Sick
In the tradition of Brain on Fire and Darkness Visible, an honest, beautifully rendered memoir of chronic illness, misdiagnosis, addiction, and the myth of full recovery that details author Porochista Khakpour's struggles with late-stage Lyme disease.For as long as writer Porochista Khakpour can remember, she has been sick. For most of that time, she didn't know why. All of her trips to the ER and her daily anguish, pain, and lethargy only ever resulted in one question: How could any one person be this sick? Several drug addictions, three major hospitalizations, and over $100,000 later, she finally had a diagnosis: late-stage Lyme disease. Sick is Khakpour's arduous, emotional journey—as a woman, a writer, and a lifelong sufferer of undiagnosed health problems—through the chronic illness that perpetually left her a victim of anxiety, living a life stymied by an unknown condition.Divided by settings, Khakpour guides the reader through her illness by way of the locations that changed her course—New York, LA, New Mexico, and Germany—as she meditates on both the physical and psychological impacts of uncertainty, and the eventual challenge of accepting the diagnosis she had searched for over the course of her adult life. With candor and grace, she examines her subsequent struggles with mental illness, her addiction to the benzodiazepines prescribed by her psychiatrists, and her ever-deteriorating physical health. A story about survival, pain, and transformation, Sick is a candid, illuminating narrative of hope and uncertainty, boldly examining the deep impact of illness on one woman's life.    

Sick Details

TitleSick
Author
ReleaseJun 5th, 2018
PublisherHarper Perennial
ISBN-139780062428721
Rating
GenreAutobiography, Memoir, Nonfiction, Disability, Health, Biography, Medical

Sick Review

  • Hannah
    January 1, 1970
    This might be my biggest reading disappointment of the year so far. I have been looking forward to this book for ages and when it finally arrived I jumped straight into reading it. I find the story Porochista Khakpour tells - of illness that went years without a diagnosis, about racism and sexism in medicine, about addiction and losing oneself - so very very important and relevant, but the execution just did not work for me. I found the structure of the book unhelpful, the jumping back and forth This might be my biggest reading disappointment of the year so far. I have been looking forward to this book for ages and when it finally arrived I jumped straight into reading it. I find the story Porochista Khakpour tells - of illness that went years without a diagnosis, about racism and sexism in medicine, about addiction and losing oneself - so very very important and relevant, but the execution just did not work for me. I found the structure of the book unhelpful, the jumping back and forth, sometimes within the same paragraph difficult to follow and frustrating, even though I can see how that could have worked wonderfully.She says in the acknowledgments that she stripped her memoir of everything but herself - and maybe she was a bit too successful in that aim. I left the book not even quite knowing what Lyme Disease does to her, or what symptoms she had. Her encounters with medical doctor after medical doctor felt undefined and somehow left me confused - because I know she wanted me to see how godawful the doctors were (and I am sure they were) but I could only ever see her. I think some grounding in the reality of Lyme would have worked better for me.My biggest problem was the prose, on a sentence-by-sentence level. I found it weirdly clumsy in parts, while sometimes being very profound. There were sentences however that I had to read multiple times to get to their meanings and I am not sure that was intentional.
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  • Julie Ehlers
    January 1, 1970
    Given that an official diagnosis doesn't come until 40 pages from the end, Sick is less a memoir about having Lyme disease than a memoir about having a mysterious illness that baffles doctors, results in a lot of inappropriate (and expensive) treatments, and is routinely viewed as purely psychological (an infuriatingly common scenario for women). For that reason alone, this book is valuable. Indeed, because of my interest in the topic, I broke my new resolution to avoid current memoirs in order Given that an official diagnosis doesn't come until 40 pages from the end, Sick is less a memoir about having Lyme disease than a memoir about having a mysterious illness that baffles doctors, results in a lot of inappropriate (and expensive) treatments, and is routinely viewed as purely psychological (an infuriatingly common scenario for women). For that reason alone, this book is valuable. Indeed, because of my interest in the topic, I broke my new resolution to avoid current memoirs in order to read Sick. But ultimately I wish I hadn't. I guess I thought because Khakpour is an acclaimed novelist, this memoir would be better than the others I've encountered lately, but that wasn't the case. Although the novelty of the story initially made this absorbing, the jumping back and forth in time was confusing and messed with the momentum, it was pretty repetitive, and the writing was competent at best and bafflingly awkward at worst. Khakpour apparently wrote at least some of this while relapsing, so perhaps it's understandable that this isn't her best work, but you'd think an editor could have stepped in and cleaned up some of the more egregious awkwardness. Don't publishers do that anymore? I've seen way too much sloppiness in current books and it's getting depressing. Beyond that... I know likability isn't really of utmost importance when it comes to memoir, but Khakpour was snide about other people just a few too many times for me to overlook it. I would've thought a serious novelist would have a somewhat better understanding of and compassion for other people, or at least be sensible enough to remove some of the snideness before publishing, but not in this case. Honestly, even though this book wasn't very long, I spent the last 50 pages or so just waiting for it to be over. If you're already a fan of Khakpour's fiction, you may well find Sick fascinating. Otherwise you can feel okay about skipping it.
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  • Susannah
    January 1, 1970
    “I sometimes wonder if I would have been less sick if I had a home.”
