The phrase “sick feelings,” Hattrick told me, was the first one his mother used when we sat at his kitchen table in Finchley, north London, in mid-September. The author, who also works as a video producer and an associate lecturer at the London College of Fashion, had white-blond hair, and wore socks and Birkenstocks. On the table was an overflowing bowl of fresh fruit and a handful of purple wild flowers in a small glass jar. Beneath it was Daphne, Hattrick’s Norfolk Terrier, who folded up, taking shelter from the heavy rain outside.
“When she was reporting my symptoms, my mother used the phrase, ‘Alice has a sick feeling in her chest area,'” he said. “I liked the double meaning of it. If you feel bad for someone it’s naughty, all these things that made me feel as a kid: that I was bad. I encounter a lot of language in the book. falls – the cultural language of disease – is related to criminality, or ugliness. The language suggests that disease is a social problem, that as you have created the problem, you have done something bad: it is a choice.”
As a child, Hattrick was encouraged to play the role of a “good girl” when doctors went to surgery or hospitals to get help. It was “infantation,” Hattrick said. The same went for his mother, who was treated “as a teenager” by family members and medical professionals. It was like, ‘Stop pretending,’ even though she was in her thirties with two kids.”
Hattrick’s illness often angered him, and he took it out on his mother. His grandmother was convinced that he was “imitating” his mother, which angered him even more. “It was a way to explain something that doesn’t make sense,” he said, “and a way to meet my mom, like, ‘Look what you’re doing. You’re doing so much drama.'”
The disease Hattrick and his mother live with has been known as ME/CFS since the late 1980s. Since then more than 20 different definitions of the condition have been put forward by physicians. “It’s still an impossible diagnosis—too serious to be fake, too subjective to be real,” Hattrick writes. There is no single definition for ME/CFS, and no known cause, which has led to misconceptions about what the condition is, and how it should be treated. In turn, it has been considered both a physical illness and a mental illness. It has been poorly 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 how many people are living with ME/CFS, but research suggests it affects 250,000 people in the UK. The National Outcomes Database shows that 76 percent of clinically assessed adults with ME/CFS are female. while doing research sick feeling, Hattrick read the letters and diaries of figures such as Elizabeth Barrett Browning, Virginia Woolf, Alice James, and Florence Nightingale—all of whom suffered from illnesses that likely had ME. He felt that much of the contemporary medical research surrounding the condition still relied on gender, sexist tropes: the “weak nature” of victims, or being “hysterical,” and everyone else being treated. “We are no longer in the Victorian era,” Hattrick said, “but thinking about situations that involve fatigue is still the same.”
Such dismissal of the chronic disease, especially when it affects mostly women, also plays into the conversation around persistent, long-term symptoms of COVID-19 – or “long COVID”. Within weeks of the start of the global pandemic, ME/CFS advocacy groups warned of a rise in cases of patients with COVID-19. Soon there were reports of people who, after being hit by the virus for months, were exhausted, unable to walk to the corner store. Reports suggest that women who have covid for a longer period of time are four to one more likely than men.
“We see these patterns of ‘Yeah, you had the infection, but now you don’t have it, so you should just think you’re sick,'” Hattrick said. They have traced such patterns throughout history: In 1855, Florence Nightingale caught brucellosis during the Crimean War, and it became chronic, causing a lifetime of insomnia, profound exhaustion, nausea, and fatigue. Yet her biographers could not believe that she was ill. “It is a sad irony that Florence Nightingale, the founder of modern nursing … should be remembered as history’s most famous invalid and possibly even its most successful abuser,” wrote AJ Young. british medical journal. Reports of chronic fatigue syndrome have followed other large-scale outbreaks: of polio in the 1950s, and of SARS in 2003. Those who are believed to have recovered from early symptoms of Covid-19, only to find that they still experience fatigue, “are not being taken seriously,” Hattrick said. “He has been told that he has health concerns. But we cannot dismiss them.”
Hattrick was diagnosed with Giardia when he was two years old. When his mother took him to the doctor, “he couldn’t believe I had Giardia in the first place”, he said. “Women and mothers in those settings are not taken seriously. Even if you can provide evidence of infection, you still have to persuade someone to get tested.” The lack of institutional research in ME/CFS has forced patients to do their own work. “You know more about your thing than the doctor, and that can be a point of contention.” Hattrick’s book is composed of her own scientific research, as well as diaries and letters from historical women who described her symptoms, and notes from her mother’s vast “health collection” – appointment cards, doctor’s reports and help. Letters requesting for. Holding onto such items may sound cynical, but it’s understandable to anyone desperate for information about their less-researched disease. It is also a form of work, work that must actually be done by state-funded researchers. “We’re doing invisible labor,” Hattrick said. “The gender nature of our illness is reflected in the kind of work we do around our illnesses, but also around our household activities. Chronic illness is considered feminine because you stay at home all the time.”
This labor is done in spite of illness. When Susanna Clark Won the Women’s Award for Fiction Piranesi On September 9, she dedicated her award to other women “disabled by chronic illness.” Clarke became ill while promoting her first book and was eventually diagnosed with chronic fatigue syndrome. Piranesi “That’s the book I never thought I’d get to write. I never thought I would be good enough. So it feels doubly extraordinary”, she said.
Hattrick has learned how to work in times that are appropriate for him, making sure he has days to rest. His house was filled with books, and flowers that had been pressed and dried, their pigments would soon be used to dye clothes. During our conversation, a postman rang the doorbell, and the hat-trick brought in a package. “It’s a book,” he said. “They get so much piss out of me, post people, like ‘How are you reading all this?’, all these jokes. And [I say], ‘it’s my job! I don’t take your piss to deliver another parcel!'”
Hattrick never received government benefits for her illness, but grew up in the benefits system – her single mother was unable to work, and so she received disability benefits and then employment support allowance. In sick feeling They trace the introduction of these different types of disability benefits. “I wanted to understand how ME/CFS fit into a government narrative, how some people think of chronic fatigue syndrome as a malady” – that’s the word again – “and this widespread societal phenomenon of disease deception I wanted to understand that the people who were doing research into chronic fatigue were the same people advising the Department for Work and Pensions (DWP) on how to treat the illness as a behavioral problem, a medical problem. Instead of a social problem. I wanted to understand how the DWP made this idea useful to them as a legitimate way to halve the number of people on disability benefits.
“Society is capable,” he said. “Not everyone can fit into one way of doing things. And if you don’t, you’re made to feel like you’re in the wrong, like you’re letting everyone down. When in reality you are those structures.” being disappointed by.”
Hattrick’s ME/CFS experience has also influenced her understanding of her gender identity. It is only in 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 present as a ‘nice’ or ‘feminine’ patient to be believed,” he said. Given her childhood spent going to medical appointments with her mother, “she will always be the hysterical mother, and I will be the naughty little girl.”