In the In-Between
How diagnoses shape me...and how they no longer define me
Toward the end of my endometriosis excision surgery, one of my surgeons found my mom in the waiting room.
He told her they’d found *a lot* of lesions.
My pain had a clear cause, I’d been right all along, and I would finally start to feel relief. My mom cried. I did too, later, when I heard. It was a strange kind of vindication, reinforced by both grief and relief.
I’d been waiting longer than I even realized for a name to match the pain. My suspicions about endometriosis only solidified less than a year before surgery, but the search had started long before that: years of appointments, protocols, and labels like “IBS” that felt like placeholders, thrown out to see if they’d stick. Each one offered partial context but never the full picture. I’d gone through many rabbit holes in attempt to name what I was feeling in my abdomen, to give language to something my body had been trying to tell me for years.
Endometriosis is an especially interesting example, because a true diagnosis wasn’t possible until that laparoscopic surgery. Unless it’s late-stage, imaging often comes back clear. For a long time, I had to believe in something that couldn’t yet be proven.
But why would I want a diagnosis?
Unless you’ve navigated the limbo of being symptomatic and not finding language around it, it may not make a ton of sense.
At the beginning, a diagnosis can feel like safety. It gives shape to what feels like chaos, language to what appears invisible. It can open doors, grant legitimacy, make the story land, carve a path forward. It can make you feel less alone. There are others like me, you think. Finally, something makes sense.
I used to organize my life around finding diagnoses: the appointments, the protocols, the research, the words that helped explain myself to other people. They gave me shape when the medical system didn’t know what to do with me.
Yet over time, I started to feel myself hovering somewhere in-between: not fully identifying with these conditions, but not without them either. I’m not “healed” in the conventional sense, but I also don’t feel defined by illness.
There’s a strange in-between space that opens up there: between being someone with and someone beyond. Between validation and limitation. Between being seen and being confined. That’s where I’ve been learning to live lately.
Diagnosis as a double-edged sword
There’s a strange power in naming something. It can change how others see you… and how you see yourself.
But naming doesn’t always equal understanding.
I think about a family member of mine. He once had an acute health episode that sent him to the hospital. They ran a few tests, quickly settled on a diagnosis, and added it to his chart. Now every doctor he sees orients solely around that one label — a shorthand that doesn’t really even fit, yet still defines the conversation. It’s easier for the system that way, maybe. Simpler. But it misses the person behind it.
Labels make things easier to organize, not necessarily truer. They can help us access care, yes, but they can also become walls, limiting the complexity of what’s actually happening inside a body, or a life.
And still, I understand why we reach for them. A name gives us something to hold when the experience feels formless.
But it also invites a question I keep returning to: what happens to all the experiences that don’t fit neatly into language? The sensations, shifts, and subtleties that resist being written down? Are they any less real?
The limitations of labels
Over time, I realized I’d built much of my world around collecting words that could never hold the full story.
Endometriosis, hEDS, POTS, MCAS, chronic Lyme, autoimmunity, etc… they each offer partial truths but not the whole picture. Sometimes I don’t experience what a diagnosis “expects” me to. Other times, I struggle with symptoms that live outside of any of my diagnostic frameworks. Both sides of this tension — what fits, and what doesn’t — remind me that lived experience can’t always be boxed.
When someone asks what I’m managing, I still hesitate. The list feels both too much and not enough.
For a long time, I tried to find belonging inside each title. But none of them fit quite right. The spaces between them began to feel more honest than the definitions themselves.
I don’t resonate with the binary of “sick” versus “healed.” I live somewhere in-between: not without these conditions, but not entirely defined by them either.
As I’ve written in I Contain Multitudes, chronic illness is a part of me, not my whole story. It shapes me, but it does not define me.
These days, I care less about how my experience is labeled and more about how it feels. How my body communicates before language intervenes.
The diagnoses absolutely still serve a purpose in certain rooms: they grant access, attention, and proof. Without them, I might not be in this place where I can pay them less attention. But they no longer feel like the truest translation of my life.
Beyond language
There are parts of experience that resist being named. Sensations that appear and vanish before I can describe them, shifts that escape explanation, intuitions that can’t be reduced to a test. For years, I thought these unnamed moments were less real, less credible. Now I see them as essential.
We often equate reality with language. A diagnosis, a label, a proof point. They make things legible to others. But that isn’t the same as truth. The body doesn’t wait for words to validate what it feels.
Much like I wrote in Lessons from a Month Without Mirrors, I’ve learned to witness my body’s cues without needing external validation. Words, like visual evidence, can’t always capture our truth.
This tension isn’t unique to illness. We do it with identity, with emotion, with healing, even with relationships. We try to fit life into tidy boxes for understanding, for control, for simplicity. And yet life refuses to be neat.
If I were to talk to myself five years ago, she would notice how I’ve grown softer toward complexity. The unnamed experiences aren’t gaps; they’re part of what makes the story whole. They teach me to listen more closely, honor subtlety, and trust what can’t always be put into words.
“The kind of truth that heals is known by its felt sense, not only by how much ‘sense’ it makes”
Dr. Gabor Mate, The Myth of Normal
In-between
I still carry my diagnoses: endometriosis, MCAS, POTS, hEDS, the long list of markers and labels that have accompanied me along the way. They matter, especially in navigating care, and they’ll always be part of my story. But they no longer define the limits of it.
What stays with me most is the language of my body, the sensations and shifts that speak before words, the truths that live between the labels.
I’m learning to inhabit that in-between space fully: not only someone with a condition, but someone beyond it. Not only defined by what can be named, but shaped equally by what cannot.
Naming may open doors, bring validation, and build bridges, but listening, really listening, is where understanding begins. And in that listening, I find the space to belong to myself again.
“There is sickness here, but I am not sick”
Toni Bernhard