  • Jessie
    January 1, 1970
    I think that books about chronic illness and the experiences of women of colour accessing healthcare are essential, but I did not like this book. Here’s the thing. I think that explorations of trauma and illness, of gender and illness, of race and illness, are all so important. I think exploring women’s illness, and illnesses such as Lyme, and calling out how they are often characterized as psychiatric is needed. I think that avoiding narratives of sick then well, of triumph over what is in fact I think that books about chronic illness and the experiences of women of colour accessing healthcare are essential, but I did not like this book. Here’s the thing. I think that explorations of trauma and illness, of gender and illness, of race and illness, are all so important. I think exploring women’s illness, and illnesses such as Lyme, and calling out how they are often characterized as psychiatric is needed. I think that avoiding narratives of sick then well, of triumph over what is in fact just a stage of life and inevitable outcome of living is good. This book was too much of a hot mess. I think that this was largely due to poor writing and editing. Khakpour was not well when she wrote, and writing was one of the challenges she identified during periods of illness. But where was her editor in all of this? I found this book almost impossible to follow. People did not stand out to me, when exes and friends re-emerged in later chapters, I could not remember who they were. There were no real human connections communicated in this memoir and it made it hard to connect as a reader. Also, I don’t know that organizing chapters by cities made all that much sense. I would have picked years or months or symptoms instead. Also, I didn’t find the writing about romances or addiction or heartbreak or illness to be evocative; I was not transported by her prose. Finally, I think I had a hard time relating to the author, who I found to be kind of enamoured of her own image as the almost heroin-chic waif on trend in the 90’s. Thin, jittery, jumping from rich boyfriend to rich boyfriend, and seemingly expecting to be looked after by everyone in her life. I didn’t understand how she found all of these wealthy people to provide so much to her (money, care, housing, travel, energy), but it was surreal and off-putting to me. An aside: what was the one sentence in brackets at the end of the book about bisexuality? It was so odd, and again, so poorly edited, relationships were explored in detail, so many, and then at the end she was like “there were women too, but I didn’t think I’d mention it but also should mention it.” I didn’t get this book.
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  • Melissa
    January 1, 1970
    A finely wrought memoir of Khakpour’s battle with Lyme disease and, more broadly, how the early trauma and displacement of her childhood intertwines and muddies the challenge of “putting a name” to the cause of her symptoms. A personal fascination, for me, was the revelation that Khakpour and I are almost exactly the same age - she has lived so much more life than I have that I would have referred her to as one of the “older girls” had we been at the same school. Beautiful writing from the sente A finely wrought memoir of Khakpour’s battle with Lyme disease and, more broadly, how the early trauma and displacement of her childhood intertwines and muddies the challenge of “putting a name” to the cause of her symptoms. A personal fascination, for me, was the revelation that Khakpour and I are almost exactly the same age - she has lived so much more life than I have that I would have referred her to as one of the “older girls” had we been at the same school. Beautiful writing from the sentence-level on up.
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  • Marcy Dermansky
    January 1, 1970
    I have fascinated with Porochista Khakpour for years. It was so wonderful to actually meet the real Porochista in real life and sort of fall in love with the actual person. Reading her memoir, SICK, was a fascinating entry into the actual life woman behind the tweets -- so much of the stories in this book was already familiar in a strange way -- and FB posts and the essays and novels. It felt almost like a privilege, to read her actual story. I am in awe of how honest this book is. And well craf I have fascinated with Porochista Khakpour for years. It was so wonderful to actually meet the real Porochista in real life and sort of fall in love with the actual person. Reading her memoir, SICK, was a fascinating entry into the actual life woman behind the tweets -- so much of the stories in this book was already familiar in a strange way -- and FB posts and the essays and novels. It felt almost like a privilege, to read her actual story. I am in awe of how honest this book is. And well crafted, jumping through time and place. The sentences. The scene of her car crash coming home from class late one night read like a thriller. This memoir also me angry at so many doctors who caused so much more unnecessary pain. This whole book is page turner, and I read it over the course of a weekend. I even found myself feeling sick on the final day of reading Sick, curled up in bed with her book, almost an act of solidarity.
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  • Komal
    January 1, 1970
    I think I went in expecting too much. Khakpour is at her best when she describes the indifference of doctors, her struggles and confusion regarding Lyme and seeing how cities and lovers correspond to her illness. At several times, I felt the prose could have been tightened. It was often descriptive where it could have been insightful. Khakpour notes in her acknowledgements that she stripped the book of everything else but her ego. When I think of Meghan Rourke's The Long Goodbye, I think perhaps I think I went in expecting too much. Khakpour is at her best when she describes the indifference of doctors, her struggles and confusion regarding Lyme and seeing how cities and lovers correspond to her illness. At several times, I felt the prose could have been tightened. It was often descriptive where it could have been insightful. Khakpour notes in her acknowledgements that she stripped the book of everything else but her ego. When I think of Meghan Rourke's The Long Goodbye, I think perhaps Khakpour should have re-evaluated that decision.
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  • Emily
    January 1, 1970
    This is a difficult, frustrating read -- an an immensely brave one. I applaud Porochista's honesty and openness about her battle with Lyme disease and the horrific chain of events that has followed the onset of her illness. It is infuriating, but sadly not surprising, to see all of the ways she has been mistreated and misdiagnosed by the myriad medical professionals she has seen throughout her life. For anyone who struggles with constant, undiagnosed pain, for anyone who doesn't understand what This is a difficult, frustrating read -- an an immensely brave one. I applaud Porochista's honesty and openness about her battle with Lyme disease and the horrific chain of events that has followed the onset of her illness. It is infuriating, but sadly not surprising, to see all of the ways she has been mistreated and misdiagnosed by the myriad medical professionals she has seen throughout her life. For anyone who struggles with constant, undiagnosed pain, for anyone who doesn't understand what it means to be a woman in pain in this world, for anyone who knows someone with a chronic illness but doesn't quite know what it means--this book is for you.
