Kees van Boven worked 32 years as a general practitioner in Franeker. He was the chair of the FaMe-Net (Family Medicine network), a merger of the Transition Project and the Continuous Morbidity Registration Nijmegen, Netherlands.
Why medicine must stop equating uncertainty with illegitimacy
Modern medicine is remarkably effective at identifying disease. Yet when symptoms persist without a clear diagnosis, it often falters—not because knowledge is lacking, but because legitimacy quietly evaporates.
Persistent pain, fatigue, dizziness, breathlessness, or cognitive complaints are among the most common and disabling reasons for healthcare use worldwide.
In clinical practice, normal test results are rarely neutral. When investigations fail to reveal pathology, the unspoken message to patients is often clear: medically speaking, there is nothing wrong. What remains is discomfort—experienced by patients, but also by clinicians, who are trained to resolve uncertainty rather than inhabit it. Too often, that discomfort is managed by subtly downgrading the reality of the patient’s experience.
This is not a marginal problem. Persistent pain, fatigue, dizziness, breathlessness, or cognitive complaints are among the most common and disabling reasons for healthcare use worldwide. They are real, burdensome, and frequently resistant to straightforward classification. Yet when disease models fail, so too does medicine’s willingness to fully recognise suffering.
Legitimacy tied to pathology
In practice, medicine often operates with an implicit rule: symptoms are fully legitimate only when anchored in demonstrable pathology. Imaging, biomarkers, and physical findings do not merely guide diagnosis; they function as moral arbiters of credibility.
Patients who cannot produce such evidence drift into a grey zone labelled “functional,” “psychological,” or “medically unexplained.” These terms may appear descriptive, but their effect is often dismissive. For patients, they can feel like a withdrawal of belief. For clinicians, they offer a way out of uncertainty.
But this is not resolution—it is displacement. The burden of uncertainty is shifted from the profession to the patient.
What normal tests actually do
Normal results do more than exclude disease. They shape clinical relationships, determine access to care, and subtly reassign responsibility for ongoing symptoms. When nothing is found, patients are often left to manage not only their symptoms, but the implication that these symptoms are somehow less real.
Imaging, biomarkers, and physical findings do not merely guide diagnosis; they function as moral arbiters of credibility.
Conditions such as myalgic encephalomyelitis/chronic fatigue syndrome and Long COVID illustrate this dynamic starkly. Patients experience profound limitations, yet face a healthcare system that struggles to acknowledge what it cannot easily measure. The resulting mistrust is not a failure of communication, but a predictable outcome of a system that equates legitimacy with detectability.
Clinicians, too, are caught in this bind. Uncertainty is readily experienced as failure. And failure sits uneasily with professional identity. Faced with this tension, medicine often fills the gap with labels, reassurance, or implicit attributions to stress, coping, or resilience.
Symptoms are not lies
Yet we know better. Symptoms are not direct readouts of tissue damage. Pain, fatigue, or breathlessness emerge from complex interactions between bodily signals, prior experience, attention, and context. This does not make them less biological. It makes them less reducible.
All experienced symptoms are biologically real, whether or not a discrete lesion can be identified. Importantly, this understanding does not imply that symptoms are imagined, nor does it justify shifting responsibility for recovery onto patients. Explanation is not control. Understanding is not blame.
What it does undermine is the assumption that absence of evidence equals absence of legitimacy.
An ethical, not technical, problem
The core issue here is not diagnostic sophistication, but professional posture. Medicine has become adept at managing disease, yet remains uncomfortable when disease models fail. In these moments, clinicians face a choice: to remain present with uncertainty, or to resolve it prematurely by reclassifying the patient.
Saying “we don’t know” should not mark the end of care. Nor should it signal a retreat from recognition. Yet in practice, it often does.
This calls for a shift in professional norms. Not every symptom requires a diagnosis. Not every uncertainty needs a label. Sometimes, the most responsible clinical act is to acknowledge the limits of explanation without withdrawing moral or clinical commitment.
What should change
First, clinicians must disentangle uncertainty from illegitimacy. Normal tests exclude certain diseases; they do not invalidate suffering.
Second, healthcare systems should resist using diagnostic closure as a prerequisite for care. Support, follow-up, and rehabilitation should not depend on finding the “right” label.
Featured Photo by Bernard Hermant on Unsplash
