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.
Porochista Khakpour is the author of the memoir Sick (Harper Perennial, June 2018)—a “Most Anticipated Book of 2018,” according to HuffPost, Bustle, Bitch, Nylon, Volume1 Brooklyn, The Rumpus, and more. She also authored the novels The Last Illusion (Bloomsbury, 2014)—a 2014 "Best Book of the Year" according to NPR, Kirkus, Buzzfeed, Popmatters, Electric Literature, and more — and Sons and Other Flammable Objects (Grove, 2007)—the 2007 California Book Award winner in “First Fiction,” a Chicago Tribune’s “Fall’s Best,” and a New York Times “Editor’s Choice.” Her writing has appeared in The New York Times, The Los Angeles Times, The Wall Street Journal, Al Jazeera America, Bookforum, Slate, Salon, Spin, CNN, The Daily Beast, Elle, and many other publications around the world. She’s had fellowships from the National Endowment for the Arts, the University of Leipzig (Picador Guest Professorship), Yaddo, Ucross, and Northwestern University’s Academy for Alternative Journalism, among others. She has taught creative writing and literature at Columbia University, Johns Hopkins University, Bard College, Sarah Lawrence College, Wesleyan University, Bucknell University, and many other schools across the country. Currently, she is guest faculty at VCFA and Stonecoast's MFA programs as well as Contributing Editor at The Evergreen Review and The Offing. Born in Tehran and raised in the Los Angeles area, she lives in New York City’s Harlem.
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.
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.
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.
I'm only giving this 1 star because there isn't the option of giving it zero stars.
This book is....ugh. It promotes so many dangerous ideas that are gaining hold within the chronic illness/disability community and the fact that it's been on so many "must read" lists gives it an air of legitimacy. The kind of quackery the author is selling is so insidious and harmful (and literally kills chronically ill and disabled people), and reading her ideas about how "glamorous" she thinks certain aspects of being ill are, or how much she loves having people take care of her, or how she purposely makes herself more ill are GIANT red flags. The biggest red flag, however, is the fact that Chronic Lyme isn't real (learn more from the CDC here). She is surely legitimately ill- she is an addict, and addiction is a real disease. She probably also had Lyme disease, and may have post-treatment Lyme disease complications. She mentions having a recurring eating disorder. She is diagnosed with scleroderma (an autoimmune connective tissue disorder) but refuses to further look into this because she doesn't want to be seen as a "lobster lady" and "feels" like Lyme fits her soul better (?????). But you don't cure these things with "rare Canadian antibiotics", bee pollen, bee sting therapy, Celtic sea salt, etc. That's just.....not how this works. That's not how any of this works.
Porochista's prose is full of tired cliches, and her narcissism shines through most strongly when she finds her new Best Friend Forever or Partner For Life only to discard them within a few pages after they are no longer useful. Please don't recommend this book to people that you know that are chronically ill or disabled- it's an insulting portrayal of life with disability and chronic illness. However, if you want to give it to people to explain the dangers of woo, quackery, and malingering in the chronic illness community then you've got the perfect example, tidily packaged here in one book.