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  • Madeleine
    January 1, 1970
    I do not have cohesive thoughts about this book. I cannot, and I may never. I can't decide if I want to give it 4 or 5 stars, or whether I loved it or hated it or thought it was good or bad writing or why I consistently want to treat life in binary or why any of this matters in the end.I know two things:1. I could not read this for more than small stretches at a time. Once, it sent me into a hot and prickly panic attack, after which I fell asleep and dreamt half-concocted nightmares of relapse.2 I do not have cohesive thoughts about this book. I cannot, and I may never. I can't decide if I want to give it 4 or 5 stars, or whether I loved it or hated it or thought it was good or bad writing or why I consistently want to treat life in binary or why any of this matters in the end.I know two things:1. I could not read this for more than small stretches at a time. Once, it sent me into a hot and prickly panic attack, after which I fell asleep and dreamt half-concocted nightmares of relapse.2. I have read my fair share of illness stories and Lyme memoirs (most likely ghostwritten and never great), but this book...this book does what the others couldn't.The rest is in half-finished phrases and incomplete musings:1. I want need to read it again.2. Even without following Porochista on social media I would know it was written in the thrall of sickness. The story isn't so much a story as it is the verbal translation of symptoms. It embodies all the ways illness punts us around; the jumpiness of the text, the simultaneous blunt honesty and narration shrouded in mystery, the false starts and sudden musings and mixed tenses—all of these are hallmarks of illness. 3. There is nothing linear about sickness. There is nothing cohesive about illness narrative. And for some of us, there is no end, either.4. The intersections of race and disability, of trauma and healing, of identity and displacement and movement, and of being considered an hysterical woman for years and years and years.5. Misdiagnoses and the myths after the real diagnosis.6. People who stay, people who leave.7. Marking the passage of time and experiences with illness by other means, other people.8. Of feeling lost in your body. Of feeling dislocated because of your body.9. Addiction.10. Doctors who have no business practicing medicine. The ones that do not help and search below the surface or worse, the ones who preach miracles instead of hope. The doctors I hate, the doctors I have given money to. The doctors who have casually shrugged and shaken their heads. The doctors who believe medicine is best practiced conveyor-belt style.11. The radical hope and resilience inherent in staying alive.It would be manipulative of me to tell my loved ones, "If you love me, read this book," so I won't exactly. But 258 pages is a small price to pay for empathy, something I fear we are bereft of. At the very least, pick up this book to investigate yourself and the confines of this world. It is not perfect. Do not expect it to be. We ourselves are not.Thank you, Porochista, for putting into words what I could not.
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  • Tracy
    January 1, 1970
    Interesting and thoughtful, but the random arrangement of essays didn't work for me. I needed a bit more linear structure--I kept trying to figure out where we were in time and if she knew yet that she had Lyme disease. But I find medical memoirs fascinating, and she did an astonishing job at how she was treated by health practitioners who didn't know what to do with her or even didn't believe that Lyme disease exists.
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  • Kerry
    January 1, 1970
    A hot mess of cluster-b melodrama and pseudoscientific word salad.(Read Lying: a metaphorical memoir by Lauren Slater instead.)
  • Marika
    January 1, 1970
    Iranian American novelist Khakpour describes in excruciating detail her fight against an unknown disease, which turned out to be late stage Lyme disease. Much of her battle was in getting the correct diagnoses and disregarding the Dr's who told her that her pain was psychological. For readers who enjoyed "Everything Happens for a Reason: And Other Lies I've Loved" by Kate Bowler.I read an advance copy and was not compensated.
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  • Bekki
    January 1, 1970
    all the people who had petty, bad reviews are crazy. this is a well-written and really interesting memoir about being chronically ill and navigating the unknowns of that illness. furthermore, it's hard to write about chronic illness, especially when you're actually suffering from it, so to do all that while being sick is impressive. i thought it was stylistically written well and different segments that didn't seem to be related were strung together nicely in the end. you don't need to like some all the people who had petty, bad reviews are crazy. this is a well-written and really interesting memoir about being chronically ill and navigating the unknowns of that illness. furthermore, it's hard to write about chronic illness, especially when you're actually suffering from it, so to do all that while being sick is impressive. i thought it was stylistically written well and different segments that didn't seem to be related were strung together nicely in the end. you don't need to like someone personally to enjoy their memoir--that seemed to be the issue for most people. the most interesting parts were tidbits of statistics on women with chronic illness and how PTSD affects this (surprise surprise, i feel like this is a huge breakthrough that has more and more potency as time goes on) and in general, how auto immune diseases tend to affect women more because of PTSD and their every day stressors.
