Dx: Diagnosis and Writing
Benign:
On a Writing Existence
Georgia Poplett
Gil·â€‹bert’s Syn·â€‹drome [zhÄ“l-ˈberz-ˈsɪndrəʊm] / noun
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an inherited disorder where the liver does not deal with bilirubin [a yellow-orange bile pigment mainly formed from the breakdown of hemoglobin] [1] correctly [2]
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for my sixteenth birthday, my mother paid for me to have my colours done. I sat in an ergonomic chair while the stylist draped one square of fabric after another across my front. ‘A jewel winter,’ she diagnosed at last. ‘Your best colours are high contrast tones, especially dark emerald or scarlet red. And for God’s sake, never, ever wear yellow.’
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mild JAUNDICE may occur after upper respiratory infections or other feverish illnesses. All other tests of liver function are normal. The syndrome, which is due to slow clearance of bilirubin from the body, is harmless and requires nothing more than diagnosis and reassurance [3]
Georgia Poplett, The Molecular Structure of Unconjugated Bilirubin, 2023.
Pyrrole 1. Etymology.
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I was born jaundiced, so my mother says, but a short stint on a windowsill sorted that. Of more concern was the fact that she was jaundiced, and fitting, and swollen. She was deeply unwell, in the grips of a rare (and, in 1997, often fatal) liver and blood clotting disorder called HELLP Syndrome. [4] After two weeks in hospital, the consultant said he was going away for the weekend. And if she wasn’t showing any signs of improvement by Monday, he would blue light her up to intensive care.
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All through that weekend and into the following week, my mother gave her liver a talking-to, commanding it to pull its finger out and do its job. ‘I don’t know what you’ve done,’ that consultant is famously quoted as saying, staring at screens of faintly flickering vital signs, ‘but keep doing it.’ The disease’s hold on my mother’s body was loosening.
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The liver is the largest internal organ in the human body. It gets its name from the Middle English lyvere or the Old Icelandic lifri/lifra meaning ‘brother’/‘sister’. [5] In these Germanic languages, liver is life. The Ancient Greeks believed it was the seat of the soul and of human feeling. It weighs about half as much as a newborn baby and is faintly trapezoid in shape, marbled with ducts and ligaments and lobes which chunter and churn within you silently, or on occasion, groaningly. An atlas of fleshy lobes and folds. Amongst other things, the liver stores vitamins and minerals, sifts through toxins in the blood, regulates sugar levels and metabolises fats, like some kindly but firm nineteenth-century governess.
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It was 1901 when Augustin Nicolas Gilbert and his team first described the symptoms caused by a mutation in the UGT1A1 gene which prohibited the conjugation of bilirubin, a waste product produced by the liver as it breaks down old red blood cells. Left unconjugated, like a wayward verb, bilirubin turns sour. If the liver is a governess, then bilirubin is surely its wastrel charge: wild-eyed and wilful but, ultimately, harmless. It roams the wasteland of the body looking for trouble. It digs up old ground and breaks open old wounds. It scratches disconsolately in the dirt, unprocessed, undealt with.
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My diagnosis was inherently conceptive: after ten years on the pill, thinking about switching to non-hormonal birth control, it revealed itself during a routine blood test. There is no treatment for Gilbert’s Syndrome. You are born with it, a disorder present from birth. It’s not a disease. It is an inherited hepatic inability to filter bilirubin, a byproduct of all the haemoglobin swilling round your vascular tubes and crevices. Hepatic – of or relating to the liver or liver (dys)function. Birth control, birth disorder, birth trauma. Illness narratives may have no discernible causality. There is no evidence to suggest a link between HELLP Syndrome and Gilbert’s Syndrome. [6] But when she gave birth to me, my mother’s liver failed her, and apparently, mine has been failing me in a lesser way ever since.
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‘It’s completely benign,’ the doctor tells me over the phone. So benign, in fact, that many people with Gilbert’s Syndrome don’t know they have it until it announces itself in routine blood tests, just as it did for me. If anything, research suggests that Gilbert’s may actually have a potentially positive effect on health: lesser cancer-related mortality, lower cardiovascular health concerns, better circulation. [7] One may be more susceptible to jaundice, granted. But what’s a little yellow around the gills in the face of a heart attack?
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It feels mawkish to write about being diagnosed with a syndrome which cohabits peacefully with me in my body; to use the language of illness in the absence of feeling. So this is not a poison pen letter. If anything, it is a love letter. It is that dream about footprints in the sand, about not knowing my diagnosis was walking invisibly beside me all this time. But for something so rooted by my side, my Gilbert’s is evasive. I don’t know how to handle it in words and paper, how to present it to people who don’t know and who haven’t heard of it before. It is at once both part of my bio-textual makeup and not worth talking about. This is a narrative in production as I work out what to say.
