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What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt
What Doesn’t Kill You is the riveting account of a young journalist’s awakening to chronic illness, weaving together personal story and reporting to shed light on living with an ailment forever.
Tessa Miller was an ambitious twentysomething writer in New York City when, on a random fall day, her stomach began to seize up. At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a yearslong nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better.
Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn’s, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications.
Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.
Tessa Miller was an ambitious twentysomething writer in New York City when, on a random fall day, her stomach began to seize up. At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a yearslong nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better.
Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn’s, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications.
Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.
320 pages, Hardcover
First published February 2, 2021
297 people are currently reading
11720 people want to read
About the author
Tessa Miller
1 book114 followersTessa Miller is a Brooklyn-based health and science journalist. Her writing has appeared in the New York Times, New York magazine, Self, Vice, and Medium, among others. She was a senior editor at Lifehacker and the Daily Beast. What Doesn’t Kill You is her first book.
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Displaying 1 - 30 of 542 reviews
April 21, 2022
I really enjoyed this one!
It was helpful and hopeful. Definitely recommend!
It was helpful and hopeful. Definitely recommend!
March 30, 2021
Tessa Miller has written the perfect memoir on chronic disease—one that not only covers her personal story, but one that’s chock-full of research regarding problems with the American medical system, how to find good healthcare, the hurdles often faced with work and relationships, mental health struggles, and many helpful quotes for anyone who deals with chronic health problems—specifically autoimmune disease. This book is written well, and I found her advice helpful.
Having a chronic autoimmune disease, this book led me to constantly reflect throughout—from beginning to end—with chapter five hitting me the hardest. It’s raw and brought me to tears a few times. Here’s a chronic disease sufferer who’s had multiple traumas, has had problems with control…someone who’s had to face anxiety head on and deal with acceptance of a disease with an unknown prognosis. She’s experienced medical PTSD which isn’t something most doctors even recognize. I became fully aware that I was in a familiar zone here and not alone. I devoured every word. I’m not sure I’ve ever connected with a memoir as much as this one.
The biggest takeaway I’m always left with after reading many memoirs is this: this is just one person’s story. It doesn’t make your situation better; in fact, it’s heartbreaking, but I believe it helps one understand the importance of gratitude, hope, and knowing you have what it takes to overcome. It’s hard not to complain when you’re constantly sick, and it’s especially hard when you don’t have anyone to talk to about it, or just a good support system in general. I think it’s stories like Tessa Miller’s that reiterate an important truth often out of sight: none of us are alone. We can also seek the help we need and should never be ashamed of it.
There was a section in the book that I found thought-provoking where the author mentions taking advice from others and how it’s processed. I do agree that it’s hard to take advice from others and can be quite irritating when your ill and just downright sick of it all, but it’s something that I always welcome. Had I not been informed about my holistic doctor, I’m not sure where I’d be today as far as my health. Everything I’ve learned has been from others, whether it be books, YouTube, online, or word of mouth. I’ll be more mindful in the future about the advice that I offer to others though, because it isn’t always welcomed, and I think people get overstimulated with it all. This is just one section of the book that really got my brain churning.
Overall, I found this book to be inspiring, insightful, and hopeful. This is a good book for all chronic disease sufferers, especially those dealing with Crohn’s Disease and other autoimmune diseases.
5*****
Having a chronic autoimmune disease, this book led me to constantly reflect throughout—from beginning to end—with chapter five hitting me the hardest. It’s raw and brought me to tears a few times. Here’s a chronic disease sufferer who’s had multiple traumas, has had problems with control…someone who’s had to face anxiety head on and deal with acceptance of a disease with an unknown prognosis. She’s experienced medical PTSD which isn’t something most doctors even recognize. I became fully aware that I was in a familiar zone here and not alone. I devoured every word. I’m not sure I’ve ever connected with a memoir as much as this one.
The biggest takeaway I’m always left with after reading many memoirs is this: this is just one person’s story. It doesn’t make your situation better; in fact, it’s heartbreaking, but I believe it helps one understand the importance of gratitude, hope, and knowing you have what it takes to overcome. It’s hard not to complain when you’re constantly sick, and it’s especially hard when you don’t have anyone to talk to about it, or just a good support system in general. I think it’s stories like Tessa Miller’s that reiterate an important truth often out of sight: none of us are alone. We can also seek the help we need and should never be ashamed of it.
There was a section in the book that I found thought-provoking where the author mentions taking advice from others and how it’s processed. I do agree that it’s hard to take advice from others and can be quite irritating when your ill and just downright sick of it all, but it’s something that I always welcome. Had I not been informed about my holistic doctor, I’m not sure where I’d be today as far as my health. Everything I’ve learned has been from others, whether it be books, YouTube, online, or word of mouth. I’ll be more mindful in the future about the advice that I offer to others though, because it isn’t always welcomed, and I think people get overstimulated with it all. This is just one section of the book that really got my brain churning.
Overall, I found this book to be inspiring, insightful, and hopeful. This is a good book for all chronic disease sufferers, especially those dealing with Crohn’s Disease and other autoimmune diseases.
5*****
August 21, 2022
4.5 stars
I enjoyed this evocative, intelligent, and self-aware memoir by Tessa Miller about her experience with Crohn’s disease. Some of the primary strengths of this memoir in my opinion:
1) Miller writes about her experience with Crohn’s disease in vivid detail that captures the pain, shock, and at times terror of her journey. Passing blood and mucus as stools, the medical trauma of multiple agonizing hospitalizations, losing control over her ability to poop as well as her appetite and even sometimes her hope for a better future – her use of specific and thoughtful language to show these events all helped them come to life. Her background as a journalist and as a writer felt evident to me while reading What Doesn’t Kill You.
2) Her self-awareness also made this book enjoyable to read. She writes both about her experience with Crohn’s disease and how she has processed and coped with those events, like the grief that ensued after her experience, how her disability has affected her relationships, and the insight she has gained about herself through her process with Crohn’s. I liked how she wove in different elements of her life, like her fraught relationship with her father, into her narrative and how she has reflected on those elements in a deep way. Emotional intelligence, we love to see it!
3) She connects the personal to the political. While I wish everyone would do this, I appreciated how she owns her privilege as a white thin cis woman, in addition to how she names the faults in the healthcare system of the United States and how it especially often fails those with multiple marginalized identities (e.g., Black women). Health is inextricably tied to systems of power and oppression and I’m glad that Miller made this clear in What Doesn’t Kill You.
Overall, a gripping and informative read that I learned from as a temporarily able-bodied person. Would recommend to those interested in issues related to health and disability, memoirs, and/or narratives from people who’ve done a decent amount of thoughtful self-reflection. She integrates some more direct guidance throughout the memoir too about topics such as navigating the healthcare system as a disabled person and how loved ones of disabled people can show support, which may prove helpful for readers too.
I enjoyed this evocative, intelligent, and self-aware memoir by Tessa Miller about her experience with Crohn’s disease. Some of the primary strengths of this memoir in my opinion:
1) Miller writes about her experience with Crohn’s disease in vivid detail that captures the pain, shock, and at times terror of her journey. Passing blood and mucus as stools, the medical trauma of multiple agonizing hospitalizations, losing control over her ability to poop as well as her appetite and even sometimes her hope for a better future – her use of specific and thoughtful language to show these events all helped them come to life. Her background as a journalist and as a writer felt evident to me while reading What Doesn’t Kill You.
2) Her self-awareness also made this book enjoyable to read. She writes both about her experience with Crohn’s disease and how she has processed and coped with those events, like the grief that ensued after her experience, how her disability has affected her relationships, and the insight she has gained about herself through her process with Crohn’s. I liked how she wove in different elements of her life, like her fraught relationship with her father, into her narrative and how she has reflected on those elements in a deep way. Emotional intelligence, we love to see it!
3) She connects the personal to the political. While I wish everyone would do this, I appreciated how she owns her privilege as a white thin cis woman, in addition to how she names the faults in the healthcare system of the United States and how it especially often fails those with multiple marginalized identities (e.g., Black women). Health is inextricably tied to systems of power and oppression and I’m glad that Miller made this clear in What Doesn’t Kill You.
