The missing words by Paula Bartlett

Medicine is extraordinarily good at naming what it can measure. It is less comfortable with what patients can feel but instruments cannot yet neatly capture. For people living with conditions such as Long COVID or fibromyalgia, it can become a form of social and medical exile.

Call it a hermeneutical lacuna: a hole in the language available for making sense of an experience. When the vocabulary is missing, the experience does not disappear. The patient simply becomes harder to understand.

A patient arrives with exhaustion that is not ordinary tiredness, pain that moves unpredictably, cognitive fog, dizziness, disrupted sleep or a body that seems to have rewritten its own rules. The doctor looks for a familiar pattern. The laboratory looks for a measurable abnormality. The system looks for a box.

And the patient, inconveniently, may not fit inside one. There is a dangerous temptation to assume that what cannot be adequately explained cannot be adequately real. Medicine may not say this, but patients can hear it in the raised eyebrow, the hurried consultation, the suggestion that stress is the culprit, or the implication that anxiety has manufactured an illness.

The problem is not that doctors lack compassion. Many work inside systems that reward certainty, speed, measurable outcomes and recognizable diagnoses. The deeper problem is conceptual. Medical language has been successful at describing disease as something that can be located, tested, classified and treated. Chronic illness often behaves differently. It can be fluctuating, multisystemic, subjective and resistant to neat boundaries.

That creates an epistemic inequality. The clinician possesses the official vocabulary; the patient possesses the experience. When the two do not meet, the clinician's language usually wins.

This is troubling because diagnosis is not simply a technical label. It is social permission. A diagnosis can explain absence from work, justify disability, open doors to treatment and tell a suffering person: you are not imagining this. Without that recognition, patients are often forced into the absurd position of becoming prosecutors of their own bodies, collecting symptoms, charts, diaries and testimonies in an attempt to prove that they exist.

The irony is almost unbearable. Patients with poorly understood illnesses are frequently told that they need evidence, while the evidence they can provide, their account of living inside their own bodies, is treated as somehow inferior.

The answer is not to abandon scientific rigour or declare every unexplained symptom a disease. The answer is to enlarge medicine's conceptual imagination. Uncertainty should not automatically become disbelief. A negative test should mean that one particular thing was not demonstrated, not that nothing is wrong. A patient's inability to describe an experience in clinical terminology should not be mistaken for an inability to know it.

Medicine needs better instruments. But it also needs better words. The history of medicine is filled with conditions that were once poorly understood and later became intelligible. Ignorance should be treated as a temporary limitation of knowledge, not as a verdict on the credibility of the person suffering.

Long COVID, fibromyalgia and similar chronic conditions expose a weakness: the arrogance of believing that reality must become legible to institutions before it deserves recognition in the first place. Sometimes the patient is not failing to explain the illness. Sometimes medicine simply has not learned the language yet.