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Undiagnosing Dorothy

Polly Atkin


osthumous diagnosis is by its very nature problematic. The ethics of diagnosing the dead are questionable, and the practicalities unfeasible. More often than not, there is no body to examine, no physical record of disease or disorder. Where there is a body, and it can be examined, it may not retain any useful evidence. Most conditions cannot be diagnosed from bones alone. Where there is no body, retrospective diagnosis relies on textual records, often letters and diaries, which may be missing key elements of the story, or worse, represent hearsay and gossip that has little to do with what the person in question actually experienced.

I know from my own experience how much diagnosis depends on asking the right questions, and how much knowing which questions to ask, and how useful the answers will be, depends on what information is available. In my case, it took a lifetime of asking the wrong questions, or the right questions with partial information, before my primary diagnoses were found, almost incidentally. It took one person to ask a simple question that hadn’t been asked before, to kick off a chain reaction which led to the right tests, which lead to more questions, which lead to more answers. It was luck or chance that one of the specialists I was sent to for one genetic condition asked very thorough questions and uncovered the other genetic condition. Previous blood results that suggested it might be present had been discounted, because of partial information, a lack of understanding, a presumption that younger women did not develop this particular condition. Every step from the age of two till thirty-four that delayed my diagnoses was like this—someone looked at evidence and either misfiled it or dis- counted it—based on their own assumptions. This is not what I want to do with Dorothy. I want to undiagnose Dorothy, not to diagnose her. I want to ask the right questions, and to gather as much evidence as there is available. But I know two things: I have my own biases which will determine both my questions and how I interpret the answers I find, and I do not have all the information.

Lack of information and diagnostic bias has determined the diagnoses lain on Dorothy by previous biographers and commentators. Dorothy has been diagnosed with many things by many people, some of them agreeing with each other, some of them not.

The mysteriousness of Dorothy’s illness has drawn attention from doctors over the years, who have attempted to diagnose her as a cold case from letters and journals entries. In the Journal of the Royal Society of Medicine in 1998 John Price theorises that her cognitive and mobility changes were caused by thiamin deficiency, caused by her ‘vomiting and decreased food intake’ during the crisis of December 1832, which developed into Wernicke-Korsakoff Syndrome. Wernicke-Korsakoff Syndrome is characterised by mental confusion, vision changes, and loss of muscle coordination. It could explain some of Dorothy’s symptoms, but like so many attempts to diagnose her, it does not quite seem to fit. Ironically, Price recognises the problems inherent in trying to diagnose long deceased patients from partial descriptions, comparing it to archaeology, where the ‘evidence is likely to be incomplete or even fragmentary’, but argues that it is possible to ‘assemble the historical fragments so as to produce a recognisable whole.’ In archaeology, he says, you can learn enough to tell whether shards of pottery are a cup, or a saucer. Like many diagnosticians of Dorothy, Price has only looked at the published letters, alongside Gittings and Manton’s biography, as his evidence base. I fear, to use his analogy, he may have confused cup and saucer after all.

In the introduction to her 1971 edition of Dorothy’s journals Mary Moorman writes in passing that Dorothy was suffering from untreated gallstones which caused progressive arterio-sclerosis, which in turn affected her brain. Gallstone disease is known to often co-exist with coronary artery atherosclerotic disease, and studies in the last decade have sought to confirm this link.

Arteriosclerosis—known more widely now as atherosclerosis—is a condition in which plaque builds up in arteries, restricting oxygen access to organs and potentially causing blood clots, angina, heart attacks and strokes. This is a compel- ling idea and could explain how the acute episodes of the first half of the 1830s come to change the way Dorothy thinks and acts. A stroke or blood clots could indeed account for some of Dorothy’s symptoms after her acute attacks—the swelling, discolouration and weakness of her legs, her confusion—and for her cognitive changes after the crisis of 1835. I’m not convinced Gallstone Disease fits the full range of Dorothy’s bowel symptoms as collected in this chapter, but I do think the idea that something happened during those crises that affected her brain, something that could be vascular in nature, stands up. Importantly, Moorman was firm in asserting Dorothy’s ‘illness had purely physical causes, and if she had lived in our own age could have been treated’. She found ‘the notion put about recently, that D.W.’s mind was affected by emotional distress, is not tenable.’ Moorman stands out as one of the few commentators who has not identified Dorothy’s illness as psychological in some or all parts. Gallstones and arteriosclerosis is the diagnosis Carl Ketchum repeats in his introduction to Dorothy’s Rydal Journals in 1974. Robert Gittings and Jo Manton’s 1985 biography agrees that gall bladder disease is responsible for Dorothy’s first acute illness in 1829, but suggests that her cognitive changers are unconnected.They consulted an expert in age-related illnesses, who suggested ‘we try too much to link all her illnesses’, and that her dementia had nothing to do with her painful bilious attacks. The expert concluded she had pre-senile dementia. Dorothy managed to live an unusually long time with dementia, he theorised, because of the ‘loving care’ provided to her. It is useful to be reminded that not every symptom is connected, but the cognitive changes occur after a physical crisis, so the idea they could be coincidental seems less likely. In her 1988 book Dorothy Wordsworth, Writer, Pamela Woof agrees that Dorothy was ‘suffering probably from what is now known as pre-senile dementia’. This diagnosis of pre-senile dementia has stuck for many, partly because of Woof’s incredible expertise when it comes to Dorothy, partly because of the popular readability of Gittings and Manton’s thorough Life.

