When I discovered that I was rare I also had to come out.

By Nate Millam II

I had to come out twice—once about who I loved, and again about what my body was going
through.
When I came out as gay during my junior year of high school, I was still living under the shadow
of a Crohn’s disease diagnosis—a label that didn’t just misname what was happening in my body
but misled nearly a decade of treatment and perception. I hadn’t yet been diagnosed with HLH, a
rare, life-threatening immune disorder. And because I was still figuring myself out, there were
doctors I hadn’t come out to—both out of fear and because for 15 years, I hadn’t come out to
myself yet.

The complexity of being both Black and queer in the healthcare system is something I never
needed to be taught—it was something I lived. My pain was questioned. My queerness was
never considered. And when I finally received the correct diagnosis, went through a bone
marrow transplant, and began the long, grueling process of recovery, I realized something no one
ever prepares you for: I had to come out again. But this time, it wasn’t about identity alone—it
was about care.

I had to explicitly tell my doctors I was gay, not for validation, but for survival. For them to
understand my risks, my needs, my safety, my sexual health. I needed my providers to know who
I was—not just the rare disease I had, but the person living with it. That meant reintroducing
myself not only as a transplant recipient, but as a queer man navigating the aftermath of more
than a dozen surgeries, changes in body image, and shifts in what intimacy and social connection
look like for me now.

As I said during the Global Genes Rare Pride Queer Conversation last year, “When I discovered
that I was rare, I also had to come out.” These two truths—my queerness and my
diagnosis—arrived in separate chapters of my life, but they’re deeply entangled in how I move
through the world. Being rare isn’t just about a medical condition; it’s about navigating systems
that weren’t designed for someone like me. And being queer in that same system adds another
layer of misunderstanding, another barrier to being fully seen.

This part of my story is one I don’t often get to tell—but it’s one I know many people in our
community will understand. Because coming out is rarely a one-time thing. It’s ongoing. It’s
layered. It’s exhausting. And it shouldn’t be necessary.

I’ve learned that advocacy doesn’t always look like protest signs or speeches. Sometimes, it
looks like telling the truth in an exam room. Sometimes, it’s teaching your providers how to care
for someone like you—because no one else ever did. And sometimes, it’s writing something like
this, in the hope that someone out there feels a little less alone.