It’s hard to summarize Sick as one thing. As an exercise in beautiful writing, it is a five star book. As a memoir, it is profound and selective, escaping all those traps of a person telling her own story (none of the usual weight of narratives that mean much to the teller and little to the listener). But for better or worse, Sick carries another burden: it is a book about illness, and in particular an illness that is often over-diagnosed and misunderstood. The author believes she has “chronic Lyme” or “late stage Lyme,” diagnoses which are highly controversial to the medical community, and she acknowledges as much. Throughout her harrowing adventure we join her at emergency rooms and doctors offices where they often tell her the same things: that at least some of her illness is psychological, that she does have a skin condition that would explain many of her symptoms, and that it would be wise for her to get proper care through a mental health facility. For the most part, this advice is waved off as Not Quite Right, not fulfilling some basic intuition never quite articulated. One gets the impression that the writer equates “psychological illness” with “crazy,” something she is clearly not. At some turns this advice is heeded, albeit briefly, but usually as a form of payment to earn the right to what comes next: infinitely more time and money spent in the alternative health field, receiving unproven and even harmful treatments like injectable ozone therapy. Toward the end, as she becomes completely enveloped in the alt-med world, she even goes to work for Gary Null, who she passes off as an eccentric but brilliant maverick of medicine. You’d be forgiven for not knowing the name, and the author isn’t going to give you the proper context: that he is an AIDS denialist who thinks HIV doesn’t exist, and who has likely caused untold thousands of deaths with his crackpot theories. My work brings me into close quarters with these same sorts of claims, and without a running mental roladex of these obscure names and treatments, they would have gone completely undetected. She is such a gifted writer, such a lucid voice, it is difficult to believe she is espousing such dangerous and unfounded nonsense. But here we are. As I followed her down the dark tunnel of her story, I found myself losing my grip on her. She becomes your friend in these pages, and as she slips further and more defiantly into the grip of fake medicine, she paints a picture of a brighter future. But all I saw was a friend slipping, going, gone.
This entire review has been hidden because of spoilers.
”the deal with so many chronic illnesses is that most people don’t want to believe you. They will tell you that you look great, that it might be in your head, that it is likely stress, that everything will be okay. None of these are the right thing 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, and no one needs to keep seeing that . . .”
For those who might not be familiar with the condition, Lyme disease is caused by bacteria (Borrelia burgdorferi) that are transmitted to humans by black-legged (aka “deer”) tick bites. If the tick is removed within 24 hours of attaching to the skin, there is a good chance that a person (or animal) won’t be infected with B. burgdorferi, though he could still contract another tick-borne disease. The first sign of Lyme disease is usually a bull’s-eye rash, which appears within 3 to 30 days of the bite. After this, a person often feels feverish and flu-like, with muscle aches and pains. The CDC has been aware of the disease since the 1970s, when it investigated a cluster of cases (in New England) of what seemed to be juvenile rheumatoid arthritis that had been preceded by the distinctive target-like rash. However, the disease’s link to ticks was not known until 1981. Nowadays, infectious disease experts recommend two diagnostic tests be done in combination: the ELISA and the more reliable Western Blot test. Since it takes four to six weeks for the body to generate antibodies to the bacteria, initial blood tests may be negative. If Lyme is suspected, a patient is typically prescribed a 10-21 day course of doxycycline (antibiotic) treatment.
Chronic Lyme disease—that is, disease which appears to persist after treatment has been completed—remains a controversial diagnosis. A decade ago, an article in Future Microbiology noted that there was “growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies.” All that I could find on the topic was that “Experts believe lingering symptoms may be caused by residual damage to tissues and the immune system, and some may not be related to Lyme disease at all”. The CDC and the NIH recommend against using the term “chronic Lyme disease”, acknowledging only that “Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease”. These people are said to suffering from “post-treatment Lyme disease syndrome” or “post Lyme disease syndrome”. According to the CDC, the cause of the syndrome(s) is not known. Porochista Khakpour’s tests meet CDC standards for a diagnosis of Lyme disease. Her ordeal with what she says is “chronic Lyme disease” but which experts might refer to as “late disseminated, neuropsychiatric Lyme” has been harrowing. Because she was unaware she’d been infected, she didn’t receive prompt antibiotic therapy, and the disease progressed. She also has co-infection with other tick-borne bacteria/parasites: ehrlichia, and perhaps babesia and bartonella. It is possible that these have further complicated the picture. Khakpour has been chronically ill for years and had hoped to write an inspiring book with full recovery as the happy ending. That was the book she sold. It was not the book she wrote.
I was initially interested in reading her book because Lyme disease is being diagnosed with increasing frequency in Ontario, where I live. It is even being seen more often in dogs. A few years ago, a relative of mine (who happens to have spent a great deal of time outdoors in tick-prone regions) developed strange neurological symptoms and was found to have sensory deficits in his lower leg. A neuron was knocked out, as he puts it. From time to time, we’ve wondered about his exposure to ticks. He recalls no bull’s-eye rash, but apparently a rash doesn’t appear in 20-30% of cases. The tests, too, aren’t without their problems. It’s possible, then, to miss a diagnosis.