Overall, a gripping and informative read that I learned from as a temporarily able-bodied person. Would recommend to those interested in issues related to health and disability, memoirs, and/or narratives from people who’ve done a decent amount of thoughtful self-reflection. She integrates some more direct guidance throughout the memoir too about topics such as navigating the healthcare system as a disabled person and how loved ones of disabled people can show support, which may prove helpful for readers too.
December 30, 2021
I didn’t want the year to end without saying a few words about this one, which made my top 10 nonfiction of the year in a very strong nonfiction year.
Look, I work in mental health, as some of you know. Currently, a significant portion of my work relates to chronic illness and grief and loss. (After these past two years especially - everyone’s work in mental health does.)
As a result, I am always searching for good own-voices memoirs by survivors of chronic illness. They are proliferating lately, which is a good thing, because so is chronic illness and its poor misunderstanding and treatment, especially in women. Problem is, it’s been hard to find good memoirs I can recommend.
This one is my favorite so far. I know a nonfiction book is good when I acquire both the audio and the hard copy so I can almost always be reading it. Both versions are great and the audio is read by the author, who seems crazy talented. She’s a lovely, talented person and a great writer and reader.
Here are just a few things I like about it:
1. It’s super honest and descriptive, which is surely not easy when you’re talking about gastrointestinal chronic illness especially. But it’s super important - easily well over half of my clients at any given time are suffering from ailments of this system. Easily. And they are embarrassed and confused and silenced and dismissed.
2. The personal is political - and the author really goes beyond her personal story to get at the many larger systemic and institutional issues that obstruct effectively addressing chronic illness. She is a powerful voice and advocate.
3. One problem I have had with books of this type is that the author throws in a full autobiography. I mean, life is important and interesting and all, but not every detail and experience and event is relevant to the big story being told. This author strikes that balance exactly right. When she incorporates other autobiographical detail, it illuminates the larger theme of the book - for example, shedding light on risk factors for or impacts of illness, including other prevalent public health concerns like domestic violence and abuse.
4. In addition to self-advocacy tips for chronic illness survivors, she includes an awesome chapter with tips for loved ones and allies. One of the most disheartening things about working with survivors is learning how awful and unsupportive their family and friends and colleagues and providers and partners can be. The stories and direct quotes I hear are sincerely shocking. I mean, it’s hard to be a caregiver, I certainly know, but we can have empathy for that and encourage caregivers to take care of themselves too without being an actual asshole to the person with the actual illness.
5. Miller is always very aware and conscientious of her own privilege and takes care to acknowledge and address power, privilege and equity issues throughout the book, which doesn’t always happen in these types of books. Miller demonstrates awareness that adverse impacts from ability and health privilege status do not negate other privileges from which one may still benefit and others may not.
I’m sure there are other great things about this book that I’m forgetting to mention here, but aren’t these enough? This is a special book and I hope you will read it. Thanks so much to Miller for bravely and professionally writing it.
Look, I work in mental health, as some of you know. Currently, a significant portion of my work relates to chronic illness and grief and loss. (After these past two years especially - everyone’s work in mental health does.)
As a result, I am always searching for good own-voices memoirs by survivors of chronic illness. They are proliferating lately, which is a good thing, because so is chronic illness and its poor misunderstanding and treatment, especially in women. Problem is, it’s been hard to find good memoirs I can recommend.
This one is my favorite so far. I know a nonfiction book is good when I acquire both the audio and the hard copy so I can almost always be reading it. Both versions are great and the audio is read by the author, who seems crazy talented. She’s a lovely, talented person and a great writer and reader.
Here are just a few things I like about it:
1. It’s super honest and descriptive, which is surely not easy when you’re talking about gastrointestinal chronic illness especially. But it’s super important - easily well over half of my clients at any given time are suffering from ailments of this system. Easily. And they are embarrassed and confused and silenced and dismissed.
2. The personal is political - and the author really goes beyond her personal story to get at the many larger systemic and institutional issues that obstruct effectively addressing chronic illness. She is a powerful voice and advocate.
3. One problem I have had with books of this type is that the author throws in a full autobiography. I mean, life is important and interesting and all, but not every detail and experience and event is relevant to the big story being told. This author strikes that balance exactly right. When she incorporates other autobiographical detail, it illuminates the larger theme of the book - for example, shedding light on risk factors for or impacts of illness, including other prevalent public health concerns like domestic violence and abuse.
4. In addition to self-advocacy tips for chronic illness survivors, she includes an awesome chapter with tips for loved ones and allies. One of the most disheartening things about working with survivors is learning how awful and unsupportive their family and friends and colleagues and providers and partners can be. The stories and direct quotes I hear are sincerely shocking. I mean, it’s hard to be a caregiver, I certainly know, but we can have empathy for that and encourage caregivers to take care of themselves too without being an actual asshole to the person with the actual illness.
5. Miller is always very aware and conscientious of her own privilege and takes care to acknowledge and address power, privilege and equity issues throughout the book, which doesn’t always happen in these types of books. Miller demonstrates awareness that adverse impacts from ability and health privilege status do not negate other privileges from which one may still benefit and others may not.
I’m sure there are other great things about this book that I’m forgetting to mention here, but aren’t these enough? This is a special book and I hope you will read it. Thanks so much to Miller for bravely and professionally writing it.
March 10, 2021
3.5 Crohn's disease IBD, both I've heard of but this is the first time I've read about these very serious issues. In a honest, no hold barred way, the author portrays just how devastating these conditions are but how it detailed her life and how she learned to cope. Like many of us with chronic conditions she went through a cycle of incorrect diagnoses, failing treatment options and trial and error medications. I truly admire her strength. She went through a horrendous time.
The facts and figures she presents on our healthcare, how so little, including mental health is unavailable to those who need it most. So often even if available the cost is prohibitive. This was eye opening for me, I didn't realize how truly awful this is, for so many.
She offers us glimpses into her personal life and ultimately offers advice, hope. Advocate for yourself, take care of yourself, your brain, your well being which are all integral to self acceptance, paths forward. As with all chronic diseases, there are many stresses, periods of depression, self doubt but reading her story provides one with commanalities and a shared focus. Much advice is the same as other books on the subject of living with a condition that one learns is never leaving but her story is unique as our conditions are unique to us.
ARC from Netgalley.
The facts and figures she presents on our healthcare, how so little, including mental health is unavailable to those who need it most. So often even if available the cost is prohibitive. This was eye opening for me, I didn't realize how truly awful this is, for so many.
She offers us glimpses into her personal life and ultimately offers advice, hope. Advocate for yourself, take care of yourself, your brain, your well being which are all integral to self acceptance, paths forward. As with all chronic diseases, there are many stresses, periods of depression, self doubt but reading her story provides one with commanalities and a shared focus. Much advice is the same as other books on the subject of living with a condition that one learns is never leaving but her story is unique as our conditions are unique to us.
ARC from Netgalley.
February 5, 2025
I found this to be really encouraging, as sobering as it was. Tessa Miller’s What Doesn’t Kill You rejects the frame of “this too shall pass”, and instead provides an honest look at living with an illness that won’t pass. I think even people who don’t have chronic illness will find a lot of these lessons helpful, such as requesting workplace accommodations and advocating for your needs with doctors offices, hospitals, and health insurance companies. Miller is respectful about how her specific experience with Crohn’s Disease is different than others, but she still has lots of universally helpful things to say.
One of the most moving parts of this memoir was Miller’s discussion of toxic/abusive relationships and disability/chronic illness. She is compassionate yet honest when describing the relationship with her mother, who was a primary caregiver to Tessa during her IBD flares, but was also a flawed caregiver during Tessa’s childhood. She talks about how the caregiving needs chronic illnesses often require create many opportunities for repressed grievances and long-held resentments to surface and fester. This is something I’ve seen firsthand in my own family, and I appreciated the this memoir’s thoughtful discussion of how easily our familial caregiving relationships can be impacted by existing childhood trauma, parental betrayal, and familial hardships.
Miller also discusses the multi-dimensional relationship between intimate partner violence and chronic illness. Before reading this book, I would’ve guessed that disabled people face greater barriers to leaving abusive relationships. Miller’s memoir describes not only the financial and insurance-related ways that people can be coerced into remaining in abusive relationships, but also how abusers can also be the primary caregivers or even transplant volunteers for their partners. I’d never thought about those particular dynamics, where someone feels indebted to their abuser for a part of their physical well-being, until this book. What Doesn’t Kill You also exposed me to research about how even after exiting an abusive relationship, survivors are more likely to be diagnosed with chronic illnesses. Lastly, by capturing the co-occurrence of remission and a breakup, Miller fully closes the loop on how chronic illness can impact people before, during, and after their abusive relationships.
