All the Pain Money Can Buy: How Far We Haven’t Come with Pain Control

Editor Xan Nowakowski, whose own experiences with a painful chronic disease have inspired much of their own research, reflects on seven years of scholarship on clinical pain management, and what they have learned from lived experience along the way.

When I started doing pain management research as a graduate student at Rutgers in 2008, it was an exciting time for the field. New technologies as well as off-label uses of less recent ones like the Interstim device seemed to hold tremendous promise, and intrathecal pumps and ambulatory catheters were achieving significant penetrance among a variety of service populations. Especially in the world of post-surgical pain management, new reasons to envision a bright future were cropping up all the time.

In the long-term pain management field, pharmaceutical companies were racing to develop drugs to address underlying causes of chronic pain. At the time, I was taking one of those drugs—Elmiron, the much-lauded “wonder drug” for management of interstitial cystitis. Those of us with chronic conditions dared to hope a bit too, even as we rode the capricious waves of hope and despair that living with persistent illness always seems to bring.

The summer of 2009 was a watershed time for me. I was completing my Master of Public Health fieldwork, preparing to finish the program, and thinking about my next moves. Though I did not know it at the time, within six months of completing my research I would make the life-changing decision to move to Florida. I would leave behind the place where chronic pain had brought me to the brink of suicide, and where I had learned firsthand why pain and post-traumatic stress so often go hand in hand.

I drove all around New Jersey that summer, interviewing hospital providers and administrators about the pain management modalities they provided, and the barriers they encountered in offering alternatives to opioid narcotics. One of the most instructive aspects of my own experience with chronic pain had been the Scylla and Charybdis choice I faced for over a decade, trying to reconcile my fears of opioid dependency and functional disability with my equally pervasive fears of ultimately losing my will to continue living with intractable agony. I would later learn that I was hardly alone in these fears.

The hospital personnel I interviewed were many, representing about 35 percent of all hospitals in New Jersey. They held a variety of advanced degrees and came from a variety of backgrounds, with differences in beliefs and practices that reflected the variations in their training. But what stood out most to me was the levels and awareness and compassion I consistently observed in the people I interviewed. Every single person I talked to viewed chronic pain as a serious problem worthy of serious clinical attention.

Likewise, each and every one of them reported feeling frustrated with insurance companies’ lack of willingness to pay for non-opioid treatment modalities. According to my study participants, this was the most prominent barrier to providing what they viewed as truly effective and responsive pain management in accordance with national guidelines. We shared those frustrations—I told my story to many of those providers after we wrapped up our interviews, and learned a lot of things “off the record” that have informed much of the work I have done since.

The people I interviewed shared my frustrations over care practices not being able to keep pace with scientific innovations as a result of funding barriers. Predictably, these problems were often worst in hospitals with a high charity care population. Some of these hospitals found creative solutions for their patients with chronic pain from conditions like sickle cell anemia by working with local Federally Qualified Health Centers. But as often happens in low-resource communities, need for these services greatly exceeded clinics’ capacity to provide them.

We still had plenty of reasons to hope, though. With so many new medications and technologies hitting the market and starting to permeate best practice recommendations for clinical care, there was ample justification for thinking about a pipeline effect in which impactful innovations would reach more and more health care users with each passing year, becoming more affordable in the process. The promise of affordable health care legislation from the Obama administration gave additional weight to this vision.

The summer of 2015 is now drawing to a close, and once again I am wrapping up a study on clinical pain management. This time I had a partner in research and less driving to do, and a ready team of MPH students and undergraduate research assistants eager to assist. We conducted semi-structured interviews with university health care providers, working excitedly to fill a gaping hole in the published literature on pain management. We had a wonderful experience getting to know one another and completing our study, and I loved every moment of watching my students shine as they enhanced their key informant interviewing and qualitative content analysis skills.

Yet as we finish coding our data and begin writing up our findings, my happiness has become increasingly bittersweet. My students’ achievements mean everything to me, and always will. Their thoroughness, however, has proven to be a double-edged sword. What my students unearthed in their probing of our study participants was an old familiar tale that rang all too true: lots of good options offered up by science, but no functional translation of these modalities into affordable clinical care for people with chronic pain.

