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3.39 AVERAGE
3.39 AVERAGE
Porochista Khakpour has written a memoir about sickness that through its design and prose mirrors sickness. This makes it hard to read, for different reasons. The story moves back and forth in ways that are sometimes hard to follow, it stops and starts up again later on or is altogether forgotten, sometimes things just don't make sense. It's messy. Being sick, especially with an illness that is untreated, denied, psychosomaticized, is messy. Some readers wish she had "cleaned it up" so that it was more palatable, so they didn't have to feel the discomfort, frustration, annoyance, and confusion the text invokes as it is. Other readers, and it seems in particular those of us who share her experience (or some of it) feel that FINALLY we are reading a memoir that represents us in our messiness, without apology or shame.
This book is full of insights for those of you who do not share this experience, if you are willing to work for it. And you should. Our experiences matter, and they are underrepresented, misunderstood, stigmatized, ridiculed, and ignored. Books like this are necessary and vital to our survival.
This book is full of insights for those of you who do not share this experience, if you are willing to work for it. And you should. Our experiences matter, and they are underrepresented, misunderstood, stigmatized, ridiculed, and ignored. Books like this are necessary and vital to our survival.
This book was excellent! It was incredibly sad to read about her suffering but at the same time it was inspiring because despite everything she went through she never gave up. She had her moments when she was very close to giving up but she never did. It was amazing to read. I learned a lot about Lyme disease and how it affects your entire body and mind. It's shocking what one tick can do to you. This is a very important read.
I have been really looking forward to reading this, but found it disappointing. As someone with a chronic illness, I can really relate to the parts about not being a "good" sick person and struggling with doctors/diagnoses. I wanted more of that. What I got was chapters about illegal drugs and uncertain housing situations.
This was a very frustrating read. The only thing I seem to take away from the book is how broken down the American healthcare system seems to be, and that there seem to be too many quacks who prey on unfortunate and trusting people who have no medical savvy.
I feel like this one has been on my TBR for ages and I'm glad I finally read it. The medical gaslighting was a lot; I think abled-bodied folks will be tempted to think this could not happen, but I felt it was so relatable.
Content Warnings
Graphic: Chronic illness, Drug abuse, Car accident, Gaslighting
Moderate: Sexual assault, Medical content
This book was hard to read, but not because Porochista isn't a beautiful writer; it's hard to read about the relentlessness of chronic illness, addiction, trauma, and the failings of our healthcare system. I'm so glad that I kept reading, but it wasn't always easy.
This one snuck onto my shelf almost by accident, after the cover sucked me in during a bookstore browse at at the Hawthorne Powell's and then it had no hold line at the library. (Instant gratification isn't exactly the go-to pleasure of bookworm life)
It ultimately lands in the "I didn't love it and likely won't recommend it, but I'm glad I read it and I'm glad it exists." category for me. Yes to more stories about chronic illness in young women, and yes to those voices being heard even when I'm not particularly enamored with what they're saying or how they're saying it. I confess that I judged her at various points in this book: for her financial choices, her romantic choices, her general "selfishness." For me, this is where this book shines -- the ways it subtly highlighted my own biases about chronic illness, and about how women are expected to perform womanhood and health in our culture.
If you're looking for other contemporary books in this category, I wholeheartedly recommend Michele Lent Hirsch's "Invisible" and Eleanor Morgan's "Hysterical."
It ultimately lands in the "I didn't love it and likely won't recommend it, but I'm glad I read it and I'm glad it exists." category for me. Yes to more stories about chronic illness in young women, and yes to those voices being heard even when I'm not particularly enamored with what they're saying or how they're saying it. I confess that I judged her at various points in this book: for her financial choices, her romantic choices, her general "selfishness." For me, this is where this book shines -- the ways it subtly highlighted my own biases about chronic illness, and about how women are expected to perform womanhood and health in our culture.
If you're looking for other contemporary books in this category, I wholeheartedly recommend Michele Lent Hirsch's "Invisible" and Eleanor Morgan's "Hysterical."
Sick is a frustrating brave, honest, and vulnerable memoir that I have very mixed feelings about. At times, I could relate to every word the author wrote and at other times, I felt like the timeline was a bit muffled and I felt confused.
Khakpour has late-stage chronic Lyme disease. The CDC estimates that there are close to 30,000 cases of Lyme disease happening each year, although studies have indicated that the actual number of Lyme disease patients is closer to 300,000. Lyme disease has been debated in the medical community for years.
Tests to determine whether a person has been infected by the bacteria causes by tick bites are not covered under health insurance, nor are these tests definitive. There is nothing to prove that the bacteria has been killed or that a person has been cured. Worst of all, treatment is out of pocket, and there are many doctors who take advantage of this by charging patients ridiculous sums of money for treatments that don't work.