On a lighter note, Miller includes a lot of “how to” information for nearly every part of life. I appreciated her guidance on discussion prompts for mixed-ability relationships, her promotion of disability/illness-based support groups and mental health services (while acknowledging therapy’s limits), and her advice about working while disabled. She discusses some of the pros of freelancing, while remaining honest about the different burdens that route may cause due to health insurance and higher personal admin requirements. Miller also provided useful tips about how to communicate with supervisors and hiring managers, which I will keep in mind as I prepare to enter a new job with an ever-growing schedule of medical appointments.
To wrap this up, I would recommend this book to anyone who can relate to feeling stripped of your autonomy, or who has dealt with a problem for longer than you once expected. If you have disabled loved ones, there are lots of sections designed to help able-bodied people understand the experiences of those with chronic illness. If you are living with your own chronic illness, this book will likely feel reassuring and reflective, even though you’re likely to know most of the guidance provided already. Finally, I would recommend the audiobook so you can hear directly from Miller!
One of the most moving parts of this memoir was Miller’s discussion of toxic/abusive relationships and disability/chronic illness. She is compassionate yet honest when describing the relationship with her mother, who was a primary caregiver to Tessa during her IBD flares, but was also a flawed caregiver during Tessa’s childhood. She talks about how the caregiving needs chronic illnesses often require create many opportunities for repressed grievances and long-held resentments to surface and fester. This is something I’ve seen firsthand in my own family, and I appreciated the this memoir’s thoughtful discussion of how easily our familial caregiving relationships can be impacted by existing childhood trauma, parental betrayal, and familial hardships.
Miller also discusses the multi-dimensional relationship between intimate partner violence and chronic illness. Before reading this book, I would’ve guessed that disabled people face greater barriers to leaving abusive relationships. Miller’s memoir describes not only the financial and insurance-related ways that people can be coerced into remaining in abusive relationships, but also how abusers can also be the primary caregivers or even transplant volunteers for their partners. I’d never thought about those particular dynamics, where someone feels indebted to their abuser for a part of their physical well-being, until this book. What Doesn’t Kill You also exposed me to research about how even after exiting an abusive relationship, survivors are more likely to be diagnosed with chronic illnesses. Lastly, by capturing the co-occurrence of remission and a breakup, Miller fully closes the loop on how chronic illness can impact people before, during, and after their abusive relationships.
On a lighter note, Miller includes a lot of “how to” information for nearly every part of life. I appreciated her guidance on discussion prompts for mixed-ability relationships, her promotion of disability/illness-based support groups and mental health services (while acknowledging therapy’s limits), and her advice about working while disabled. She discusses some of the pros of freelancing, while remaining honest about the different burdens that route may cause due to health insurance and higher personal admin requirements. Miller also provided useful tips about how to communicate with supervisors and hiring managers, which I will keep in mind as I prepare to enter a new job with an ever-growing schedule of medical appointments.
To wrap this up, I would recommend this book to anyone who can relate to feeling stripped of your autonomy, or who has dealt with a problem for longer than you once expected. If you have disabled loved ones, there are lots of sections designed to help able-bodied people understand the experiences of those with chronic illness. If you are living with your own chronic illness, this book will likely feel reassuring and reflective, even though you’re likely to know most of the guidance provided already. Finally, I would recommend the audiobook so you can hear directly from Miller!
February 21, 2021
This book was amazing and riveting.
Tessa Miller is an amazing writer that drew me in to her story and the difficulties of her condition and the struggle to find the right diagnosis.
Three in five adults suffer from chronic illness and rising, and Miller deftly writes not only about her personal experiences about her Crohn’s diagnosis, but also writes for anyone that might experience any medical issues that would impact the person as a whole, physically, mentally and socially.
The wisdom and solidarity she shares bring solace and comfort to all going through this themselves or for their loved ones.
I highly recommend this memoir.
Tessa Miller is an amazing writer that drew me in to her story and the difficulties of her condition and the struggle to find the right diagnosis.
Three in five adults suffer from chronic illness and rising, and Miller deftly writes not only about her personal experiences about her Crohn’s diagnosis, but also writes for anyone that might experience any medical issues that would impact the person as a whole, physically, mentally and socially.
The wisdom and solidarity she shares bring solace and comfort to all going through this themselves or for their loved ones.
I highly recommend this memoir.
April 19, 2021
For me, this book was 2.5 stars rounded up to 3 stars for her thorough vastly expanded descriptions and definitions of chronic illness, primarily of the digestive, intestinal system. But also on the differences between disabilities labeling in general and/or chronic disease. Most especially of a life-long condition.
It's not as much a memoir, as opposed to a self-help or informational study of those who suffer and the people who care for them. Doctors, family, friends, society- all. Not more than 1/2 is memoir. Possibly even less than half.
I found the listings of 30 plus sufferers near the very ending- inspiring. They each gave a paragraph or two on what makes them happy or peaceful or content on their bad days. I'm glad she added that portion. Not everyone deals with such nearly endless pain or doctoring in the same ways. I've seen that in full boat my whole life. Crohn's Disease, all varieties of ulcerative or bowel diseases, heart conditions that change with body position, lupus and the arthritis conditions of every ilk for muscle/ bone are heavy physical fallouts to energy needed for a "regular" life. Not to speak of pain or properties of having many RX fallouts. So being in touch CONSTANTLY with one's own body is prime. She gives emphasis to this reality well.
She has/ holds enough negatives in this book to pave a road to the moon. And she pontificates about many issues to the point of what? Some I can understand like about questions friends or peers or workmates ask. (Which she believes are not helpful, are nosy, make her feel offended etc. etc.) But I am completely sure others with the same degrees of illness don't all feel the same as Tessa does about most of these categories of questions.
She stereotypes immensely (all the people from the Midwestern USA are messed up etc.) and has the opinion that every nuance or degree of emotional mental illness needs the therapy of an analyst or degree of psychological counseling mentor. Her definitions of these and many (most) terms for different medical conditions, specialties, terms for levels of psychology etc. are listed in a section near the ending as well.
Many of her assumptions and judgments are completely Tessa's. Some are truly mind-boggling in their generic stereotyping negativity. Some of them are so extremely bitter in their nuance. Especially in her indictments to the American Health Care System. She can list every negative and picks and chooses all of those slants which support her opinion. She especially disses all rural doctors or hospital systems full boat. I would suggest she not go on vacations to other continents EVER.
Crohn's and digestive system conditions, along with many asthma, muscle or joint or immune system diseases are truly devastating. And can also exist for entire lifetimes into advanced old ages. Getting your mind around living the life you have with any of these or combinations of these can be a very mental and emotional journey to navigate just by itself apart from the physical choices handed to you, as well.
It's not as much a memoir, as opposed to a self-help or informational study of those who suffer and the people who care for them. Doctors, family, friends, society- all. Not more than 1/2 is memoir. Possibly even less than half.
I found the listings of 30 plus sufferers near the very ending- inspiring. They each gave a paragraph or two on what makes them happy or peaceful or content on their bad days. I'm glad she added that portion. Not everyone deals with such nearly endless pain or doctoring in the same ways. I've seen that in full boat my whole life. Crohn's Disease, all varieties of ulcerative or bowel diseases, heart conditions that change with body position, lupus and the arthritis conditions of every ilk for muscle/ bone are heavy physical fallouts to energy needed for a "regular" life. Not to speak of pain or properties of having many RX fallouts. So being in touch CONSTANTLY with one's own body is prime. She gives emphasis to this reality well.
She has/ holds enough negatives in this book to pave a road to the moon. And she pontificates about many issues to the point of what? Some I can understand like about questions friends or peers or workmates ask. (Which she believes are not helpful, are nosy, make her feel offended etc. etc.) But I am completely sure others with the same degrees of illness don't all feel the same as Tessa does about most of these categories of questions.