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  • Grace Sutherlin
    January 1, 1970
    As a woman who suffers from four chronic illnesses I was most interested in reading this book as I wanted to see how another woman approached coping with chronic illness and the revolving door of medical specialists involved in the diagnosis and treatment of chronic illness. I have my own chronic illness manuscript and when I saw that a writer actually landed a literary agent for this kind of book and an acquiring publisher, I was simply astounded. (By the way, as far as I know I do not have Lym As a woman who suffers from four chronic illnesses I was most interested in reading this book as I wanted to see how another woman approached coping with chronic illness and the revolving door of medical specialists involved in the diagnosis and treatment of chronic illness. I have my own chronic illness manuscript and when I saw that a writer actually landed a literary agent for this kind of book and an acquiring publisher, I was simply astounded. (By the way, as far as I know I do not have Lyme disease). What did I take away from this memoir about the endless search for a diagnosis and form of treatment for chronic illness, specifically Lyme disease?Initially, the summary of the story revolves around a woman who was living in Iran and her parents and sibling left during the Iranian Revolution. The family moves and eventually resides in California either in or near Los Angeles. To me, it appeared her childhood was spent reading and shutting out the craziness of Los Angeles. She moves on to attend Sarah Lawrence college and seemingly derails via drugs, alcohol, and parties. Let's put it this way, when you wind up in the hospital and the dean of students comes to visit you to remind you that you are an adult, it's time to wake up and get your act together. The story then spirals from there to one relationship after another, hospital visits, a revolving door of doctors, car accidents, visiting professorships, and symptom after symptom that makes me aware that some ailment has her in its grip. Basically, it is an endless search for a diagnosis, coping with chronic illness, and finally accepting the diagnosis.Here's what I know about most chronic illness: there does not appear to be a cure. My chronic illnesses have always been staggered with quiet phases and then major flares of inflammation and crisis. I was actually told that this would be a way of life for me by many of my diagnosing medical specialists. And yes, this type of life event is abruptly difficult to handle if you have no insurance or in my case, you have a health insurance agent actually say, "You are so uninsurable". Fortunately, I learned that if you did not have a diagnosis of post traumatic stress disorder before being diagnosed with a chronic illness, you will definitely experience it when you are diagnosed with a chronic illness, attempt to cope with it, seek treatment for it, and also attempt to deal with a medical system that often allows patients to fall through the cracks. My astonishment with this author's story of chronic illness was the apparent neediness of the wrong types of partners. And though the story is outlined via various settings, I found myself following her illness via who she was dating at the time. I kept wondering if she was looking for the nurturing and assistance she apparently never received as a child from her parents or maybe also the need she had for a dedicated, proficient medical professional who could assist with a definitive medical diagnosis and treatment plan. As the author kept moving to various new locations I kept thinking, are you keeping your test results? Are you making sure you are seeing the correct medical specialist? Are you researching doctors and their credentials or just taking the word of someone you barely know about how beneficial this doctor or that doctor is? There was quite a bit of repetition in this book which I expected given the roller coaster ride that is Lyme disease. I was offended by some of the authors references to various communities and people from other parts of the United States, but in a memoir being authentic is encouraged and she definitely gave the reader that side of the story. After I finished the book, I found myself thinking what on earth would this author do if she had more than one chronic illness and not just Lyme disease? On a strictly literary note, I reached out to this author via several forms of social media and received nada which is fine, but wouldn't you as a writer of a story like this want to connect with a reader who has walked a similar diversionary path in terms of her health? Honestly, I was left feeling indifferent about this book and I'm not sure I would recommend it to my peers who are also struggling with potentially having Lyme disease.
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  • Amy M
    January 1, 1970
    while kind of interesting, it was self-indulgant and too focused on how 'odd' the author is. Its not really a story about Lyme, or even being sick really. I didn't feel the author showed how she was odd, she just kept saying it. I got pretty bored reading how weird she felt, but how normal she seemed.
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  • ReemK10 (Paper Pills)
    January 1, 1970
    I found Porochista's memoir very hard to put down! I follow her on Twitter, and feel like I've sat with her during her lyme treatments, traveled with her to her writing workshops, waited with her at the airport as she made her way with her disability.... I felt very vested in her health, her writing career, her friendships etc. Porochista is precious! She is kind, caring and has the ability to attract people with her personality. This is not a woman whom you feel sorry for. This is a woman whom I found Porochista's memoir very hard to put down! I follow her on Twitter, and feel like I've sat with her during her lyme treatments, traveled with her to her writing workshops, waited with her at the airport as she made her way with her disability.... I felt very vested in her health, her writing career, her friendships etc. Porochista is precious! She is kind, caring and has the ability to attract people with her personality. This is not a woman whom you feel sorry for. This is a woman whom you cheer along because you know that she is a fighter! I really hope that Sick becomes a number one bestseller! I also look forward to the sequel.
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  • Kate
    January 1, 1970
    "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 MetaphorsFirst 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 ge "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 MetaphorsFirst 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 https://www.instagram.com/book.along/
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  • Lindsey
    January 1, 1970
    Chronic illness is one thing, chronic illness without the "safety" of having a diagnosis is another. It's a distinction I would not have considered before reading Khakpour's memoir. Her life feels like a mystery, attempting to discover the culprit making her sick - it feels frustrating and exhausting reading her account - I can't imagine being in her shoes. The writing, teaching, and fellowships she's managed throughout the years are amazing given her condition. Definitely an interesting read.
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  • Charlott
    January 1, 1970
    Porochista Khakpour felt a little (or even a lot) off in her body for most of her life - there were aching, dizzy spells, and all kinds of diffuse symptoms. Her memoir "Sick" chronicles her life as being a sick person without a diagnosis. Only quite late doctors finally could put their finger onto the problem: Khakpour has got late stage Lyme disease. The book is not about a straightforward quest to health or at least an answer to the question of what is wrong. Instead, the book meanders, jumps Porochista Khakpour felt a little (or even a lot) off in her body for most of her life - there were aching, dizzy spells, and all kinds of diffuse symptoms. Her memoir "Sick" chronicles her life as being a sick person without a diagnosis. Only quite late doctors finally could put their finger onto the problem: Khakpour has got late stage Lyme disease. The book is not about a straightforward quest to health or at least an answer to the question of what is wrong. Instead, the book meanders, jumps back and forward. The chapters are roughly sorted with regards to locations as Khakpour constantly moves between Los Angeles and New York, but also Santa Fe, Leipzig (Germany), and other places, after first being displaced as a child fleeing with her family from Iran to the USA. She states: “I sometimes wonder if I would have been less sick if I had a home.” The structure makes sense since her trials to find a home, a place she feels comfortable in, is also linked to her alienation from her body. The nonlinear narrative is equally connected to some questions which might never be answered: When did she contract Lyme? And where?Khakpour's narrative is not one to easily grapple with. She writes about drug addiction (and the mix of recreational and party drugs and drugs she (first) took to fight some symptoms), difficult relationships, and a lot of uncertainty. She acknowledges blank spaces and the decisions to leave certain aspects out of the book. This is not "the whole story", as no memoir ever is "the whole story", but in contrast to many other books, she makes this very clear. Khakpour also writes: "I've never been good at being sick. [...] I am not a poster child for wellness." This admission, which comes late in the book but is the sentiment throughout, makes this book so interesting: Khakpour did not try to appeal to an able-bodied audience who might prefer a simple story of suffering (by a person who earned sympathy through good behaviour) with clear reasoning and plain answers. She denies this impulse and instead goes for the complexities of life. I am very glad I read this book though at times I lost interest in the particularities - not due to the content or the general structure but to the writing style which did not always work for me.
