Dear Colleague,

It has been a while. I had hoped to return with news — a publication to share, a milestone to celebrate, something that would justify the silence. The work is still in motion, and I will share more when the time is right. For now, I want to share something that has been sitting with me — something that feels worth saying regardless of how the rest of it unfolds.

There is a recurring theme in the phenomenological literature on persistent dizziness — one that is difficult to read and harder to dismiss. Patients, in their own words, describe feeling unheard. Invalidated. Dismissed by the very people charged with their care. This is not anecdote. It is a finding (Gamble et al., 2023).

I have spent considerable time over the past several years trying to articulate why this matters — not just clinically, but theoretically. If the lived experience of the person with dizziness is characterized by invalidation, then any framework that does not explicitly account for that experience is, by definition, incomplete. You cannot treat what you do not see. And you cannot see what you have decided, in advance, does not require looking.

Recently, in the course of trying to get this idea formally heard — through the peer review process — I encountered a perspective that stopped me in my tracks. It came from a researcher who felt that the lived experience of patients was already well accounted for in existing practice. As evidence, they offered this: we ask patients if they are dizzy before we put them in the scanner.

I have been sitting with that sentence for a while now.

It is not offered here as a criticism of any individual. It is offered as a mirror. Because that sentence — earnest, confident, and entirely missing the point — is precisely what the phenomenological literature is describing. The clinician, the researcher, believes they are listening. The patient does not feel heard. Both are telling the truth.

This is the gap. Not a gap in technology or technique. A gap in perspective. A gap between the third-person view of a condition and the first-person experience of living with it. Between the scanner and the person inside it. Between asking are you dizzy and understanding what it means to wake up every morning uncertain whether the ground beneath you will feel like ground.

What strikes me — and I mean this with genuine curiosity rather than frustration — is how reliably this gap reproduces itself. The argument that patients are already seen, already heard, already accounted for, tends to come from people who have not asked them. And when the literature is cited — the actual words of actual patients — the response is sometimes to question the literature rather than the assumption.

There is something almost fractal about it. The phenomenon we are trying to describe keeps demonstrating itself in the act of describing it. We, like our patients, find ourselves looking for someone to listen — without presumption, without a predetermined conclusion about what they will find.

The peer review process, at its best, is that listener. A place where ideas are heard on their merits, where the evidence is weighed openly, where the lived experience of the work — the years of thinking, reading, collaborating, and caring — is met with genuine curiosity. At its worst, it can reproduce the very dynamic it is meant to correct.

I don’t raise this to despair. I raise it because I think it points to something important about the work ahead — not just for those of us interested in dizziness, but for anyone trying to bring a humanistic perspective into a field that runs, understandably, on measurement.

The scanner has its place. So does the story.

The question is whether we are willing to let both count.

Thank you for doing the important work of listening — and I don’t mean just reading this post.

I will be in touch.

Marc

Reference

Gamble, R., Sumner, P., Wilson-Smith, K., Derry-Sumner, H., Rajenderkumar, D., & Powell, G. (2023). Using interpretative phenomenological analysis to probe the lived experiences of persistent postural-perceptual dizziness (PPPD). Journal of Vestibular Research, 33(2), 89–103. https://doi.org/10.3233/VES-220016