She stereotypes immensely (all the people from the Midwestern USA are messed up etc.) and has the opinion that every nuance or degree of emotional mental illness needs the therapy of an analyst or degree of psychological counseling mentor. Her definitions of these and many (most) terms for different medical conditions, specialties, terms for levels of psychology etc. are listed in a section near the ending as well.
Many of her assumptions and judgments are completely Tessa's. Some are truly mind-boggling in their generic stereotyping negativity. Some of them are so extremely bitter in their nuance. Especially in her indictments to the American Health Care System. She can list every negative and picks and chooses all of those slants which support her opinion. She especially disses all rural doctors or hospital systems full boat. I would suggest she not go on vacations to other continents EVER.
Crohn's and digestive system conditions, along with many asthma, muscle or joint or immune system diseases are truly devastating. And can also exist for entire lifetimes into advanced old ages. Getting your mind around living the life you have with any of these or combinations of these can be a very mental and emotional journey to navigate just by itself apart from the physical choices handed to you, as well.
September 7, 2020
I get to be the first review for this amazing book? Awesome!!
This is an absolutely necessary book for public library collections - not only does Tessa Miller share her personal story here, she also provides valuable information about how to navigate the world with a chronic illness. Although I don't have anything as severe as what Miller has - with Crohn's and inflammatory bowel disorder, she's survived multiple traumatic hospital visits - I have a few chronic conditions. My mother-in-law, who recently passed, suffered from several as well, and I could see a lot of her journey in Tessa's words. I wish I'd had this book when my mother-in-law was still alive. There is a lot here, from grieving the lost of your past self to advocating for yourself with doctors to dealing with America's complex and broken health care system. But it is absolutely unputdownable, layered with wit and humor, both a memoir and a manual for living.
This is an absolutely necessary book for public library collections - not only does Tessa Miller share her personal story here, she also provides valuable information about how to navigate the world with a chronic illness. Although I don't have anything as severe as what Miller has - with Crohn's and inflammatory bowel disorder, she's survived multiple traumatic hospital visits - I have a few chronic conditions. My mother-in-law, who recently passed, suffered from several as well, and I could see a lot of her journey in Tessa's words. I wish I'd had this book when my mother-in-law was still alive. There is a lot here, from grieving the lost of your past self to advocating for yourself with doctors to dealing with America's complex and broken health care system. But it is absolutely unputdownable, layered with wit and humor, both a memoir and a manual for living.
February 8, 2021
WHAT DOESN’T KILL YOU: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Miller is a really great memoir! Tessa shares her experiences living with Chrohn’s disease. She’s very open about what her body and mind went through upon first diagnosis, through treatment and dealing with work, health insurance and relationships. This book has some very helpful parts including explaining how to find a good doctor and how to be helpful to someone with chronic illness. This is a book that would be beneficial to anyone who is impacted by chronic illness in any way or who just wants to know more. It’s definitely a complex issue that’s affected by so many different factors but now I feel more knowledgeable about this topic.
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Thank you to Henry Holt and Company for my advance review copy!
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Thank you to Henry Holt and Company for my advance review copy!
September 14, 2021
I finished this one a few weeks ago and still haven’t written a review because I have so many thoughts about it. Miller tells her personal story of being diagnosed and living with Chron’s, while also providing a journalistic perspective on what it’s like to exist with a chronic illness in the U.S. As most of you probably know, I was diagnosed with cystic fibrosis at 16 years old (20 years ago this month!) and am always looking for books that share a similar experience. And Miller’s book was about as close as I’ve come. I underlined countless passages, felt more seen than I have in a long time, and highly recommend this to anyone with a chronic illness, but maybe especially to those who don’t. She does a wonderful job of depicting the various struggles and challenges that come with being chronically ill. The only thing I would add is that because CF is such a unique disease (and a terminal one), there were a handful of aspects I either couldn’t relate to or felt were not accurate to my experience, but that will likely be true of anyone who reads this since no two people are the same.
Thank you to Henry Holt for providing me with a free review copy. All opinions are my own.
Thank you to Henry Holt for providing me with a free review copy. All opinions are my own.
November 2, 2020
"What Doesn't Kill You" is a fiercely honest and brilliantly researched memoir detailing journalist Tessa Miller's body, mind, and heart-wrenching experience being diagnosed with a Crohn's disease in her early 20s while living in New York City. I have been a fan of Miller's writing for many years and looked forward to reading her first book, which did not disappoint.
This is an essential read for anyone who is dealing with a chronic illness themselves or has a loved one who has been diagnosed, because, as Miller explains, "There's very little public dialogue about chronic illness—we're brought up to believe sickness either goes away or kills you. But what about the space in between, where it does neither? Six in ten Americans exist within that space, living with at least one chronic condition, yet it's rarely talked about outside of a doctor's office or hush-hush support groups."
As with all well-written memoirs, I think "What Doesn't Kill You" will also be enjoyable for readers not affected by chronic illness. Miller uses her experience to explain how she learned (and is still learning) to manage things that affect nearly all humans, healthy or otherwise, including work/life boundaries, independence, anger, anxiety, stress, control, self-blame, body-image, and complicated interpersonal relationships.
Miller's writing is sharp and vividly descriptive. She is able to weaves deeply personal stories from her life seamlessly with her medical journey. Being a journalist, I was not surprised that Miller includes a substantial amount of research (with footnotes and appendix) and interviews covering essential topics related to chronic illness management and care—the convoluted American health care system, mental health assistance, patient advocacy, support groups.
Though full of harrowing details that are sometimes difficult to read, or even imagine, Miller’s book is also full of hope and gratitude, the deepest kind that comes from having something completely upend your body, mind, and soul. She beautifully shares, “Illness and infection brought me close to death more than once, but each time I returned with one devastating thought: I want to live. Not just that, I want to notice when and how I’m alive. I’m still learning many of the lessons in this book, some of which will take an entire life’s work to grasp. What mattes to me is no perfection but practice. I’m proud that I haven’t let incurable illness coarsen my heart to the good things this world has to offer—instead it opened me up to kindness, humor and connection.”
I highly recommend Tessa Miller's first book for fans of "Brain on Fire: My Month of Madness" by Susannah Cahalan, "Wild: From Lost to Found on the Pacific Crest Trail" by Cheryl Strayed, and "The Rules Do Not Apply" by Ariel Levy.
This is an essential read for anyone who is dealing with a chronic illness themselves or has a loved one who has been diagnosed, because, as Miller explains, "There's very little public dialogue about chronic illness—we're brought up to believe sickness either goes away or kills you. But what about the space in between, where it does neither? Six in ten Americans exist within that space, living with at least one chronic condition, yet it's rarely talked about outside of a doctor's office or hush-hush support groups."
As with all well-written memoirs, I think "What Doesn't Kill You" will also be enjoyable for readers not affected by chronic illness. Miller uses her experience to explain how she learned (and is still learning) to manage things that affect nearly all humans, healthy or otherwise, including work/life boundaries, independence, anger, anxiety, stress, control, self-blame, body-image, and complicated interpersonal relationships.
Miller's writing is sharp and vividly descriptive. She is able to weaves deeply personal stories from her life seamlessly with her medical journey. Being a journalist, I was not surprised that Miller includes a substantial amount of research (with footnotes and appendix) and interviews covering essential topics related to chronic illness management and care—the convoluted American health care system, mental health assistance, patient advocacy, support groups.
Though full of harrowing details that are sometimes difficult to read, or even imagine, Miller’s book is also full of hope and gratitude, the deepest kind that comes from having something completely upend your body, mind, and soul. She beautifully shares, “Illness and infection brought me close to death more than once, but each time I returned with one devastating thought: I want to live. Not just that, I want to notice when and how I’m alive. I’m still learning many of the lessons in this book, some of which will take an entire life’s work to grasp. What mattes to me is no perfection but practice. I’m proud that I haven’t let incurable illness coarsen my heart to the good things this world has to offer—instead it opened me up to kindness, humor and connection.”
I highly recommend Tessa Miller's first book for fans of "Brain on Fire: My Month of Madness" by Susannah Cahalan, "Wild: From Lost to Found on the Pacific Crest Trail" by Cheryl Strayed, and "The Rules Do Not Apply" by Ariel Levy.
January 25, 2021
As a Crohn's patient I was especially grateful to Netgalley for sending me this ARC. All opinions represented here are my own and unbiased.
