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A review by danijaybee
Brain on Fire: My Month of Madness by Susannah Cahalan
4.0
A scary and necessary confrontation of chronic illness
As someone who has recently done battle to get my own diagnoses and has uncovered chronic illness in the process, I was equal parts excited and nervous for this book, especially since my disorders are neurological in many ways as well.
Susannah does not disappoint. It’s riveting and it’s tragic and it’s scary and it’s hopeful and it’s necessary. She recounts the stories of others who were able to pursue their own diagnosis after reading her story, and it validates why I speak up about my own so much, knowing how many people have come to me and said that they didn’t even know this illness existed until they read a post of mine or something, making them advocate for themselves with their doctors.
It’s scary because it is just a small window into what can happen when your nervous system is, as the title suggests, “on fire.” It occasionally felt like reading into a potential future and it absolutely inspired conversations I needed to have about what happens if I were to experience similar symptoms or see progression in my neurological issues.
(Not ironically, I was also a little bit relieved to see that she found her answers at the same clinical organization I am also a patient at.)
I don’t know that I would recommend this book to everyone, but I do think it’s a scathing indictment that many need to read on our medical system, how busy doctors are and how impersonal medical treatment has become when we make it a for-profit business. The author acknowledges that was fortunate enough to pay for out of pocket expenses being denied by insurance—how many of us are not in that position? How many of us aren’t in a position to be able to truly advocate for ourselves when a doctor gets it wrong, like several of hers did early on? How many of us lack the education or are too sick or too tired to fight a system that won’t listen to us? As someone doing battle with this system for the last several years, I can confirm that it takes a team and it takes a champion that isn’t the patient and it takes so, so, so much strength and endurance to get to a diagnosis finish line for so, so many of us—specialists in my illness, for instance, are notorious for not accepting insurance, placing the burden of expenses and the barrier to a diagnosis back on the patients, who are already sacrificing so much time and expense and commute to get to the answers they need. When someone fucks up my blood tests, I have to carve out another half-day away from work to do those tests; when I have at-home testing done, a half-day goes into returning equipment; when you’re waiting on results or analysis or your doctor to return your message, medication goes missed, symptoms get worse, work gets skipped because you’re not able to complete anything.
The whole thing is a complete fucking disaster, and the patients are the ones who suffer in a system designed for maximum return. Try telling someone who has to wait seven months to see a neurologist that Canadian healthcare isn’t worth it because it takes a long time. Waiting periods are nothing to people with chronic illness, but bearing the weight of both a profit-minded system and the expenses that add up month to month is absolutely an issue.
I suppose that’s my own addendum to the book, although Cahalan does touch on it briefly as part of a central message: How many people suffer because the system is rotten at its core?
As someone who has recently done battle to get my own diagnoses and has uncovered chronic illness in the process, I was equal parts excited and nervous for this book, especially since my disorders are neurological in many ways as well.
Susannah does not disappoint. It’s riveting and it’s tragic and it’s scary and it’s hopeful and it’s necessary. She recounts the stories of others who were able to pursue their own diagnosis after reading her story, and it validates why I speak up about my own so much, knowing how many people have come to me and said that they didn’t even know this illness existed until they read a post of mine or something, making them advocate for themselves with their doctors.
It’s scary because it is just a small window into what can happen when your nervous system is, as the title suggests, “on fire.” It occasionally felt like reading into a potential future and it absolutely inspired conversations I needed to have about what happens if I were to experience similar symptoms or see progression in my neurological issues.
(Not ironically, I was also a little bit relieved to see that she found her answers at the same clinical organization I am also a patient at.)
I don’t know that I would recommend this book to everyone, but I do think it’s a scathing indictment that many need to read on our medical system, how busy doctors are and how impersonal medical treatment has become when we make it a for-profit business. The author acknowledges that was fortunate enough to pay for out of pocket expenses being denied by insurance—how many of us are not in that position? How many of us aren’t in a position to be able to truly advocate for ourselves when a doctor gets it wrong, like several of hers did early on? How many of us lack the education or are too sick or too tired to fight a system that won’t listen to us? As someone doing battle with this system for the last several years, I can confirm that it takes a team and it takes a champion that isn’t the patient and it takes so, so, so much strength and endurance to get to a diagnosis finish line for so, so many of us—specialists in my illness, for instance, are notorious for not accepting insurance, placing the burden of expenses and the barrier to a diagnosis back on the patients, who are already sacrificing so much time and expense and commute to get to the answers they need. When someone fucks up my blood tests, I have to carve out another half-day away from work to do those tests; when I have at-home testing done, a half-day goes into returning equipment; when you’re waiting on results or analysis or your doctor to return your message, medication goes missed, symptoms get worse, work gets skipped because you’re not able to complete anything.
The whole thing is a complete fucking disaster, and the patients are the ones who suffer in a system designed for maximum return. Try telling someone who has to wait seven months to see a neurologist that Canadian healthcare isn’t worth it because it takes a long time. Waiting periods are nothing to people with chronic illness, but bearing the weight of both a profit-minded system and the expenses that add up month to month is absolutely an issue.
I suppose that’s my own addendum to the book, although Cahalan does touch on it briefly as part of a central message: How many people suffer because the system is rotten at its core?