A Life at the Edges of Medicine

A quiet reflection on a lifetime in the healthcare system — and the deep need for advocacy.

Some stories don’t begin with a single event. They unfold slowly, over years — not with drama, but with patterns. This is one of those stories.

Not long ago, I was hospitalized during a difficult breathing episode. In the course of that stay, a lab result showed a venous oxygen saturation of 29% — a number low enough to raise deep concern. And yet, no one responded. No one called it out. It passed unnoticed.

Later, I was told that because the sample came from a peripheral vein, the result was considered “not clinically actionable.” In other words, the system had no protocol requiring it to take a second look.

It took me a while to understand why that silence felt so familiar.

This wasn’t just about one lab test. This was about something much older — a thread that winds through my entire life.

The Shape of a Pattern

Since childhood, I’ve lived with a body that speaks in ways the medical system doesn’t always know how to hear. Symptoms that came and went. Fatigue that seemed out of proportion. Nervous system shifts that didn’t show up on routine tests. A body that reacted strongly to things others brushed off.

What I was experiencing — what I now understand as a mix of trauma responses, autonomic dysregulation, and complex physiology — was hard to name, especially back then. So it was often dismissed. Reframed as stress, as anxiety, as “just being sensitive.” And to be fair, sometimes it probably was those things too. But it was also more.

I don’t think anyone meant harm. In fact, most people I’ve encountered in healthcare have been trying — within the limits they were taught, the time they were given, and the systems they work inside. But over time, being misunderstood — especially when you’re suffering — leaves its mark.

You learn to anticipate not being believed. You get quiet about your pain. You practice being calm and reasonable, because you know anything else might be used to discredit you. You start to wonder if maybe it is all in your head — and then feel ashamed for needing help at all.

That pattern is harder to recover from than people might think.

A Moment That Brought It All Back

So when I saw that 29% value in my records and realized no one had followed up on it, something deep in me recognized the feeling. It wasn’t outrage. It was something quieter. A deep grief. The grief of knowing that once again, something important had slipped through the cracks — and that this time, the system had a rule for why it didn’t need to look deeper.

Rules are necessary, of course. So are standards and best practices. But sometimes, they’re not enough. Sometimes, the most human part of care — the part that asks, “Does this make sense for this particular person, right now?” — gets lost.

When that happens, we don’t just lose information. We lose relationship. We lose trust. We lose a piece of the healing that might have been possible.

Why This Matters

I’m not sharing this to accuse or to shame. Truly, I’m not. I’ve met compassionate doctors, nurses, techs, and caseworkers. Many of them are doing their best inside systems that are stretched thin and pressed hard.

But I also know that there are many people like me — people whose symptoms don’t present in textbook ways. People living with the long echoes of trauma, whose bodies respond with intensity, with unpredictability, with mystery. People for whom the standard tests might not tell the full story.

We need space in healthcare for those stories too. Space for listening when the data is unclear. Space for believing when the answers aren’t tidy. Space for asking again, “What might we be missing?”

That’s what advocacy really is: not fighting the system, but gently reminding it of what’s been forgotten. Not demanding perfection, but asking for presence.

A Hopeful Word

If you’re reading this and something in it feels familiar — if you’ve been overlooked, misunderstood, or quietly doubted — I want you to know you’re not alone.

Your experience matters. Your body’s wisdom matters. And your voice — even if it trembles — belongs in the room.

I still believe in the possibility of healing. I believe in it because I’ve experienced moments of being truly seen, even in difficult places. Those moments are why I keep speaking. Not to make noise, but to make room.

There’s a better way to care for each other. And it begins with listening — especially to what doesn’t fit.

Nigel Lott teaandzen.org