I found this book to be an excellent hybrid of memoir and advice. As a fellow Crohn's sufferer, I found the autobiographical content relatable. Not only that, it was articulate and clear about what we and other chronic illness patients go through - I definitely feel that I could give it to someone close to me and they would end up with a much better understanding of my own experience. It also contains a wealth of information that can be useful to someone newly diagnosed and even to some who have been ill for years.
I can't wait for this book to come out. I want to buy copies for my close friends and family, as well as others I know who are ill. This is a valuable resource as well as a moving tale of bravery in the face of pain and trauma.
I found this book to be an excellent hybrid of memoir and advice. As a fellow Crohn's sufferer, I found the autobiographical content relatable. Not only that, it was articulate and clear about what we and other chronic illness patients go through - I definitely feel that I could give it to someone close to me and they would end up with a much better understanding of my own experience. It also contains a wealth of information that can be useful to someone newly diagnosed and even to some who have been ill for years.
I can't wait for this book to come out. I want to buy copies for my close friends and family, as well as others I know who are ill. This is a valuable resource as well as a moving tale of bravery in the face of pain and trauma.
March 14, 2021
An eye-opening account about life with IBD. Tessa Miller's does not hold back with her descriptions of life with illness and what it means to be sick. It's very graphic and very honest, and I think every Spoonie can relate in some way to this book, whether you suffer from Crohn's, UC, or other types of painful invisible illnesses.
I love seeing other Spoonies succeed and tell their story. It's so important that we have the opportunity to do this because when we share our stories, we're not only benefiting from the cathartic process of telling our own story, but we are most definitely benefiting others who will almost certainly learn they are not alone.
What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt is part memoir and part self-help. I like that she includes practical tips, advice, and resources for living with chronic illness, and she hits every point a Spoonie would want other folks to know.
I'll add some of my favorite points later, but for now, I'd like to say that if you're someone who suffers from IBD or you know someone who has IBD, or you're someone who has a loved one in your life who is living with pain and invisible illness, this might be a great read for you!
I love seeing other Spoonies succeed and tell their story. It's so important that we have the opportunity to do this because when we share our stories, we're not only benefiting from the cathartic process of telling our own story, but we are most definitely benefiting others who will almost certainly learn they are not alone.
What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt is part memoir and part self-help. I like that she includes practical tips, advice, and resources for living with chronic illness, and she hits every point a Spoonie would want other folks to know.
I'll add some of my favorite points later, but for now, I'd like to say that if you're someone who suffers from IBD or you know someone who has IBD, or you're someone who has a loved one in your life who is living with pain and invisible illness, this might be a great read for you!
February 20, 2021
I was really excited to read this book and then disappointed. It feels sort of mean to rate a memoir poorly, but I want people know what they’re getting. This books is mostly ‘educational’ and not memoir. I’m not sure who it’s targeted at, maybe newly diagnosed people or more their families? A lot of it seems to repeat all the ‘so you’ve been diagnosed with x’ blogs/pamphlets/Instagram posts I’ve seen over the past seven years (since my own diagnosis with lupus). If I see “you’re not unreliable, your illness is” one more time...
But here’s what really bugs me: there is A LOT of what I categorize as ‘illness as journey’. That is, you’ve been sick, or hospitalized, or nearly died- but now you know what’s REALLY important in life and focus on the positive. For example, a quote from Miller, “After life-threatening illness and extended hospital stays, something shifted. I was grateful to be alive, sure, but it was more than that. I sensed the sun on my skin as I had thousands of times before but now noticed and appreciated its warmth.” If that’s your jam, you’ll like this. Otherwise, you may want to steer clear.
But here’s what really bugs me: there is A LOT of what I categorize as ‘illness as journey’. That is, you’ve been sick, or hospitalized, or nearly died- but now you know what’s REALLY important in life and focus on the positive. For example, a quote from Miller, “After life-threatening illness and extended hospital stays, something shifted. I was grateful to be alive, sure, but it was more than that. I sensed the sun on my skin as I had thousands of times before but now noticed and appreciated its warmth.” If that’s your jam, you’ll like this. Otherwise, you may want to steer clear.
May 19, 2021
It's world IBD day, and what better way to celebrate it than to reccomend this book, written by an author who lives with IBD/Chron's Disesase (like I do).
It is framed as a combo memior and self-help book about steps towards living with chronic illness. To me it felt very specific to living with Crohn's and I will reccomend to anyone who wants to get a better sense of what it can be like to live with this illness, but it *may* resonate for others who live with other chronic illnesses (I am interested to learn if it does). Miller offers helpful tools around choosing a doctor that will be helpful to you, engaging in mental healthcare, and ways to promote self care. I wish I had been able to read this book 20 years ago when I was first diagnosed, but the lessons it contains are plentiful and I find her approach to reflecting on living with a chronic illness helpful and resonate with my experience. All of that said, this book can be triggering, esp as it discusses medical PTSD and traumas endured, but it at the same time allows people to feel less alone in their experience. Miller's memoir of living with a parent who is an alcoholic and was abusive, as well as her own intimate partner violcene, speaks to how everyone is a whole being and it's never just living with an illness in isolation to your relationships. Miller is also a journalist and has held jobs both as editors and freelance, so she discusses her own as well as how to approach working while living with chronic illness, including when you are disabled and unable to work. Finally, her woes with insruance companies will resonate with anyone who has ever lived in the US and needed life-saving care and had to jump through hoops and fight for it, as though trying to survive the illness is not hard enough.
I am very excited to discuss this book with my Crohn's and Colitis Support group tomorrow night and hear how the read was for others and dive more into the specifics of her reccomendations and what resonated for others who also live with IBD.
It is framed as a combo memior and self-help book about steps towards living with chronic illness. To me it felt very specific to living with Crohn's and I will reccomend to anyone who wants to get a better sense of what it can be like to live with this illness, but it *may* resonate for others who live with other chronic illnesses (I am interested to learn if it does). Miller offers helpful tools around choosing a doctor that will be helpful to you, engaging in mental healthcare, and ways to promote self care. I wish I had been able to read this book 20 years ago when I was first diagnosed, but the lessons it contains are plentiful and I find her approach to reflecting on living with a chronic illness helpful and resonate with my experience. All of that said, this book can be triggering, esp as it discusses medical PTSD and traumas endured, but it at the same time allows people to feel less alone in their experience. Miller's memoir of living with a parent who is an alcoholic and was abusive, as well as her own intimate partner violcene, speaks to how everyone is a whole being and it's never just living with an illness in isolation to your relationships. Miller is also a journalist and has held jobs both as editors and freelance, so she discusses her own as well as how to approach working while living with chronic illness, including when you are disabled and unable to work. Finally, her woes with insruance companies will resonate with anyone who has ever lived in the US and needed life-saving care and had to jump through hoops and fight for it, as though trying to survive the illness is not hard enough.
I am very excited to discuss this book with my Crohn's and Colitis Support group tomorrow night and hear how the read was for others and dive more into the specifics of her reccomendations and what resonated for others who also live with IBD.
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August 12, 20242024 reads: 230/250
this book details the author’s experience with chronic illness. tessa miller was an ambitious writer in her twenties when her stomach began to seize up. at first, she tried to tough it out, but she soon realized something was seriously wrong, and she went to the hospital, where she began her ongoing, years-long journey of medical procedures, mistreatment, and life-threatening infections. with her diagnosis of crohn’s disease came answers and the start of identity reconstruction.
i’m going to be honest and say that i thought i knew a bit about crohn’s disease before starting this, but i was quickly humbled. miller shares a lot of details about crohn’s disease, and it’s safe to say this is a lot more than your average tummy issues. miller also discusses her experiences with c. diff, which is a reoccurrence in her life, and mental illness. i liked how miller pointed out the connections between these and how they affect her life.
when reading a memoir, i typically just expect to read about one person’s anecdotes. while we had plenty of these, i also appreciated the other viewpoints miller added as well as the factual information regarding disability she made sure to include. miller also discussed her advice to fellow chronically ill people, which i thought was great!
this book details the author’s experience with chronic illness. tessa miller was an ambitious writer in her twenties when her stomach began to seize up. at first, she tried to tough it out, but she soon realized something was seriously wrong, and she went to the hospital, where she began her ongoing, years-long journey of medical procedures, mistreatment, and life-threatening infections. with her diagnosis of crohn’s disease came answers and the start of identity reconstruction.
i’m going to be honest and say that i thought i knew a bit about crohn’s disease before starting this, but i was quickly humbled. miller shares a lot of details about crohn’s disease, and it’s safe to say this is a lot more than your average tummy issues. miller also discusses her experiences with c. diff, which is a reoccurrence in her life, and mental illness. i liked how miller pointed out the connections between these and how they affect her life.
when reading a memoir, i typically just expect to read about one person’s anecdotes. while we had plenty of these, i also appreciated the other viewpoints miller added as well as the factual information regarding disability she made sure to include. miller also discussed her advice to fellow chronically ill people, which i thought was great!