It is 2015, and I still have to carry a bottle of opioid medication everywhere I go. This mostly achieves the purpose of quelling the crippling fear of not being able to control my pain if nothing else works. Indeed, the literature suggests that often the most helpful aspect of opioid medications is their ability to confer a sense of mastery to people who live with painful conditions. I feel this restoration of personal agency quite a bit when sitting in relative comfort as I am now, typing away on an article or blog post that makes me feel like my own experiences are gifts that yield professional insight.

I do not feel it as much during those times every few weeks when I lie curled up beneath my desk, praying into empty air that my medication will kick in. I do not feel it when phenazopyridine stains the edges of the toilet bowl, or when bleach fumes rise into my nostrils as I wipe away the evidence of how far we haven’t come in providing real options for people like me.   I especially do not feel it when the phenazopyridine fails to enhance the effect of the diphenhydramine I have already taken, and I have to reach for the bottle of narcotic tablets that I still associate with defeat.

I also do not feel any mastery when I remember why I stopped taking Elmiron—the surreal moment of standing in my parents’ kitchen holding an absurdly dainty gingham-topped jam jar of my own urine, staring in suspicion at the rubbery threads of unidentifiable discharge that had started appearing with alarming frequency. I had a moment where I realized that urinating through a tea strainer to catch “specimens” was about my limit. One is perceived as deviant enough when one lives with a mysterious autoimmune disease, even without making a habit of urinating in jars to inspect the contents.

I should interject that these shortcomings in the field are not entirely the fault of insurance companies. As the Affordable Care Act was being developed and organizations like the Institute of Medicine were continuing to refine their recommendations for best practices in clinical pain control, a storm was brewing that set the field of innovative chronic pain management back substantially. The retraction of some two dozen published studies on multimodal analgesia crippled other clinicians’ efforts to incorporate integrative approaches using new therapies into their own programs of care. As predicted, the field has yet to recover fully.

Of course, when you live with a painful chronic disease, you learn quickly that you never truly recover. Your body changes; your life changes; and your brain changes right along with them. Illness management becomes the name of the game—one that often feels like Whac-a-Mole rather than a game in which one defeats a series of bosses and wins. Good science, conducted by people with curious minds and compassionate hearts, is one of the best weapons we have in this game. But abuses of research ethics—even by scientists who may have the best of intentions in mind—can leave us fighting fisticuffs against enemies we cannot hope to vanquish on our own.

Later this fall, I will be doing a follow-up post here about the 2009 multimodal analgesia scandal and its broader implications for ethics in medical research, adding a perspective of lived experience to the insights offered by other clinicians as they reacted to the news about Dr. Scott Reuben’s research fabrications. In the meantime, I know that when many of you Write Where It Hurts, you are doing so in the most concrete and literal sense possible! So I encourage all of our readers to share stories and insights about pain management, including any research you have done on the topic and any lived experiences that inform your work.

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What’s in a Name: On Bi and Pan Sexualities

A few weeks ago, I posted two pieces on Conditionally Accepted (see here and here) and one here on Write Where It Hurts exploring bisexuality in varied contexts and defined in varied ways. At the same time, Lain Mathers posted a piece here on Write Where It Hurts examining the ways these meanings and conflicts around bisexuality play out in lesbian/gay and heterosexual spaces. In this post, I want to reflect upon a question that regularly emerged in response to these posts – the relationship between bisexuality and pansexuality.

As I noted in the midst of some of the productive conversations that emerged in comment threads, the term pansexuality or pansexual (like bisexual, bisexuality and other fluid identity terms) is often rife with conflict. In my experience, this conflict arises as a result of the use of the term in three distinct ways by varied individuals and groups.

Before discussing these uses and the conflicts they contain, however, a little her-his-our-story may be useful. Initially, pansexuality was not coined as an identity term (i.e., like bi, homo, and hetero sexualities), but rather as a statement (often attributed to Freud and others at the time) on the presumed innate sexual desire of all humans. This elaboration is automatically problematic because it erases asexual existence and experience, but thankfully, this is not how the term is generally used at present. Rather, these days pansexuality is generally used as a form of sexual identification that dates back (at least) 3 or 4 decades. In this elaboration, it was initially established as a type or form of bisexuality wherein the person in question did not factor genital possession in the establishment of sexual desire and practice. In fact, many bisexual people I have known (myself included) use this term interchangeably with bisexual, fluid, and Queer among others to denote experience and identification with this end (i.e., lack of concern for genitals in matters of attraction and / or sexual activity and / or romance) of the bisexual spectrum (i.e., I may say I’m bi, pan, fluid, and Queer within a few breaths of the same conversation since for me (and historically) this is like saying I like guitars, fender guitars, electric guitars, acoustic guitars, and bass guitars = I like guitars and here are certain types of guitars that especially fit my needs).

