doing_harm unhinged :the truth about how bad medicine and lazy science leave women dismissed, misdiagnosed, and sick by maya dusenbery 'medicine has an enormous power: the authority, as susan wendell puts it, 'to confirm or deny the reality of everyone's bodily exeperience' - to determine which symptoms are 'explained' and which are 'unexplained,' to judge who is a sick person deserving of care and sympathy and who is a 'heartsink patient' trying to get the 'secondary gains' of the 'sick role'... i have to believe that most health care providers do not fully appreciate the harm they are capable of causing by doubting or belittling women's symptoms. when medicine denies the reality of your bodily experience, it is a deeply invalidating form of gaslighting... i hope that this book has provided a basis for women to recognize that many of their experiences with the medical system are ones they share with other women across diseases. while the stories of a woman with ovarian cancer and a woman with an autoimmune disease may quickly diverge once they get diagnosed, until they are, they are often very similar. although living with vulvodynia and living with chronic fatigue syndrome are each difficult in their own unique ways, the reason that there is such a lack of awareness and so little research on these conditions is largely the same. while our disease may be different, many women's problems with the medical system are rooted in the same history and the same systemic problems. women's 'doctor stories' are similar, even when they are quite different. a white ivy league college student is more likely to be seen as anxiety-ridden, while a woman of color is more likely to be stereotyped as a drug seeker. 'educated white women' are seen as health-obsessed hypochondriacs who need to get off webMD. but less-educated women may be seen as malingerers looking for a disability check. a thin woman is told she can't be seriously ill since she 'looks so good!' while a fat woman is told all her symptoms are due to her weight. for most of our lives, we are 'too young' to be sick anyway, and our symptoms can be blamed on menstrual cramps, pregnancy, motherhood, and menopause. by the time we're finally old enough to be seen as sick, we're so old that nobody cares if we are. our intersecting identities may make the particular stereotypes that hurt us different - in some cases, even diametrically opposed - and yet somehow we so often end up in a similar place: fighting to have our reports of our symptoms trusted and taken seriously... ...when i started researching this book, i expected that women's stories would be similar and rooted in the same systemic problems, but i didn't anticipate finding that our fates are so intimately intertwined. in a medical system with a tendency to assume anything it can't explain is psychogenic, as long as women have more 'medically unexplained symptoms' thanks to the knowledge gap, women will continue to find that they are stereotyped as stressed-out somaticizers and their symptoms are not taken as seriously as men's. all women, then, have a vested interest in seeing medicine finally explain the meany 'medically unexplained' syndromes that disproportionately affect women. as long as these syndromes remain functional diagnoses without biomarkers, doctors can continue to use them as diagnoses of exclusion, handed out prematurely when they haven't cracked the case. women who have an autoimmune disease will continue to be told they have fibromyalgia. women who are suffering from lyme disease will continue to be labeled as having chronic fatigue syndrome. women with ovarian cancer will keep being misdiagnosed with IBS. and the women who actually have these poorly understood conditions will continue to suffer.' - maya dusenbery 180422 ... epitome of incomprehensibility I read this last week and meant to chime in. Thanks for sharing it! I'm by no means an expert, but this looks like useful and potentially life-saving research as well as being a social commentary. A report by the CBC noted something similar: women heart attack patients are often not diagnosed as quickly as men are, because the medical model for heart attacks is mostly based on men. They tend to have more "typical" symptoms such as sudden chest pain and dizziness, while women are more likely to experience pain in their arms and surrounding areas. (That's all I remember.) Thing is, people's lives are saved when heart attacks are caught earlier, so... yeah. It also works the other way sometimes. I've heard men have a harder time getting diagnosed for osteoporosis; apparently, since it's more common in women, doctors don't think of it as affecting men. So it seems to be a mix of inflexible paradigms and (in the heart attack cases and others you cited) male-centred bias. 180504 ... unhinged a lot of this book resonated with me from personal experience with western doctors and from secondary experience of family members. the most egregious example from this book was a study they did solely on MEN to prove that hormone replacement therapy was safe and effective in menopausal WOMEN you might want to read this whole book. it was illuminating 180507 ... e_o_i "a study they did solely on MEN to prove that hormone replacement therapy was safe and effective in menopausal WOMEN" what what is the use of that?? this has rendered me temporarily uncapitalized! 