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While I look for my own words, I turn to older ones. Bilirubin, from the Latin, is literally ‘red bile’. But bilirubin is not red. Bilirubin is yellow. This is important because bilirubin is a tetrapyrrole – a four- ringed chemical compound – which ‘add colour to the world around us.’ [8] Humoral theory, the ancient medical doctrine, suggested that the body was made up of four distinct elements – yellow bile, blood, phlegm, and black bile – each with a distinct corresponding physiology. Yellow is choleric. Yellow is furious, hot-tempered, ambitious, spitfire, shrew. (That strikes a chord.) Choleric is burnt summer grass and embers, Catherine wheels and sobbing.
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In the sixteenth century, it was written, a ‘hot liver’ could be remedied with the application of cucumber and other cooling plants. [9] Additionally, tea made from bright yellow agrimony
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had a reputation for curing jaundice, and [the celebrated botanist Nicholas] Culpeper assured us that “it openeth and cleanseth the liver”, and in fact that was what it was used for in Gaelic folk tradition […] Gerard had already recommended the leaf decoction as “good for them that have naughty livers”[10]
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‘I fear it is too choleric a meat,’ Petruchio chides Katherina, a choleric woman, as he snatches a piece of beef from her starving fingers in Shakespeare’s The Taming of the Shrew. [10] Full of yellow bile, her humors in disarray, it was feared the vapours would stretch into the choleric woman’s mind and excite the passions, stir her to rage, impassion her to boldness. The choleric woman is fearless and fearsome. All this talk of cucumber and agrimony: if only someone had simply handed Katherina a pen.
'If the liver is a governess, then bilirubin is surely its wastrel charge: wild-eyed and wilful but, ultimately, harmless. It roams the wasteland of the body looking for trouble. '
Georgia Poplett, Bilious Shrew, 2023.
Pyrrole 2. Narrative.
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‘You have Gilbert’s Syndrome,’ the doctor says over the phone once my bloodwork comes back. ‘I’m guessing you know that?’
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The difference between a disease and a syndrome is a numbers game. Disease: from the Old French, des + aise, lack of ease. Syndrome: Greek for ‘running together,’ when all the subplots of disorder come together to tell a story. Gilbert’s Syndrome is a plot twist, or maybe a deus ex machina. This is a clumsy metaphor now. In other words, the story of my Gilbert’s had two beginnings: one when I was born, and one when the doctor disclosed that I had it. It was not an embodied knowing, a gut feeling. And the story of my misbehaving organ, it turned out, was a short one. ‘Don’t worry about it,’ the doctor says. ‘It’s benign, completely benign. Most people don’t even know they have it.’
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It failed to appear in my medical notes the way it failed to appear to me in my own body, capable of being read and interpreted only by health professionals. I catch glimpses of it in the translation of my bloodwork. Plasma conj bilirubin level: 13 umol/L (normal range: 0-4). Serum total bilirubin level: 31 umol/L (normal range 0-21). Two months after my diagnosis, my father the GP corrects me. I’m pronouncing it wrong. The G in Gilbert is not hard. The T should not strike flint on your teeth. The true word is slippery and degloved, all sibilants and occlusives. I’ve been pronouncing the language of my own body wrong all my life, so the misspeak slides easily down my back and into conversations with my friends.
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This is a narrative in production. What is the meaning of a disorder which has very little effect in practical terms on my wellbeing, and what does it mean for my practice as a writer who deals in meaning-making? Like the story of my diagnosis, the story of my birth is filtered through the distorting effect of medical jargon and the unreliability of memory: the things said or not said or said differently, what my mother does remember and the slippage between what she doesn’t, the knowing of the event as something that both did and did not happen to me. But doesn’t a novelist deal in things that have not happened to them all the time?
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‘To be declared with certainty ill while feeling with certainty fine is to fall on the hardness of language,’ Anne Boyer writes in The Undying: A Meditation on Modern Illness. [12] To be clear: I would not try to appropriate Boyer’s framework, born out of her experience of cancer, to contain the parameters of my own brushes with ill-being. But I am struck by her account of ‘the hardness of language’ – the in-betweenness and dead ends, the false starts and liminal spaces which govern my position within both the medical ecosystem and creative life as a writer.
