‘Ill Feelings’: Book Review

Peter Endicott reviews Ill Feelings by Alice Hattrick (Fitzcarraldo Editions, 2021)

 

I met a patient in my first year as a medical student with symptoms – intolerable pain, inability to be exposed to sunlight, complete loss of mobility – that were debilitating. After the clinic appointment, the doctor reviewed a scan that the patient had arranged abroad, as their team in the UK didn’t believe it was warranted. ‘They can get on a plane for a scan but can’t walk a few steps’, the doctor said, shaking his head, ‘of course there’s nothing wrong’.

The doctor wasn’t just saying there was nothing wrong with the scans, but that there was nothing wrong with the patient. That, Lazarus-like, they should cast off the glasses they needed to protect their eyes, and walk on the legs they could not use to walk. I thought the patient was extremely sick. The doctor was telling me they suffered from nothing at all.

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The ill feelings of Alice Hattrick’s book are those of medically unexplained illness, as well as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a diagnosis that the medical establishment frequently treats with contempt. Alongside the story of their own and their mothers’ illness, Hattrick uses accounts from women writing in the 19thand early 20th centuries. Despite the relative newness of ME/CFS as a diagnosis, the accounts of many – including Alice James, Virginia Woolf, and Rose La Touche – are eerily prescient. La Touche is quoted as being ‘half-believed’ by doctors, and therefore ‘obliged as it were to work half against myself’ (57). Alice James writes ‘ever since I have been ill I have longed and longed for some palpable disease’ (287). Hattrick shows this isn’t irrational, when failing to fit into a diagnostic category is to be labelled a pretender. This use of historical accounts is so effective because it subverts the assumption that medical progress is on a constant upward trajectory.

The similarities between Hattrick’s experience and those of women in the 1800s are developed further. Alice James failed to find adequate help from doctors, but she did in her relationship with Katherine Loring, which Hattrick believes was a romantic companionship. They make the argument that, ‘If I am wrong, and Alice and Katharine were not in a loving lesbian – in the modern sense – relationship, then I risk historical inaccuracy, which is a small price to pay in the face of queer erasure. This is my refusal, on behalf of Alice, and all the other sick queer women who lived through their refusals before me’ (282). Historical interpretation often risks inaccuracy, but it’s radical to admit this so unapologetically. Honesty brought to supposition brings the reader along with the writer.

Erik Mclean on Unsplash, 2021

Belief and refusal are themes that Hattrick brings to the contemporary economic realities of those with symptoms of medically unexplained illness. Disability rights activist Eli Clare writes that diagnosis is ‘a tool and a weapon shaped by particular belief systems’.[1] Here, the belief system is the neoliberalism of New Labour, a time in which scientists argued that much chronic illness was ‘a cultural phenomenon rather than a health problem, as a metaphor in and of itself’ (208). Advice to provide graded exercise therapy that stemmed from this view has since been discarded. The evidence for its use has been shown to be of poor quality, promoted by scientists who consulted for the Department of Work and Pensions, and directed private rehabilitation providers. Through the story of the ME/CFS community’s refusal to recognise this work, Hattrick effectively links modern medical science to themes of political power and privilege.

Using sickness as political metaphor is a trope that stretches far beyond the modern day. In her seminal book, Illness as Metaphor, Susan Sontag quotes Schopenhauer, who wrote that ‘recovery from a disease depends on the will assuming “dictatorial power in order to subsume the rebellious forces” of the body’.[2] Hattrick nods to Sontag’s warnings of the use of metaphor, but also recognises metaphor as a tool for the person who finds themselves in Sontag’s ‘kingdom of the sick’: ‘Woolf transformed her feelings into bodily metaphors because that was the way I assume she – and I, my mother, and so many others with ‘invisible illness’ – experienced those feelings: through her body’ (285).