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  • alex
    January 1, 1970
    "I liked that there was danger involved with me, that I was someone people could lose, that I could flirt with some other realm, that I was intensely fragile yet ultimately indestructible. I felt like a crystal ballerina, a porcelain swan, but most of all like a ghost." this is a very particular kind of book. you're either going to understand it or you won't. that is no fault of your own, it is based on experience.this is the rawest, realest illness memoir i have read to date -- and anyone who "I liked that there was danger involved with me, that I was someone people could lose, that I could flirt with some other realm, that I was intensely fragile yet ultimately indestructible. I felt like a crystal ballerina, a porcelain swan, but most of all like a ghost." this is a very particular kind of book. you're either going to understand it or you won't. that is no fault of your own, it is based on experience.this is the rawest, realest illness memoir i have read to date -- and anyone who really knows me knows that illness memoirs are really important to me. i highly anticipated this book throughout 2018, but it was very, very different than what i expected.this book was exhausting, frustrating, triggering, and difficult to read, and that's okay.porochista is unapologetically sick. what i mean by that is that at times she is frustrating, burdensome, hurtful to her friends. i can't say she outright acknowledges that, but it comes across in the book. as is said in this article,, which btw is required reading in my opinion, porochista is subverting the typical narrative of an illness memoir -- specifically, the way women experience illness. she is unapologetically suffering. "Khakpour’s decision to avoid explicit claims to scientific or literary authority is a bold move, one that draws attention to the ways in which women are expected to tell stories of sickness—and the ways in which their storytelling can affect their chances of accurate diagnosis and effective treatment."it appears that she had originally pitched and written this book as a more typical illness memoir, relying on the illness and disability theory Greats that we sick people hold dearly in our hearts. she mentions them in the acknowledgments section, writing that they are "forever the gods of this book to [her]: Audre Lorde, Susan Sontag, Lucy Grealy, Virginia Woolf, and Anatole Broyard."in addition to discussing her illness so frankly, she talks about benzo addiction, other drug use like cigarettes, coke, e (sometimes unknowingly laced with heroin), and her experience with mental illness -- not the vague illness-related depression that we swim in but true, terrifying psychotic breaks, like screaming at her mother as she uses a harmful chemical cleaner -- relationships, including with men who hurt her, friendships, and mistakes she has made in her life. these are all things that put the "reputation" of her story and her "reputation" as a "good sick person" in jeopardy, and she writes them in anyway.another quote from the article, which quotes from the book: ...[S]he confesses to a long-standing tendency to romanticize both physical and mental illness: she remembers passing out at thirteen as “the first time I got to feel like a woman,” associating “ailment” and endangerment with femininity, and feeling “disappointed” when the family physician told her fainting was normal for her age; even when she tries to resist being dumped in the psychiatric ward, she notes that “a part of me had always dreamed of its unknown underworld.” In other words, she seems ever ready to consider the possibility that her sickness is either innate or something she has “brought onto myself.” “I am a sick girl,” she writes. “I know sickness. I live with it. In some ways, I keep myself sick.” (emphasis my own.)confessing to a tendency to romanticize illness is important because sometimes it is a coping mechanism. i know i have used it as such in the past. she published this knowing that she was going to get criticism for it. she didn't care. she had to put it out into the world."Obviously, Doctor," she said, "you've never been a thirteen-year-old girl.”― Jeffrey Eugenides, The Virgin Suicidesbeing a woman who becomes sick at a young, formative age like 13 or 14 is an extremely terrifying, delicate, exclusionary and solitary experience which i personally believe no one except those who have experienced it can understand. i am glad that porochista put it on paper. i have already seen people on twitter, the hell site, using quotes from the article like those about fainting as a "gotcha" for porochista's supposed malingering. that is a fucked up, bullshit thing to do, especially to a woman.i am very very thankful to porochista khakpour for writing and putting this book into the world. it certainly wasn't easy. yes, i took issue with some things, and yes, it was painful to read, but it was porochista's honest experience. would i have rather she left in the literary references and embellishments? only because it would have made it a more comforting, comfortable read, and that is not useful, and that is not the point.