The author doesn't know when she was infected, although she speculates often throughout her memoir. Like me, she doesn't really remember a time when she wasn't in pain.
Khakpour's symptoms range from fainting, vertigo and dizziness to severe insomnia, pain, migraines, body temperature problems; she can't swallow properly, she gets disoriented easily, and she uses a cane because she walks with a limp. Throughout Sick, Khakpour reveals the countless interactions with doctors who dismiss these symptoms and instead focus on her depression, mental state, anxiety, and diagnose her with many other diseases and conditions.
Khakpour's battle with Lyme disease along with her years of searching for some sort of an answer to her mysterious illness is entwined with a solid backstory of loss: The author suffered trauma and displacement at a young age when her family left Iran for America. She has never had a place to call home, her parents seem oddly unsupportive of her illness, and she has suffered physical abuse.
All of these things can easily be seen as catalysts for her Lyme flare-ups and relapses. The fact that she never receives proper treatment for a serious car accident she's involved in, and mixed with the fact that she is clearly ill and doctors seem to ignore that she is in distress is exceptionally heart-breaking to read.
Health care in America is well known for its habit of using female hysteria as an excuse to ignore or trivialize women who are in pain. One clear example of this is how Multiple Sclerosis was often treated as female hysteria until it was proven by autopsy that the spinal cord and brain damage in MS patients - who are predominantly female - made no mistake that MS was a real neurological disease.
In today's world, women are still waiting longer in ERs, receive 13-25% less than men in painkiller prescriptions, and are often treated as a psychiatric case first.
Khakpour has late-stage Lyme disease. No medical institution can argue this now, but it took years of searching for answers and years of trying all sorts of alternative therapies while her disease continued to worsen. The author notes that, “Women suffer the most from Lyme. They are diagnosed the latest, as doctors often treat them as psychiatric cases first.”
Additionally, women with Lyme disease are often incorrectly diagnosed with diseases like fibromyalgia and chronic fatigue syndrome. Consequently, they do not receive adequate treatment for their disease symptoms.
It made me furious to read about how she was misdiagnosed and treated with skepticism, both by her doctors and the people in her life.
Dislikes: I didn't like the way this book was edited or some of its prose. At times it is beautiful, and at times, Khakpour's writing felt really forced. I also would've preferred a book that focused more on her illness rather than the other experiences relayed in this book, but this is a memoir and she has told her whole story. All of it weaves together, but I found myself skipping past certain passages in her book to get back to the main subject at hand: Being sick.
This is a good book for anyone suffering from chronic illness or for anyone who knows someone who is chronically ill, but doesn't understand the world we live in.
Best Takeaway Quotes:
Living with this disease has cost me more than $140,000 so far. Experts put the average cost of late-stage Lyme at somewhere around $20,000 to $200,000. The annual cost of Lyme disease in the United States is more than $1–$3 billion as of 2017.
My doctor did what he did the past two times I had had Lyme relapses and prescribed me supplements and medications: words like glutathione, acetylcholine, methylfolate, fluconazole, and more all back in my life. I was back to having dozens and dozens of pill bottles.
I had no idea I was about to hit new limits of unbearable.
My case is a CDC-level Lyme case, I’d learned to say, which was true, hoping doctors would understand I was one of the small percent of Lyme sufferers who actually had the luxury of CDC recognition, what the rest hope for. I’m not like those other ones . . . I’d try to knowingly add, to speak their suspicious dismissive language, to let them know I was real.
When in 2009, almost twenty years after that first fainting incident, Dr. E, an infectious disease specialist who treated my Lyme in Pennsylvania, tried to get my entire history of illness, I recalled all these instances. It interested him, the ear surgery, the tremors, the fainting. He asked me if there was any chance I could have been exposed to ticks, and after much struggling I could only come up with one memory: when I was around six or seven, just a couple of years into our new life in America, my father took my mother and me hiking.
I never again let myself fully pass out—instead, when it came to that intense fading, the light-headedness, after a hot shower and often at malls, I would sit and place my head between my legs as instructed, and I’d always somehow evade it.
And the deal with so many chronic illnesses is that most people won’t want to believe you. They will tell you that you look great, that it might be in your head only, that it is likely stress, that everything will be okay. None of these are the right things to say to someone whose entire existence is a fairly consistent torture of the body and mind. They say it because they are well-intentioned usually, because they wish you the best, but they also say it because you make them uncomfortable. Your existence is evidence of death.
But there’s something I’ve held on to, that I’ve heard from more than one doctor: the link between chronic illness and PTSD. If post-traumatic stress disorder can be defined as “a mental health condition that’s triggered by a terrifying event—either experiencing it or witnessing it (symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event),” according to the Mayo Clinic, then it makes sense that it can trigger a relapse or surfacing of some disability or illness. The disability or illness itself could cause the PTSD, and the experience of going for years undiagnosed and then misdiagnosed as many like myself do can cause considerable trauma, to put it mildly.
