Editorial: Health, Gender, and Embodiment: Part Two

by Brandy Schillace, Editor-in-Chief

In this, our third and final issue of 2018, we present a series of thoughtful essays to carry us through the electoral season. Since our inception, which pre-dated the Dosis name, we’ve undertaken to present issues of health and social justice. Never has the call to action and advocacy seemed more necessary than now, as we watch women’s voices silenced or disbelieved by party politics, and the rights of LGBT, women, and minorities facing further restriction. Your words, your voices, matter. These essays, which follow on as part two of Gender, Health, and Embodiment (for part one, see Summer 1:2) speak to access, to history, and to our need of mutual support networks. From mental health history (Gilbert) and embodied pain and trauma (Stewart and Hansen), to issues of maternity and infertility (MacDonald and Novotny) and the rhetoric of depression narratives (Lloyd), our Fall/Winter issue brings the ongoing struggles for acceptance and voice to the fore.

This issue will also mark our last for the Dosis blogzine. But while we will not be posting additional CFPs in the foreseeable future, we are not closing our doors. The blog will continue to operate as archive for reading these works, and there may occasionally be additional editorial posts. Our work here has been an honor, but we’ve turned energies into other channels, still fighting the good fight for inclusivity and social justice. I would like, here, to particularly thank the Managing editor, Hanna Clutterbuck-Cook, and the Book Review editor, Anna Clutterbuck-Cook. Their titles do not do justice to the amount of behind the scenes work they have undertaken in the last 3+ years. I would like also to thank our engaged authors for sharing their time and words with us. And finally, hats off to you, our readers. We know that you are out doing your part. We encourage you not to lose hope, and to come together for support and self-care. And of course, as our cover image to the downloadable and sharable PDF makes clear, we thank you for voting for change!

Advertisements

Feature: Pain, Prestige and Embodiment

by Rosemary Talbot Behmer Hansen, MA, MPH

It’s estimated that tens of millions of women in the U.S. are dealing with unnecessary pain because doctors assume that, even if there is something wrong with them, they’re probably exaggerating their symptoms. Simply put, medicine doesn’t trust women to be familiar with their own bodies. [1]

There is “no shortage” of data that confirms that men receive superior management for chronic pain. [2] This essay will use fibromyalgia as a case study for assessing how gender identity unjustly exacerbates physical and psychosocial suffering for chronic pain patients.

Fibromyalgia Background

Fibromyalgia Syndrome is a condition characterized by chronic widespread pain and somatic symptoms. While the disease mechanisms are yet to be entirely understood, fibromyalgia has been shown to be due to an abnormal interaction of neurological, neuro-hormonal, and immunological systems. Symptoms include pain, fatigue, sleep disturbance, anxiety, depression, memory and mood deficiencies. As well as having genetic components, fibromyalgia can be triggered by psychological trauma, infection, and physical pain experiences. Newer diagnostic criteria reveal a fibromyalgia female to male ratio of 2:1, which is similar to those of other chronic pain disorders. There is no cure for fibromyalgia. Patients can sometimes find relief with pharmacological, psychological, educational or holistic therapies. [3]

History of Women’s Pain

“…the outlook for patients is rosier than you might expect given the condition’s perplexing reputation.” [3]

Long before chronic pain conditions such as fibromyalgia were coined, women who reported pain, distress and fatigue were given the diagnosis of hysteria. Latin for “womb,” hysteria in the 18th century was thought to originate in women’s reproductive systems. In the 20th century, Freud proposed that hysteria was a conversion of psychological distress, brought on by repressed memories that manifested in female bodies. Men diagnosed with hysteria were described as “weak, effeminate creatures” without the qualities that are seen as “appropriately masculine.” [5]

The term “fibrositis” was coined by a 1968 physician in Illinois to describe “a constellation of generalized stiffness, headaches, malaise, and tender points… [in women] who tended to be “worry warts.” The trigger for the exclusively-female fibrositis was believed to be “reckless emotion.” [3] In the late 1980s, fibrositis evolved into the diagnosis called fibromyalgia. The diagnosis allowed people living with chronic pain to find support from rheumatologists who finally saw their pain as a disease of the body, and not the mind. [5]