April 22, 2021
“My life has meaning and is worth living even if it looks different than I’d hoped.”
As someone recently diagnosed with a chronic illness, this book came to me at the right time. I wanted to underline so much of it that I related to or made me feel a little bit hopeful. This book was not just this author's story and experiences, but she also filled it with research and resources - some of which I'll be looking into. I listened on audio, read by the author, and I wish I had the physical book. I loved listening to it, but this is a book that I needed to underline, highlight, and take notes. I needed to write all over the pages. There were so many passages where I thought "yes, this is exactly how I feel" and moments that made me absolutely livid (e.g. the US healthcare system and politics).
I think this is an important book for anyone with a chronic illness and anyone with a loved one that has a chronic illness.
As someone recently diagnosed with a chronic illness, this book came to me at the right time. I wanted to underline so much of it that I related to or made me feel a little bit hopeful. This book was not just this author's story and experiences, but she also filled it with research and resources - some of which I'll be looking into. I listened on audio, read by the author, and I wish I had the physical book. I loved listening to it, but this is a book that I needed to underline, highlight, and take notes. I needed to write all over the pages. There were so many passages where I thought "yes, this is exactly how I feel" and moments that made me absolutely livid (e.g. the US healthcare system and politics).
I think this is an important book for anyone with a chronic illness and anyone with a loved one that has a chronic illness.
January 15, 2021
This is a powerful memoir about author and journalist Tessa Miller suddenly developing Crohn's Disease in her early twenties. Miller doesn't hold back. Things get sh*tty and then sh*ttier. Miller's prose is evocative and vulnerable and open and she engages with disability theory and also gives practical advice for disabled and chronically ill folk. I will be recommending this a lot this year. Content warning for sexual abuse.
November 19, 2020
I was asked to read several ARC's to provide feedback for a local book festival. I probably never would have selected this book to read otherwise, but I'm so glad this story found me.
What makes this book remarkable (besides the honesty and trials of the author) is the writer's background in journalism. She can really write. She does in depth research. And, she provides guidance for others who might be in a similar situation. Invaluable.
This is a timely story about a young person who discovered she had a chronic illness in her twenties and had to battle for her life, battle her health insurance carriers, battle her doctors, battle with her self esteem, etc. It's an eye opener for some. For a nation going through a devastating pandemic, many will relate to the hardship of losing your job and your insurance. It exposes once again the deep rooted flaws in the US healthcare system. The expenses of COBRA, the research needed when selecting a ACA plan, the extreme need to protect those with pre-existing conditions, who can apply for Medicare or Medicaid and what the difference is. The need for mental health support and therapy. The costs of prescription drugs and the difficulty obtaining services and medications when you travel or are out of your normal network. How to find a good doctor and how to report abuse.
As someone who has a parent who has deftly handled these services & bills in recent years as a nurse caring for a failing spouse, I was somewhat familiar with these issues. But, this book shares so much more and the willingness of the author to share her resources is extremely generous and hard won.
The author has Crohn's disease. I have family & some friends with chronic health conditions as well. This book is a valuable read. We need healthcare reform in the US. Highly recommend.
What makes this book remarkable (besides the honesty and trials of the author) is the writer's background in journalism. She can really write. She does in depth research. And, she provides guidance for others who might be in a similar situation. Invaluable.
This is a timely story about a young person who discovered she had a chronic illness in her twenties and had to battle for her life, battle her health insurance carriers, battle her doctors, battle with her self esteem, etc. It's an eye opener for some. For a nation going through a devastating pandemic, many will relate to the hardship of losing your job and your insurance. It exposes once again the deep rooted flaws in the US healthcare system. The expenses of COBRA, the research needed when selecting a ACA plan, the extreme need to protect those with pre-existing conditions, who can apply for Medicare or Medicaid and what the difference is. The need for mental health support and therapy. The costs of prescription drugs and the difficulty obtaining services and medications when you travel or are out of your normal network. How to find a good doctor and how to report abuse.
As someone who has a parent who has deftly handled these services & bills in recent years as a nurse caring for a failing spouse, I was somewhat familiar with these issues. But, this book shares so much more and the willingness of the author to share her resources is extremely generous and hard won.
The author has Crohn's disease. I have family & some friends with chronic health conditions as well. This book is a valuable read. We need healthcare reform in the US. Highly recommend.
February 1, 2021
From an early story of a male doctor questioning whether the author was actually bleeding from her rectum and couldn't it possibly just be her period, I knew that I would be all in on this book (seriously men, I promise we can tell the difference between our rectums and vaginas). Having been diagnosed with Crohn's colitis about a year and a half ago, this book was everything I needed. Part memoir, part how-to manual, part social commentary, Tessa Miller has drafted a book that is a must-read for anyone dealing with a chronic illness and the people who love them. Having had so many experiences as the author (including the already mentioned "are you sure it's not just your period?" from a male doctor), this book really forced me to address a lot of personal feelings on my diagnosis I have been suppressing. Thank you so much to NetGalley and Henry Holt and Co. for the ARC.
May 1, 2021
For the first time, I feel seen in a way I didn't know I needed. What a thorough collection of stories and resources that I wish I had back in 2009 - when I joined the IBD fam. I've struggled with my after, particularly when I stopped grad school because of UC. Miller said it best: 'It's heartbreaking to be ambitious and have chronic Illness get in the way of your goals and dream. It isn't something you get over...you have to redefine what success means to you' 💙
July 27, 2021
Really good. Starts so strong. Gets lost a little toward the end. Helped me to see and understand chronic illness and my own privileges in a new way. Wanted more general nonfiction along side the memoir sections.
October 16, 2022
Wow..this book was really good. A bit of a hard read, especially having Crohn's and reading about someone else who has gone through way harder things than I have. But this book and Tessa's story made me feel so heard and validated in a way I really haven't felt before. Knowing I'm not alone and that it's okay to talk about chronic illness and Crohn's in such an open way was really valuable to me. The farther I got in the book, I had to read one chapter or a time, or take breaks, because talking about chronic illness and mental illnesses can be really heavy at times. I do recommend this book, but like know what triggers you and don't push yourself through something if it's going to upset you.
I just wanna share my favorite nuggets from this book (which I honestly want to own, because it's so good.).
- I thought my pain was more valid than anyone else's because it was mine. And getting angry felt good, even for a few seconds, until eventually it didn't anymore.
- Control is an illusion
- You are not doing it wrong
- Anxiety is a part of grief
- Allow yourself to feel
- Mindfulness is whatever ritual grounds you in the present
- GLAD
- Gratitude
- Learning
- Accomplishments
- Delight
- Guilt is a part of grief too
- Don't try to rush "meaning"
- People want it to be meaning with a capital M, but really it's about finding an explanation for what happened that let's you move on with life. For people who are chronically ill, that has to begin with them forgiving themselves for not being able to be the person they imaged themselves as.
- You're (more than likely) going to need professional help
- My life has meaning and is worth living, even if it looks different than I'd hoped.
- You can feel sad and creative a meaningful, joyful life
- I fixated on the cause, because if I had caused if, then maybe I could cure it. In a strange way, my self-blame was a form of hope.
- It was challenging to be a friend when I couldn't get out of bed, and equally to be a partner when the pain made me unable to see beyond myself.
- It was hard to be kind to myself, and to my body, when I hated my body and its apparent betrayal.
- It was nice, in a way, to just lie there and be taken care of. To be sick, openly, without worrying about pretending otherwise.