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  • kelly
    January 1, 1970
    I have mixed feelings about this book. Porochista Khakpour gives us a very brave and honest memoir about her struggles with late-stage Lyme disease. The CDC estimates that 30,000 cases occur every year, though the actual number is probably much higher. It is caused by bacteria spread through tick bites, and getting a diagnosis can a nightmare due to the generality of its symptoms (fever, rash, headache, shortness of breath). People who have been infected with Lyme disease can also be asymptomati I have mixed feelings about this book. Porochista Khakpour gives us a very brave and honest memoir about her struggles with late-stage Lyme disease. The CDC estimates that 30,000 cases occur every year, though the actual number is probably much higher. It is caused by bacteria spread through tick bites, and getting a diagnosis can a nightmare due to the generality of its symptoms (fever, rash, headache, shortness of breath). People who have been infected with Lyme disease can also be asymptomatic as well. Tests to determine infection can be very expensive (usually not covered under insurance) and are not definitive. If the disease is caught early enough, antibiotics are given to kill the bacteria. For people in late-stage Lyme disease, however, there is no cure. They suffer the same painful symptoms over and over again, living their lives so as not to cause a recurrence.Khakpour does not know when she was infected with Lyme disease and she speculates on this throughout the memoir. She recalls many times in her life when she has been in pain--emotional, physical, mental. She details interactions with doctors, who dismiss her symptoms and call it depression, a mental problem. She also talks a lot about bad boyfriends and unsupportive family members, both of which exacerbate her health issues.At times the writing was beautiful, but at other times it felt rather guarded and elusive. Throughout the reading of this book I never felt as if the author was telling us everything, choosing instead to pick and choose what to write about. This sense was reflected in the timeline, which is presented not as dates but as locations where she's lived, with chapters are entitled "New York," "Pennsylvania," and so on. Unusual, but ok.Three stars. Definitely recommend though.
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  • Heather
    January 1, 1970
    Khakpour writes beautifully about her years of sickness, trying to find a reason for her never ending illness, trying to find doctors who will help her. Her despair at not getting any clear answers, being told it's all in her head, and at one point even sent to a psych ward, are palpable and I could feel it as I read her words. It was hard, though, to get a grasp on who she is as a person. The non-linear essays made it difficult at times to keep track of where exactly we were at in her life. Her Khakpour writes beautifully about her years of sickness, trying to find a reason for her never ending illness, trying to find doctors who will help her. Her despair at not getting any clear answers, being told it's all in her head, and at one point even sent to a psych ward, are palpable and I could feel it as I read her words. It was hard, though, to get a grasp on who she is as a person. The non-linear essays made it difficult at times to keep track of where exactly we were at in her life. Her really bad life choices make it difficult to root for her at times, all the smoking and drugs and bad boyfriends. Some parts of the narrative you can tell she's purposefully leaving things out, and you have to wonder what she's really like, and is it the illness that makes her that way or is it just her personality? Or maybe at this point it would be impossible to extricate one from the other. It is still a very moving memoir, a look into the reality of a misunderstood disease like Lyme. Hopefully more people and doctors can recognize and get better treatment for people who suffer from it.
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  • Maura Muller
    January 1, 1970
    I was really looking forward to this book. My husband battled late stage Lyme for 5 years and I had it for one and a half agonizing years. Most everyone I know (I live in a rural, Upstate, NY) has had it.I think it is crucial to share the difficulties and problems in getting treated for such a mysterious disease - especially for women. I was told it was "only menopause". Women's health issues have been dismissed for ages, so I really wanted to love this book. I hated it. It was a jumbled, repeti I was really looking forward to this book. My husband battled late stage Lyme for 5 years and I had it for one and a half agonizing years. Most everyone I know (I live in a rural, Upstate, NY) has had it.I think it is crucial to share the difficulties and problems in getting treated for such a mysterious disease - especially for women. I was told it was "only menopause". Women's health issues have been dismissed for ages, so I really wanted to love this book. I hated it. It was a jumbled, repetitive mess in need of a skilled editor. A complete waste of the paper it was printed on.
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  • Rebecca
    January 1, 1970
    Thank you to the publisher (via Edelweiss) for a free advance e-galley in exchange for an honest review.This was a well-done memoir of one person's experience with chronic illness. Porochista Khakpour's experience with the medical profession and the long journey to diagnosis and correct treatment. Khakpour is honest in this book about her experiences with drugs, abusive relationships, mental health and other struggles that she had alongside her chronic illness. It's frightening to think how comm Thank you to the publisher (via Edelweiss) for a free advance e-galley in exchange for an honest review.This was a well-done memoir of one person's experience with chronic illness. Porochista Khakpour's experience with the medical profession and the long journey to diagnosis and correct treatment. Khakpour is honest in this book about her experiences with drugs, abusive relationships, mental health and other struggles that she had alongside her chronic illness. It's frightening to think how common it is for women in particular to struggle to get a diagnosis and treatment, and Khakpour's story shows the impact that this has on all aspects of a person's well being.
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  • Julianne
    January 1, 1970
    3.5 stars.It very much feels like a diary, the intimacy of which I can appreciate, but I also felt impatient with much of the book. There's lots of telling instead of showing, especially about anything not related to her illness, and the writing is not particularly literary. (Woe to anyone who has to follow up Edith Wharton, ugh.) And especially because I knew what Khakpour's ultimate diagnosis was, the repeated mentions of just how far the ultimate diagnosis was from her mind through the years 3.5 stars.It very much feels like a diary, the intimacy of which I can appreciate, but I also felt impatient with much of the book. There's lots of telling instead of showing, especially about anything not related to her illness, and the writing is not particularly literary. (Woe to anyone who has to follow up Edith Wharton, ugh.) And especially because I knew what Khakpour's ultimate diagnosis was, the repeated mentions of just how far the ultimate diagnosis was from her mind through the years felt repetitive.That said--she does lay out just how maddening it is to inhabit a body which befuddles you, betrays you. She is very honest about her addictions, and honestly, by the last page I was thinking: it'd be miraculous to live thru what she'd lived thru and NOT be an addict. Also, this book reminded me that I want to read Maya Dusenbery's new book.
