You’ve probably heard of an “orphan” disease. This is a condition that is sufficiently rare (officially defined by the FDA as affecting less than 200,000 people nationwide) to not merit much time, effort, or money thrown at it. As a result, afflicted patients are often left fending for themselves – doing their own medical research, navigating a byzantine health care system, and getting generally demoralized in the process. Whether you’re a medical professional or not, I’d like you to take a moment to imagine your body falling apart. You’re scared and you need help. But none of the doctors you see really know what to do for you. Instead, you’re met with a series of shoulder shrugs and “I’m sorry’s.”
Visiting doctors who don’t know how to handle you is bad enough when it happens to someone in 0.06% of the population. Imagine, then, how significant the problem is for transgender patients, who are now estimated to make up 0.6% of the U.S. population. Now we’re talking about one order of magnitude more people! Although I believe that clinicians’ awareness is improving, the care of transgender patients in our medical system can make these patients feel like they have an orphan disease.
It Starts with Terminology
As recently as just a few years ago, any patient coming to see me for cross-hormone therapy would carry a diagnosis of Gender Identity Disorder (italics are mine). As part of internationally accepted criteria for beginning hormonal therapy, a patient with GID should have a “letter of readiness” from a licensed mental health professional (the “informed consent” model, in which a letter is not necessary, is outside the scope of this post). I’ve shared many transgender patients with a local therapist who is a transgender woman (born male, now female), so her thoughts always carry a lot of weight with me. Over the years, my colleague’s letters to me have included some variation of the following: “Although I do not believe that ‘Gender Identity Disorder’ is truly a disorder, this patient does meet the criteria for diagnosis.” What she’s saying reflects the position of many in the transgender community, in that classifying this condition as a disorder can be stigmatizing and, frankly, inaccurate.
With the release of the DSM-V (Diagnostic and Statistical Manual of Mental Disorders- Version 5), the terminology problem was recognized and “GID” was changed to “gender dysphoria.” To cultivate insight into why a term like GID can be so powerful – and so hurtful – the WPATH Standards of Care says it best:
Some people experience gender dysphoria at such a level that the distress meets criteria for a formal diagnosis that might be classified as a mental disorder…Existing classification systems…attempt to classify clusters of symptoms and conditions, not the individuals themselves. A disorder is a description of something with which a person might
struggle, not a description of the person or the person’s identity.
Thus, transsexual, transgender, and gender nonconforming individuals are not inherently disordered. Rather, the distress of gender dysphoria, when present, is the concern that might be
diagnosable and for which various treatment options are available.
Pronouns cause angst
In our electronic medical record, we have the ability to list a patient’s preferred name. If Daniel Smith (not a real name) – who now goes by Gloria – comes to see me, my reception and clinical staff can look at the EMR and call her by the appropriate name. But the gender marker on the chart will still say “male,” until such time as Gloria officially changes her name/gender on all government documents and with her insurance company. You haven’t been frustrated until you’ve argued with an insurance company that denied payment because the patient’s gender marker on the chart doesn’t match what the company has on file. Never mind that the “transgender” diagnosis is all over the documentation.
In the exam room, it’s tough to see a transgender man wince every time his well-meaning but naive family member refers to him as “her” during our conversation. It’s hard to listen to a transgender woman lament that her coworkers gossip about “that dude.” It’s sometimes difficult, even for me, to keep the pronouns 100% consistent throughout my progress note, especially when a sentence looks something like this: “A few months ago, he had two episodes of spotting, but now his periods have stopped entirely on the higher dose of testosterone.” I find it especially challenging when I have a patient who identifies as “non-binary” and prefers use of “they” as opposed to he/she – that really hurts the part of my brain that insists on proper grammar.
Most of us take it for granted that, as we walk down the street, we’re subconsciously registered by others as “that guy” or “that lady.” We all have our insecurities, of course. So maybe we wonder if people are staring at our giant nose or our generous midsection. But this pales in comparison to being served in a restaurant by a waiter who keeps referring to you as sir when you are a transgender woman. How the heck are you supposed to enjoy your meal now, as your core identity is questioned every time the server comes to check on you?
Without wading too far into what has become a politicized debate, just think about how a transgender person feels when they simply need to empty their bladder in a public place. How stressful must it be to have an internal debate about which restroom to enter, wondering whether some other bathroom-goer is going to loudly out you, forcing you out of the restroom with a full bladder and a heavy dose of shame?
While we’re at it – maybe I will wade into the debate – do you honestly think transgender people are trying to sneak a peek at your naked bum in the restroom? Please. They’re too focused on keeping their head down and trying to force the urine out as fast as it will flow. Next time you stop at a rest area on a lonely stretch of Route 80 in western New Jersey, you should be more worried about the cisgender (identifies with the gender with which they were born) perv in the trench coat at the urinal next to you, craning his neck to check out your piece.