- For chronically ill people, "should" is often a harmful attempt at regaining the control we sense was lost to illness.
- Our identities get tangled up in what we do for a living, and when that changes or ends due to chronic illness, it makes us feel as if we don't know who we are or what we offer to the world. We become fearful of how others think of us.
- No one wants to not live, but they do want to be free from pain and fear.
- I know now that pain -- physical and emotional -- is only one part of me and I don't have it let it be the loudest.
- We all carry around versions of ourselves, different ages, circumstances. When we're scared and out of control in the present, we must take a moment to think about where and when that feeling is coming from. Then "show" that version of yourself that you are safe now. Show the ten year old in a violent home that they're safe. Show the 25 year old in the hospital that they're home. Show the fourteen year old with an eating disorder that they have better coping mechanisms.
- I also try to avoid catastrophizing. I have a chronic illness and it's going to flare up. I know this and I can take steps to managing it. If it gets really bad, well, I've been through it before and came out the other side. I have treatment options left, should my current meds fail, and I have doctors I trust to help me through my decisions.
- Do something every single day that shows you not only care, but that you're working toward a better, more just world. Empathy is love and love is action.
- We wish our loves ones would affirm that productivity does not determine our value.
- Capitalism would have us think otherwise, but human beings are worthy of love, adoration, and respect, regardless of how much we produce, give back, extend or earn.
- We're expected to rest only when we've run ragged, but why do we need to crash fo "earn" rest? Why do we need to prove we've worked hard enough, long enough, to "deserve" it? What if we took rest as seriously as we did productivity?
- Self-care is anti-despair.
- Lack of rest and care makes chronically ill bodies sicker. And when our bodies feel bad, our brains do, too; when our brains feel bad, so do our bodies. It's a toxic loop.
- Perfectionism is nothing more than a bottomless pit of self-hatred.
- Happiness is something you chase, but joy is something you choose.
I just wanna share my favorite nuggets from this book (which I honestly want to own, because it's so good.).
- I thought my pain was more valid than anyone else's because it was mine. And getting angry felt good, even for a few seconds, until eventually it didn't anymore.
- Control is an illusion
- You are not doing it wrong
- Anxiety is a part of grief
- Allow yourself to feel
- Mindfulness is whatever ritual grounds you in the present
- GLAD
- Gratitude
- Learning
- Accomplishments
- Delight
- Guilt is a part of grief too
- Don't try to rush "meaning"
- People want it to be meaning with a capital M, but really it's about finding an explanation for what happened that let's you move on with life. For people who are chronically ill, that has to begin with them forgiving themselves for not being able to be the person they imaged themselves as.
- You're (more than likely) going to need professional help
- My life has meaning and is worth living, even if it looks different than I'd hoped.
- You can feel sad and creative a meaningful, joyful life
- I fixated on the cause, because if I had caused if, then maybe I could cure it. In a strange way, my self-blame was a form of hope.
- It was challenging to be a friend when I couldn't get out of bed, and equally to be a partner when the pain made me unable to see beyond myself.
- It was hard to be kind to myself, and to my body, when I hated my body and its apparent betrayal.
- It was nice, in a way, to just lie there and be taken care of. To be sick, openly, without worrying about pretending otherwise.
- For chronically ill people, "should" is often a harmful attempt at regaining the control we sense was lost to illness.
- Our identities get tangled up in what we do for a living, and when that changes or ends due to chronic illness, it makes us feel as if we don't know who we are or what we offer to the world. We become fearful of how others think of us.
- No one wants to not live, but they do want to be free from pain and fear.
- I know now that pain -- physical and emotional -- is only one part of me and I don't have it let it be the loudest.
- We all carry around versions of ourselves, different ages, circumstances. When we're scared and out of control in the present, we must take a moment to think about where and when that feeling is coming from. Then "show" that version of yourself that you are safe now. Show the ten year old in a violent home that they're safe. Show the 25 year old in the hospital that they're home. Show the fourteen year old with an eating disorder that they have better coping mechanisms.
- I also try to avoid catastrophizing. I have a chronic illness and it's going to flare up. I know this and I can take steps to managing it. If it gets really bad, well, I've been through it before and came out the other side. I have treatment options left, should my current meds fail, and I have doctors I trust to help me through my decisions.
- Do something every single day that shows you not only care, but that you're working toward a better, more just world. Empathy is love and love is action.
- We wish our loves ones would affirm that productivity does not determine our value.
- Capitalism would have us think otherwise, but human beings are worthy of love, adoration, and respect, regardless of how much we produce, give back, extend or earn.
- We're expected to rest only when we've run ragged, but why do we need to crash fo "earn" rest? Why do we need to prove we've worked hard enough, long enough, to "deserve" it? What if we took rest as seriously as we did productivity?
- Self-care is anti-despair.
- Lack of rest and care makes chronically ill bodies sicker. And when our bodies feel bad, our brains do, too; when our brains feel bad, so do our bodies. It's a toxic loop.
- Perfectionism is nothing more than a bottomless pit of self-hatred.
- Happiness is something you chase, but joy is something you choose.
August 21, 2024
I'd say that about 40% of this book is an actual memoir, while the remaining 60% is information and advice that the author feels would benefit a person newly diagnosed with a chronic illness. Some of the topics discussed in this book are the flaws within the US healthcare system, the importance of mental health while dealing with a chronic illness, how having a chronic illness will affect your relationship with your partner, your friends, and your family, as well as what your rights are as an employee.
I think I would have enjoyed this book more if it had picked a focus. The author's experience with IBD was heartbreaking. I don't have a chronic illness, but I do have a chronic disorder that allowed me to identify with many of the things she experienced. I appreciated her frankness when discussing her illness and all that was involved in getting a correct diagnosis.
The informational part of the book was relevant, insightful, and helpful. It did get a little preachy in some areas, but I agreed with almost everything she said so none of it really bothered me. What I didn't like was how we were constantly shifting from the memoir to the educational/advice stuff. I would've preferred it if the book were broken into two parts: the memoir and the other stuff. This would have made the memoir more poignant and seamless. Instead, she'd be talking about her experiences with doctors who downplayed her symptoms or made her feel confused or left out of her treatment plan - all told in very emotional language - then segue right into very clinical information on how to choose a doctor and deal with insurance companies that deny treatments or medication. It was very jarring, and it happened in every chapter.
Overall, this wasn't what I was expecting it to be, but I do think it would be helpful to others in similar situations. I almost feel like it should be marketed as more self-help(?) than memoir. 3 stars
I think I would have enjoyed this book more if it had picked a focus. The author's experience with IBD was heartbreaking. I don't have a chronic illness, but I do have a chronic disorder that allowed me to identify with many of the things she experienced. I appreciated her frankness when discussing her illness and all that was involved in getting a correct diagnosis.
The informational part of the book was relevant, insightful, and helpful. It did get a little preachy in some areas, but I agreed with almost everything she said so none of it really bothered me. What I didn't like was how we were constantly shifting from the memoir to the educational/advice stuff. I would've preferred it if the book were broken into two parts: the memoir and the other stuff. This would have made the memoir more poignant and seamless. Instead, she'd be talking about her experiences with doctors who downplayed her symptoms or made her feel confused or left out of her treatment plan - all told in very emotional language - then segue right into very clinical information on how to choose a doctor and deal with insurance companies that deny treatments or medication. It was very jarring, and it happened in every chapter.
Overall, this wasn't what I was expecting it to be, but I do think it would be helpful to others in similar situations. I almost feel like it should be marketed as more self-help(?) than memoir. 3 stars
February 3, 2022
This book punched a hole in my chest, and I mean that in the best possible way.
I have many disorders, but the one that affects my life the most is POTS. I have read books with characters who have chronic illnesses before, but before this book, I had never read a nonfiction book about chronic illnesses. I have never felt more seen in my entire life than while reading this book. There were times I would listen to this audiobook while it was pitch black, just laying in my bed, and sob from the connection. My feelings and thoughts about my illness and my body were put into words! Someone understands and feels what I am going through!
This book was a beautiful thing to read. I think everyone should read it. Those with a chronic illness will feel deeply connected, and those without will learn many valuable things.
