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I can't even begin to describe how brilliant this is. I really hope you go read the whole thing.
"Disease Is Not A Metaphor" by Cyree Jarelle Johnson

Disease is not a metaphor for some crude and unnamed other. Disease is not capitalism, nor is it communism. Disease is not anarchy, nor is it the threat of anarchy. Except for when the body is chaotic and unknowable. Disease is not a virus in the system. Disease is not the body, not the whole, but a part. Disease is not a test from god. Disease is not a fiery furnace, a wall to climb over, a home to be lifted out of by rope. Disease is not a battle to be won or lost in death. Disease is not a metaphor. Disease is not hyperbole. Disease is neither metonym nor synonym. Disease is a condition of the body. Disease is a visitor. Disease is a backseat driver who climbs up front and takes the wheel.
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This essay basically says (my own words) "In our enthusiasm for evidence-based medicine (which uses statistics and large population samples to evaluate treatments and create clinical guidelines), let's make sure not to throw out things doctors learn through many years of practice seeing one patient at a time." It says it really, really well.

"Why do we always end up here? Evidence-based medicine’s conceptual cul-de-sacs and some off-road alternative routes" by Trisha Greenhalgh, M.D. (Journal of Primary Health Care 2012; 4(2))

Researchers in dominant paradigms tend to be very keen on procedure. They set up committees to define and police the rules of their paradigm, awarding grants and accolades to those who follow those rules. This entirely circular exercise works very well just after the establishment of a new paradigm, since building systematically on what has gone before is an efficient and effective route to scientific progress. But once new discoveries have stretched the paradigm to its limits, these same rules and procedures become counterproductive and constraining. That’s what I mean by conceptual cul-de-sacs.
the skilled practice of medicine is not merely about knowing the rules, but about deciding which rule is most relevant. This remains under-acknowledged and undertheorised in the dominant EBM paradigm. Illness may be a narrative, but just as in law, just as in literature, there is no text that is self-interpreting.
I think something sinister is happening, mainly because of the striking circumstantial resonance between the reductionism of EBM and the reductionism of contemporary policymaking.
EBM isn’t inherently wrong, but it plays to a vision of science that is characterised by predictive certainty—a vision that is taught to schoolchildren and perpetuated in the media, a vision of simple logic with readily deduced details and rule-governed consequences. It is this logic, coupled with the values of consumerism, which appear to have prompted the coalition government to develop a one-dimensional metric of human happiness which will light up like a thermometer bulb when policy tickles the public G-spot.
These books that she mentions sound very interesting:
How Doctors Think by Kathryn Montgomery (not the book of the same name by Jerome Groopman)
Complex Knowledge by Professor Hari Tsoukas
Upheavals of Thought: The Intelligence of Emotions by Martha Nussbaum
The Logic of Care by Annemarie Mol
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Superb takedown of the "obesity epidemic". Putting it here mainly so I can find it later.

"The epidemiology of overweight and obesity: public health crisis or moral panic?" by Paul Campos, Abigail Saguy, Paul Ernsberger, Eric Oliver and Glenn Gaesser

(Their answer: moral panic)

Excerpts:Read more... )
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via [personal profile] piglet

It's really good that people are talking about women's health and the effects of perfectionism, stress, poverty, and race. But I think this article conflates too many things and ends up being more on the "victim blaming" or "pitying" side and less on the "critical of society" side than it might intend.

It starts out by giving examples of privileged women who try to be perfect for their children and end up becoming sick. Then it goes on to say "The health risks associated with being a woman who does too much are even more pronounced for women of color." But the studies mentioned to support this claim didn't look at "doing too much." They seem to say that the poorer health of women of color is due to stress and poverty. Granted that a woman can cause herself stress through perfectionist tendencies, but if you're poor or a person of color, you don't have to be perfectionist or "leaning in" to be subjected to lots of stress. Society is capable of doing that to you even if you're trying to reduce stress in your life.

Then the article goes on to mention that women have more autoimmune diseases, depression, and anxiety than men. This might be partly due to biology (lower androgen levels, theorizes the president of the American Institute of Stress), but the article doesn't mention that there are likely diagnostic biases involved, or that women are more likely to seek medical care than men.

The author of this article has written a book Perfect Girls, Starving Daughters: How Perfection Is Harming Young Women, which is about eating disorders. The first edition of the book was called Perfect Girls, Starving Daughters: The Frightening New Normalcy of Hating Your Body.
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I got a mammogram today. (It was normal.) I had a bit of a cut-up as a technician. At one point she was positioning my boob on the plate and she was apparently satisfied with the position because she said "Oh baby, yes." Then she said "I'm sorry, I'm not supposed to say that. I didn't say that out loud, I just thought it." I said "I didn't hear a thing."

