For conditions without biomarkers, the patient’s narrative is not a supplement to the clinical evidence. It is the clinical evidence. This has implications more uncomfortable than medicine likes to admit.
A patient walks into a psychiatrist’s office and reports that they cannot stop washing their hands. There is no blood test for obsessive-compulsive disorder, no scan that lights up reliably, no biological marker the clinician can verify against an external standard. The patient’s account of their own thoughts and behaviours is the diagnostic material. The clinician’s job is to listen, to fit what they hear against a taxonomy of recognised stories, and to issue a verdict on what the patient has.
This is not a marginal feature of contemporary psychiatry. It is, for a substantial portion of mental health diagnosis and for functional somatic syndromes or functional diagnoses, the central operation. Where biology cannot speak directly, the patient speaks for it. The story they tell becomes the symptom under examination.
The question, then, is what happens to medicine when narrative carries this much diagnostic weight, and what happens to patients whose stories do not yet have a recognised clinical shape.
The conditions under which narrative became central
The clinical interest in patient narratives has a specific intellectual history. It grew out of medical anthropology, the sociology of illness, the biopsychosocial model, and later narrative medicine. These approaches challenged the older assumption that disease could be understood purely as a biological malfunction, with the patient’s account treated as secondary, subjective, or unreliable.
The medical model that dominated the first half of the twentieth century assumed that diseases were natural kinds, that they had biological signatures discoverable in principle, and that the patient’s account of their experience was at best confirmatory and at worst misleading. The clinician’s task was to bypass the patient’s report and reach the underlying biology.
This worked, broadly, for conditions with clear pathophysiology. It worked badly for conditions without one. By the 1970s, medical anthropology and the new sociology of illness had begun to argue that the patient’s account was not a flawed window onto biology but a constitutive part of what the illness was. Arthur Kleinman’s[1] distinction between disease, the biological process, and illness, the patient’s lived experience of being unwell, is the textbook articulation of this move. For conditions where disease and illness diverge, or where there is no identifiable disease at all, illness becomes the only thing the clinician can work with.
Narrative is the form illness takes when made communicable. Hence the clinical turn toward listening, eliciting, and interpreting stories: not as a humanistic supplement to real medicine, but as the operative diagnostic instrument when no other instrument applies.
What narrative does for the patient
Within this framework, the patient’s story is doing more than reporting symptoms. It is reorganising a fragmented experience into something coherent enough to be lived with. The medical anthropologist Gay Becker[2], in her work on disrupted lives, observed that how people talk about their bodies during illness tells us about embodiment itself: the connection between the body as experienced and the body as described. The talk is not commentary on the experience, rather it is part of how the experience is constituted.
For conditions involving a sense of self-fragmentation, including psychosis, dissociation, and certain forms of dysphoria, the narrative work can be therapeutic. The patient is not just describing their condition to the clinician but constructing a self that can hold the condition. A coherent story is, for some patients, part of recovery.
This is one of the more useful insights medicine has absorbed from the humanities in the past forty years. It is also where the trouble starts.
What narrative does to the patient
The same cohesive impulse that makes narrative therapeutic also makes it epistemically fragile. Daniel Freeman and colleagues[3] have shown that, in persecutory delusions, attempts to impose meaning on disruptive experiences can help stabilise the delusional structure. Once a coherent story has been built around an anomalous experience, the story becomes resistant to disconfirmation. It is harder to dislodge a delusion that has narrative shape than one that has remained fragmentary.
This is uncomfortable. The very feature that makes narrative therapeutically useful, its cohesion, is also what can make it diagnostically untrustworthy. The patient who can tell a coherent story about their condition is not necessarily reporting more accurately than the patient who cannot. They may be reporting more fluently, which is not the same thing.
There is a second discomfort. The clinician listening to the narrative is not a neutral instrument. They have a taxonomy in mind, a set of recognised stories against which the patient’s account will be compared. The metaphors the patient reaches for, the framings they offer, the causal explanations they propose: all of these are filtered through what the clinician has been trained to find legible. The bargaining between patient and clinician over what the story means is, in practice, asymmetric. The clinician decides which stories count.
This asymmetry is sometimes useful. Patients reach for metaphors that mislead them, and a trained listener can redirect. But the same asymmetry permits the clinician’s interpretive authority to do work that has little to do with diagnosis: enforcing cultural expectations about how distress is supposed to look, refusing recognition to stories that do not fit prior templates, reading conformity to the expected narrative as evidence of authenticity, and divergence as evidence of fabrication.
The patients whose stories are not yet templates
The cost of this arrangement falls hardest on patients whose conditions do not yet have an institutionally settled narrative form. They face a double problem. First, their account cannot be matched against a recognised template, because no template exists. Second, the clinician’s interpretive apparatus is calibrated for the templates that do exist, and the new account will tend to be assimilated to whichever existing template it most superficially resembles, often badly.
Body Integrity Dysphoria sits squarely in this position. People with BID describe their experience in remarkably consistent terms: a particular limb has felt foreign for as long as they can remember, the desire to remove it does not respond to therapy, and the imagined post-amputation body is the one they have always understood themselves to have. The narrative is coherent. It has the cohesive features that, in other diagnostic contexts, would count in its favour.
But there is no settled clinical template for what this narrative is supposed to represent as a symptom. The condition was included in the International Classification of Diseases in 2019 and came into diagnostic effect in 2022, with no established aetiology and no agreed treatment. Clinicians evaluating BID accounts have available to them, at present, only the templates of adjacent conditions: body dysmorphic disorder, factitious disorder, paraphilia, dissociation, or cultural contagion through internet exposure. The BID narrative gets mapped onto whichever of these the assessing clinician finds most plausible, with consequences that follow from the mapping rather than from the narrative itself.
This is not a failure of individual clinicians. It is what the system does when a new kind of story arrives before a place has been made for it.
The honest description
Narrative-based medicine is unavoidable for conditions where biology cannot speak directly, and the gains in patient-centred care that have come from taking patient stories seriously are real. But the arrangement carries epistemic risks that biomarker-based medicine does not, and the risks fall asymmetrically on patients whose stories do not yet have institutional templates. These patients are not refused recognition because their stories are incoherent. They are refused recognition because the apparatus that adjudicates coherence has not yet learned to read them.
The honest description of contemporary psychiatric and dysphoric diagnosis is that it relies, in significant measure, on whether a patient’s account can be assimilated to a recognised pattern of trouble. This is unavoidable. It is also not neutral. Knowing that it is not neutral is the beginning of being able to revise it.
[1] Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition, Second edition (Basic Books, 2020).
[2] Gaylene Becker, Disrupted Lives: How People Create Meaning in a Chaotic World (University of California Press, 1997).
[3] Daniel Freeman et al., “A Cognitive Model of Persecutory Delusions,” British Journal of Clinical Psychology 41, no. 4 (2002): 331–47, https://doi.org/10.1348/014466502760387461
Essay adapted from my book Body Integrity Dysphoria and the Ethical Dilemma of On-Demand Amputation. Redefining Wholeness: Identity, Autonomy, and the Moral Boundaries of the Human Body
More writing at leandroloriga.com