Please read this masterpiece❤️
TW: drug use, alcoholism, death of a loved one, SA, near death from chronic illness, covid-19, discussion of suicide,
I have many disorders, but the one that affects my life the most is POTS. I have read books with characters who have chronic illnesses before, but before this book, I had never read a nonfiction book about chronic illnesses. I have never felt more seen in my entire life than while reading this book. There were times I would listen to this audiobook while it was pitch black, just laying in my bed, and sob from the connection. My feelings and thoughts about my illness and my body were put into words! Someone understands and feels what I am going through!
This book was a beautiful thing to read. I think everyone should read it. Those with a chronic illness will feel deeply connected, and those without will learn many valuable things.
Please read this masterpiece❤️
TW: drug use, alcoholism, death of a loved one, SA, near death from chronic illness, covid-19, discussion of suicide,
August 16, 2021
I received a free copy of this book directly from the publisher, and I'm grateful for the opportunity to read this and write a review.
A powerful combination memoir and guide on how to navigate chronic illness in the US, Miller writes both of her own experiences and offers advice on how to deal with the changes wrought by chronic illness. The resources in the back of this I think could be very helpful; she writes about how to find a therapist who specializes in the changes of life and trauma associated with chronic illness, how to find a good doctor, and also reveals how absolutely garbage our healthcare system here is in the US. Her own journey of course is also really enlightening; she doesn't hold back in examining how her own privileges help her get the care she needs, and also how capitalism and the structure of work in the US really further damaged her health.
I think this could be really helpful for anyone facing chronic illness or pain--it really does cover a lot of important ground, and it doesn't pretend there are easy answers for any of the challenges that arise.
A powerful combination memoir and guide on how to navigate chronic illness in the US, Miller writes both of her own experiences and offers advice on how to deal with the changes wrought by chronic illness. The resources in the back of this I think could be very helpful; she writes about how to find a therapist who specializes in the changes of life and trauma associated with chronic illness, how to find a good doctor, and also reveals how absolutely garbage our healthcare system here is in the US. Her own journey of course is also really enlightening; she doesn't hold back in examining how her own privileges help her get the care she needs, and also how capitalism and the structure of work in the US really further damaged her health.
I think this could be really helpful for anyone facing chronic illness or pain--it really does cover a lot of important ground, and it doesn't pretend there are easy answers for any of the challenges that arise.
June 4, 2021
I really really wanted to love this book. But alas...As someone with a permanent disability from two severe chronic illnesses, this was just ok.
I’m only 6 years older than the writer says she is, but the book has the whine of the stereotypical entitled millennial woven through it. I empathize for her as truly no one should have to go through these things, but I actually got to the point where I was skipping whole pages because of her voice trying to be a mixture of relevantly “hip” and over-woeful. It wasn’t the poop talk; that’s a normal conversation with most of us in the disabled crowd. 🙃 I don’t know if this is just the way she presents herself on the page or how she naturally talks, but it made me roll my eyes at parts. People have suffered lifetimes of worse conditions without whining so much. Chronic illness stinks, and yes I agree with the injustices we face as the disabled community, but realistically she’s doing so much better than many of us. (I know we shouldn’t compare, and yet I am. Oops. That’s me not her. ) I only wish my conditions could go into remission, or even have medication to take my symptoms and pain away, but that realistically will never happen.
I do wish Ms. Miller continued lifetime success with her treatments as she has reached a level of remission/quality of life that a lot of us can only dream of. For that I am thankful; that one of us “spoonies” has been able to function at a much higher level than rock bottom where so many of us dwell. That in itself is such a wonderful gift she’s been blessed with.
My hope is that through this book people realize what a gift their good health is, and catch a glimpse of what it’s like to lose it. Through that there can be better understanding and empathy for all of us on the other side waiting for cures. We’re not faking it. We aren’t lazy. We really are in that much pain. We really are that tired. We want to be active more than you want us to be active. Our conditions really are unpredictable. But we’re still humans living our lives the best we can. ❤️
I’m only 6 years older than the writer says she is, but the book has the whine of the stereotypical entitled millennial woven through it. I empathize for her as truly no one should have to go through these things, but I actually got to the point where I was skipping whole pages because of her voice trying to be a mixture of relevantly “hip” and over-woeful. It wasn’t the poop talk; that’s a normal conversation with most of us in the disabled crowd. 🙃 I don’t know if this is just the way she presents herself on the page or how she naturally talks, but it made me roll my eyes at parts. People have suffered lifetimes of worse conditions without whining so much. Chronic illness stinks, and yes I agree with the injustices we face as the disabled community, but realistically she’s doing so much better than many of us. (I know we shouldn’t compare, and yet I am. Oops. That’s me not her. ) I only wish my conditions could go into remission, or even have medication to take my symptoms and pain away, but that realistically will never happen.
I do wish Ms. Miller continued lifetime success with her treatments as she has reached a level of remission/quality of life that a lot of us can only dream of. For that I am thankful; that one of us “spoonies” has been able to function at a much higher level than rock bottom where so many of us dwell. That in itself is such a wonderful gift she’s been blessed with.
My hope is that through this book people realize what a gift their good health is, and catch a glimpse of what it’s like to lose it. Through that there can be better understanding and empathy for all of us on the other side waiting for cures. We’re not faking it. We aren’t lazy. We really are in that much pain. We really are that tired. We want to be active more than you want us to be active. Our conditions really are unpredictable. But we’re still humans living our lives the best we can. ❤️
December 14, 2020
Thank you to NetGalley for providing me with an advanced copy in exchange for a honest review.
Trigger/Content Warnings: Graphic depiction of bodily functions, medical trauma, medical PTSD, sexual assault, detailed hospital visits
Chapter Length: ~15-20 pages; there are endnotes with the research citations at the end of each chapter.
This book is brutally honest in its portrayal of chronic illness. Tessa Miller makes you feel her pain, physical and emotional, along with her. The pages are filled with her own experience with Crohn's mixed with social and political commentary on how fucked up it is to be sick in the United States. And if you didn't understand that before, she provides drug prices without insurance to make the point hit harder (I honestly loved that bit). Ultimately, if you don't get how much chronically ill and disabled people are shit on in the U.S., then you never will.
There were moments were I wanted to hug Miller. I felt such a kinship when she had complicated feelings surrounding her relationships with her family. I wanted to cry for her with each C.dif diagnosis, fully knowing it was just another thing to add to an already tired body. It's rough to read such a story when you know the psychological effects yet another diagnosis adds.
At the end of the book, I felt like Miller was working on healing herself. It wasn't preachy or "live laugh love"; I don't think anyone with chronic illness can find healing with such platitudes. Instead, it was filled with reality, honesty, and scientific backing which we love to read when dealing with long-term illness.
Trigger/Content Warnings: Graphic depiction of bodily functions, medical trauma, medical PTSD, sexual assault, detailed hospital visits
Chapter Length: ~15-20 pages; there are endnotes with the research citations at the end of each chapter.
This book is brutally honest in its portrayal of chronic illness. Tessa Miller makes you feel her pain, physical and emotional, along with her. The pages are filled with her own experience with Crohn's mixed with social and political commentary on how fucked up it is to be sick in the United States. And if you didn't understand that before, she provides drug prices without insurance to make the point hit harder (I honestly loved that bit). Ultimately, if you don't get how much chronically ill and disabled people are shit on in the U.S., then you never will.
There were moments were I wanted to hug Miller. I felt such a kinship when she had complicated feelings surrounding her relationships with her family. I wanted to cry for her with each C.dif diagnosis, fully knowing it was just another thing to add to an already tired body. It's rough to read such a story when you know the psychological effects yet another diagnosis adds.
At the end of the book, I felt like Miller was working on healing herself. It wasn't preachy or "live laugh love"; I don't think anyone with chronic illness can find healing with such platitudes. Instead, it was filled with reality, honesty, and scientific backing which we love to read when dealing with long-term illness.
February 6, 2023
i honestly want this to be mandatory reading for everyone in my life. i wept while reading it, feeling so seen and validated in my own experience of living with UC, a disease that completely wrecks me physically and emotionally but that i tend to keep to myself out of fear of being a burden, minimized, or just seen as a sick person.
i literally reached out to the author on instagram like a loser just to thank her because of how meaningful it was for me to read this.
i literally reached out to the author on instagram like a loser just to thank her because of how meaningful it was for me to read this.
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