She kept apologizing for the discomfort, so at the end, I said "You were very gentle, all things considered." And she said "Yeah, considering my job is to use a vise."

Some of the positions I had to take reminded me of noir films where people wearing fedoras and trenchcoats are leaning against a rail and smoking and there's a huge shadow on the wall behind them. So I thought that there should be a photography series where women are interacting with mammography equipment in outfits like that. I don't have enough photography talent to set it up though.
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The DSM-IV had several different diagnoses for people who were distressed about their health (somatoform disorders). The DSM-V will have one. That seems like it might be good, but the criteria for diagnosing people with this condition might have been broadened to the point where the diagnosis might be misapplied.
"People can be diagnosed with Somatic Symptom Disorder if, for at least six months, they’ve had one or more symptoms that are distressing and/or disruptive to their daily life, and if they have one...of the following three reactions:

Criteria #1: disproportionate thoughts about the seriousness of their symptom(s);

Criteria #2: a high level of anxiety about their symptoms or health; or

Criteria #3: devoting excessive time and energy to their symptoms or health concerns.

Can you see how this diagnosis potentially includes everything from a stomach ache to cancer?
I'm of several minds about this.

Mind 1: I have chronic physical health issues and chronic mental health issues. When my mood disorder isn't well controlled, I absolutely fret about my health a lot more. So I think the state of mind they are describing is something real for some people.

Mind 2: But does the state of mind really need its own name and diagnosis? Can't they just include this as an aspect of mood disorders or obsessive disorders in general? Do anxiety or obsessive thoughts about your health require special treatments that are different from other anxiety and obsession treatments?

Mind 3: I'm concerned that this diagnosis will be used to deny people tests that could determine why they are having symptoms, or deny them treatments that would help them manage the symptoms of their chronic conditions. I'm concerned that it will be disproportionately applied to women and people of color.

To meet requirements for Somatization Disorder (300.81) in DSM-IV, a considerably more rigorous criteria set needed to be fulfilled: a history of many medically unexplained symptoms before the age of thirty, resulting in treatment sought or psychosocial impairment. The diagnostic threshold was set high – a total of eight or more medically unexplained symptoms from four, specified symptom groups, with at least four pain and two gastrointestinal symptoms.

In DSM-5, the requirement for eight symptoms is dropped to just one.
firecat: statuette of sumo crouching (sumo)

This article reports on a metastudy that finds people in the category of BMI currently labeled "overweight" have a lower mortality risk than people in the "normal BMI" category.

weight and food are discussed herein )
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Jon Robison is RLLY SMRT.

the HAES® files: HEALTH—A Holistic, Species-Specific Definition by Jon Robison, PhD, who says:
Living skillfully and compassionately with our inevitable struggles, rather than perpetually searching for the latest holy grail of “optimal health” may come closer to what it truly means to be healthy. Furthermore, the constant pressure to strive for this unreachable perfection; the quest for the perfect body, the perfect diet, the perfect exercise program, the perfect risk factors, behaviors, etc. set us up for almost inevitable frustration and failure.

He also posts the Food for Thought Pyramid (jpg), which I think I've posted before, but it's something that people probably ought to be exposed to at least as often as the other "Food Pyramid."
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People with BMIs in the "overweight" and in some cases "obese" ranges are more likely to survive diabetes, kidney failure, and heart disease than people who are "normal weight." A New York Times article discusses this: In ‘Obesity Paradox,’ Thinner May Mean Sicker

Quote: "Perhaps, some experts say, we are not asking the right question in the first place. Maybe we are so used to framing health issues in terms of obesity that we are overlooking other potential causes of disease."

The article doesn't end with the usual comment such as "But don't use this as an excuse to eat a dozen donuts!"

