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  1. The Culture Interview
7 October 2021

“Society is ableist”: Alice Hattrick on gender, chronic illness and long Covid

The author talks about their new book Ill Feelings, and why women are too frequently dismissed by doctors.

By Ellen Peirson-Hagger

Alice Hattrick was aged eight when their mother collapsed with mycoplasma pneumonia. The author – who prefers the gender-neutral pronoun “they” – found her on the kitchen floor at their home in Brighton. Their mother was in her early thirties. She experienced flu-like symptoms – fatigue, headache, chest pain and fever – from which she never recovered. It took two years before she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

In their book Ill Feelings, a blend of memoir, literary criticism, and analysis into the social effects of chronic illness, Hattrick, now 34, transposes their mother’s account of that day: “‘Alice witnessed this,’ she later wrote, as if I had observed a crime and needed a new identity.” Hattrick started to develop their own symptoms, which bore a striking similarity to their mother’s. They experienced stomach aches and headaches that lasted all day; they felt like sleeping during school break times; they felt pain in their arms and legs after PE. Later, Hattrick too would be diagnosed with CFS, by a doctor at a children’s hospital. “I remember feeling almost pleased with my diagnosis, even if I was not entirely convinced by it,” they write. “It made me feel closer to my mother.”

The phrase “ill feelings”, Hattrick told me as we sat at their kitchen table in Finchley, north London, in mid-September, was one their mother had used first. The author, who also works as a video producer and an associate lecturer at the London College of Fashion, had cropped white-blond hair, and wore socks and Birkenstocks. On the table sat an overflowing bowl of fresh fruit and a handful of purple wild flowers in a small glass jar. Underneath it lay Daphne, Hattrick’s Norfolk terrier, who was curled up, sheltering from the heavy rain outside.

“When she was reporting my symptoms, my mum used this phrase, ‘Alice gets an ill feeling in her chest region,’” they said. “I liked its double meaning. If you have an ill feeling towards somebody it’s naughty, all these things that I was made to feel as a child: that I was bad. A lot of language I encounter in the book – the cultural language of illness – relates to criminality, or malingering. The language suggests that illness is a societal problem, as in you’ve caused the problem, you’ve done something bad: that it’s a choice.”

As a child, Hattrick was encouraged to take on the role of “the good girl” when visiting doctors’ surgeries or hospitals in order to get help. It was “infantilising”, Hattrick said. The same went for their mother, who was treated by family members and medical professionals alike “as a teenager. It was like, ‘Stop acting out’, even though she was in her thirties with two children.”

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[See also: Nicky Chinn: “I’ve been fighting, one way or another, all my life”]

Hattrick’s illness often made them angry, and they took it out on their mother. Their grandmother was convinced that they were “mimicking” their mother, which only made them angrier. “It was a way of explaining something that doesn’t make sense,” they said, “and a way to get at my mum, like, ‘Look at what you’re doing. You’re causing so much drama.’”

The illness with which Hattrick and their mother live has been understood as ME/CFS since the late 1980s. Since then more than 20 different definitions of the condition have been put forward by medical practitioners. “It is still an impossible diagnosis – too severe to be fake, too subjective to be real,” writes Hattrick. There is no single definition for ME/CFS, and no one known cause, which has led to misconceptions about what the condition is, and how it should be treated. It has in turn been considered both a physical illness and a mental illness. It has been under-studied and there is no known cure – or even reliable, evidence-based treatment guidelines.

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Because of these different definitions, it is difficult to ascertain exactly how many people are living with ME/CFS, but research suggests it affects up to 250,000 people in the UK. The National Outcomes Database suggests that 76 per cent of clinically-assessed adults with ME/CFS are female. When researching Ill Feelings, Hattrick read the letters and diaries of figures such as Elizabeth Barrett Browning, Virginia Woolf, Alice James and Florence Nightingale – who all suffered from illnesses likely to have been ME. They realised that much of the contemporary medical research surrounding the condition still relied on gendered, sexist tropes: of sufferers having “weak dispositions”, or being “hysterical” and of rest being a cure-all. “We’re not in the Victorian age anymore,” Hattrick said, “but the thinking around conditions that involve fatigue is still the same.”

Such dismissal of chronic illness, particularly when it mostly affects women, has also been at play in conversations surrounding persistent, long-term symptoms of Covid-19 – or “long Covid”. Within weeks of the global pandemic beginning, ME/CFS advocacy groups warned of the coming uptick in cases from patients who had suffered from Covid-19. Soon there were reports of people who, months after catching the virus, remained fatigued, unable to do so much as walk to the corner shop. Reports suggest that women who get long Covid outnumber men by as much as four to one.

