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slothsandpit's review
4.0
A beautiful book - engaging, the perfect mix of memoir, history and science.
cozykorok's review
4.0
Lots of love and appreciation for this book.
Some rambling thoughts:
Written as part memoir and part academic style research I enjoyed the alternating personal accounts of life with chronic illness and the history of other ill women through history.
It was a slower read for me because I did find the content heavy at times. Women have really been let down by our healthcare system for generations and it can be disheartening to read about at times.
Overall I highly recommend giving this a read.
Some rambling thoughts:
Written as part memoir and part academic style research I enjoyed the alternating personal accounts of life with chronic illness and the history of other ill women through history.
It was a slower read for me because I did find the content heavy at times. Women have really been let down by our healthcare system for generations and it can be disheartening to read about at times.
Overall I highly recommend giving this a read.
e333mily's review
4.0
"I know it in my body. This is what my mother and I say to each other sometimes, when our knowledge of our own experiences and sensations are dismissed, when we don't know if we have made something up or it really happened, because we are supposed to question that lived reality, to believe it to be fiction, unevidenced and illegitimate. I know it in my body. Our bodies are our archives, the storehouses of our shared knowledge. I know it in her body, and in mine."
"The shame arose in encounters with able people, specifically when their idea of me and my inherent bodily knowledge of my own needs and limitations did not align with their intellectual assumptions. Growing up, I soon found that when I felt too ill to be a 'normal' teenager, I was told I was not deserving of 'special' treatment, and when I behaved as a 'normal' teenager, I betrayed their idea of a sick one. After all, how was I to know what was best for me, I was only a child. But we — disabled people — will always be treated like children."
"Only identifiable diseases get names. Being in a lot of pain is not an identifiable disease — it is a symptom, in this case, without an apparent cause. Pain is almost beyond medicine, beyond the body; Kellgren said that the phenomena of pain belonged to 'that borderland between the body and the soul'. This is the power of diagnosis. It is more than a name. It can be a curse, a wrong thing.
If my ill feelings are a symptom of the human condition, why do I feel them more, or have a lower tolerance of them? Isn't everyone in pain? Isn't that what makes us human? Except, of course, I am not human, I am also gendered. [...]
There is a hierarchy of pain, and women's pain is the worst — not objectively worse, they just feel it more. Pain, when it is relayed by women — in a medical context, in any context — is inevitable, insurmountable, and indexes only their gender. Their bodies are speaking out of term, amplifying sensations others find bearable, maybe even negligible. If only these women would stop listening to the pain. They might be able to do what they want to do."
"This is the body I live in, the one I write from, and I read from, and sometimes it is angry. I don't want to be without it, that anger. Sometimes I think I have the right to be angry all the time, the literal expression of the feeling that I want to escape my body, but it is exhausting."
"As Sontag wrote in Illness as Metaphor: 'Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it...Nothing is more punitive than to give a disease a meaning — that meaning invariably being a moral one.'"
"The shame arose in encounters with able people, specifically when their idea of me and my inherent bodily knowledge of my own needs and limitations did not align with their intellectual assumptions. Growing up, I soon found that when I felt too ill to be a 'normal' teenager, I was told I was not deserving of 'special' treatment, and when I behaved as a 'normal' teenager, I betrayed their idea of a sick one. After all, how was I to know what was best for me, I was only a child. But we — disabled people — will always be treated like children."
"Only identifiable diseases get names. Being in a lot of pain is not an identifiable disease — it is a symptom, in this case, without an apparent cause. Pain is almost beyond medicine, beyond the body; Kellgren said that the phenomena of pain belonged to 'that borderland between the body and the soul'. This is the power of diagnosis. It is more than a name. It can be a curse, a wrong thing.
If my ill feelings are a symptom of the human condition, why do I feel them more, or have a lower tolerance of them? Isn't everyone in pain? Isn't that what makes us human? Except, of course, I am not human, I am also gendered. [...]
There is a hierarchy of pain, and women's pain is the worst — not objectively worse, they just feel it more. Pain, when it is relayed by women — in a medical context, in any context — is inevitable, insurmountable, and indexes only their gender. Their bodies are speaking out of term, amplifying sensations others find bearable, maybe even negligible. If only these women would stop listening to the pain. They might be able to do what they want to do."
