Alice Hattrick was eight years old when their mother contracted mycoplasma pneumonia. An author who prefers the gender-neutral pronoun “they” found her on the kitchen floor of his Brighton home. Their mother was in her early thirties. She experienced flu symptoms – fatigue, headache, chest pain and fever – from which she never recovered. It was two years before she was diagnosed with myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS).
In their book Bad feelings, a mixture of memoirs, literary criticism and analysis of the social consequences of a chronic illness, Hattrick, now 34, carries on from his mother’s account of the day: “Alice witnessed this,” she later wrote as if I had witnessed a crime. and needed a new identity. ” The Hattrick began to develop symptoms of his own, strikingly similar to those of their mother. They experienced stomach aches and headaches that lasted all day; they wanted to sleep during school holidays; they felt pain in their arms and legs after exercise. Later, Hattrik was also diagnosed with CFS by a doctor at a children’s hospital. “I remember being almost happy with my diagnosis, even if it didn’t completely convince me,” they write. “It made me feel closer to my mother.”
The phrase “bad feelings,” Huttrick told me as we sat at their kitchen table in Finchley, north London, in mid-September, was the first phrase their mother used. The author, who also works as a video producer and assistant professor at London College of Fashion, had his blond hair trimmed and wore socks and birkenstocks. On the table was an overflowing bowl of fresh fruit and a handful of purple wildflowers in a small glass jar. Beneath him lay Daphne, Hattrick’s Norfolk terrier, curled up in a ball, sheltering from the heavy rain outside.
“When she reported my symptoms, my mom used this phrase:“ Alice is not feeling well in the chest area, ”they said. “I liked its double meaning. If you have a bad feeling towards someone, it is disobedient, all those things that made me feel as a child: that I was bad. Many of the terms I come across in the book — the cultural language of illness — refer to crime or simulation. This language assumes that illness is a social problem, as if you caused the problem, you did something bad: it is your choice. “
As a child, Hattrick was encouraged to take on the role of “good girl” when visiting doctors’ offices or hospitals to get help. According to Hattrick, this was “infantilism.” It is the same with their mother, who was treated as a teenager by both family members and health professionals. It was something like, “Stop acting, even though she was in her thirties with two children.”
Hattrick’s illness often angered them, and they passed it on to their mother. Their grandmother was convinced that they were “imitating” their mother, which made them angry. “It was a way to explain something that didn’t make sense,” they said, “and a way to reach out to my mom, like, ‘Look what you’re doing.’ You are causing so much drama. “
The disease that Hattrick and their mother live from has been referred to as ME / CFS since the late 1980s. Since then, more than 20 different definitions of this condition have been proposed by practitioners. “It’s still an impossible diagnosis – too serious to be fake, too subjective to be real,” Hattrick writes. There is no single definition of ME / CFS and no single known cause that has led to misconceptions about what it is and how it should be treated. This, in turn, is considered to be both physical and mental illness. This has not been studied enough and there is no known cure – or even reliable, evidence-based treatment recommendations…
Due to these different definitions, it is difficult to ascertain exactly how many people live with ME / CFS, but research shows that this affects up to 250,000 people in the United Kingdom. The National Results Database suggests that 76 percent of clinically evaluated adults with ME / CFS are women. When researching Bad feelingsfor which Huttrick read letters and diaries from people such as Elizabeth Barrett Browning, Virginia Woolf, Alice James and Florence Nightingale, all of whom were suffering from diseases that were probably ME. This made Hattrick realize that much of the current medical research on the disease still relies on gender-based, sexist stereotypes: patients are “weak in temperament” or “hysterical,” and rest is a panacea. “We are no longer in the Victorian era,” Hattrick said, “but we still think about the conditions associated with fatigue.”
This disregard for chronic disease, especially when it primarily affects women, is also heavily debated in conversations about the persistent, long-term symptoms of Covid-19 – or “Long covid”… In the weeks following the start of the global pandemic, ME / CFS advocacy groups warned of an impending rise in the number of cases among patients affected by Covid-19. Soon there were reports of people who, months after contracting the virus, were tired and unable to do so. just like walking to the corner store… Reports show that there are four times more women who develop long-term Covid than men.