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  • Leah Angstman
    January 1, 1970
    My review of this book is coming to a major outlet. Will update at that time.
  • E.P.
    January 1, 1970
    Porochista Khakpour has always been sick. But why?Her story will be familiar to anyone who knows the standard Lyme narrative: years of mysterious ailments, frequent diagnoses of mental health problems, the treatment of which only made her problems worse, the growing worry that she was either crazy or dying or both, the elation at having a diagnosis of Lyme disease, the struggle to actually find a treatment that would work, the relapses, and so on and so forth.There are a couple of things that ma Porochista Khakpour has always been sick. But why?Her story will be familiar to anyone who knows the standard Lyme narrative: years of mysterious ailments, frequent diagnoses of mental health problems, the treatment of which only made her problems worse, the growing worry that she was either crazy or dying or both, the elation at having a diagnosis of Lyme disease, the struggle to actually find a treatment that would work, the relapses, and so on and so forth.There are a couple of things that make "Sick" stand out from the general run of Lyme memoirs, although I'm of the opinion that one can hardly read too many Lyme memoirs, perhaps because I have a superstitious belief that if I just pore over the texts carefully and intentionally enough, I myself will be magically healed. But anyway. "Sick" stands out first of all because Khakpour was a writer before she was a Lyme patient, and she brings a writer's sensibility to the text, which is organized in a "writerly" way. For readers looking for a straightforward narrative of A then B then C, this may be a trifle disconcerting, and even for some "ordinary" literary readers the jumbled, surreal nature of sections of the book has been a bit of a shock. I guess you have to have Lyme disease or some other reality-altering condition for the perceptions that Khakpour describes to seem normal.Second of all, Khakpour combines her Lyme experience with her experience as an Iranian immigrant to the US, as an academic and a writer, and a person with a on-again-off-again drug problem and recurring relationship issues. All of these things meld together to create an experience that is both alienating from the average American experience, and quintessentially American: what could be more American than the Lyme-disease-ridden immigrant woman who constantly fears racism while frequently passing as a member of the white majority, who spends years (and loads of money) getting ineffectual treatment for mental health and drug problems while her worst medical problems are deliberately denied, and who is a glorious melting pot of self-aware intersectional privilege and discrimination?Khakpour also delves deeply into the world of mental illness and addiction, where she and her doctors all thought for years that she solely belonged. She describes deliberately addicting herself to cigarettes her first week at college, all the drug-laced parties and events she participated in as a student, and then, particularly disturbingly, her descent into prescription drug addiction, fueled by medical professionals who kept pushing antidepressants, anti-anxiety drugs, and sleeping pills on her as the solution to her problems. She gets clean, gets diagnosed with Lyme disease...and then slides back down the rabbit hole during a relapse in which no one considers that her insomnia, panic attacks, and weird hearing and vision problems might be the result of a spirochete infection *she had already been diagnosed with*, not...whatever else they thought might be causing it."Sick" highlights many of the problems Lyme patients face in getting diagnosis and treatment. Aside from the lack of training at medical school and the inadequacy of the current tests, Lyme patients are often their own worst enemies, even if unintentionally. As the spirochetes attack your body and especially your brain, you can develop horrendous insomnia, anxiety, and panic attacks (after all, a fearsome predator *is* eating you alive, and your body on some level knows this), confused perceptions, a sense of alienation from your body (which has, after all, been hijacked by the above-mentioned fearsome predator), addictions to the drugs used to combat the pain and fear that's debilitating you, and so on and so forth. Meanwhile, you "look fine," and most testing shows nothing alarming. So it looks to the outside world like you're crazy, and maybe addicted to drugs, and you you may sort of be so.Khakpour also admits that she's a "bad sick girl," as she puts it. She's never embraced the strict diets many Lyme doctors endorse, and even still sneaks a smoke from time to time. So is her sickness the result of a life full of trauma and difficulty; her bohemian, artistic personality; her experimentations with drugs of all stripes; or her Lyme disease, which she's never quite sure when and where she picked up (she provides multiple possible infection moments, and maybe she *was* infected multiple times)? Or all of the above?If it makes anything clear, "Sick" suggests that it's D, all of the above, but that a huge problem is Lyme disease and the way it's treated. The sections on Khakpour's dealings with the depression-industrial complex, as I call it, are terrifying, as the doctors she goes to for help do nothing but re-addict her to the drugs she'd already had to get clean from once, and which she actively doesn't want to take again, but does anyway because it's the only salvation that's offered and she doesn't want to be labeled any more "noncompliant" a patient than she already has been."Sick" ends on an only partially hopeful note, as Khakpour relapses while writing the book, something that she chronicles as part of the story. This is not so much a story of triumph as it is a story of tenacity in the face of obstacle after obstacle, some of them self-created. Still, it's a gripping story of one woman's battle with one of the most fearsome and misunderstood medical monsters of our time.