“I’m not sure I trust anyone anymore. It’s been a while since I’ve trusted anyone.”
Khakpour has late-stage chronic Lyme disease. The CDC estimates that there are close to 30,000 cases of Lyme disease happening each year, although studies have indicated that the actual number of Lyme disease patients is closer to 300,000. Lyme disease has been debated in the medical community for years.
Tests to determine whether a person has been infected by the bacteria causes by tick bites are not covered under health insurance, nor are these tests definitive. There is nothing to prove that the bacteria has been killed or that a person has been cured. Worst of all, treatment is out of pocket, and there are many doctors who take advantage of this by charging patients ridiculous sums of money for treatments that don't work.
The author doesn't know when she was infected, although she speculates often throughout her memoir. Like me, she doesn't really remember a time when she wasn't in pain.
Khakpour's symptoms range from fainting, vertigo and dizziness to severe insomnia, pain, migraines, body temperature problems; she can't swallow properly, she gets disoriented easily, and she uses a cane because she walks with a limp. Throughout Sick, Khakpour reveals the countless interactions with doctors who dismiss these symptoms and instead focus on her depression, mental state, anxiety, and diagnose her with many other diseases and conditions.
Khakpour's battle with Lyme disease along with her years of searching for some sort of an answer to her mysterious illness is entwined with a solid backstory of loss: The author suffered trauma and displacement at a young age when her family left Iran for America. She has never had a place to call home, her parents seem oddly unsupportive of her illness, and she has suffered physical abuse.
All of these things can easily be seen as catalysts for her Lyme flare-ups and relapses. The fact that she never receives proper treatment for a serious car accident she's involved in, and mixed with the fact that she is clearly ill and doctors seem to ignore that she is in distress is exceptionally heart-breaking to read.
Health care in America is well known for its habit of using female hysteria as an excuse to ignore or trivialize women who are in pain. One clear example of this is how Multiple Sclerosis was often treated as female hysteria until it was proven by autopsy that the spinal cord and brain damage in MS patients - who are predominantly female - made no mistake that MS was a real neurological disease.
In today's world, women are still waiting longer in ERs, receive 13-25% less than men in painkiller prescriptions, and are often treated as a psychiatric case first.
Khakpour has late-stage Lyme disease. No medical institution can argue this now, but it took years of searching for answers and years of trying all sorts of alternative therapies while her disease continued to worsen. The author notes that, “Women suffer the most from Lyme. They are diagnosed the latest, as doctors often treat them as psychiatric cases first.”
Additionally, women with Lyme disease are often incorrectly diagnosed with diseases like fibromyalgia and chronic fatigue syndrome. Consequently, they do not receive adequate treatment for their disease symptoms.
It made me furious to read about how she was misdiagnosed and treated with skepticism, both by her doctors and the people in her life.
Dislikes: I didn't like the way this book was edited or some of its prose. At times it is beautiful, and at times, Khakpour's writing felt really forced. I also would've preferred a book that focused more on her illness rather than the other experiences relayed in this book, but this is a memoir and she has told her whole story. All of it weaves together, but I found myself skipping past certain passages in her book to get back to the main subject at hand: Being sick.
This is a good book for anyone suffering from chronic illness or for anyone who knows someone who is chronically ill, but doesn't understand the world we live in.
Best Takeaway Quotes:
Living with this disease has cost me more than $140,000 so far. Experts put the average cost of late-stage Lyme at somewhere around $20,000 to $200,000. The annual cost of Lyme disease in the United States is more than $1–$3 billion as of 2017.
My doctor did what he did the past two times I had had Lyme relapses and prescribed me supplements and medications: words like glutathione, acetylcholine, methylfolate, fluconazole, and more all back in my life. I was back to having dozens and dozens of pill bottles.
I had no idea I was about to hit new limits of unbearable.
My case is a CDC-level Lyme case, I’d learned to say, which was true, hoping doctors would understand I was one of the small percent of Lyme sufferers who actually had the luxury of CDC recognition, what the rest hope for. I’m not like those other ones . . . I’d try to knowingly add, to speak their suspicious dismissive language, to let them know I was real.
When in 2009, almost twenty years after that first fainting incident, Dr. E, an infectious disease specialist who treated my Lyme in Pennsylvania, tried to get my entire history of illness, I recalled all these instances. It interested him, the ear surgery, the tremors, the fainting. He asked me if there was any chance I could have been exposed to ticks, and after much struggling I could only come up with one memory: when I was around six or seven, just a couple of years into our new life in America, my father took my mother and me hiking.
