Transformations: What I Learned Along My Patient’s Gender Journey

It took me almost a decade after I met Rex to really know him; or perhaps more accurately, I might say I knew Rex for almost a decade before I ever met him.

The first ten years I was his endocrinologist, he was not Rex, the confident, outgoing, hard-working, healthy young man successfully juggling college, managing his diabetes, and working several jobs to pay for college; he was Rose, the withdrawn, isolated, depressed teen-aged girl struggling with, among many other things, her diabetes. When Rose came to the diabetes clinic, she would politely and reluctantly indulge me as I instructed her on the importance of taking her insulin, counting her carbohydrates, and checking her blood sugar levels. I would sometimes make it all the way through the lesson before her eyes glazed over, but more often not. I worried about her long-term health and felt that I was failing her as her doctor. I attributed our failure to connect to our vast differences in age, ethnic background, and socioeconomic situation. She connected better, I think, with one of our nurse practitioners, although she continued to struggle with depression, with a lack of motivation, and, of course, with her diabetes self-management.

Years later, I got my second chance. That same nurse practitioner pulled me aside in her diabetes clinic one day and informed me that Rose wanted to be seen in our newly opened gender clinic. I met with the family briefly that day to explain how the gender clinic worked and then began seeing Rose, now Rex, regularly to oversee the medical and hormonal aspects of his gender-affirming care. Our conversations ranged from the initially awkward and tentative moments, during which he shared with me his deepest and most personal hopes and fears about his transition and his body; through technical discussions of risks and benefits of hormones, hormone blockers, surgeries, and fertility preservation options; to the cringeworthy and occasionally giggle-inducing attempts to counsel him about safe sexual practices. Some of these topics were as unfamiliar to me as to him, if not more; I feel as if we took his gender journey together, with his diabetes along for the ride as a familiar stone upon which we could temporarily rest until the next turn in the road.

It is not hyperbole to say that I have watched Rex become a whole new person. As he became the person he was always supposed to be, his isolation gave way to interaction, his withdrawal to engagement, his depression to hope, and, yes, his diabetes struggles to successes. And somewhere along the way, I recognized that my lectures had given way to conversations. The chasm between us had closed, or at least narrowed, to the point that I could easily jump over to his side. In fact, when I shared this reflection with him, he said he appreciated what I said and hoped that it would strike a chord with others as it did with him.

Rex has taught me many things: about courage, honesty, persistence, and faith. But, mostly, he has taught me a valuable lesson about what it really means as a pediatrician to care for a person, not a condition. I used to think, perhaps hubristically, that when it comes to my clinical work, I “got it”: I understood the profound toll a chronic illness may take on a life and on a family; I did not judge, or scold, when patients and their parents could not comply or adhere (or some other similar word) to the management plan that we (usually I) prescribed. If I just kept teaching, kept talking, finding a new way to reach them, they would eventually get it.

But Rex put me in my place a little bit (not purposefully; he is too kind a human being for that). He reminded me that everyone who walks into my clinic has approximately a million other things going on in their life besides their diabetes (maybe not so profound as gender incongruence but singularly important to them), and at any given time, these things may be more important than their diabetes. The “special sauce” is how to help them keep their diabetes, if not at the top of their priority list, at least on the page somewhere and, when diabetes falls off the list, just to be there with them in whatever way I can. Maybe had I listened more and lectured less, Rex would have shared more, and we could have reached where we are today a little earlier. Maybe not. Sometimes things happen with our patients for the best, or the worst, not because of what we do, or despite what we do, but just alongside what we do.

Rex certainly has continuing challenges ahead: a lifetime of medical management, potentially additional surgery, and a roiling societal landscape that alternately embraces then shuns gender-expansive individuals. And for every Rex, who is a success story on so many levels, there are many Roses who do not flourish but wither, or even die, perhaps by their own hand, not having the water, soil, and lattice of a supportive family, safe social environment, and welcoming medical system to nourish their growth. I was lucky enough to get another chance with Rex to impact his life in a positive way, and I will listen a little harder to the next Rose who steps into my office.

Michelangelo famously said, “Every block of stone has a statue inside it, and it is the task of the sculptor to discover it.” Perhaps as pediatricians, we are not responsible for discovering the person within the block of stone, but we are there to provide the tools and guide the hands as our patients themselves carve their own identities out of the stone from which they emerge.