This Is What It Means to Be Undiagnosed

In the land of the undiagnosed, doubt carries a weight like no other.

The doubt of the doctors.

The doubt of friends and family.

The self-doubt we carry inside of ourselves — the doubt that colors all of our decisions, complicates all of our actions, undermines all of our hope for a future.

In the land of the undiagnosed, doubt leaves us flailing and falling — tumbling through an endless cavern, heavy with fear and dread and uncertainty.

For some, that doubt is eventually lifted. A test finally comes back positive. An answer is finally forthcoming. Perhaps that answer leads to treatments — perhaps not — but the answer does something far more important: it confirms what you’ve known all along. It releases the knot of doubt and gives you something concrete to rest your feet on. A firm foundation. A sense of being grounded — of finding a place of certainty.

And certainty? We long for certainty with everything in us, but what if it’s not to be? What if our bodies continue to tell a story to us that doesn’t translate into answers on a test or success with a therapy? What then?

Is it possible to find grounding in the midst of long term uncertainty?

Is it possible to learn to trust our bodies enough that we don’t need the doctor’s and friends and family to understand or to know the truth we hold deep in our cells?

For so many of us this distrust of our bodies isn’t new — it goes back decades, maybe even generations. Trauma has left us raggedly holding on to a sense of “self” and this experience threatens to unravel the final threads. But what if the shame could be lifted? What if we could get to the point where we could know ourselves and trust ourselves and think we have something valuable to bring to the conversation?

Could we possibly get to a place where we could rest in our own lived experience? Grant our bodies a seat at the empirical table?

And if we did, what freedom could we find? What life could we live? What unique perspective could we bring strictly because we’ve lived in the doubt, the uncertainty?

Simply because we are the undiagnosed?