Other people think it’s a choice
I saw an older woman recently for something totally unrelated to gender care. She had seen on my practice’s website that I treat transgender patients and asked me, point-blank, if I just treat the hormonal issue, or if I also “agree with the lifestyle.” I have to admit that stopped me cold for a beat. What I wanted to say was, “I completely reject the premise of your question. This is not a lifestyle, nor is it a choice. Rather, this is about the fundamental essence of who they know they should become, as a person.” But, given the tone of her question (heavy on judgment, light on innocent curiosity) and in the interest of not forcing a confrontation that might lower my Press Ganey score (a standardized measure of patient satisfaction that is giving most clinicians severe heartburn), I simply answered “both,” and moved on. Before you jump all over me, yes, I’m ashamed that I chickened out of this conversation. But at the time, she didn’t strike me as someone who was interested in having a nuanced back-and-forth.
Insurance will cover hormone therapy – oh wait – no it won’t
Over the last five years or so, insurance companies have mostly been better about coverage of cross-hormone therapy. But within the last six months, I have seen a higher rate of denials coming through, even for patients who had previously been stable on their hormonal regimen. Frustrating, right? Imagine you have debilitating pain from rheumatoid arthritis and your doctor finally got insurance approval for an expensive, disease-modifying drug. You start the drug and your pain has been cut in half, so you’re now active in ways you hadn’t been for years. Then your insurance company does an about-face and says it won’t pay anymore. Do you just go back to a life with twice the pain?
The most ridiculous denial of coverage I received recently was for the syringes and needles used by one of my FTM (female-to-male) patients for self-injecting testosterone. The insurance company would cover the testosterone, but they didn’t want to pay for the simple and inexpensive device used to actually get the T into the body. Seriously? My response to the insurance company was snarky, which should surprise exactly no-one:
“I’m writing in support of coverage of syringes and needles for my patient, who needs them to inject the testosterone for which your company has agreed to pay. Injectable testosterone is FDA-approved for intramuscular injection only, and not approved for oral, transdermal, rectal, or vaginal use/application. Fortunately, modern medical science has innovated a miraculous device known as a syringe which, when attached to a needle, can be utilized to inject injectable testosterone into the body. Cover the syringes and needles and stop wasting my time.”
Why I love transgender patients
I’ve mentioned just a few of the challenges transgender patients face, which sometimes also translate into challenges for me. So why take on the extra hassle? Don’t I have enough agitation on a daily basis? One reason why I enjoy caring for these folks is that they have something that I can actually cure. Think about it. In Endocrinology, I spend my days managing diseases. I manage diabetes. I manage hypothyroidism. I manage PCOS, osteoporosis, low testosterone, and thyroid nodules. Even thyroid cancer – which is usually a fairly non-aggressive and treatable condition – needs to be monitored lifelong, because it could recur many years down the road.
But gender dysphoria can be cured (or at least greatly ameliorated) by initiation of hormone therapy. I cannot even count how many times I’ve seen an anxious, depressed, stressed-out man come back a few months after starting estradiol as a radiant, confident, transitioning woman. Or a slightly-built woman come back a few months after starting testosterone, carrying herself with more swagger, talking in a deeper voice, and flexing her guns.
I also find that I learn deeply personal things about my transgender patients, usually to a greater extent than with my other patients. I suppose it’s because the lead-up to the first visit with me comes with all kinds of tangled emotions, and that lead-up period can be several decades long. For example, I saw a cis male who knew from a very young age that her gender didn’t feel quite right. But she grew up over 60 years ago in a small town, in a part of the country where people who were “different” had to worry about lynching. So she did what most people with gender dysphoria did back then: stuffed it way down, married someone of the opposite gender, had kids, and went on with life. 60+ years later, she wound up in my office, sharing her life story.
I suppose that much of my commitment to transgender patients stems from my own struggles as a kid, which cultivated a tendency to root for the underdog. While my issues weren’t in the same league as kids with gender dysphoria, I was picked on for years. I didn’t develop the self-confidence to not care until senior year of high school, so yeah, I was an insecure mess for much of my formative years.
While I do take pride in the nuance I bring to management of other aspects of Endocrinology, helping transgender people become who they were meant to be is one of the most rewarding things I do on a daily basis. And because there are so few doctors who know how to handle their issues, they tend to be among my most grateful patients. I don’t care what the Press Ganey score shows – my transgender patients leave the room happy, which makes my day that much better. Cheers to all of them.
Do you see transgender patients in your practice? What struggles do you face in taking care of them? Do you enjoy seeing this patient population? Are you transgender? How has your medical care been? Comment below!
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