health, what Beck has to say is so important. Practitioners assume that taking T contributes to poor health. As Beck so aptly puts it, “if a few years on a low dose of testosterone was enough to instigate every health complaint I’ve experienced since, I don’t know how cis men are surviving out there.”
No one worries about cis het men having averse health effects due to their testosterone. (Toxic masculinity is a topic for another day.)]
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It makes sense, when talking about transgender health, to talk about gender-affirming care, particularly as access is being stripped away in several states. It’s at risk, and it’s one of the things that trans people need that cis people don’t.[1]
When I began the medical side of my transition, many years ago in rural Utah, I anticipated issues accessing care. And yet, with a letter from a university counselor, and the enthusiastic help of a local Nurse Practitioner, I walked out with a testosterone prescription the day I sought it. I realized that not only was there a surgeon who could perform top surgery in Salt Lake City, it was the most affordable top surgery in the United States and she had the best track record – a 0% nipple loss rate (yeah, that’s a thing you have to worry about). When I switched my care to a local family doctor, I again anticipated friction – which never occurred. My doctor, like many of the Mormon individuals who provided me with care, was friendly, respectful, and happy to provide what I sought.
Though, in every case except with my surgeon, I played the dual roles of patient and educator – to my first appointment, I brought information on the different types of T, which the NP consulted as she was not well-versed in them. With the family doctor, I was able to provide information that helped him better treat his other trans patients. With almost every nurse who drew my blood or took my vitals, I ended up answering a variety of well-intentioned (though often poorly phrased) questions about my identity, needs, and experience.
I was used to this – this was all about 8 or 9 years ago. People saw Laverne Cox in Orange is the New Black and had seen a few episodes of Drag Race. They were, by and large, more familiar with the concept of trans women and drag queens than trans men. I lived in a rural area and played the same role at the university I attended – educator and activist. This, unlike the ease of getting care, was something I guessed would happen.
What I didn’t anticipate is how receiving gender-affirming care has affected my healthcare ever since.
Three years after starting, I got off of T. It was for a variety of reasons that are nunya – and because an upside of T is that many changes are permanent (my voice wasn’t going to un-drop, for example).[2] This was five years ago.
I stopped T and moved out of Utah. And ever since, in almost every single healthcare situation, I am haunted by my time on testosterone. No matter my complaint or concern, nurses, doctors, and healthcare providers go, “Oh, that’s probably because you were on testosterone.” (Fun fact: I was only ever on the lowest possible dose of T. So not only has it been years, it wasn’t much!)
I understand that providers are trained to look for what’s different. And I realize most of their patients don’t have HRT in their medical history. But if a few years on a low dose of testosterone was enough to instigate every health complaint I’ve experienced since, I don’t know how cis men are surviving out there. These would often be, mind you, the same providers that had just asked me a question like, “So what exactly is transgenderism?” while they drew my blood, and then when wonky blood results came back, state with all confidence, “That’s because you were on T.”
It’s not that it’s being considered as a cause – again, look for what’s different. My one positive experience in this whole mess was with my PCP in Georgia. While trying to get to the bottom of a thyroid issue he walked into our appointment and said, “I wondered if your HRT could have caused this. So I did the research, and I’ve ruled it out.”
I have never been so sad to lose a primary care provider (we moved six months later). And I would give anything to find another like him. Because it would be one thing if everyone wondered and then investigated it. But it’s a whole other thing to get most providers to look at any other cause. I have to push for tests, past admonishments, past eye rolls, past the “Okay, but this is just wasting your money and my time” vibe, and even find new providers. They’re not just guessing it was T, they’ve decided it was T, so why bother?
Despite the fact that it being T doesn’t provide me with any treatment avenues – I’m already off the testosterone, so what do I do? I can’t be any more off it. Am I just cursed with mediocre health now? Despite none of these issues being known as potential HRT side effects? Despite some being preexisting? Despite a family history?
I know I can’t be the only trans person in the situation, and I know that I’m lucky enough that none of the issues have been debilitating or life-threatening. But how many folks are having their complaints brushed aside due to a past or present course of HRT? How many of these issues could be dangerous if untreated? How is the patient supposed to know when it’s “not a big deal” and when it is vital to push for that test? How do you deal with the fact that if the doctor doesn’t think the test is necessary, you might pay out of pocket? How do you ever get treated like a normal patient with a variety of factors affecting your health, instead of as having One Thing that is the cause of everything?
As a trans person, I need my healthcare providers to be willing to prescribe or perform the various aspects of gender-affirming care. But I also need them to understand the actual, proven side effects of this care, the impacts it will or will not have on future health, to both advise those seeking it and to care for those who are, or have been, on it. Hell, to bother to look up if HRT could be the cause of an issue.
Because right now, the result for me, as I know it must be for many, is that I no longer actively seek healthcare. I try to take care of myself and hope for the best. It seems about as good as paying a co-pay just to hear, “It’s because you were on T.” Which is starting to sound like, “This is just a consequence you get for being trans.”
[1] This is only broadly true, of course. Many cis people are on some form of hormone therapy or treatment, and top surgery is sometimes used to treat cis men with gynecomastia
[2] Trans people make a variety of decisions regarding HRT – whether to get on it, how long they stay on it, how much, and so on. Many people remain on HRT for their whole lives, but many don’t. Some organizations use someone stopping HRT as evidence of a “detransition”. There are people who detransition. But most people who stop HRT are not. Something to keep in mind when you see detransition numbers.
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Beck is a writer who lives in Maine.
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