What We Call Progress
Alice Hattrick, Ill Feelings
Fitzcarraldo Editions, 360pp, £12.99, ISBN 9781913097646
reviewed by Connor Harrison
There is a feeling that the COVID pandemic has treated us all, to some degree or another, as ill people. Isolated, masked and watching our bodies for signs of change, the lockdowns have engendered the idea that we now know what it is to live with chronic illness. Time started to curdle by late morning; holidays and trips out became impossible; it became plain that the government saw us at best as customers, and at worst, as cattle. And as the rules were shifted and nudged to the point that nobody knew what was safe, those same cattle were blamed for their own ill health. But here’s the thing: none of this behaviour was new for the same group we were suddenly living closer to — the actually chronically ill.
In 1995, Alice Hattrick’s mother collapsed at home, an episode which led to a diagnosis of myalgic encephalomyelitis, or ME. Not long after that, Alice too was diagnosed with chronic fatigue syndrome, or CFS. What is ME/CFS? In part, Ill Feelings is a response to that question, the book being a wide-ranging case file of Hattrick’s relationship with illness. What becomes immediately clear, however, is that ME/CFS is criminally misunderstood and ignored. Its symptoms are numerous. In the case of Alice’s mother, who keeps a ‘health archive’, they are: ‘severe impairment’ of cognitive functioning, interrupted sleep, mood swings, headaches, sore throat, nausea, heart palpitations, anxiety, ‘and of course extreme fatigue.’ The list goes on. It is an all-consuming illness, compounded linguistically by its name: in one case, Alice’s mother has written on the back of a photo, ‘I am 29. Pre-ME — JUST,’ as if her identity was born with the disease. ‘What if I had no ill feelings’ Hattrick writes, ‘what would I be doing? Everything comes back to them — all the reasons I cannot do anything and all the meaning in my life.’
Ill Feelings is not a book, like so many on illness, that is preoccupied with ‘wellness.’ Hattrick is not interested in helping people to feel better about their ‘disabled’ friends, colleagues, strangers. In many ways, it is a hard book to categorise — and all the better for that difficulty — since so many doctors and medical officials find ME itself so confusing. Most of the trouble, though, comes from a cultural disregard for ‘invisible illnesses.’ In 2008, when Incapacity Benefits were repackaged as the Employment and Support Allowance in the UK, the definition of sickness was altered. ‘Anyone applying for ESA was deemed to be playing a “sick role”, a term borrowed from American medical sociologist Talcott Parsons, who argued that when someone becomes sick they enter a role of “sanctioned deviance” in the eyes of society.’ It is practically impossible not to become angry while reading about the many ways Hattrick is infantilised. This is most keenly observed when they and their mother are blamed for each other’s diagnoses: ‘[W]e were told we were hysterical, that we were inventing a language of our own demise, that for some reason we needed to be ill to get the attention we desired. My illness could be explained by my mother’s.’
Hattrick’s ability to reflect life with ME in form and language is complex and brilliant. The structure of Ill Feelings appears initially as haphazard, perhaps, but the more you read, the more it clarifies: this is not a book of simple narrative, of gradual progression. The chapters shift around in both tone and environment. While the spine of the story is Alice’s — their various treatments ranging from the comforting to the absurd, and their relationship with their mother — there are many branches and loops throughout the book. We move from Virginia Woolf’s account of illness to Elizabeth Barrett Browning’s debilitating fatigue, to the most current research on ME. The structure illustrates what Hattrick writes about ME: ‘Sick time is not linear time. It is circular. It lapses and relapses, it drags, loops and buffers. [. . .] I live in sick time, inside my loop of pain.’
Perhaps a technique learned while navigating the treacherous waters of ME, Hattrick also adopts many voices in Ill Feelings. Often they are a researcher and historian, digging through diaries and records with a careful touch; other times they write something like a medical professional might, giving us an idea as to how much information (and how many confusing acronyms) Hattrick must remember. ‘The GAD-7 is a seven-question anxiety screening test, developed in 2006. The PHQ-9 is a self-administered patient health questionnaire, a version of the Primary Care Evaluation of Mental Disorders developed by Dr Robert Spitzer. . .’ Running through this health archive, though, is Hattrick the writer: intelligent, poetic, constantly looking to make the experience of pain into language. The book comes back again and again to the loss of speech and words. At university, when Hattrick’s ‘hands seized up a few days before I was due to sit my final exams’, they are in such acute pain, they ‘could not hold a pen.’ And, later in the book: ‘Pain lends itself to metaphor, welcomes it, even — like illness in general. [. . .] Sometimes there is no reason for our ill feelings, just like there isn’t enough language: it is too arbitrary.’
Given the way that it suppresses verbalisation, it is natural to draw parallels between living with pain — on the boundaries of how useful language can actually be — and living as a minority, which we too often take to be silent. Illness has always been harder territory to walk for those who are rarely believed in any context. ‘Who else has lived lives that challenge dominant narratives,’ Hattrick writes, ‘about class, and family, and race, and illness? Who has stories to tell to make sense of the place we currently inhabit that cannot be absorbed into the central one, both a disruption and an essential counterpoint?’ Exteriorly gendered as a woman, particularly when it comes to their health, and whether or not their pain is ‘real’, Hattrick draws a persuasive link between queerness, and ill health. In discussing Alice James’s (sister to Henry) ‘companionship’ with Katharine, her closest friend and carer, Hattrick comes to perhaps their most moving statement of the book.
Health archive is one way to describe Ill Feelings. Another is manifesto. Which is not to suggest militancy. But while Hattrick does not use a normative plot structure, while they do not stick to one manifestation, there is a clear message: when we define another as ‘disabled’, we are discounting their life and their applicability to what we call progress. ‘Medicalisation presents a view of the disabled individual as tragic [. . .] disabled — that is considered a dirty word. Either way, disability is a construct, an ideological one determined by capitalism and individualism.’ Capitalism is closing the borders of language around us, and in so doing, is narrowing the human experience down to a sharp, ableist point.