I'm looking forward to the day when they stop calling it a "paradox" that some health conditions are less debilitating to people who weigh more.
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Feminist Perspectives on Elder Care
Track: Feminism and Other Social Change Movements

Panel description
Like child care, the vast majority of elder care is done by women and is frequently unpaid. (When it is paid work, it is often paid extremely poorly.) Many WisCon attendees are dealing with elder care issues, either because they have aging parents, or because they are the aging parent. Are there political solutions we could be working toward? Are there pragmatic solutions we can share with each other? Are there new ideas (for caregiving, accessibility, communities, etc.) that we can offer as a shared vision?

twitter hashtag: #ElderCare

(I did not list most panelists' journal/blog info, for reasons of privacy; if you want your panelist name associated with your blog or journal, leave a comment or send me a private message.)
Criss Moody 
Janice Mynchenberg
L J Geoffrion [personal profile] ljgeoff
[personal profile] firecat
Naomi Kritzer 

I was a panelist and I was not able to take notes. This is what I remember, and I hope others on the panel and attending the panel —and anyone with questions or information—will contribute comments/resources.

During the panel I was wondering if it would be useful to create a DW and/or LJ community and/or mailing list for eldercare resources for people who are fannish and/or alternative in other ways. Thoughts?
Read more... )
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via [ profile] moominmuppet
"Reclaiming 'victim': Exploring alternatives to the heteronormative 'victim to survivor' discourse"

The article discusses the rigidity of societal narratives around people who have been subjected to violence. I quote from it below the cut-tag.
cut-tag )
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via [personal profile] andrewducker
"This startling fact was first noticed by the British actuary Benjamin Gompertz in 1825 and is now called the 'Gompertz Law of human mortality.' Your probability of dying during a given year doubles every 8 years." The article goes on to explain what we can conclude from this statistic: "By looking at theories of human mortality that are clearly wrong, we can deduce that our fast-rising mortality is not the result of a dangerous environment, but of a body that has a built-in expiration date." (Also, the law refutes the popular notion that thin people don't die.)

via [personal profile] onyxlynx

Face-recognition camouflage:

Four rhetorical techniques the media or government can use to increase fear and hatred in the populace:
firecat: statue of two fat people kissing (fat people kissing)
National Public Radio (NPR) has a web page asking for comments on the topic "What does it mean to live in a nation where one out of every three people is obese." (The nation in question is the United States.)

The lead-in to the comment section says:
Americans are getting bigger. And it's not just changing our health, but our nation's infrastructure, spending habits, economy and state of mind. What changes have you noticed to the way we live? 

Tell us here. Your response will help shape a national reporting project on obesity.
Here are the comments I left them.

What conversations do you have - or avoid having - about weight?
Read more... )
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Via [ profile] moominmuppet

"Mortgage defaults are causing health problems in people over 50" by Annalee Newitz

The study was led by University of Maryland epidemiologist Dawn E. Alley, who said:
More than a quarter of people in mortgage default or foreclosure are over 50. For an older person with chronic conditions like diabetes or hypertension, the types of health problems we saw are short term consequences of falling behind on a mortgage that could have long-run implications for that person's health.
While this information may seem like common sense, this study is one of the only examples where such "common sense" has actually been confirmed scientifically.
Well, I'm glad research like this sometimes sees the light of day.

Original study
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Anna North of interviewed me about how to deal with doctors who are judgemental of your weight. Her article also discusses how to deal with doctors who are judgemental of your sexuality.

ETA: Be careful of the comments.
firecat: poc holding water in hands (cupping water)
I went to a talk on Sunday by Toni Bernhard, the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. The book is available through Wisdom Publications.

Toni Bernhard is diagnosed with Chronic Fatigue Syndrome.

When I typed "How to be sick" into Google, the second book result that popped up was something called Never Be Sick Again: Health Is a Choice, Learn How to Choose It. I felt angry, because I believe it's a lie that a person's choices can always bring them to full health, and I believe it's a lie that harms people.

Toni Bernhard said at one point that this culture "worships at the altar of wellness." I think that sums up an appropriate response to the "health is a choice" concept.

I'm writing up my notes from the talk here.
Read more... )
I went to this talk because I have chronic health conditions that affect my mobility and energy levels, and I am a caregiver for my mother, who has Alzheimers. I'm a Buddhist and my study of Buddhism has helped me work through grieving over these things and building a life around them, and I wanted to hear a talk that specifically addressed how Buddhism can help a person deal with chronic illness. I figured that I already knew a lot of what she was going to say, but I thought I'd learn a few things and find out that I'm already doing a lot of what there is to do, and that would help me feel more confident.

I especially liked the phrases "Am I sure?" and "don't know mind." I think I will find those useful.