Sick is not strictly an illness memoir. For the first 100 pages, the book is more a general and amorphous personal narrative of young adulthood. It gives the reader a sense of what it’s like to be a refugee who arrives in America from a suspect, “enemy” country, and it explores one person’s sense, since childhood, of not being quite right or comfortable in her own body. Early in life, Khakpour had an unusual response to anesthetic drugs. She also appears to have experienced seizures, seemingly triggered by emotional distress at her parents’ late-night arguments. These left her “feeling like death” the following morning. It is not initially clear whether Khakpour’s long discomfort in or with her body was due to her contracting Lyme on a hike during childhood or because of an earlier, deep, unidentifiable alteration in immune function due to PTSD, as a result of her and her family’s flight from revolutionary Iran (an idea she briefly floats early in the book).
Khakpour was only diagnosed with chronic Lyme disease as an adult. She attended university in New York, and, around that time, also visited a number of Lyme “hot spots” in the state. It’s impossible to know exactly when or where she was infected. The reader also doesn’t know which Lyme camp the doctor who diagnosed and treated her is affiliated with. Infectious disease experts are distressed, for lack of a better word, by the emergence of a group of non-infectious-disease doctors, who use questionable tests to diagnose Lyme and who have even more questionable ideas and sometimes quite harmful treatments to deal with it. Damaging antibiotic therapy that lasts for years is not unheard of, for example.
Although Khakpour’s prose can be engagingly informal, it is sometimes vague, rambling, and imprecise. She occasionally admits to not knowing what she feels or means, and some of her statements are cryptic. About one romantic relationship, for example, she writes, “I felt bored . . . but somehow also chosen by it. But maybe I was chosen by something else.” Like what, exactly? I wish Khakpour had been slightly more inclined to clarify this and other fuzzy observations.
I also had a hard time keeping track of the order in which events had even occurred. Khakpour’s multiple boyfriends, numerous car accidents, endlessly changing living arrangements, and her addiction to benzodiazepines—well, the chronology of it all is pretty confusing. If you’re okay with a patchwork, impressionistic account of an aspiring writer’s life and baffling illness, this book won’t bother you. I tend to like a little more advanced-authorial-processing (before writing) and a bit more shape to the personal narratives I read. However, given that the author was obviously very ill as she wrote, the disorganization, vagueness, and imprecision are perhaps understandable. An editor ought to have taken a more prominent role in the book’s production. Regardless—by the halfway point, I was invested in Khakpour’s story, and found that her account gained momentum.
Khakpour herself is the first to admit that the episodes in her story settle around the various partners she happened to be with at particular points in her illness. It’s hard to keep track of all these men, but rather amazing to think so many would stick around to look after her. She moved frequently, often finding herself back in much-loathed LA, where her parents live, whenever a severe health crisis occurred. Eventually, she would receive a diagnosis and some rather unconventional treatment, which worked for a time.
It is evident that medical science still has much to learn about how to deal with patients who don’t know they’ve been bitten by an infected tick, haven’t received timely antibiotic therapy, and are confronted years after the fact with a diagnosis of late disseminated Lyme disease with rheumatological, neurological, and even psychiatric symptoms. Although the book is not intended as a cautionary tale, I can’t see how anyone can finish it without being more cognizant about what a tick bite can do. Checking yourself after you walk in the woods or long grass is just a very smart idea.
Anyone interested in this book absolutely has to read this review in the New York Review of books by an actual doctor. https://www.nybooks.com/daily/2018/07... While this memoir might be interesting, it's an exercise in delusion, and it might well do more damage than good in the world. As this review puts it, "to insist beyond all plausibility that one’s suffering is related to a tick bite is not feminist; it’s absurd. And to prey on suffering people who crave that certainty, offering them expensive, intensive, and dangerous treatments is worse than absurd; it’s cruel." If you're going to read this book, read it next to the essay "The Devil's Bait" from Leslie Jamison's The Empathy Exams.