I never again let myself fully pass out—instead, when it came to that intense fading, the light-headedness, after a hot shower and often at malls, I would sit and place my head between my legs as instructed, and I’d always somehow evade it.
And the deal with so many chronic illnesses is that most people won’t want to believe you. They will tell you that you look great, that it might be in your head only, that it is likely stress, that everything will be okay. None of these are the right things to say to someone whose entire existence is a fairly consistent torture of the body and mind. They say it because they are well-intentioned usually, because they wish you the best, but they also say it because you make them uncomfortable. Your existence is evidence of death.
But there’s something I’ve held on to, that I’ve heard from more than one doctor: the link between chronic illness and PTSD. If post-traumatic stress disorder can be defined as “a mental health condition that’s triggered by a terrifying event—either experiencing it or witnessing it (symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event),” according to the Mayo Clinic, then it makes sense that it can trigger a relapse or surfacing of some disability or illness. The disability or illness itself could cause the PTSD, and the experience of going for years undiagnosed and then misdiagnosed as many like myself do can cause considerable trauma, to put it mildly.
“I’m not sure I trust anyone anymore. It’s been a while since I’ve trusted anyone.”
"Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease."
~Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors
First of all thank you Harper Perennial for sending me this Arc. I am a big fan of Memoirs so I was really excited to read this one.
A journey of illness that reads more like a detective novel.
Porochista has late-stage lyme disease, but it took years for her to get this diagnosis. She felt sick for most of her life. Her body always working against her. Displacement and early childhood trauma aggravating her symptoms.
Doctors were always baffled, convinced it was all psychological. She tried it all therapy, western medicine, eastern medicine, healers, diet, drugs, pills....lots of pills. Doctors always pushing pills some helping to a point. Addiction, depression and anxiety played their parts too. This lady went through the ringer for years! Until finally getting a positive diagnosis, with much relief, a name for what ailed her for so long. A fight she will now fight forever.
Brave, honest, and informative. SICK is a very interesting memoir. One that needed to be written. More people need to be aware of this at times debilitating to deadly disease. This one hits close to home for me. A family member of mine has this disease. And it took a long time for him to get a diagnosis too. He has been on the road to recovery for the last year. Yesterday I received some news about him being in hospital. Doctor's thinking he had had a heart attack, but now think it may have been something related to the Lyme disease instead. Happy to say he is resting at home now. But It goes to show that this is a crazy disease we need to learn more about.
I really enjoyed this memoir and thank Porochista for writing it.
It comes out June 5th.....Check it out!
For more of my book content check out instagram.com/bookalong
~Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors
First of all thank you Harper Perennial for sending me this Arc. I am a big fan of Memoirs so I was really excited to read this one.
A journey of illness that reads more like a detective novel.
Porochista has late-stage lyme disease, but it took years for her to get this diagnosis. She felt sick for most of her life. Her body always working against her. Displacement and early childhood trauma aggravating her symptoms.
Doctors were always baffled, convinced it was all psychological. She tried it all therapy, western medicine, eastern medicine, healers, diet, drugs, pills....lots of pills. Doctors always pushing pills some helping to a point. Addiction, depression and anxiety played their parts too. This lady went through the ringer for years! Until finally getting a positive diagnosis, with much relief, a name for what ailed her for so long. A fight she will now fight forever.
Brave, honest, and informative. SICK is a very interesting memoir. One that needed to be written. More people need to be aware of this at times debilitating to deadly disease. This one hits close to home for me. A family member of mine has this disease. And it took a long time for him to get a diagnosis too. He has been on the road to recovery for the last year. Yesterday I received some news about him being in hospital. Doctor's thinking he had had a heart attack, but now think it may have been something related to the Lyme disease instead. Happy to say he is resting at home now. But It goes to show that this is a crazy disease we need to learn more about.
I really enjoyed this memoir and thank Porochista for writing it.
It comes out June 5th.....Check it out!
For more of my book content check out instagram.com/bookalong
Maybe I’m a bit to close to the topic (I have no Lyme disease, but struggled with lifelong problems), but I didn’t connect to this book.
In the epilogue, she says, that she wrote the book during a very hard depressive phase. that made it easier for me to understand, why the book was so dark and felt like something tries to pull me down.
Don’t get me wrong. She has every right to be angry and sad, but on the other hand, I often thought, that there is no point in the story besides showing how everyone was wrong and mistreated her... and sometimes they clearly did.
I think, this book could have been better with some distance and reflection.
In the epilogue, she says, that she wrote the book during a very hard depressive phase. that made it easier for me to understand, why the book was so dark and felt like something tries to pull me down.
Don’t get me wrong. She has every right to be angry and sad, but on the other hand, I often thought, that there is no point in the story besides showing how everyone was wrong and mistreated her... and sometimes they clearly did.
I think, this book could have been better with some distance and reflection.