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Gilbert’s is not a disease. A disease is a pathophysiological dysfunction. A disorder like Gilbert’s is a functional pathophysiology. It is a disruption to normal programming, an unusual turn of events which nevertheless gets the job done. In this way it is framed as output and efficiency, as production, as labour. To live off one’s writing is to negotiate another kind of system which often reaches for yield and exponentiality above craft: economy, not physiology. But writing has always been physiological for me. What I write about, and how I write about it, has deep roots in my tissues, the physical and the familial, the blood and bone and flesh and tongue through which things are handed down. But it is also a political act, as is well-documented by others much better placed to comment than me. Writing as resistance, writing as inheritance, writing as capital.
'What is the meaning of a disorder which has very little effect in practical terms on my wellbeing, and what does it mean for my practice as a writer who deals in meaning-making?'
'To think about disease under capitalism is to remain open to the possibilities of capitalism as its own kind of disease.'
Pyrrole 3. Output.
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In The War of Art: Winning the Inner Creative Battle, Steven Pressfield writes: ‘The acquisition of a condition lends significance to one’s existence […] The condition becomes a work of art in itself, a shadow version of the real creative act the victim is avoiding by expending so much care cultivating his condition.’ [13] Perhaps he should have said ‘the work of art’.
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I’m not certain I agree with the notion that it is a fact universally acknowledged that all creatives in possession of a condition must be in want of significance. What I am more certain of is that to diagnose is to allow what Boyer calls ‘the mercy of a name.’ [14] And to name is to solidify into being, to grant a kind of weight and gravity which would echo if you dropped it on a wooden floor, which would not slip silently through the cracks.
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I fall into hepatic rabbit holes online. If a syndrome is when all the subplots of disease come together to make a plot twist, I start looking for the other subplots. I know enough of writing to know that one blood test does not a story make. What about the hard, knobbed currents which squirm through my guts all the time? How does 13 umol/L conjugate to the vocabulary of bodily feeling? I started seeing a counsellor because in a silenced pandemic world, I could not catch all the snowfalling thoughts in my hands quickly enough. And there was the question of my inherent fragility, too. One night, I fainted in the street walking home with a friend and hit my head so hard that the bruise left its port-wine handprint on my temple for two weeks.
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Two hundred years ago a doctor might have called me hysterical and prescribed the Rest Cure; two hundred years before that, he might have put me on a phlegmatic diet of veal, egg whites, sheep’s milk, fish to cure my shrewness. Two hundred years again, and it would have been the stake for me. (I am, of course, being facetious. The majority of English witches were hanged; only heretics and traitors were sentenced to that other, most choleric of deaths.) There is a growing body of evidence which suggests people with Gilbert’s Syndrome may be more susceptible to anxiety, insomnia, and depression. After all, in high levels, unconjugated bilirubin can be neurotoxic. [15] But this research is underfunded and undersupplied because Gilbert’s is, fundamentally, benign. And aren’t these symptoms all just a consequence of living under the conditions of capitalism?
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To think about disease under capitalism is to remain open to the possibilities of capitalism as its own kind of disease. If Big Pharma and the absurdities of late-stage capitalism have taught us anything, it’s that there is money to be made in pathology. I’m suddenly struck by just how many dollar bills Silas Weir Mitchell, pioneer of the rest cure, must have peeled off the back of all those hysterical women who couldn’t vote. (We do know is that he had a respectable private art collection.) [16] And medicine and capitalism have long been anachronistically enmeshed. In different ways, n=1 is anathema to both registers, whose focus is on quantifying human lives and experiences into statistics, efficacy, empiricism. It’s an approach which streamlines diagnostics and treatments and, ultimately, pockets.
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This equation changes when you bring narrative into it. The sociologist Arthur W. Frank read illness as ‘a call for stories.’ Firstly, ‘stories have to repair the damage that illness has done to the ill person’s sense of where she is in life, and where she may be going,’ he writes. ‘The second and complementary call for stories is literal and immediate: the phone rings and people want to know what is happening to the ill person.’ [17] In different ways, capitalism also calls for stories, but only the ones you can package up and sell as products. (Yara Rodrigues Fowler has written with blistering insight and incision on how capitalism influences who is enabled to contribute their narratives and at whose expense.) [18]
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All this capitalist-speak of ‘inefficiency’ and ‘output’ in the context of a Gilbert’s diagnosis has me layering over the tracing-paper of craft. Aren’t these also pressing questions for the working creative? What does it mean to be benignly inefficient? To function at less than maximum potential? What would it mean, to apply that same philosophy to my creative work: to worry less about efficiency and output and more about sensory experience and embodied feeling?
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Pyrrole 4. Production.