Alright this review is so goddamn long it’s like i practically wrote my own memoir…… my apologies. This could have been 1,000 words longer so trust me I’m really sparing everyone. I also gave up on editing grammar bc this is goodreads where i read for fun and i was getting school flashbacks. Anyway enjoy.
It is very difficult to write a memoir that is not insufferable or embarrassing, and sadly this book did not escape those fates. I was excited to read this book as I am also a chronically ill brown girl and I have not read anything reflecting my experience. I do not have lyme disease but that was something that was considered bc my random symptoms manifest similarly. I have gone to endless doctors and specialists and have been given a lot of the meds Khakpour mentions. In the end, I realized I had a lot of similarities to this girl, which is maybe why I found this whole thing sorta repulsive because I would never consider an overview of my life interesting enough to merit a memoir. I did a lot of drugs in high school followed by years of psychiatrist approved drug abuse, I have a ton of sickness issues, I went to fancy liberal arts school, I deal w microagressions & racism provoked by the general political climate of the time. Instead of being happy to see myself reflected, this was basically a cringe compilation.
In some class I was in we had to read a Judith butler paper that had something to do with how when you resist the state you are also acknowledging and reinforcing its power. I don’t want to be pretentious by bringing Judith Butler into this, but as someone who has similar struggles as Khakpour I can’t help but think about how memoirs about drug use and mental illness and eating disorders often do the exact same thing: in their effort to be honest and raise awareness about their harrowing experience, they are still reinforcing the ~~tragic glamour~~. This is a paradox present in any memoir about these topics, but it seemed particularly glaring here.
At the beginning of the intro Kakhpour says something about having to go it alone. As someone with chronic illness who looks fairly healthy, I understand how it feels isolating to be sick all the time and have people never truly understand what is going on. It is even more frustrating when both you and your doctors don’t know what is going on. But I can never pretend like I don’t have a constant stream of people taking care of me. She does talk briefly about support systems in one chapter much later, but I was still so surprised at her intro statement. She says “go alone” when the previous paragraphs included casual examples of multiple friends and family members helping her out and checking in with her. I know that it feels lonely, but I cannot imagine pretending like my partners haven’t borne a huge brunt of my daily care. Later, she seems to identify periods of her life by who was taking care of her at the time, so it’s clear she understands interdependence.
There is the weirdest convalescence of privilege and poor-me attitude here, which is complicated bc privilege is never a black and white thing. Kakhpour feels like an outsider for not having as much money and not being white, which is valid, but she is constantly in spaces that REEEEK of privilege. When I first got to college it was super easy to think of myself in identity politicsy terms rather than thinking about the material reality of my life. This was particularly easy bc everyone at my school was crazy wealthy. While I still face many systemic issues for being brown and in chronic pain, im never going to pretend like having enough money to go to college and graduate , not to mention having college educated parents, health insurance, etc. don’t mean anything. It is easy to forget about these things when you’re in a place where the people around you have exponentially greater levels of wealth and access than you do, but it’s also important to realize what it means to have had a path that lead you into a place where you can even make those connections in higher places. I guess what I’m saying is while the obstacles I face due to my race and illnesses are real and im not invalidating myself or her, but I always have to keep in mind my class placement & what i do have.
While invisible illnesses and mental illnesses are excruciating, and this is her space to deal with what has happened to her, there seems to be such a lack of self-awareness about how her conventional beauty and body make her into a tragically beautiful figure rather than simply something to pity. I know that by being thin and beautiful, even if my conventional attractiveness is actually the result of illness, I am afforded care by not only my loved ones, but I literally get care from random strangers (lifting bags at the airport, enormous fuss about fainting spells, etc.) just because I’m small and cute. Kakhpour mentions how being sicker made her more conventionally beautiful but it comes off as glamorizing and heroin-chic.
