Maya Dusenbery's Blog

I don’t know what questions the journalists asked the experts in this NPR story about programs that treat unexplained chronic pain conditions in kids by forcing them “to push their bodies until they are in tons of pain” in order to retrain their brains to ignore pain.

But these are the questions I would have asked them:

1) What evaluations do patients undergo before the program to
determine that there isn’t an undiagnosed condition or injury that
explains their pain? Literally, what lab tests and imaging is ordered?
How many specialists have independently reviewed their case? How sure are you (as a percentage) that you have ruled out every
possible underlying cause of the pain before accepting a patient into
your program?

2) Your program is based on the
theory that the pain persists because patients focus on it. But what is
your theory for how the pain begins? How do you explain experiences like
Devyn’s in which the pain began suddenly out of the blue?

3) There
are many pain experts who believe that what you call “amplified pain”
is indeed caused by an amplification of the pain processing system but is
due to sensitization at the level of neuron, not mediated
by psychological factors like attentional focus. What evidence specifically convinces you that your theory is the more likely one? And
what evidence would convince you that your theory is incorrect? Is your theory falsifiable?

4) You
theorize that the pain is an expression of emotional distress in kids
who are “not in touch with their feelings” and “don’t have the
sophisticated emotional skills they need to manage in an increasingly
stressful world.” Given that girls are generally more emotionally
intelligent and in touch with their feelings than boys, what is your
explanation for why girls are disproportionately affected by these pain syndromes? And if your
theory about the root cause of the pain is correct, wouldn’t the factor
that explains the gender difference then need to be something nearly
universal—like, say, sex-based genetic or hormonal
differences—to produce such a marked gender imbalance in the opposite direction? And if that’s the case, wouldn’t that suggest that biological factors play a more important role than your theory allows for?

5) Many
other experts in what you call amplified pain recommend exercise because of its physiological effect on the pain processing system. What
makes you believe that any benefit from your program is due to the
experience of pain and not the direct effect of the exercise itself?
Have you done a study in which one control group got the exercise only (or the exercise,
therapy, and breathing exercises) but without the focus on ignoring the pain?

6) Similarly,
learning to distract yourself or even disassociate from the pain is a
common way of coping with pain, both acute pain and chronic pain
explained by an underlying disease or injury. Have you done a study in
which you put patients with “explained” chronic pain conditions (say,
rheumatoid arthritis patients) through the same treatment program? If
patients with “explained” chronic pain report comparable reductions in
pain wouldn’t that suggest that what you are offering is not a treatment
of the root cause of the pain but simply a (very unpleasant) way of
teaching patients some pain coping skills?

7) Your
program is rooted in a belief that you should not give more attention
to patients’ pain complaints. An asthma attack and a nosebleed are not
pain complaints. What possible justification was there to ignore these
problems in Devyn?

8) Upon
completion of your program, what training do you provide to patients and
their parents about how to differentiate between their existing pain,
which they are instructed to ignore, and new pain complaints that may be a
warning sign of an unrelated potentially life-threatening medical
problem?

9) How did you get permission to
implement this treatment program if the approach has never been proven
safe and effective in large controlled studies? Do you inform patients
and their parents of the untested, experimental nature of the program?

10) You believe that the alarmingly high and rising rates of chronic pain in the US are caused by the fact that American society has “focused way too much attention on aggressively relieving pain” and our
medical system “asks patients to rate their pain on a scale of 1 to 10,
and treats it like an emergency.” How does this theory square with the
overwhelming amount of evidence that pain is frequently undertreated in the US medical system, physicians get little training on pain
management, and most continue to see pain as a diagnostic clue and not
a problem in and of itself?

11) As our understanding of the neurobiology of pain has gotten
progressively more sophisticated over the decades, many other previously
inexplicable aspects of pain that we resorted to explaining in
psychological terms have become explained in physiological ones (for example, phantom limb pain). Doesn’t this history give you pause
about the wisdom of resorting to psychological theories for pain that is currently
“unexplained”?

12) You clearly believe wholeheartedly that your theory is correct. What if you are wrong?

“The fact that Serena Williams, who’d nearly died of a pulmonary embolism in 2001, who had just had a C-section which increases the risk of blood clots, and who is Serena goddamn Williams, who is rich and famous and is rich and famous specifically for the spectacular feats of her body, had to identify her symptoms herself and demand the screening needed for a potentially deadly complication is an incredible illustration of the deep sexism and racism that black women face in the medical system.”

- I’m at Feministing writing about Serena Williams’ harrowing childbirth experience and the US’ shameful record on maternal mortality.

Here’s the ten-word version of my book. Available to pre-order now.

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It can, I think, be difficult for those who don’t live it to fully grasp that it’s the cumulative effect of these experiences, individual and collective, big and small—which is visually represented nicely by the stream of posts in our Facebook and Twitter feeds this week—that’s so damaging.

And it’s also this: the perpetual uncertainty about when the “minor” stuff might turn into the “major” stuff, and how the latter gives the former far more power. My own experiences being harassed on midwestern streets and NYC subways are nothing like being raped, of course. But a cat-caller is only scary at all because we don’t know when one might follow us home. And a guy who aggressively pushes for sex wouldn’t make us so queasy if we felt 100 percent sure he’d listen if we said no.

I hope that men see every “me too” post as representing a very good reason—and usually more than one—for all women not to trust men. #YesALLmen because it’s precisely that uncertainty—and the consequent need for constant guardedness—that’s so corrosive. If being distrustful of a whole gender strikes you as terrible and unfair—well, yes, that it absolutely is.