“We see these patterns:“ Yes, you had an infection, but now it is not, so you should only think about the fact that you are sick, ”said Hattrick. They traced these patterns throughout history: in 1855, Florence Nightingale contracted brucellosis during the Crimean War, and it became chronic, causing insomnia, deep exhaustion, nausea and fatigue for the rest of her life. However, her biographers did not believe that she was sick. “It’s a sad irony that Florence Nightingale, the founder of modern nursing … should also be remembered as the most famous disabled person in history and arguably the most successful simulation game,” AJ Young wrote in his book. British Medical Journal… Reports of chronic fatigue syndrome followed other massive outbreaks of polio in the 1950s and SARS in 2003. Those believed to have recovered from the initial symptoms of Covid-19 are finding they are still feeling tired. ” are not taken seriously, ”Hattrick said. “They are told that they are worried about their health. But we cannot fire them. “
Hattrick contracted giardiasis when they were two years old. When their mother took them to the doctor, “they didn’t believe I had giardia at all,” they said. “In such conditions, women and mothers are not taken seriously. Even if you can prove the infection, you still need to convince someone to do the test. ” The lack of institutional ME / CFS studies forces patients to conduct their own. “In the end, you know more about your case than the doctor knows, and this can be a matter of controversy.” Hattrick’s book consists of their own scientific research, as well as diaries and letters from historic women who detailed their symptoms, and notes from their mother’s extensive “health archive” – prescription cards, doctors’ reports, and letters of plea for help. Holding onto such items may seem eccentric, but it is understandable for anyone desperate for information about their under-studied disease. It is also a form of work that publicly funded researchers should really do. “We’re doing invisible work,” Hattrick said. “The gender-based nature of our illness is reflected in the work we end up doing in relation to our own illnesses, but also in relation to our own domestic activities. The chronic disease is female because you end up at home all the time. “
This work is done in spite of the illness. When Suzanne Clarke won the Women’s Fiction Award for Piranesi On September 9, she presented her award to other women “disabled by prolonged illness.” Clarke fell ill while promoting her first book and was eventually diagnosed with chronic fatigue syndrome. Piranesi “This is a book that I never thought I could write. I never thought I would be healthy enough. So it seems doubly unusual, ”she said.
Hattrick has learned to work at a time that suits them, providing them with days of rest. Their home was filled with books and pressed and dried flowers, and their pigment would soon be used to dye fabric. In the middle of our conversation, the postman rang at the door and Hattrick carried the package inside. “This is a book,” they said. “They piss me off, postmen, like, ‘How do you read all this? “, All these jokes. And [I say], ‘This is my job! I’m not mad at you for delivering another package! “
Hattrick never received government sickness benefits, but they grew up in the benefit system – their single mother could not work, so she received disability benefits and then employment support benefits. V Bad feelings they are monitoring the introduction of these various types of disability benefits. “I wanted to understand how ME / CFS fits into the government narrative, how some people think of chronic fatigue syndrome as a form of simulation — again the word — and this broader social phenomenon of disease deception. I wanted to understand why the people who did research on chronic fatigue were the same people who advised the Department of Labor and Pensions (DWP) on how to view illness as a behavioral problem, a social problem, rather than a medical problem. I wanted to understand how DWP then made this idea useful to them as a legal way halving the number of people receiving disability benefits… “
“Society is an eiblist,” they added. “Not everyone can adapt to one style of work. And if you don’t, you will be made to feel guilty, as if you are letting everyone down. While in fact these structures are letting you down. “
Hattrick’s experiences with ME / CFS also influenced their understanding of their gender identity. Only in the last year have they begun to use gender-neutral pronouns socially. “The ability to experiment with your gender representation is limited if you need to keep portraying a ‘good’ or ‘feminine’ patient to be believed,” they said. Looking back at my childhood traveling with her mother to see a doctor: “She will always be a hysterical mother, and I will always be a naughty girl.”
They now feel freer to ask questions about the medical story they have been taught. “The only way to understand ME / CFS as a condition is not to think of it in terms of binaries.”
Ill Feelings by Alice Hattrick is published by Fitzcarraldo Editions.