She also seems to trip and fall into situations that require so much knowledge and hard work to get into. At one point she quite literally trips and falls into a famous writer who grants her access to an agent. The college chapters portray her time at Sarah Lawrence as a four-year bender, and then several chapters later she casually mentions that a full year was spent at Oxford University! As someone who went to elite liberal arts school, I have seen tons and tons of kids who have impressive resumes but are a fucking mess, but I seriously could not believe how every couple paragraphs she would mention some prestigious thing like “my column at paper mag right out of college” or “my northwestern writers workshop” or “johns Hopkins masters program” or something like that. I know it is not interesting or glamorous to talk about the hard work and applications and advisors and connections you need for this lifestyle, but these things felt like they were just peppered in as an afterthought.
Maybe my negative reaction is just because I find acting like a tragic figure so embarrassing I can’t even do it on my finsta any more, so the thought of actually writing an entire memoir makes me squirm. I know that treating pain as pain is important: it is not helpful for me to be like “well there are people with it way worse than me! So I should never complain!”. Feeling guilty doesn’t help anyone & you should always let yourself feel the things you feel, but I just did not expect this book to feel like a long ass finsta tirade. It’s not quite right to talk about taking up space when there’s not a limit to how many narratives or memoirs that can be published, and the space of your own memoir is definitely….your own space. It isn’t like you can’t write a memoir unless you’ve had a super crazy fucked up life, and privilege doesn’t negate tragedy. So I’m not quite sure where my criticism is there, maybe this memoir just came off as particularly self-indulgent. I thought maybe I being too harsh but then on page 223 she meets a random guy at a gym who was also formerly addicted to pills. She says, “The details all seemed generic to me, an after school special, the usual stuff, but somehow it soothed me to hear anything mirror my own demons”. This proved to me that she really thinks there is something unique and special about her pain. In the end this is her experience and her pain is real, but I did not get anything out of reading it. Altho i haven’t opened google docs since I graduated and this book got me to do that, so maybe I can’t say I didn’t get ANYTHING out of it.
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.
This reads exactly like a Livejournal: the writing is flimsy, self-obsessed, and incredibly shallow. Besides her many illnesses, (and yes that does sound hellish, I certainly have empathy for her there), she goes on and on about this person and that person having a trust fund (coming from someone that attends an Ivy League college no less), the various outfits she wore in 2006, all the drugs she took between the years 1999-2015, etc, etc. Any person she encounters is barely detailed and they weirdly all sound the same (enthusiastic, yet also shallow- hmm I wonder why this is!). She makes Lena Dunham sound like friggin' Mark Twain. I actually quit reading it which I never ever do with memoirs, but if I wanted to be truly immersed in shallow garbage I can always go on social media.
The whole reason I got this book is because I read about it in the New Yorker and it sounded pretty interesting but.. What the f*** were they smoking? Come to think of it, an entire book based on a New Yorker journalist smoking crack and writing pure fluff would be preferable to whatever this is.
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.
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.
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.
Porochista Khakpour spends much of this book talking about relationships. Sometimes it’s her parents or girlfriends. But more often it’s the men in her life. I’ve seen reviewers bemoan this. But here’s what I think.
A single young woman, battling chronic, mostly unexplained, illness has a natural need for caregivers. As much as Khakpour these are romantic relationships, her writing about them centers more often on how the men interacted with her illness. Did the famous writer meet her at the ER? Was the guy who nurtured her nutritionally able to maintain his momentum in the long haul?
Some men like to fix things. And Khakpour is the ultimate fixer-upper girlfriend. Please understand me. I mean that in the nicest way, from one woman living with chronic illness to another. I recognize why telling each relationship story is also exposing the stark reality of chronic illness.
This is a book for everyone, whether you live with chronic illness or not. It could be any of us, especially since Lyme disease is spreading like wildfire around the world.
Porochista Khakpour can’t remember a time when she didn’t feel unwell and like she wanted to escape. “I had no idea what normal was. I never felt good,” she writes in her bracing memoir. Related to this sense of not being at home in her body was the feeling of not having a place where she fit in. Throughout Sick, Khakpour gives excellent descriptions of physical and mental symptoms. Her story is a powerful one of being mired in sickness and not getting the necessary help from medical professionals. Lyme disease has cost her $140,000 so far, and a lack of money and health insurance likely delayed her diagnosis by years. There is, unfortunately, some inherent repetition in a book of this nature. At times it feels like an endless cycle of doctors, appointments, and treatment strategies. However, the overall arc of struggling with one’s body and coming to terms with limitations will resonate widely.