”

- Some reflections on #MeToo

Watch this heartbreaking, terrifying, utterly enraging documentary on myalgic encephalomyelitis, a.k.a. chronic fatigue syndrome. Premiering in NYC this weekend. Elsewhere soon. 

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What if men bore six times the economic cost of Alzheimer’s in the U.S? What if it was mostly men who devoted a total of $17.9 billion of unpaid care to a loved one with the disease last year? What if it was mostly men—many of them in the prime of their careers and raising kids to boot—who were forced to take time off from work, take a less demanding part-time job, or quit altogether to provide this care? What if it was mostly men who saw their own emotional and physical health suffer for it—to the tune of $9.7 billion in increased health-care costs themselves?

How much more quickly would public pressure build for reforms to lighten the load? For innovative new models to provide coordinated, long-term care for Alzheimer’s patients under Medicare and Medicaid; for an expanded workforce of well-compensated and well-trained professional caregivers; for access to affordable and not soul-crushing assisted living facilities and nursing homes for all; for a federal paid family and medical leave law for those who want to take care of their loved ones themselves but can’t afford to sacrifice their incomes to do so.

How long would it take, in other words, for this care to be transformed from a private burden to a public one? How long before more and more of the estimated economic value of this unpaid labor—$217 billion annually—was shifted onto insurance companies and government entitlement programs and employers?

If it were—if the market lost this subsidy—the annual economic cost of Alzheimer’s would nearly double. How seriously would we take it then?

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- A recent analysis finds women bear six times the cost of Alzheimer’s care over the course of a lifetime compared to men. 

#shoutyourabortion

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What makes these stories so horrifying is the thread of almost Dickensian economic coercion running through them. Sure, some women may be able and eager to get back to a beloved career ASAP after childbirth—like Yahoo CEO Marissa Mayer, who recently announced she’s having twins and plans to take “limited time away and [work] throughout” her pregnancy and delivery. Others who could technically take more time off may feel pressured by the 24/7 workplace culture at so many American employers to return sooner rather than later. But only desperate financial necessity drives someone to do so when they’re still bleeding from major abdominal surgery. Indeed, there’s a clear class divide between mothers who are forced to get back to work early and those who aren’t. In the 2012 survey Lerner cites, 80 percent of college graduates took at least six weeks off, while only 54 percent of those without college degrees did so.

It’s a reality that can be sometimes overshadowed when the conversation around maternity leave focuses on how much worse off all American women are compared to their counterparts in, well, nearly every other country in the world: The impact of our terrible federal family leave mandate does not fall evenly. And as elite employers—like Microsoft, Netflix, and Adobe, to name the latest—are increasingly competing for talent by announcing generous paid family leave policies, the disparity is destined to grow. Netflix’s new much-criticized two-tier parental leave policy—12 months for well-compensated, salaried employees on the digital side but just 12 weeks for the lower-paid, hourly workers shipping DVDs—reflects the reality in the U.S. economy writ large: We may be a nation of paupers when it comes to support for working parents, but there are still haves and have-nots.

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- My latest at Pacific Standard about how the US’s lack of paid maternity leave worsens inequality. 

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Feminist critiques of modern medicine have long noted that, particularly when the cause of an ailment is unknown, doctors default to a psychological explanation in women more than in men. There are certainly some factors that may heighten this tendency when it comes to heart attacks. After all, only 20 percent of people who come to the ER with chest pain are actually having a heart attack. There is also clear symptom overlap between a heart attack and an anxiety attack, and younger women are at relatively lower risk for the former and higher risk for the latter. This reality, the Yale researchers suggest, might contribute to “initial triage strategies to attribute symptoms to non-cardiac conditions” in young women. One cardiologist put it more bluntly: “In training, we were taught to be on the lookout for hysterical females who come to the emergency room.”

But to a large degree, that sentiment reflects the kind of treatment many women receive from the health care system as a whole. The fact that psychological problems, like anxiety disorders and depression, can have a wide range of “non-specific” symptoms means they can serve as remarkably plastic diagnoses. To take just a few examples from the experiences of young women I know: For a month, multiple health care providers insisted that a friend’s stabbing chest pain was likely just anxiety before they realized it was pericarditis, an inflammation of the lining around the heart that causes symptoms similar to a heart attack. Dizziness, wooziness, ringing in your ears, and floaters in your eyes? An infectious disease specialist suggested that another friend see a therapist for depression, when she was actually suffering from West Nile virus. Others have encountered physicians eager to play armchair psychologists and explain away the fatigue and widespread pain of fibromyalgia, and the abdominal pain and incontinence of a ureaplasma infection.

This pervasive bias may simply be easier to see in the especially high-stakes context of a heart attack, in which the true cause usually becomes crystal clear—too often tragically—in a matter of hours or days. When it comes to less acute problems, the effect of such medical gaslighting is harder to quantify, as many women either accept misdiagnoses or persist until they find a health care provider who believes their symptoms aren’t just in their head. But it can be observed indirectly: In the ever-increasing numbers of women prescribed anti-anxiety meds and anti-depressants. In the fact that women make up the majority of the 100 million Americans suffering from (often under-treated) chronic pain. In the fact that it takes nearly five years and five doctors, on average, for patients with autoimmune diseases, more than 75 percent of whom are women, to receive a proper diagnosis, and that half report being labeled “chronic complainers” in the early stages of their illness. Then there are the diseases, like chronic fatigue syndrome and fibromyalgia, that exist so squarely at the overlap of the Venn diagrams of “affects mostly women” and “unknown etiology” that they’ve only recently begun to be recognized as “real” diseases at all.

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- My latest at Pacific Standard: Is Medicine’s Gender Bias Killing Young Women? (Yes.)

On Feminist Ryan Gosling, male feminists, and the movement’s increasing trendiness.