There was some discussion of envy. I've experienced envy when the OH goes to social events such as cons without me. I want to enjoy cons but I mostly don't unless I plan very carefully. It's not because of mobility issues, it's because I get mentally/emotionally exhausted. (Introversion certainly, but also sensory stimulation.) I realized that the reason I experience envy around this is that I don't accept my social limitation. I think I should be able to fix it or get over it. If I can let go of that belief then I might not feel so conflicted around the issue.
firecat: man screaming with hand over face (screaming facepalm)
I expect this UPI article will be all over my reading list but I have to put in my own pocket change before I even go look.

It's annoying that they are being all gender-essentialist about it, but if they're going to be that way, it's good that they are acknowledging that women feel more pain, because usually women's pain is downplayed and ignored.

But then they manage to downplay it anyway. "Let's treat the emotions." Let's get a woman living with pain to say "it's all about just not caring whether you have pain." And not once is it mentioned that maybe we should believe women who have pain, and give them pain medicines to manage their pain.

"Pain different for women, men"
ATLANTA, Aug. 13 (UPI)
(Full article quoted. Emphasis mine.)
Chronic pain is more intense and
lasts longer for women than men and a higher proportion of women
suffer from diseases that bring such pain, doctors say.
Jennifer Kelly of the Atlanta Center for Behavioral Medicine
in Georgia says women have more recurrent pain and more disabilities
from pain-causing illnesses such as fibromyalgia, rheumatoid
arthritis and irritable bowel syndrome, CNN reported Friday.
Hormones could be one reason women bear this burden of pain,
Kelly said, noting the menstrual cycle can be associated with
changes in discomfort among women with chronic pain.
Pain also can have long-lasting consequences, studies show.
Women who suffer menstrual cramps have significant brain structure
changes compared with women who don't, one study found, while other
studies have revealed abnormal brain structure changes in people
with disorders such as chronic back pain and irritable bowel
Women tend to focus on pain on an emotional level, worrying
about how it will affect their responsibilities, whereas men focus
on the sensory aspect, Kelly said, urging doctors to help women deal
with negative thoughts
that can make a painful situation worse.
One woman who suffers from arthritic conditions agrees
patients with chronic pain need help changing their mind-set about
"Part of what helped me was switching out the model in which
I had to be pain free to be happy," Melanie Thernstrom says.
"Realizing I can have some pain, just like it can be raining outside
and I can be happy
-- it's all a matter of what level the pain is
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Before the presidential election, I was disappointed to see Obama commenting that doing away with "obesity" would go a long way toward solving US health care problems. Some fat activists have been communicating with Obama and emphasizing that focusing on "obesity" is not beneficial; if disease prevention is a concern, then better results would be obtained by focusing on Health At Every Size (HAES) principles, including encouraging movement and whole foods.

I've mostly had my head in the sand about this because I don't trust Obama to get this. But I noticed that Yahoo had a news story a couple of days ago: "Obama wants skinnier feds".

But I read the article pretty closely and I didn't see one single quote attributed to Obama that mentioned weight. The article described the practices of seven "work force innovators who were meeting with the president to discuss their best practices." Only two of these descriptions mentioned weight: Microsoft was reported to have an "obesity program" and Safeway was reported to have a “Healthy Measures” program that was "making employees accountable for their weight."

A recent article in the New York Times, "Congress Plans Incentives for Healthy Habits", mentions "Congress is planning to give employers sweeping new authority to reward employees for...weight loss..." Senator Tom Harkin of Iowa is one of the authors of a proposal that would encourage employers to develop programs that focus on "obesity" among other things that are believed to be related to health. Obama is mentioned only once, and not in the context of saying anything about weight.

On a search on "obesity" turns up 16 references, most of them from reports on state by state "Health Care Community Discussions." But there are no documents coming out of the White House mentioning it, at least if the search form is working properly.

On today there is a blog post "Health Care Reform: Urgency and Determination." It links to a statement by the president about health care reform. One paragraph made reference to "prevention and wellness programs," but the main principles Obama asked Congress to emphasize were:
first, that the rising cost of health care has to be brought down; second, that Americans have to be able to choose their own doctor and their own plan; and third, all Americans have to have quality, affordable health care.
I'm nervous because "prevention and wellness programs" often focus on weight, but so far I'm not seeing any fat-bashing.

Unfortunately although Obama might be using HAES language, the health reform programs that actually get implemented might not use HAES principles. As such programs begin to be implemented fat activists are going to have to be vigilant to encourage the people developing them to turn away from using changes in weight and BMI as symbols of health improvement. They are lousy symbols of health improvement because they just aren't directly related to health the way changes in exercise habits, say, can be.


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firecat (attention machine in need of calibration)

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