When this identification practice emerged, bisexuality (even in general use) typically referred to those people attracted to their own body and / or genital type and the bodies and genital types of others who were not the same as their own (i.e., these were people who engaged in both homo and hetero sexualities, therefore bisexual). Within this umbrella definition, some bisexuals were (1) attracted to more than one type of genital set or sex, some bisexuals were (2) attracted to more than one type of physical form (i.e., size, shape, race, sex, gender presentation, etc), some bisexuals (like me) were (3) attracted to all types of bodies (i.e., like mine and not like mine) whether or not they looked like their own body type, and some bisexuals (4) fluctuated along varied points of this spectrum throughout their lives. Within this spectrum of possibilities between self (1) and other (2) body types (i.e., bisexuality) and between homo (1) and hetero (2) sexualities, pansexual referred to the third type noted above (as did ambisexual, polysexual, and other terms).

In fact, this spectrum still finds voice within bisexual communities and umbrella designations, and remains the most common definition of bisexuality I have seen among bisexual identified people. Other terms, such as fluid (noted as number 4 above), have even been established to make sense of bisexual people’s locations within this spectrum / umbrella. However, the last few decades witnessed systematic erasure and marginalization of bisexuality within lesbian/gay and heterosexual communities predicated upon transforming the word “bi” from an expression of two ends of a complex spectrum of human engagement and desire preference into a simplified binary articulation of the male/female genital binary homo and hetero sex norms are built upon. Instead of bisexual referring to both homo and hetero sexualities, people began linking it to sex / gender binaries to essentialize homo and hetero sexuality. To put this into perspective, imagine if we began saying homo and hetero sexual meant one sex only instead of preferences for a type of sexual engagement – you would have the same thing that has been done to bisexuality over the past few decades, and it would likely sound as silly to homo and hetero sexual folks as it does to most bisexual folks aware of this history. In the process of this extermination of bisexual complexity in the hetero-homo imagination, some people (not surprisingly) began to identify as pansexual in order to avoid biphobia and monosexism within lesbian/gay/straight communities.

It is within this context that (at least) three uses of pansexuality have emerged as regular components of normative or mainstream sexual politics. In the first case, people adopt a more traditional interpretation of pansexuality as a type of bisexuality that refers to sexual attraction and / or engagement regardless of genital consideration. In such cases, pansexuals stand along side other bisexual people against monosexism and biphobia (and in many cases hetero and cis sexism), sometimes refer to themselves as bi-pansexuals or pan-bisexuals though just as often simply say they are pansexual and / or bisexual (or any other terms within the bi spectrum) in varied contexts and with varied others, and often find comfort and security in larger bi communities while working to provide the same for other bi people in lesbian/gay/straight communities. In such cases, pansexuality is not problematic at all – it is simply someone exercising their self and bodily autonomy to identity in the way that best fits their experiences and desires. They are harming no one, and often, as members of larger bi communities, helping others. In such cases, their identification efforts are similar to working class people who prefer homosexual or heterosexual when identifying themselves, but do not have issues with or fight against middle class people who prefer to use the terms gay or lesbian or straight to identify themselves – they are merely identifying as they see fit within a larger umbrella of binary sexual (homo and / or hetero) others who they support and embrace.