Certainly, there are some elements of her conditions that could suggest dementia. From 1835 onwards her short-term memory seems to be impacted by her condition, yet her memory of the past seems compellingly present. In December 1837, after Elizabeth Rawson’s death, William writes to Edward Ferguson that Dorothy ‘talks much of Halifax and early connections there; nothing indeed seems to employ her thoughts so much.’ (WW to Edward Ferguson, December 30, 1837). Evidence for dementia has also been found in Mary and William’s numerous accounts of Dorothy’s ‘childishness’ during her acute illness, and the years that follow. She becomes, Mary writes, party to ‘ungovernable passions’. In other words, she wants to do what she wants to do. Visitors to Rydal Mount in her later years report on how remarkable it is that with her ‘enfeebled mind’ Dorothy can recite the poems of Coleridge and repeat stories of their youth. It is clear how be read as indicating dementia, but it also only seems to me to be part of the story of Dorothy’s illness, and not to explain it all. Despite apparent memory loss, and dwelling on the past, Dorothy seems to shift in and out of the present moment over her last twenty years. Although she does not write a lot during this time, she does write and recite poems and she does write some short letters. Most importantly, whatever has happened to her is not obviously progressive. Something happens in the last crisis in 1835, which changes her cognitive function for the rest of her life. But from that time on, there is no further progression, just daily fluctuations. More recently, Lucy Newlyn has combined theories to conclude that ‘Dorothy’s later years [...] were blighted by arteriosclerosis and dementia.’ It seems unlikely Dorothy could have lived with fluctuating cognitive function but have had stable health for twenty years if this were her diagnosis, no matter how much loving care she was given.

This lack of an immediate, simple explanation for Dorothy’s memory and mood changes has led other scholars to discount a physical cause at all, as Moorman indicated, and assume the illness is emotional or psychogenic in some way. In this they are harking back, wittingly or unwittingly, to those Victorian commentors who believed she became ill through thinking too much, or too little, of herself. Francis Wilson diagnosed Dorothy with depressive pseudodementia, caused somehow by a very delayed response to no longer being the centre of William’s life after his marriage. Wilson realised that Dorothy’s disease progression and length does not map easily onto a diagnosis of organic dementia. It also does not map well onto pseudodementia, which is a contested diagnosis at the best of times. Even when her cognitive function is most disrupted, she has highly emotional responses to stimuli, making jokes, weeping at flowers, and becoming angry when refused something she wants, none of which fit with this functional dementia-like condition, sec- ondary to depression, and most often recorded as a side-effect of medication. Susan Levin, despite her ground-breaking work in collecting Dorothy’s poems, and careful, thoughtful, reading of her letters and journals, similarly assumes that the mysteriously fluctuating nature of Dorothy’s illness means it can only be explained by ‘feminine psychology’. As an invalid, Levin argues, Dorothy can do as she wants, living ‘authentically’ as herself, ‘both the old Dorothy whom everyone knows and loves and the aggressively unacceptable crazy lady.’

The idea illness offers a ‘release’ to Dorothy does not stand up to much scrutiny, though it repeats charges made a billion times against a billion sick women: that we are not really sick, just pretending, to get our own way. This psychologising always presupposes there is more to gain than there is to lose from life in the sickroom. It confuses the need all newly disabled people have to adjust to their situation and find ways to experience pleasure and joy in their changed life, and that changed life being a choice they have made towards happiness. Dorothy, it is true, finds solace in her illness, but it is clear it is not her choice. She finds solace despite her illness, not because of it. It also repeats another harm committed repeatedly against the mysteriously sick, and sick women in particular: to assume that since the cause and name of an illness it not known, the illness does not have a physical basis. It happens often in medical con- texts, but it seems particularly strange to me that scholars can admire a writer or an artist from the past so much that they will spend their life dedicated to their work, but also distrust them to the point of disbelieving their own witness of their own life. Having said that, Dorothy’s description of her own condition cannot always be taken entirely at face value, or as complete. There are three kinds of records we have of her illness in her own words: her poems, her letters, and her journals. The Rydal Journals—not written to be shared in the same way as her earlier journals were—are the most intimate of these records, and the least censored (by her own hand, at least). Her poems are made artfully, and though they reveal her own feelings about her situation, they also are formed through what she wants to feel about her situation, and what she wants to tell others. They are written to be read and shared. They are designed as communication.

In her letters, even as her condition progresses, she is very aware of her audience and their expectations. They often have a cheerful, self-deprecating tone, especially when describing the seriousness of her condition. She never wants her correspondents to worry unnecessarily. For instance, in 1830 she describes herself to her god-daughter Elizabeth Hutchinson as both old and ‘infirm’, but she does so to point out how entertaining her visit will be, as a ‘lively companion and useful help’. (DW to Elizabeth Hutchinson, July 16, 1830). I know I self-censor my words when I tell others how I am. There are some friends I am more open with than others, but if a future archivist were to search for records of my illness, they would not find the worst of my experiences. Sometimes, they are beyond words. Sometimes I will repeat them only in person, the words floating off, ephemeral, reduced to half a sentence or an aside. Sometimes I make notes for myself, in case I need them later, but even those will not reflect the whole truth. There is so much daily body horror that goes unrecorded.

This is what I see when I am faced with the unwritten and fragmented portions of Dorothy’s life: what is impossible to write down.

From Recovering Dorothy, Saraband Books, 2021, longlisted for the Barbellion Prize 2022.


Polly Atkin