My battle with chronic fatigue syndrome: 'On my worst days it feels demonic'

When I fell ill at 11 after an ordinary virus, my school sent my parents a typed letter that named my prolonged absence a “mystery illness.” I had a headache, sore throat, swollen lymph nodes, body pains and a faintness on standing later identified as postural orthostatic tachycardia syndrome.

The illness never felt like a set of discrete symptoms but like a thick, obscuring cloud: my blood felt like old glue, reading was impossible and sometimes I couldn’t quite locate my mind or my personality. Doctors repeatedly looked at normal test results and told me I was fine, or offered glib advice to eat more vegetables.

For years their literal reliance on numbers left me feeling disbelieved, and I found myself asking whether I was acting or whether my reality simply wasn’t being recognised. The sexism in western medicine, now more widely discussed as medical misogyny, only compounded that sense of being dismissed.

chronic fatigue, chronic illness, tachycardia, brain fog, post-viral, medical misogyny, misdiagnosis, faintness, lymph nodes, sore throat