My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’

At the Croydon secondary school I attended in the late 1990s, the deputy headmistress was a stocky woman with a military haircut who patrolled the corridors in voluminous outfits patterned in shades of brown. The outfits were much discussed, not charitably, by the teenage girls in her charge – as was her voice, which made you think of a blunt knife being drawn across a rough surface. Thirty years later, I can still hear that terrible voice refer to my “mystery illness”. In truth, the deputy headmistress never actually spoke those words – they were included in a typed letter she sent to my parents concerning my prolonged absence from school. Still, the indicting force of five syllables is as distinct in my ear as if she were looming over me.

I was 11 and, after coming down with a normal-seeming virus, I simply hadn’t got better. Instead, my system seemed to have become stuck, sunk into some grey, unchanging state. I had a headache, a sore throat and swollen lymph nodes, body pains both dull and sharp, fatigue and weakness, plus something I later learned went by the name of “postural orthostatic tachycardia syndrome”: a faintness and momentary blacking out upon sitting or standing up. When I list the symptoms in this way, as a collection of discrete and manageable items, it seems false. I wish things felt discrete and manageable. Instead, being ill felt – and still feels – more like a thick, obscuring cloud. When that cloud descends, my blood feels like old glue mixed with whatever you’d scrape off the bottom of a Swiffer. During bad episodes, I can’t quite locate my mind, or my personality. Reading is impossible. TV is abrasive. Breathing feels effortful, forming words is a strain.

For a shy and authority-fearing 11-year-old, none of this was easily communicated. The most legible symptom was the headache, so this was the diagnostic route pursued. Something called “benign intracranial hypertension” was inconclusively floated, then dropped. (Whatever was happening, I resisted the idea that the word “benign” applied.) Meanwhile, the implication of the deputy headmistress’s letter to my parents was clear: their daughter needed to stop this nonsense and get back to the pursuit of academic excellence.

Clearly, I’m casting the deputy headmistress as a Roald Dahl-ish villain, a Miss Trunchbull to the self-serving vision of myself as tiny Matilda. But she wasn’t wrong to refer to it as a mystery illness – a phrase she perhaps didn’t even mean unkindly. After all, the condition has remained something of a mystery, as chronic illnesses often do, even after diagnosis. I’ve gone half-mad wondering what’s within my control and what’s not, whether it’s delusional to believe I can get fully better, or defeatist to think I can’t.

I can’t say with certainty that any medical professional ever came out and uttered the phrase “it’s all in your head”. But for decades – first in the suburbs, then London proper, then New York where I moved in my mid-20s – doctor after doctor essentially told me there was nothing physically wrong with me. The sexism of western medicine, an institution that’s taken the male body as its test subject and often dismissed female patients, is now (finally) a recognised problem with its own name: “medical misogyny”. (The phrase was a finalist for the Macquarie Dictionary word of the year for 2025, though it was trounced in the end by “AI slop”.) But 10 – and certainly 20 – years ago, this prejudice was far less acknowledged.