In 1995, Alice Hattrick’s mother collapsed at home, an episode which led to a diagnosis of myalgic encephalomyelitis, or ME. Not long after that, Alice too was diagnosed with chronic fatigue syndrome, or CFS. What is ME/CFS? In part, Ill Feelings is a response to that question, the book being a wide-ranging case file of Hattrick’s relationship with illness. What becomes immediately clear, however, is that ME/CFS is criminally misunderstood and ignored. Its symptoms are numerous. In the case of Alice’s mother, who keeps a ‘health archive’, they are: ‘severe impairment’ of cognitive functioning, interrupted sleep, mood swings, headaches, sore throat, nausea, heart palpitations, anxiety, ‘and of course extreme fatigue.’ The list goes on. It is an all-consuming illness, compounded linguistically by its name: in one case, Alice’s mother has written on the back of a photo, ‘I am 29. Pre-ME — JUST,’ as if her identity was born with the disease. ‘What if I had no ill feelings’ Hattrick writes, ‘what would I be doing? Everything comes back to them — all the reasons I cannot do anything and all the meaning in my life.’
Ill Feelings is not a book, like so many on illness, that is preoccupied with ‘wellness.’ Hattrick is not interested in helping people to feel better about their ‘disabled’ friends, colleagues, strangers. In many ways, it is a hard book to categorise — and all the better for that difficulty — since so many doctors and medical officials find ME itself so confusing. Most of the trouble, though, comes from a cultural disregard for ‘invisible illnesses.’ In 2008, when Incapacity Benefits were repackaged as the Employment and Support Allowance in the UK, the definition of sickness was altered. ‘Anyone applying for ESA was deemed to be playing a “sick role”, a term borrowed from American medical sociologist Talcott Parsons, who argued that when someone becomes sick they enter a role of “sanctioned deviance” in the eyes of society.’ It is practically impossible not to become angry while reading about the many ways Hattrick is infantilised. This is most keenly observed when they and their mother are blamed for each other’s diagnoses: ‘[W]e were told we were hysterical, that we were inventing a language of our own demise, that for some reason we needed to be ill to get the attention we desired. My illness could be explained by my mother’s.’
Hattrick’s ability to reflect life with ME in form and language is complex and brilliant. The structure of Ill Feelings appears initially as haphazard, perhaps, but the more you read, the more it clarifies: this is not a book of simple narrative, of gradual progression. The chapters shift around in both tone and environment. While the spine of the story is Alice’s — their various treatments ranging from the comforting to the absurd, and their relationship with their mother — there are many branches and loops throughout the book. We move from Virginia Woolf’s account of illness to Elizabeth Barrett Browning’s debilitating fatigue, to the most current research on ME. The structure illustrates what Hattrick writes about ME: ‘Sick time is not linear time. It is circular. It lapses and relapses, it drags, loops and buffers. [. . .] I live in sick time, inside my loop of pain.’
Perhaps a technique learned while navigating the treacherous waters of ME, Hattrick also adopts many voices in Ill Feelings. Often they are a researcher and historian, digging through diaries and records with a careful touch; other times they write something like a medical professional might, giving us an idea as to how much information (and how many confusing acronyms) Hattrick must remember. ‘The GAD-7 is a seven-question anxiety screening test, developed in 2006. The PHQ-9 is a self-administered patient health questionnaire, a version of the Primary Care Evaluation of Mental Disorders developed by Dr Robert Spitzer. . .’ Running through this health archive, though, is Hattrick the writer: intelligent, poetic, constantly looking to make the experience of pain into language. The book comes back again and again to the loss of speech and words. At university, when Hattrick’s ‘hands seized up a few days before I was due to sit my final exams’, they are in such acute pain, they ‘could not hold a pen.’ And, later in the book: ‘Pain lends itself to metaphor, welcomes it, even — like illness in general. [. . .] Sometimes there is no reason for our ill feelings, just like there isn’t enough language: it is too arbitrary.’
Given the way that it suppresses verbalisation, it is natural to draw parallels between living with pain — on the boundaries of how useful language can actually be — and living as a minority, which we too often take to be silent. Illness has always been harder territory to walk for those who are rarely believed in any context. ‘Who else has lived lives that challenge dominant narratives,’ Hattrick writes, ‘about class, and family, and race, and illness? Who has stories to tell to make sense of the place we currently inhabit that cannot be absorbed into the central one, both a disruption and an essential counterpoint?’ Exteriorly gendered as a woman, particularly when it comes to their health, and whether or not their pain is ‘real’, Hattrick draws a persuasive link between queerness, and ill health. In discussing Alice James’s (sister to Henry) ‘companionship’ with Katharine, her closest friend and carer, Hattrick comes to perhaps their most moving statement of the book.
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. [. . .] Can the category of lesbian not be expanded to include ‘companions’? Can Queer? Is the re-writing of history not driven by the same resistive force as queerness — and a way to resist being written out again?
Health archive is one way to describe Ill Feelings. Another is manifesto. Which is not to suggest militancy. But while Hattrick does not use a normative plot structure, while they do not stick to one manifestation, there is a clear message: when we define another as ‘disabled’, we are discounting their life and their applicability to what we call progress. ‘Medicalisation presents a view of the disabled individual as tragic [. . .] disabled — that is considered a dirty word. Either way, disability is a construct, an ideological one determined by capitalism and individualism.’ Capitalism is closing the borders of language around us, and in so doing, is narrowing the human experience down to a sharp, ableist point.