literary journalism

‘The Lady’s Handbook for Her Mysterious Illness’

‘Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,’ wrote Susan Sontag in Illness as Metaphor. While each of us will visit the kingdom of the sick, some will unfortunately endure extended stays.

Sarah Ramey, a musician who performs under the name of Wolf Larsen, suffered a decade-long saga of illness, beginning with a urinary tract infection, caught in Walden Pond, in her last year at university. When the infection did not respond to antibiotics, Ramey was launched into a mind-boggling succession of misdiagnoses and mistreatments. The first intervention, billed as a simple in-patient procedure by a pre-eminent urologist, sent Ramey to A&E with sepsis a few hours later. Her health deteriorated following this traumatic episode, which left her with debilitating spinal, abdominal, ovarian, vaginal and bladder pain.

The book follows Ramey’s rollercoaster ride, as rising hopes at each diagnosis rapidly give way to despair. She is repeatedly told by doctors that her symptoms are ‘all in her head’ and prescribed antidepressants. It’s no comfort that she’s in good company. ‘At a very low estimate’, writes Ramey, one in four American women is what she dubs a WOMI – a woman with a mysterious illness. These mysterious illnesses include autoimmune diseases, fibromyalgia, chronic fatigue, Lyme disease and chronic pain, all of which ‘have mistakenly come to be seen as the telltale signs of a woman who can’t cope with the pressures of real life’.

Recent books such as Caroline Criado Perez’s Invisible Women (2019) have exposed medical bias against female patients. But Ramey believes that bias is one of a handful of factors contributing to the routine dismissal of mystery illnesses in women. One of the problems is their invisibility: patients don’t look sick, and available tests are too crude to prove that something is amiss. It’s a chicken-and-egg situation, she writes: ‘You can’t get funding to research a disease that is not considered serious or real, but a disease is not likely to be considered serious or real if there is no good research or clinical trials associated with it.’ (Lyme disease, for example, only started to be taken seriously once it became easily detectable through improved testing.) Symptoms are often vague and overlapping, and sometimes – importantly – give rise to shame, being ‘too unpalatable for any awareness campaign, too unsexy to start a blog, too vago-uro-colo to merit a ribbon or a million-mom march’…

Read the full article online in the Literary Review

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