What diagnosis can or can not do!

During Mental Health Week, I would like to highlight the power words can have over the way we understand ourselves, anticipate our future, and imagine what remains possible.

Labels often do more than describe a reality. Sometimes, they subtly suggest a future.

And this made me think more deeply about diagnosis itself.

I have observed how, for some people, everything seems to freeze around the search for a diagnosis. The focus becomes obtaining the label. A process that can evolve into a long, difficult, and frustrating journey, especially for people living with a rare disease. In medicine, this experience is often referred to as the “diagnostic odyssey.”

I’ve wondered why this search can carry such emotional urgency. Is it because we believe a diagnosis will finally make sense of things, bring clarity, or set direction? Is it because uncertainty is uncomfortable, and we assume that once uncertainty ends, comfort will follow? Is it about the difficult emotions we face that are underneath that urgency? Is it about categorizing, or belonging to an identifiable group?

I think, more than anything, it is because we believe decisions will finally become easier. That once something is named, we will know how to move forward.

And when names start to appear, for a short time they do bring relief. They bring validation; a confirmation that the experience is real.

But then I noticed, very little actually changed. Pain and limitation still must be negotiated, often without predictable patterns or common rules. Decisions still must be made about what matters enough to pursue, what needs to be adapted, and what ultimately must be let go of. Even energy itself can become something that required ongoing calculation from one day to the next.

It became clear to me, that the diagnosis helps explain what might be happening in the body or in the mind. It helps articulate parts of the experience. But it does not necessarily explain or predict how to live with it.

Over time, I realized how much we ask diagnoses to do. We ask them not only to name a condition, but also to restore direction, confidence, certainty, and clarity. When that does not happen, the continued struggle can feel disappointing, confusing, or even discouraging.

But diagnosis was never designed to answer how do you plan a life when you are challenged or your capacity fluctuates?! That question remains, whether a diagnosis arrives or not. A diagnosis can explain, classify, validate, guide care and help estimate possible outcomes. But it was not designed to provide meaning, to shape your identity, to determine your sense of agency, or offer a complete roadmap for living

And strangely, this realization becomes quietly freeing. It means one does not have to wait for certainty before beginning to adapt.

Sometimes, the work of moving forward remains fundamentally the same with or without a name or a label. And perhaps this is where agency begins.

Not in controlling every condition or eliminating every uncertainty, but in learning how to respond, adapt, choose, and continue becoming within reality as it exists.