I feel bad for not liking this book. However, like others have said, although this book’s content is important, the execution was poor. At first, I was excited to read this because when I saw the cover, I saw a part of myself. As an Asian woman who copes with a chronic illness, I felt connected to Khakpour even before reading her memoir.
I learned about Lyme disease through Avril Lavigne; she was diagnosed with it a few years ago. I remember watching her interview and feeling shocked, perplexed, confused. How could a small bug bite cause such devastating symptoms? And why does the medical community not know more about this disease?
Lyme disease is becoming prevalent in North America, and the scary part is, anybody can get it. Unfortunately, most people have no idea what it is. In a nutshell, it is caused by strains of the bacteria Borrelia burgdorferi and can be transmitted to humans through the bite of an infected tick. So if you are going through a wooded area, take the right precautions: wear a chemical bug repellent, wear protective clothing, and check yourself afterward for ticks.
I wanted to hear about Porochista Khakpour’s experience with Lyme disease. And since this book was published recently, I hoped it would talk about current research being done to mitigate Lyme. But I walked away from this book having an unclear understanding of how Lyme impacts her.
But then again, this book is not strictly a medical memoir. The first few chapters are about the author’s experience as an Iranian refugee, adjustment to a new culture, drug addiction, and college endeavours. I actually thought these first few chapters were quite interesting.
Where the author lost me was the structure of this book. It went back and forth. It had no cohesive order. And the writing was surprisingly poor. There were many times Khakpour could not describe how she was feeling. I think an important aspect of good writing is being able to put words behind emotions people have difficulty expressing.
However, I also understand Khakpour was ill when she wrote this, and one of the symptoms of a Lyme relapse for her is losing grasp of the vernacular. But I think before this book was published an editor should have stepped in. If this book was tweaked just a bit, it would have been a phenomenal read.
Despite not being the most enjoyable reading experience, I do consider this memoir invaluable. It is important we have books that talk about the refugee experience, prejudice, isolation, addiction, living with a chronic illness, and navigating a confusing medical system.
i wanted to give this 2 stars because 1 feels mean but this was really underwhelming and actively bad in a lot of ways. i feel like i could not tell you a single thing that happened in this book in any detail despite having just finished it. it was disjointed and shallow and narcissistic and basically just a slightly fleshed out list of events in her life. the two things that do stand out to me are not good: she's like my friend's a sex worker (though she says prostitute...) and that makes her money gross even tho she wants to spend it on me. also spends 2 whole sentences of the book talking about her attraction to women then talks about all of her partners, only detailing boyfriends and then throws in literal parentheses at the end of the book that she's bi and also dated women but just literally didn't talk about them for the whole book? i'm not questioning her sexuality but i cannot understand why she presented it in this way with no nuance *especially* given how much she says she sees her life's chronology in terms of her partners. i thought this review was going to be one sentence but apparently i could go on and on about how bad this was.
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.
For obvious reasons, I tend to be drawn toward books about people living with chronic illness—particularly women. I was especially eager to read Sick, Khakpour's memoir, because I know a number of people affected by Lyme disease. Khakpour's story is a difficult one, full of not just a lifetime of illness, but a lifetime of struggle. At times I had to put it down and step away -- it can be difficult to read someone's story of illness when you live with an illness yourself. While I didn't relate to her story as much as I'd hoped, I found it fascinating, informative, and painful. Hers is a story that is needed in our society, for many reasons. We have a tendency not to believe women's physical pain, and Lyme disease seems to be an illness our country has a difficult time understanding. I hope that the more stories like Khakpour's that are heard, the more we'll start really listening to both women with chronic illness and those who live with Lyme disease. (Thank you to Harper Perennial for gifting me this copy in exchange for an honest review.)