Criticism of fibromyalgia patient credibility was swift. A physician stated that people with fibromyalgia syndrome had real pain, but suffered from an inability to cope with both the intensity of their symptoms as well as, in general, the various stressors in their lives. [6] He, like many other doctors, believed fibromyalgia enabled patients to abuse the medical system. Indeed, Indiana University Neurology Professor John Kincaid estimates that about half of all physicians today do not believe that fibromyalgia exists—a notion that is contrary to the findings of countless researchers, the World Health Organization and the American College of Rheumatology. [3]

Disease Prestige

…diseases and specialties associated with technologically sophisticated, immediate and invasive procedures in vital organs located in the upper parts of the body are given high prestige scores… At the other end, low prestige scores are given to diseases and specialties associated with chronic conditions located in the lower parts of the body or having no specific bodily location, with less visible treatment procedures, and with elderly patients. [7]

This is the conclusion from a 2008 Norwegian study, which asked senior physicians, general practitioners and senior medical students to all rank 38 diseases, including cancer and diabetes, in terms of prestige. Fibromyalgia was ranked last by all three participant groups. [7]

Disease prestige can impact the quality of treatment a patient receives. Access to care, hospital funding, medical research and funding, and physician support, have all been associated with disease hierarchy. [8, 9] In a blog written by a physician who was diagnosed with fibromyalgia, she asserted that the primary reason why fibromyalgia research has inadequate support is sexism. [10] Her sentiment is supported by a National Fibromyalgia Association medical advisor, Dr. Patrick Wood, who argues that the complaints of fibromyalgia patients are dismissed because they are women. [4]

Physician Heroics

“…physicians value narratives in which they are portrayed as ‘masculine and extraordinary lifesavers’, reflecting deep-rooted heroic tales of Western culture.” [9]

When treating a patient in an acute, urgent circumstance such as during a heart attack, physicians are required to perform systematic medical evaluations and use highly technological interventions when time is of the essence. Studies have confirmed that many physicians find these dramatic moments to be of high interest. [9]

Fibromyalgia patients may inadvertently challenge traditional physician roles of being “extraordinary lifesavers.” Diagnosing fibromyalgia, in many ways, requires physicians to admit that they “just don’t know what’s wrong.” [11] This is a tough thing to do when Western culture associates medical certainty with physician prestige. Furthermore, treating fibromyalgia patients involves a longitudinal process of therapeutic trial and error. [4] These patients are not damsels in distress to be quickly rescued from the jaws of death; they may instead be viewed as challenging women who oftentimes fail to immediately respond to medical treatments. In short, saving the “weaker sex” from chronic pain is trying. [10] Accordingly, some physicians find treating patients with fibromyalgia “tremendously frustrating” and a “thankless task.” [4, 12, 13]

Embodied Suffering

“Sometimes [doctors] take out their frustrations on the patients and blame the patients for the illnesses… There’s a long history of this in medicine.” [4]

Women do not just suffer from fibromyalgia itself; they suffer from the sexism related to attempting to find and receive appropriate medical care. One physician argued that chronic pain becomes “involved in a lifestyle mix,” and that all associated symptoms become prominent “when the individual focuses on herself and her discomfort.” [6] The author follows this statement with a more overtly sexist remark: “it is mostly women who fall into this category.” [6] Similarly, some physicians who treat chronic pain patients report not trusting their patients or their experiences of pain. [13, 14] It takes on average about five years for chronic pain patients like those with fibromyalgia to receive a proper diagnosis. [16]

The term “fibromyalgia personality” is sometimes used to stigmatize fibromyalgia patients as inherently irrational and hysterical. One physician said, “You immediately know they have [Fibromyalgia], often even before they say anything, just from the way they’re behaving and their personality.” [5] It is of no surprise, then, that women with medically unexplained disorders have reported being met with “skepticism,” “feeling rejected, ignored,” and being “blamed for their condition” by their physicians. Women experience illness in “delegitimizing and stigmatizing” ways because both their moral character and their mental health are frequently questioned by others, “doctors in particular.” [15]

