Hospital and the Failure of Language
In October 2016, Susanna Clarke found herself in a hospital ward, 11 years into a battle with chronic fatigue syndrome. A sudden crisis had overtaken her: she could barely eat, trembled violently, and was overwhelmed by dread at night. When a consultant gastroenterologist asked her to describe her condition, she could only say she felt 'very ill.' The doctor pressed for more detail, but Clarke, a prize-winning novelist, found herself unable to articulate the anguished, pressurised sensation—a mix of burning and falling—that had become her constant companion. She felt angry, wondering why such a familiar feeling had no name.
Clarke recalls Virginia Woolf's essay On Being Ill, where Woolf notes how language runs dry when a sufferer tries to describe pain to a doctor. Clarke wanted to say she felt like she was 'about to fall off the world,' but knew that wouldn't help. Doctors need physical descriptions, but illness often blends physical, emotional, and spiritual strands that are hard to separate.
The Body's Constant Intervention
Woolf wrote, 'All day, all night the body intervenes.' Clarke agrees: the body speaks constantly, but not in a language we easily understand. Illness exposes the limits of words, reminding us that experience always exceeds our ability to describe it. Dreams, meditations, transcendent moments—all evaporate unless captured. Clarke cites Julian of Norwich, who at 30 had a severe illness and experienced visions of God. She spent the rest of her life trying to distil those visions into understandable form, writing two versions.
In On Being Ill, the invalid seems almost delighted, floating like a stick on a stream, watching clouds mutate above a London unaware of its beauty. Clarke found a similar insight during her illness: a world of endless beauty exists regardless of observers. But while Woolf saw this as evidence of the universe's indifference—'divinely beautiful it is also divinely heartless'—Clarke and her character Piranesi see it as proof of a universe intensely bound up with its creations. Piranesi's chief task is cataloguing the world's wonders, believing 'the Beauty of the House is immeasurable; its Kindness infinite.'
Intellectual Freedom in Illness
Woolf's happy invalid gains intellectual freedom, cut off from the busy world and free to read Shakespeare in a new way, unshackled from others' opinions. Clarke notes that illness takes you into an underworld where what people say above matters less, freeing scholars, saints, musicians, and artists. She recalls Kathy Acker (or someone from the 1970s) describing a nocturnal writing existence to be free from others' thoughts.
While language runs dry in one sense, it is desperately needed in another. Clarke remembers a young woman in a discussion group saying she couldn't get better until she could tell herself a story about what happened to her. This struck Clarke as an important truth. She gives the example of an elderly woman with neck aches who always told herself the pain came from sitting in a draught. The narrative made the illness seem rational and gave her a sense of control.
Narratives of Chronic Illness
For chronic illnesses like fibromyalgia, chronic fatigue, long Covid, and others, doctors often have no clear treatment. There is no drug to restore you to who you once were—only narrative. Clarke knows how grateful patients feel to a doctor who provides a narrative, and how angry they become when another doctor threatens that narrative. As a writer with a long illness, Clarke can produce countless narratives: a revengeful one blaming publishers for book tours, a zoological one about Lyme disease from a tick bite, a fairytale one about fairies exacting revenge, or a childhood-adversity one about being told she didn't deserve success.
Clarke pauses on the childhood-adversity narrative, noting she wasn't the only girl of her generation told that. Her comprehensive school on a Bradford council estate produced only one other writer, Andrea Dunbar, a playwright who died at 29 from a brain haemorrhage possibly linked to alcoholism. Clarke's best friend, a talented musician with a hit record, died before 40. 'You see, from one point of view, I got off lightly,' Clarke writes.
The Story of Cure
If illness can be a story, so can the cure. Clarke points to interrelated therapies like pain reprocessing, somatic tracking, and polyvagal theory. The idea is that in some people, a primitive part of the brain detects danger and produces pain or symptoms to get the sufferer to shut down. This can continue for decades. The story that the world is fraught with danger can be countered by a different story: the world is dangerous, but not everywhere, not always, not here and now. 'You are safe.'
Clarke concludes: 'So this is my narrative now, the story of how I got ill—and perhaps, if I pay careful attention to it, I will be able to retrace my steps through the labyrinth of my own body and return to safety.' This essay was originally commissioned for Charleston festival.