"This is the body I live in, the one I write from, and I read from, and sometimes it is angry. I don't want to be without it, that anger. Sometimes I think I have the right to be angry all the time, the literal expression of the feeling that I want to escape my body, but it is exhausting."
"As Sontag wrote in Illness as Metaphor: 'Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it...Nothing is more punitive than to give a disease a meaning — that meaning invariably being a moral one.'"
survival_is_insufficient's review
challenging
emotional
hopeful
informative
reflective
medium-paced
5.0
imaginesysiphus's review against another edition
honestly i wish i could have read more and gotten to the more biographical stuff but the memoir parts, especially when the author talked about their mother, were really hard to get through. not that they were emotionally challenging but that it was such a rumination on how real the illness was that it often came across as patronising and bad towards their mother. made continuing to read a chore.
courtneyfalling's review
emotional
informative
reflective
sad
slow-paced
4.0
This was a beautiful, informative portrait of ME/CFS within the UK ‘healthcare’ system. I appreciated how Alice Hattrick interwove her mother’s story and her own (in all the disabled lineage complexities)—interested to see what she writes next.
Content Warnings
Graphic: Chronic illness, Ableism, and Medical content
foggy_rosamund's review
4.0
Alice Hattrick and their mother both have been diagnosed with Chronic Fatigue Syndrome. Alice Hattrick's illness began in childhood, when their mother was also ill, and they struggled to keep up with school, exercise and the general rigours of every day life. Hattrick began to get better in early adulthood, and then developed more fatigue, pain and "ill feelings". This is not a recovery memoir: Hattrick ends the book as sick as they began; nor is it a guide to living with these problems. It's a study of the history of women's experiences with chronic ill-health, and the ways in which the medical establishment continues to mistreat, ignore or cast aside women's experiences, and the ways in which a capitalist society doesn't allow people to recover, or to live with chronic health conditions. Hattrick looks at the medical history of the conditions labelled ME or Chronic Fatigue Syndrome, and factors that lead to conditions being labelled hysterical or a product of thinking in the wrong way. Hattrick also explores historical figures who have struggled with lifelong ill-health: Alice James (sister to the novelist Henry), Elizabeth Barrett Browning, Florence Nightingale, and Virginia Woolf. Hattrick explores these women's experiences, and the ways in which they lived fulfilling lives despite their bouts of illness.
Overall, I found this book useful and compelling, as well as very readable. I was diagnosed with fibromyalgia ten years ago, so much of what Hattrick is writing about is familiar to me. But there were some avenues which I felt were underexplored -- Hattrick mentions two or three times that people of colour find it much harder to be taken seriously when they are dealing with chronic pain or fatigue, but they don't explore this in any depth, or talk to any POC about their experiences. Hattrick is also at pains to separate fibromyalgia and CFS from mental health problems or trauma. Hattrick asserts that their isn't any true divide between mental and physical health, but is also very careful to steer away from the idea that people with CFS have mental health problems, or that their can be any overlap. As someone who has a diagnosis of PTSD as well as fibromyalgia, I often feel thrown aside by narratives like this: I think my mental health has an impact on my physical health, and vice versa, and other people with CFS or fibromyalgia often seems hostile to this view. I feel like if I bring up my PTSD, I'm letting them down!
But with these caveats, I think this is an important book, a carefully researched study, and a great companion for this of us who have ill feelings.
Overall, I found this book useful and compelling, as well as very readable. I was diagnosed with fibromyalgia ten years ago, so much of what Hattrick is writing about is familiar to me. But there were some avenues which I felt were underexplored -- Hattrick mentions two or three times that people of colour find it much harder to be taken seriously when they are dealing with chronic pain or fatigue, but they don't explore this in any depth, or talk to any POC about their experiences. Hattrick is also at pains to separate fibromyalgia and CFS from mental health problems or trauma. Hattrick asserts that their isn't any true divide between mental and physical health, but is also very careful to steer away from the idea that people with CFS have mental health problems, or that their can be any overlap. As someone who has a diagnosis of PTSD as well as fibromyalgia, I often feel thrown aside by narratives like this: I think my mental health has an impact on my physical health, and vice versa, and other people with CFS or fibromyalgia often seems hostile to this view. I feel like if I bring up my PTSD, I'm letting them down!
But with these caveats, I think this is an important book, a carefully researched study, and a great companion for this of us who have ill feelings.