180510 ... unhinged i know right...I had to read that sentence of the book numerous times cause it made no sense. but that is the way western medicine treats women. why would you use men for that study? why would any scientist worth their salt except those results as valid? it doesn't make sense. just like the doctors that put my grandma on medication for parkinsons disease and just dismissed her when she kept saying the medicine wasn't working until she was in an emergency room vomitting up blood. THEN they found out she didn't have parkinsons at all but it was really cirrohsis (or however you spell that) of her liver. for years she told her damn doctors those meds weren't making her feel better and they just tossed her off and blamed it on her hmo not wanting g to pay for not running more tests. western medicine combined with the shitty American healthcare put my grandma in an early grave. the way the author addresses that exact scenario brought me to tears because i finally understood the full extent to which human error killed my grandma. that her damn doctor tossed her off like she was a batty old lady that just wanted to complain. that this happens to most women at least once in their life is...an outrageous. like, a real legitimate one, not a phoney college students in their little bubble outrage. 180510 ... unhinged oh autocorrect...today is not the day 180510 ... nr i think i will pick up this book if i'm in the mood to be angry. i have had doctors throw both the IBS and CFS diagnoses on me, when i've explained that neither of them quite fit for me (which they should know, based on symptoms). also the "it's probably psychological" theory. basically just a shitshow of "hmm, we can't figure out through our limited available tests and training what's wrong with you, so let's say you probably could have these things going on." and then i decided to do a much more thorough gut test with a skilled naturopath (which i'd highly, highly recommend), and discovered basically all of my symptoms can be explained through imbalances in that area. which makes a lot more sense, since i've had a bad stomach my whole life. and i have since learned again and again how much gut = second brain. it's flabbergasting to me that major medical centres are only starting to test this NOW. health tangent, yesssss. but i do now wonder how doctors would've dealt with a man in my position. 180512 ... nr i'm at a cafe where a kids-hospital worker at the table next to me is on the phone with a 16-year-old girl who was just hurt by her mom, and the girl is looking for a place to stay tonight. she has siblings, but says the mom is only mad at her. the worker next to me is doing all the right things and making the right calls, but it seems shelters are full. i can hardly handle things like this. hurting a child is just... i can't. 180514 ... nr i actually didn't meant to post that under doing_harm, but clearly it fits. 180514 ... unhinged you were one of the people I thought of when I read this book n_r. It will definitely make you angry, but I would say...just keep going to the naturopath and working on your gut health. I've been taking probiotics for almost a year and my depression and allergies are much improved. (the Greek root of the word hysterical actually meant 'uterus' two thousand years ago. now it means insane and untrustworthy...) 180514 ... e_o_i It's mentioned in a review of another book in The New Yorker - the article was long, but here's the part where it's mentioned: "Bring a sensible-seeming man along to your appointment or to the E.R., Maya Dusenbery, an editor at the Web site Feministing, suggests in “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick” (HarperCollins). It’s the best way to insure that you are given the benefit of the doubt, and will not become one of the countless cautionary tales that fill her book — women who are sent home mid-heart attack to calm their nerves, or with an appendix on the point of rupture, or otherwise left untreated and worsening for years on end. As in so many other areas of American life, women of color often endure the most extreme versions of this problem." from https://www.newyorker.com/magazine/2018/06/04/memoirs-of-disease-and-disbelief 180528 ... unhinged my mother is having trouble with her ear right now; she got a sinus infection from a virus or something and has had a clogged ear for months. (i got a lot of ear infections growing up; clogged ears are maddening.) her ear problems have been ongoing for months so she is getting more and more frustrated cause she just wants relief. she recently had a surgery to put a drainage tube in her ear drum because all other avenues weren't working. when she was going through the process of getting the tube she said to me 'i had your father come in the room with me because the doctor listens to me when he's there' or something pretty much along those lines. (the drainage tube did absolutely nothing to relieve the blockage in her ear and now her ear-nose-throat doctor is recommending a CAT scan. my mother has a brain aneurism so this is all making me nervous. i can only imagine how she feels) yes, i also experienced similar bullshit from a male doctor when i was in college and a genetic cyst on my tailbone became infected. the way that doctor treated me (i was alone in the exam room) infuriated me even through my debilitating pain. 'so your back hurts...could you be pregnant right now?' his eyes raised disbelievingly at me. 'no.' 'how do you know you aren't pregnant right now?' 'because i'm a virgin...' the doctor didn't look like he believed me but he was sufficiently embarrassed to drop the topic (living in the middle of a rural community is not something i ever want to do again). he gave me a prescription for motrin and some xrays to make sure my tailbone wasn't broken from a recent fall. later that night my infected cyst exploded (literally) and i had to go back to the hospital the next day. so yeah...i have had to deal with chauvinism in my medical care and so have other women in my family. after reading this book, and realizing this is a systemic issue with western medicine, i become more secure everyday in my choice of eastern medicine. chinese and ayurvedic medical practitioners tend to look at each patient individually and holistically in a way that makes me feel much more empowered. my health is better too. fuck a doctor. especially here in america...fuck those over_educated close_minded entitled fucks. the amount of money you spend on your education doesn't automatically make you good at your job fool. 180529 what's it to you? who go blather from