“We witness these patterns of ‘Yeah, you had an infection, but you don’t have it now, so you must only think that you’re ill,’” Hattrick said. They have traced such patterns throughout history: in 1855, Florence Nightingale caught brucellosis during the Crimean War, and it became chronic, causing insomnia, profound exhaustion, nausea and fatigue for the rest of her life. Yet her biographers have not believed that she was ill. “It is a sad irony that Florence Nightingale, the founder of modern nursing… should also be remembered as history’s most famous invalid and possibly as its most successful malingerer,” wrote AJ Young in the British Medical Journal. Reports of chronic fatigue syndrome have followed other mass outbreaks: of polio in the 1950s onwards, and of SARS in 2003. Those who are thought to have recovered from the initial symptoms of Covid-19, only to find they are still experiencing fatigue, “aren’t being taken seriously,” Hattrick said. “They’re told they have health anxiety. But we can’t dismiss them.”

Hattrick had the disease giardia when they were two years old. When their mother took them to the doctor, “they didn’t believe I had giardia in the first place”, they said. “Women and mothers aren’t taken seriously in those settings. Even though you can evidence the infection, you still have to convince someone to do the test.” The lack of institutional research into ME/CFS has led patients to carry out their own. “You end up knowing more about your thing than the doctor knows, and that can be a point of contention.” Hattrick’s book is made up of their own scientific research, as well as diaries and letters of the historic women who detailed their symptoms, and notes from their mother’s vast “health archive” – of appointment cards, doctor’s reports and letters pleading for help. Holding onto such items may seem eccentric, but it is understandable behaviour for anyone desperate for information about their under-researched illness. It’s also a form of work, work that should really be done by state-funded researchers. “We’re doing the invisible labour,” Hattrick said. “The gendered nature of our illness is mirrored in the kinds of work that we end up doing around our own illnesses, but also around our own domestic activity. Chronic illness is gendered feminine because you end up being at home all the time.”

[See also: “Long Covid” has spurred a big research effort, which promises to do more than help sufferers]

This labour is done in spite of illness. When Susanna Clarke won the Women’s Prize for Fiction for Piranesi on 9 September, she dedicated her award to other women “incapacitated by long illness”. Clarke became ill while promoting her first book and was eventually diagnosed with chronic fatigue syndrome. Piranesi “is the book that I never thought I would get to write. I never thought I’d be well enough. So this feels doubly extraordinary”, she said.

Hattrick has learned how to work in the time that suits them, ensuring they have days for rest. Their house was filled with books, and flowers that had been pressed and dried, their pigment soon to be used to dye fabric. Part way through our conversation, a postman rang the doorbell, and Hattrick brought a package inside. “It’s a book,” they said. “They take the piss out of me so much, the post people, like ‘How are you reading all this?’, all these jokes. And [I say], ‘It’s my job! I don’t take the piss out of you for delivering another parcel!’”

Hattrick hasn’t ever received government benefits for their illness, but they grew up in the benefits system – their single mother was unable to work, and so received incapacity benefit and then employment support allowance. In Ill Feelings they trace the introduction of these different types of disability benefits. “I wanted to understand how ME/CFS fitted into a governmental narrative, how some people think of chronic fatigue syndrome as a form of malingering” – there’s that word again – “and this wider social phenomenon of illness deception. I wanted to understand how the people who were doing research into chronic fatigue were the same people who were advising the Department for Work and Pensions (DWP) about how to think of illness as a behavioural problem, a societal problem rather than a medical problem. I wanted to understand how the DWP then made this idea useful to them as a legitimate way of halving the number of people on incapacity benefit.”

“Society is ableist,” they added. “Not everyone can fit into one way of working. And if you don’t, you’re made to feel like you’re the one that’s wrong, like you’re letting everyone down. Whereas actually you’re the one being let down by those structures.”

Hattrick’s experience of ME/CFS has impacted their understanding of their gender identity too. It’s only over the last year that they have used gender-neutral pronouns socially. “The possibility of experimenting with your gender presentation is limited if you have to keep presenting as the ‘good’ or ‘feminine’ patient to be believed,” they said. Looking back on their childhood spent going with their mother to medical appointments, “She would always be the hysterical mother, and I would be the naughty little girl.”

Now, they feel freer to query the medical narrative that they were taught. “The only way we’re going to understand ME/CFS as a condition is if we don’t think about it in terms of binaries.”

“Ill Feelings” by Alice Hattrick is published by Fitzcarraldo Editions

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