Katharine Cheston discusses the isolation, disbelief and stigma experienced by people with poorly understood medical conditions
Autobiographical accounts of illness tend to follow a similar script. Typically, they open with an interruption: new symptoms render the normal abnormal, precluding what had previously been taken for granted. These symptoms are recounted to a healthcare professional: tests are ordered, examinations requested, referrals made – each producing pieces of a diagnostic puzzle to be slotted together by specialists. Eventually, a diagnosis materialises, functioning both as the key that unlocks a treatment plan, as well as the lens through which the ill person – and, in turn, readers of their illness tale – makes sense of what is to come.
But what if this diagnostic puzzle is not solved? What happens when symptoms persist unabated – fevers continue to flare, pain still shoots and stabs – but tests repeatedly return normal results; when the body remains an opaque mystery, its disease and dysfunction invisible to presently-available medical science? What is it like to experience severe symptoms for which a distinct diagnostic biomarker cannot yet be found?
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