The doctor-patient relationship in adversarial instances like these may devolve into one of scrutiny, distrust and disgust. This unique dismissal of women’s pain as irrational, emotional, psychological, immoral, and potentially deserved, is not surprising from a feminist perspective. [3, 4, 16, 17, 18] In the fibromyalgia community, it is referred to as the “credibility issue,” and its consequences to the afflicted may include: psychosocial problems, refusal to seek medical care, self-blame and loathing, worsening of condition, and suicide. [4, 11, 19] Fibromyalgia patients may become subject to physical and moral scrutiny from friends, family members, coworkers, and total strangers. [4, 17]

In short, women with fibromyalgia risk being cast as bad women. They may be perceived as any combination of ungrateful, lazy, hysterical, after disability benefits, and manipulative. [6] Because they inadvertently challenge common societal narratives about physician roles, they risk causing their healthcare providers to feel frustrated, delegitimized, and even emasculated. We should therefore not be surprised that living with fibromyalgia can be “re-[traumatizing].” [19] Disease, gender and society interact, forcing those with fibromyalgia to embody the role of deviant womanhood.

Person Prestige

“According to a National Pain Report survey conducted last year, a staggering 90 percent of women with chronic pain feel that the health care system discriminates against them.” [11]

A quick, informal survey of my Facebook friends revealed a startling quantity of stories about pain dismissal and credibility challenges in biomedical settings. Regardless of illness type, many of my friends had been made to feel like they had become problems, rather than merely had problems: their cases were viewed as atypical, uninteresting, or altogether fake; their very beings were criticized. Thankfully, after relentlessly advocating for themselves, most of them eventually found affirmative, compassionate and appropriate healthcare services elsewhere. But what happens to those who cannot advocate for themselves? How do our collective societal values increase suffering for the sick and injured?

Stigma is unjust because it uniquely punishes already-marginalized people by treating them as social deviants. It enables xenophobia in society and ultimately jeopardizes population health. We see the effects of stigma in the Norwegian researchers’ disease prestige hierarchy list, too, when reviewing diseases with the lowest prestige: anxiety neurosis, hepatocirrhosis (cirrhosis of the liver), depressive neurosis, schizophrenia, anorexia, and AIDS. [7] When we consider the patient populations at risk for these diseases, it appears that the prestige of the patient matters when determining disease hierarchy: disease prestige impacts patient prestige, and patient prestige impacts disease prestige. We have seen this most disturbingly play out in the ongoing HIV/AIDS crisis, where patient nationality, race and ethnicity, sexual orientation, gender identity, age, profession, religion, economic status and other identities intersect to determine public sympathy for the afflicted and public support for global health interventions.

Whether we are discussing syphilis, myocardial infarction, breast cancer, substance abuse disorders, or any other condition, patient identity need not exacerbate patient suffering. There is room for improvement. We can start by challenging harmful notions of physician prestige, fighting problematic ideas of disease prestige, and believing that neither pain nor person is invisible.

Rosemary Talbot Behmer Hansen is an M.D. candidate at Rutgers New Jersey Medical School in Newark, New Jersey. She has both an M.A. in Bioethics and an M.P.H. with a major in Health Policy & Management from Case Western Reserve University (May, 2018) and her academic interests include issues of patient autonomy and medical decision-making. She lives in the Greater New York City area with her husband Ryan Behmer Hansen and dog, Franklin.


