I’m back home again, after a few weeks caring for my mum in the wake of her knee injury. She’s been making great progress in her voyage back towards the kingdom of the well – you should see her walking round the kitchen island. We’re still not sure, though, what it is that she’s making her recovery from. It is not for want of trying.
There was an X-ray at A&E – no bones broken. Days of private pain, as we worked out how to help her stand, and move, and sit down again with a minimum of agony. Then an appointment at the local GP surgery, with a physiotherapist who did not hear her words. “It is not a ligament,” he informed her, as she cried, and he printed out a sheet of instructions for squats and lunges, for a woman who had entered his office with a Zimmer frame. “That is good news. Why aren’t you happy?”
After a series of calls, she found a different physiotherapist at the hospital, who was kind. She will check in with him again in a few weeks, and attempt nothing even resembling a lunge in the meantime.
No one seems inclined to investigate further – to piece together a narrative that can take my mum from a sore knee to hearing a sickening snap while descending the stairs, which left her unable to stand, and in the worst pain she has felt since childbirth. The first physio’s assessment was that she has been walking the dog too much; the second’s: sometimes joints do make very loud noises.
The plural of anecdote, they say, is not data. Still, I will add this to the mental file I keep of Every Woman I Have Ever Known and the Times Their Pain Has Not Been Taken Seriously. Subcategories include “they weren’t normal period cramps, that’s endometriosis”; “is it normal tiredness or is it an autoimmune disease?”; and “the back pain you told my friend to keep competitively rowing through was several fractured vertebrae, which you would have known sooner if you hadn’t dismissed her pleas for a scan as hysterical”.
There is data, though. Study after study showing that women are less likely to have the pain we report taken seriously, wait longer to be treated, are more likely to die as the result of misdiagnosis. To be fair, I do sometimes feel utterly hysterical about it.
For a long time, I thought my problem of not being heard could be fixed by finding new ways to explain myself. It did not occur to me that my words were not being registered as a reliable account of reality. Or that articulacy might bring problems of its own. “You’re very articulate about it!” I remember being told by a well-being practitioner when I was a university student, near-dysfunctional with anxiety and depression, and trying to access NHS therapy. Both as if it marked me out as odd or precocious, and as if being able to name my distress precisely made the distress itself lesser.
A few years ago, I spent the better part of a week unsure of what had gone profoundly wrong with me. I could not work out where or what was hurting. I became strange. I hid in my flat out of animal instinct. When I finally went to hospital, it turned out I had appendicitis. You can imagine how madly vindicated I felt about that, because, having done my best to describe my pain to a surgical registrar who was cheery to the point of hostility, the last thing they said to me before I was wheeled to my ultrasound was, “I’ll tell you one thing for certain: it’s not appendicitis.” How do you know, I asked. If it was that, they said, I would not be sitting up chatting with them about the atypical presentation of appendicitis.
It always feels inadequate, though, to wrestle with language in putting into words the private experience of illness. “Considering how common illness is… how astonishing,” thought Virginia Woolf, “it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.”
I’ve been rereading one of my favourite chroniclers – of illness and otherwise – recently: The Journal of a Disappointed Man by WNP Barbellion (pseudonym of the naturalist Bruce Cummings, who died from multiple sclerosis in 1919, aged 30). It’s as funny as it is moving, by turns Franz Kafka and Adrian Mole. “Am writing an essay on the life-history of insects and have abandoned the idea of writing on ‘How Cats Spend Their Time’,” reads the opening entry, its author “a little over 13 years old” in 1903. It is brilliant.
[See also: Women shouldn’t have to depend on loyalty cards for a diagnosis]
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This article appears in the 17 May 2023 issue of the New Statesman, The Left Power List