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  • Ella
    January 1, 1970
    I have mixed feelings about this book. It was engrossing, but also didn't leave a strong impression. For a memoir about illness, it was surprisingly propulsive, and only occasionally wallowed in 'woe is me' territory. But the timeline was a little confusing, it jumped around a lot, which I couldn't always follow. The writing was clean and to the point. The pace was quick and never stayed in one place too long. It was never boring, and was populated with interesting, tragic characters. I wonder a I have mixed feelings about this book. It was engrossing, but also didn't leave a strong impression. For a memoir about illness, it was surprisingly propulsive, and only occasionally wallowed in 'woe is me' territory. But the timeline was a little confusing, it jumped around a lot, which I couldn't always follow. The writing was clean and to the point. The pace was quick and never stayed in one place too long. It was never boring, and was populated with interesting, tragic characters. I wonder about some of the things alluded to, but never explicitly stated, like the troubled relationship she had with her parents, and whether her childhood home was violent. She mentions that since her parents are still alive, she didn't feel like she could say everything, but the allusions let the mind run wild, and I wonder if it was as bad as I imagine?She names (or gives pseudonyms) to all her boyfriends, but then doesn't do that with the very famous writer she dated casually. I wonder if he was Junot Diaz? That's the first person I thought of, but maybe that's only because he's been in the news recently and the short description of him seemed to fit. It seemed like his presence in her life was brief and didn't leave much of an impression, and I wonder why she included him at all, unless to make us all wonder. If she didn't want us to guess, she could have just named him Bob or something. I was off-put by the author's expectation that her boyfriends would take care of her, especially the one who had watched his wife die. Care-taking is incredibly difficult, and she didn't seem to consider that. There wasn't an acknowledgement of the feelings of the people around her. Her view was very myopic, which could be a symptom of her illness. When you are in incredible pain and barely able to function, how can you think about other people's trials and tribulations? How can you feel empathy and compassion for your caretakers? Not delving into that was a lost opportunity. It was a blind-spot that needed a light shined on it.I was frustrated and furious on her behalf by how she was treated by medical providers, and how many pseudo-medical providers swindled her. She details the racism and sexism that permeated her doctor and hospital stays. She shines a bright light on how she, and anyone like her, can be dismissed and denied care because of who they are. These scenes were some of the most powerful and left the biggest impression on me.
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  • Samantha
    January 1, 1970
    I'm really fascinated with the mystery that courses through every part of this book. Lyme disease being the big one, as an illness that is hard to diagnose and treat. This is not an illness memoir with a neatly packaged ending. Porochista Khakpour's journey to a diagnosis is a long one, and even when she finally gets the Lyme results, there's no concensus from doctors on when she got it. There's no specific formula, through medicine or lifestyle, that ensures good health periods - it's seemingly I'm really fascinated with the mystery that courses through every part of this book. Lyme disease being the big one, as an illness that is hard to diagnose and treat. This is not an illness memoir with a neatly packaged ending. Porochista Khakpour's journey to a diagnosis is a long one, and even when she finally gets the Lyme results, there's no concensus from doctors on when she got it. There's no specific formula, through medicine or lifestyle, that ensures good health periods - it's seemingly hard to tell when Khakpour will go through another rough spell. She's plagued by anxiety and depression, and it's hard to know if they're overtly a part of Lyme or a sort of side effect that comes from uneven periods of health and sickness and cycling through doctors who either don't know what to do with you or don't always take you seriously. The uncertainty her whole life takes on is painful to read, and anyone could easily understand the hopelessness Lyme sufferers may feel.And then because of her illness (or maybe not?), mystery threads through other parts of the memoir. Geography becomes a player in Khakpour's life, as she comes to see that living in some places ground her in good health, while others send her spiraling down. Her relationships don't read entirely fleshed out - the men she's romantically involved with are somewhat two-dimensional on the page, and most of them float in and out of her life, initially promising to stick by her side through her illness, but flaking out in the end, unable to handle their roles as caretakers. It's tough and messy, and Khakpour isn't always a hundred percent certain of what's going on. But through the unknowns, her strength manages to show through.Khakpour is a smart writer, and I look forward to more from her, whether about her illness or not.
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  • Holly
    January 1, 1970
    I expected to love this--it would be more accurate to say that I fully intended to love this--and then I didn't. One reason is that there are relatively few fully developed scenes incorporating the elements we expect from well executed narrative: realistic dialogue, character development, attention to detail, blah blah blah. Instead, we get SO MUCH SUMMARY. PAGES AND PAGES OF SUMMARY--of recreational drugs taken; of love affairs with men (even though there's a throw-away comment at the end about I expected to love this--it would be more accurate to say that I fully intended to love this--and then I didn't. One reason is that there are relatively few fully developed scenes incorporating the elements we expect from well executed narrative: realistic dialogue, character development, attention to detail, blah blah blah. Instead, we get SO MUCH SUMMARY. PAGES AND PAGES OF SUMMARY--of recreational drugs taken; of love affairs with men (even though there's a throw-away comment at the end about how Khakpour has identified as queer since the 1990s but enjoys the straight privilege she gets from dating men too much to make a big deal of her queerness); of terrifying symptoms; of interactions with snarky, dismissive doctors.Khakpour notes in the epilogue that "at one point there was a lot of cultural criticism," but she stripped all that out because she decided that "to tell this story honestly, I could not lean on anyone but myself." I wish she hadn't made that decision. I wanted wisdom from this story, and I didn't get it. I have been researching and following the way people write about illness for over 25 years now (I even have a goodreads shelf for "embodiment, illness, medicine"), and I wanted a book that drew on the insights we have accumulated because of the work of precisely the women writers and thinkers Khakpour mentioned in her acknowledgments as the "gods of this book," one of whom is Lucy Grealy.I had a subscription to Harper's in 1993 and was electrified when, in my backyard in rural Arizona, I read "Mirrorings" in it, the essay by Grealy that she subsequently developed into Autobiography of a Face, a book I've read at least half a dozen times. It risks more and it accomplishes more, even though Grealy had fewer resources to draw on as she thought about her own illness. But then, Grealy had a clear dignosis--cancer, one of the illnesses our society fully recognizes, one of the illnesses with lots of funding for research and treatment. So I don't know if my comparison of the two books is really fair.I don't know. I will probably read this again and see if maybe I didn't give Khakpour enough credit.
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