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By not processing extraneous materials – by not flushing out the toxins by design, before they have so much as a second to rest a hand against the glass of my insides – they percolate. Sometimes, those percolations bring new insights to the fore when they’re allowed to linger, when they might otherwise have been shown the door. It’s like a background software update while my mind is elsewhere, going over old ground again and again, until new buds start to sprout. The obsessing and overthinking greases troublespots. Perhaps Woolf said it best: the writing woman needs space and money and time to think. [19] Perhaps all the money that we might speculate Silas Weir Mitchell made would be mere peanuts in comparison to the bounty of creative artistry his Rest Cure immobilised. [20]
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I’m increasingly put in mind of Keats’s ideas around negative capability: the creative’s lot to sit and stew contentedly in ‘uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.’ [21] I have tried to use the story of my Gilbert’s like a magic lantern, to retrospectively recolour and recast earlier events from my life which precede diagnosis. I look for answers even knowing I cannot explain everything away in two words. But I also try, increasingly, to frame things less in terms of ‘something wrong’ or ‘something right’; of not dealing with something ‘correctly’; to pine after ‘normal’, productive, hustle culture, grind, girlboss. Sometimes slowness and silence is the way: a contradiction to the capitalist thrum which surrounds us. A benign existence, moving at its own pace inasmuch as it can.
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How to make peace with that? I don’t have an answer yet. This is a narrative in production. Until then, all that’s required is diagnosis and reassurance.
Notes
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[1] ‘Bilirubin.’ Cambridge Dictionary of Human Biology and Evolution, 1st ed. (Cambridge: Cambridge University Press, 2005)
[2] ‘Gilbert’s Syndrome.’ Dictionary of Medical Terms (London: Bloomsbury, 2005)
[3] ‘Gilbert’s Syndrome.’ Black’s Medical Dictionary, 43rd Edition (London: Bloomsbury, 2018)
[4] Hammoud, Ghassan M, and Jamal A Ibdah. ‘Preeclampsia-induced Liver Dysfunction, HELLP syndrome, and acute fatty liver of pregnancy.’ Clinical liver disease 4:3 (2014): pp69-73
[5] Riva, Michele Augusto et al. ‘“The city of Hepar”: rituals, gastronomy, and politics at the origins of the modern names for the liver.’ Journal of hepatology 55:5 (2011): pp1132-6
[6] Zusterzeel, P L et al. ‘Gilbert’s syndrome is not associated with HELLP syndrome.’ BJOG: an international journal of obstetrics and gynaecology 108:9 (2001): pp1003-4
[7] De Morais, S M et al. ‘Decreased glucuronidation and increased bioactivation of acetaminophen in Gilbert's syndrome.’ Gastroenterology 102:2 (1992): pp577-86
[8] Layer, Gunhild et al. ‘Cofactors: Biosynthesis of Heme and Vitamin B12’ in Comprehensive Natural Products II ed. by Hung-Wen (Ben) Liu and Lew Mander (Amsterdam: Elsevier, 2010): 445-499, p467
[9] Watts, D. C. Dictionary of Plant Lore (Amsterdam: Elsevier Science & Technology, 2007), 94
[10] Ibid.
[11] Shakespeare, William. The Taming of the Shrew (London: Penguin Classics, 2015), IV. 3. 19.
[12] Boyer, Anne. The Undying: A Meditation on Modern Illness (London: Penguin, 2020), 1.
[13] Pressfield, Steven. The War of Art: Winning the Inner Creative Battle (New York: Rugged Land, 2002), p90.
[14] Boyer, p15.
[15] Dhillon, Anahat and Steadman, Randolph. ‘Liver Diseases’ in Anesthesia and Uncommon Diseases 6th ed. (Amsterdam: Elsevier, 2012): pp162-214.
[16] Reason, Akela. Thomas Eakins and the Uses of History (Philadelphia: University of Pennsylvania Press, 2010),
[17] Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago Press, 1995), p53
[18] Fowler, Yara Rodrigues. ‘The Romance of the Book Deal’, Too Little/Too Hard, Summer 2023 <https://tlth.co.uk/theromanceofthebookdeal> [Accessed 10 November 2023]
[19] Woolf, Virginia. A Room of One’s Own & The Voyage Out (London: Wordsworth Classics, 2012)
[20] It would be an overreach to suggest that all of Weir Mitchell’s patients were quashed artistic geniuses ahead of their time; while his Cure certainly hinged on Victorian constructions of ‘proper’ femininity, often rooted in cultural passivity, certain patients were more straightforwardly medically unwell.
[21] Keats, John. Selected Letters (London: Penguin Classics, 2014)
About Georgia Poplett
Georgia Poplett is a writer and Postgraduate Researcher based between the Department of English Studies and Institute for Medical Humanities at Durham University. Her practice-led PhD looks at representations of the lived experience of postpartum psychosis with a specialism in Gothic literature, and explores the production of original novel-writing as academic discourse.