It seems impossible to separate Khakpour’s life of illness from the remainder of her life. As she details, no one has been able to ascertain for certain when exactly she acquired Lyme. Some doctors have pointed to her health problems in childhood as symptoms, while others have indicated that college seemed like a likely bet. Having gone through one trauma after another, it’s also difficult to disentangle the symptoms of her Lyme from symptoms of primarily unrelated PTSD, depression, and anxiety. As she mentions, women typically struggle more with Lyme because they are often treated as psychiatric cases only and therefore left undiagnosed and untreated longer. As a quick note, there are extensive discussions of both drug abuse and suicide throughout the book, so if you find those triggering it may be best to steer clear.
And there it came: his half smile. And here it followed: my rage.
One thing that bothered me a lot was that she’s somewhat judgmental of one of her friends in Chicago, a wealthy woman who eventually reveals she’s a prostitute. This judgment comes unchallenged by the present Khakpour looking back and it’s clear she was sickened by the thought of her friend making money in this way, and pities her even though she herself is weak and slowly disintegrating while her friend is happy and stable. It was strange reading about someone who can look down so strongly on others when they themselves are struggling even more.
I also kept saying something I had heard some other therapist or doctor say at some point, maybe in the psych ward: Let’s get to the bottom of this once and for all. I was mesmerized by what “the bottom of this” could be, but I knew I wanted it.
Occasionally, the timeline feels mixed up. She’ll jump ahead only to jump immediately back and I forget where we are in the story. There are bits repeated throughout -- stories she tells multiple times, to my confusion -- that give the whole thing a sense of deja vu. Its meandering nature felt sometimes without purpose and I found myself checking where I was in the book to see if it was close to over. Her story itself is exhausting to read, and god knows how much more exhausting it must have been to live through, but its monotony made it disengaging when combined with the matter-of-fact tone she communicates her experiences in. Having had (much less serious) chronic illnesses of my own, I understand how hopeless the seemingly endless chain of doctors who don’t know what’s wrong with you is, but the negativity also felt like it would drown me without adding much to my experience as a reader.
So many men had tried to fix me; so many men were convinced they could help. What was one more.
Overall, even with my criticisms, I think this book is worth reading if you’re interested even if it didn’t quite work for me.
My takeaway from this chaotic memoir is that Lyme disease is terrfiying (thanks for checking me for ticks at the Cape @cassadycadillac) and the American health system is brutal. My other takeaway is perhaps the jumpy approach is not the right one for a memoir of this kind.
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.
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.
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.
"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 Suicides
being 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.
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.
Khakpour suffers from fourth-stage Lyme disease, which causes chronic insomnia, nausea, fevers, dysautomnia and brain fog, among other symptoms. For more than a decade, she seeks answers to explain her symptoms, being shuffled from doctor to doctor, and experiencing at best misdiagnosis and mishandling of her case and at worst outright disbelief and attempts to send her to a psych ward. It is very frightening to be an ill woman, especially an ill woman of colour as she demonstrated: you will be disbelieved and dismissed over and over again. As she struggles with illness and a sense of isolation, Khakpour dabbles in various drugs, and is prescribed numbers of benzos, which are addictive and only make her situation worse. This memoir captures her despair, her desperation, and the fear with which she lives. I found it compulsive reading, and while I do not have Lyme disease, it evoked my own experiences with chronic illness.
However, Khakpour wrote this while she was ill, and that may go some way to explain why the narrative feels chaotic, and at times incoherent. I struggled to understand out the timeline of events, and couldn't place when certain important events occurred. Khakpour talks a lot about being a born writer and much of her working life is spent either studying writing, writing novels or writing commercially, and teaching writing. Because of this, I was surprised by how clumsy the prose is in this memoir: sentences tend to be long, full of overlapping clauses and misuse of commas, and almost every statement is qualified with phrases such as "at times", "at best", "perhaps", "even if". I felt like I was wading through mud, and struggled to figure out exactly what Khakpour was saying. This would be a much stronger book had the choppy prose been smoothed out, and if a timeline had been established. I desperately wanted to like this, and I think it's an important book, but I can only give it a qualified recommendation: if you experience chronic illness, you will probably find something important here, but the prose will frustrate you.
"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!