The standout example of the dangers of interpreting illness as metaphor in Ill Feelings is the naturopathic physician Sarah Myhill, who likens infection to ‘Henry V at Harfleur’ and proclaims that ‘Life is an arms race’ (256). She advises on her website that vaccines are dangerous, facemasks should not be worn because of their risk of collapse, and that rigid regimes for diet and vitamin use will ensure one doesn’t become ill.[3] Reading Illness as Metaphor alongside Ill Feelings will produce numerous points of comparison. One of the most striking is when Sontag rejects Karl Menninger’s formulation: ‘Illness is in part what the world has done to a victim, but in a larger part it is what the victim has done with his world, and with himself’. Sontag notes, ‘such preposterous and dangerous views manage to put the onus of the disease on the patient and not only weaken the patient’s ability to understand the range of plausible medical treatment but also, implicitly, direct the patient away from such treatment.’[2] Doctors like Sarah Myhill are conceptualising illness as ‘what the victim has done with his world’. To ‘direct the patient away from treatment’ is the logical conclusion.

Hattrick recognises Myhill’s claims about vaccines as alarming, but isn’t interested in piling scorn on those who seek to work outside of the rules of the establishment. There is a clarity to this approach. Hattrick writes, ‘Myhill is putting control back in the hands of the patient – something that is both empowering and concerning’ (262). This empowerment is the point. When people have been ignored and patronised by the establishment, they will search elsewhere.

 

William Isted on Unsplash, 2018

 

The management Hattrick advocates for is pacing, which means keeping within one’s own capacity for activity, regardless of the expectations of society or health practitioners. This, in turn, aims to reduce symptoms of post-exertional malaise, a hallmark of ME/CFS, where symptoms can worsen for days or weeks after physical or mental exertion. Hattrick intricately brings forth arguments for pacing as a therapeutic practice throughout Ill Feelings. The genesis for the idea can be found in the opening lines, when Hattrick and their mother walk through a field at dusk. The tense used is the present, though we are given a vision of the future – being told ‘my mother will move away’ (12) – even as their mother, in the moment, is ruminating on how she might feel the next day. This movement between tenses recurs at various points throughout the book. Though it could disorientate the reader, it makes sense when we are told that pacing ‘is based on living in between normative and non-normative experiences of time’ (313).

Hattrick further notes that an important part of their pacing is the recognition that ‘there might be no such thing as a future in which you are well’ (313). When CBT is touted as a cure by a government wanting to get people back to work, or thought techniques as cure by those wanting to sell courses and books, Hattrick’s cynicism about linear progression – through illness towards cure – is fully validated. Hattrick writes that, initially, they ‘desired a singular narrative but the form, with its need to end in a place it did not begin, refused to accept my version of events’ (320). The text of the book, with its experimentation with tense, corroborates this approach; the criticism of ‘cures’ confirms it.

And though Hattrick may eschew normative structure in illness narratives, they bring about a beautiful ending in Ill Feelings. ‘There is an ending,’ they write, ‘and that is: accepting that there might be no end to illness, that your life still has meaning, [and] that you are worthy of care…’ (322).

 

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Many doctors celebrate their role as dispassionate observers, their distance letting them perform a callousness they conceptualise as objective. This distance is something that grew between me and the patients I’d meet over the years since I started training. I felt very close to the person in the wheelchair, with dark glasses, ignored by their doctor. I sometimes feel very far away from the person who, during a busy shift, will tell me that their medicines aren’t working, their pain is increasing, and that I should be able to do something about it.

Hattrick’s imbrication of memoir, essay, and literature review calls attention to the medical establishment’s inadequate conception of medically unexplained illness. It shows that cruelty and didactic therapies are not a response to medicine’s inability to heal. The fluidity they bring to the writing of illness narrative demonstrates there are ways of knowing that do not necessitate ostracising those who are sick.

 

Peter Endicott is a doctor and writer working in London.

 

[1] Clare, Eli. 2017. Brilliant Imperfection. Durham: Duke University Press.

[2] Sontag, Susan. 2009. Illness as metaphor and AIDS and its metaphors. London: Penguin Classics.

[3] Myhill, Sarah. 2021. Effective prevention and treatment for all respiratory viruses including Covid and Influenza. https://drmyhill.co.uk/wiki/Effective_prevention_and_treatment_for_all_respiratory_viruses_including_Covid_and_Influenza (accessed January 17, 2021)

 

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