References

  1. Vail N. 6 absurd ways modern medicine fails because of sexism. Cracked.
  2. Edelberg D. Fibromyalgia confounds allopathic habits of mind. AMA J Ethics. 2012; 14(4):305-309.
  3. Stetka B. Fibromyalgia: Maligned, misunderstood and (finally) treatable. Scientific American. Published 2014. Accessed May 31, 2018.
  4. Williams I. Why fibromyalgia has a credibility problem. Health.com. Published 2016. Accessed May 31, 2018.
  5. Oldfield M. “It’s not all in my head. The pain I feel is real”: How moral judgement marginalizes women with fibromyalgia in Canadian health care. Womens Heal Urban Life. 2013;12(1):39-60.
  6. Ehrlich GE. Pain is real; Fibromyalgia isn’t. J Rheumatol. 2003;30(8):1666-1667.
  7. Album, D. & Westin S. Do diseases have a prestige hierarchy? A survey among physicians and medical students. Soc Sci Med. 2008;66(1):182-188.
  8.   Stone L. When you’re sick, the support you’ll get may depend on the “worth” of your disease. The Conversation. Published 2018. Accessed May 31, 2018.
  9.   Ng BK. Disease prestige: A case of hierarchy in medical conditions and specialties. MIMS Today. https://today.mims.com/a-case-of-hierarchy-in-medical-conditions-and-specialities. Published 2017. Accessed May 31, 2018.
  10.   O’Connor MI. The woman patient: Is her voice heard? Sharing Mayo Clinic. Published 2013. Accessed May 31, 2018.
  11.   Culp-Ressler T. When gender stereotypes become a serious hazard to women’s health. ThinkProgress.
  12.   Gordon DA. Fibromyalgia–Real or imagined? J Rheumatol. 2003;30(8):1665-1666.
  13.   Matthias, M. S., Parpart, A. L., Nyland, K. A., Huffman, M. A., Stubbs, D. L., Sargent, C. & Blair MJ. The patient-provider relationship in chronic pain care: Providers’ perspectives. Pain Med. 2010;11(11):1688-1697.
  14.   Associates PDHR. Americans Talk about Pain; A Survey among Adults Nationwide.; 2003.
  15.   Werner, A. & Malterud K. It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Soc Sci Med. 2003;57(8):1409-1419.
  16.   Dusenbery M. Is medicine’s gender bias killing young women? Pacific Standard.
  17.   Smith SE. Chronic pain is overwhelmingly experienced by women– So why do they have trouble getting care for it? Rewire.News.
  18.   Tasca, C., Rapetti, M., Carta, M. G. & Fadda B. Women and hysteria in the history of mental health. Clin Pr Epidemiol Ment Heal. 2012;(8):110-119. doi:10.2174/1745017901208010110.
  19.   Swannell C. Prestige: The tyranny of the hierarchy of disease. DoctorPortal.com. Published 2018. Accessed May 31, 2018.
  20. Camberlain, M. & Myhal G. Are we profiling patients with fibromyalgia? Pain Res Manag. 2009;14(3):238.

Feature: #MeToo, Mental health, Revenge Porn, and the Nineteenth Century

by Katherine Anne Gilbert

In the wake of Tarana Burke’s #MeToo, movement, studies showing the connection between sexual harassment, assault and psychological suffering have received increasing attention. The collective weight carried by women who experience these violations is heavy. As women continue to come forward and share their narratives via journalism and social media, mental health scholars and practitioners have established the deep toll placed on women by continued sexual violence and harassment. The psychological effects may manifest as anxiety, depression, and “data suggests that anywhere from 30 to 80 percent of sexual assault survivors develop PTSD.” Through what is called “somatizing,” the trauma can manifest in physical symptoms: “muscle aches, headaches . . . chronic physical health problems such as high blood pressure” and even “heart issues.” Considering recent data collections, including one that found 81% of women have experienced sexual harassment, we can say with confidence that a large number of women are forced to manage the mental and physical health effects created by a society that perpetuates gender inequality.

What might contemporary conversations about #metoo have to do with my own area of study, Victorian literature? Recently, some Victorianists have argued that in many ways we are still Victorians; by this they mean that many of the issues we are grappling with right now have points of germination in the nineteenth century: climate change begins with industrialization and the rise of capitalism; residual effects of British colonialism and empire reach like tentacles across time; debates about liberalism and conservatism find their roots in polemics as far back as those by Edmund Burke, Mary Wollstonecraft, and mid-nineteenth century writings by J.S. Mill; and in the U.S., our grappling with racism and policing is contextualized by our inability to come to terms with the legacy of slavery.

Undoubtedly, contemporary sexual harassment and assault are about the exercise of power over others, but part and parcel of that dynamic are attention to the arrangement of bodies in space, and claims about whose bodies are allowed to exist in what spaces at what times. Here too, a turn to the nineteenth century helps us to see how current sexual violence and harassment can be more completely understood through the enshrinement of the public/private divide during industrialization in the nineteenth century. While men and women were associated with different spaces before then, the rise in industrialization, cities, and commutes to and from work ushered in a new spatial organization of bodies in the Victorian period. Previously, the predominance of agricultural work meant that families frequently labored in one space; while different members of a family might have a variety of roles in a rural economy, the family, as a whole, lived and worked in one location.

