Why did no one diagnose my sister’s TB?

In 2016, Arifa Akbar’s elder sister, Fauzia, died suddenly in the Royal Free Hospital, London at the age of 45. Until the last hours of her life, the cause of her coughing, chest pain, night sweats and breathlessness had eluded a series of baffled experts. But you do not need a medical degree to hazard a guess at what might have been behind these symptoms. From Keats’s famous death to the consumptive heroines of 19th-century opera, spots of blood on a handkerchief were all that was missing to complete the picture. Only after Fauzia had a catastrophic cerebral haemorrhage, however, did someone think to test a sample of her spinal fluid for tuberculosis. It was positive. Sense came too late. The mycobacteria had disseminated through her organs and were nesting in her brain.

Diagnoses are stories; why had the doctors not thought of this one? TB is not a disease of the past, however mythologised it has become. Fauzia’s marginal existence in north London, the squalid conditions of her upbringing, malnourishment, her Pakistani heritage and several mental health conditions made TB more likely. But these stigmatised characteristics about a patient make bias and oversight from clinicians more likely too. Did Fauzia die because of a dereliction of duty, or despite the best efforts of flawed caregivers?

It is a question which haunts this extraordinary book, as Akbar agonises over the ways in which Fauzia was let down in life as well as death. ‘A part of me had always held myself responsible for failing to stay and find a solution for her,’ Akbar writes, having left for Edinburgh university and then a successful career in journalism, while her sister remained in the family flat, gripped by depression and a vicious eating disorder.

The sisters shared a bond not because of, but in spite of, belonging to the same place and parents.