During the rise in industrialization and capitalism, men left homes in the morning and returned at night after having executed their professional duties in urban spaces. Women, then, became cast as idealized “angels” at home who set and maintained morality in a system largely used to raise children but also conceptualized women as needing to be shielded from the more brutal, fast-paced economic forces of the city. Middle-class white women in particular were cast as fonts of purity that created moral sanctuaries to which men, after a long day at work, could return home for moral repair. Coventry Patmore famously enshrined a married woman’s role as “The Angel in the House” in an 1854 narrative poem of the same name and John Ruskin wrote of a woman’s domain as a sort of domestic royalty in his popular 1865 Sesame and Lilies.

One can draw a line between such texts and recent discussions of how women should be viewed in the political world and in the office: In 2008, then-senator Hilary Clinton struggled to be heard during a 2008 speech due to the presence of a male attendee who held a sign that said “Iron my shirt,” as he shouted the same, repeatedly, over her attempts to articulate policy ideas to her audience. The “Pence rule,” or the idea that a married man cannot have a dinner with a woman other than his wife, even to discuss business, as well as John Kelly’s statement that when he was growing up, “women were sacred,” (or, Patmore-eque “Angels”) operate along similar lines. Pence and Kelly’s ideas about morality insist on supposed protections for women that in fact disempower women, box them in, shut them out, and shut them down.

Many of the reforms that were passed in the nineteenth century focused on married women. This is undoubtedly due to the especially dangerous effects of the law of coverture, which subsumed the legal identity of women under that of her husband. When women married, they and their husband became one, and that “one” was the husband. As a “femme covert” a married woman could not control her own earnings or enter into contracts, for example. She was not an independent legal person, but in many ways, a legal child.

The public/private divide continues to operate in the lives of women from a range of racial and national backgrounds. Women’s bodies, as do all bodies, take up space; legal and social control of women entails forms of control of those bodies. We might think of school dress codes that insist girls’ bodies are distractions that hinder boys’ learning in public schools. Notably, today, those who continue to behave as if women’s bodies do not belong in public spaces, through, for example, street harassment, also are part of a larger ideology that insists that women’s bodies be asserted into public spaces, against their will, with techniques such as revenge porn and online body shaming through trolling.

One recent and most dystopic example of this is the proposal that women’s bodies be part of a forced “redistribution” of sex to keep “incels” (involuntarily celibate men) from exploding into murderous rages. In this schema, women’s bodies become property of the state and of lonely men whose sadness must be repaired through rape of women. What might more often be considered private and intimate acts become robotic distributions of female bodies through public and state power.

Revenge porn is an especially disturbing, though conceptually useful way of thinking about the tenacity of the public/private organizing principle as it threads its way from the Victorian period to 2018. One recent study on the mental health effects of revenge porn found that “women are much more likely to be pressured to send nude photographs, and they are also much more likely to be victims of revenge pornography. According to the Cyber Civil Rights Initiative, as many as 90 percent of victims are women.” Women victims whose photographs have been uploaded to revenge porn websites are then often stalked and harassed by viewers, as their contact information is sometimes included by the perpetrators. Recent studies show that, like women who experience harassment and assault, women who are victims of revenge porn also suffer long-term mental health effects: “The humiliation, powerlessness, and permanence . . . leave victims engaged in a lifelong battle to preserve their integrity. Consequently, victims of revenge pornography suffer from similar enduring mental health effects as described by victims of child pornography, such as depression, withdrawal, low self-esteem, and feelings of worthlessness.” Another study noted the frequency of PTSD in victims of revenge porn, too.

The tenacity of the public/private divide now means that women’s bodies are either restricted from access to the public sphere, when women insist on such access through their own will, but then also forced into the public sphere, when they lack control over whether or not their images, and discussion of their bodies, should appear there. The insistence that women belong in the private sphere is one side of the same coin that forces them into the public sphere without their consent.

In each case, women are reminded that they still do not have the right to exist in public spaces free from harassment and terror. Women’s attempts to cross over into the public sphere, in politics, business, Hollywood, and more, are met with the suggestion that they lack morality, and as such, their bodies must be exposed as immoral corpora. While online versions of such tactics are new due to the emergence of new technologies, the underlying principle reveals that we continue to have much in common with Victorian understandings of whose bodies are allowed to exist in public spaces and what possible punishments lie in wait for women who dare to make their own choices about where, why, and how their bodies will exist in space.