The second most common way I see pansexuality used, however, is deeply problematic. In this case, people identify as pansexual to distance themselves from bisexual communities and avoid the marginalization of these communities within lesbian/gay/straight (i.e., binary sexual) communities. In such cases, these people will call themselves pansexual in a positive way, but then repeat biphobic notions of binary bisexualities used to marginalize bisexuality (however termed) within gay/lesbian/straight spaces. In so doing, they will generally receive affirmation and better treatment from binary sexual communities (lesbian/gay or straight identified) in exchange for supporting monosexism (i.e., sexual binaries) – a process referred to as trading power for patronage in inequality studies (i.e., the process wherein a subordinate accepts subordination on certain terms to gain a more comfortable location within a given matrix of inequality). In such cases, pansexuality is incredibly problematic because it is used as a form of sexual inequality reproduction that further marginalizes other forms of bisexuality and non-binary existence. In such cases, pansexual identification efforts are similar to some working class people who prefer homosexual or heterosexual to identify themselves, and then say those using the terms like gay or lesbian or straight are misguided or wrong or not “really” authentic and / or middle class and above people who prefer the terms like gay and lesbian and straight, and then say those using homosexual or other terms are misguided or wrong or automatically hurting them or not “really” authentic – they are using their own preferred terminology as a mechanism for demonizing people who prefer other terms for describing similar (in many cases the exact same) sexual desires and identities.

Within the aforementioned uses of pansexuality, there lies another common use that actually demonstrates the importance of the first two patterns. In this case, people grow up in spaces and communities devoid of bisexual our-his-her-story and understanding, and as a result, learn binary sexual (lesbian/gay/straight) perspectives of the world only. In such cases, they are taught horror stories and insults and jokes about bisexuality that reproduce monosexism and biphobia, and then adopt pansexuality as a term for themselves because they don’t look like or want to be like the negative depictions they are taught by those who benefit from monosexism. In such cases, they rarely know that pansexuality emerged as a form of bisexual identification, or the patterns of ongoing bi-erasure, marginalization, and just plain fear embedded within many contemporary binary sexual (lesbian/gay and straight) communities. Without access to this backstory, they simply identify in the way that appears “acceptable” to the people around them and embrace the biphobia promoted in the same circles. In such cases, pansexuality is once again problematic for the same reasons noted above, but it is nuanced because some of these people will change their behaviors and / or identities and / or politics when they meet bisexual communities, learn about bi-pan-Queer-fluid backstories, and / or continue to encounter marginalization (though often in a more polite form) within lesbian/gay/straight circles due to their non-binary sexual desires and practices. Others, however, will have grown accustomed to the comfort achieved by contributing to bi oppression, and thus slide into pattern two noted above over time. Finally, still more may never become acquainted with bi-pan-Queer-fluid backstories, perspectives, and / or communities, and remain ignorant of these dynamics or the ways their own self presentation and politics speak to these long term patterns. In such cases, pansexual identification efforts are similar to people who only grow up hearing heterosexual perspectives on the world, and internalize these depictions of dangerous or scary gay/lesbian/homosexual people and wrestle with these depictions whether or not they ever encounter gay/lesbian/homosexual backstories, perspectives, or communities in their own lives – they adopt terminology (i.e., I do this, but I’m not gay/lesbian/homosexual/bisexual/pansexual/etc) due to the fear, guilt and shame they were taught by others seeking to preserve their own position within binary sexual politics and power structures.

With these patterns in mind, I return to the conflicted positions of contemporary pansexual identification. As suggested in my use of gay/lesbian/homosexual conflicts I’ve observed over the years, the use of pansexuality as an identification term is complicated, nuanced, and not a new issue for sexual minority communities (i.e., one only needs to look back at previous conflicts between homophile and gay identifications or conflicts over lesbian and gay woman to see the exact same patterns play out in binary sexual minority (i.e., lesbian/gay) communities in the past). As a result, I tend to interpret these conflicts in much the same way I do in relation to the gay/lesbian/homosexual conflicts noted above.  As Queer scholars have long suggested, I focus on the actions tied to the label instead of obsessing over whether or not someone identifies in a “specific” way (i.e., I focus on sexual justice instead of identity politics).

As such, if someone identifies as pansexual while embracing and working for other types of bisexual people, then I see no problem, welcome them to the club, and stand beside them in any way I can. This is the same way I approach bisexual, lesbian/gay, heterosexual, or asexual people – if they identify as their chosen term while embracing equality for all beings of varied sexual identifications and working for such equality, I want to support them in all ways I can.

If, on the other hand, someone identifies as pansexual while demonizing and working against (intentionally or otherwise) other types of bisexual people, then I see a problem, oppose them in any way I can, and call them out on their biphobia, monosexism, and / or heterosexism. This is the same way I approach bisexual, lesbian/gay, heterosexual or asexual people – if they identify as their chosen term while demonizing other beings of one or more sexual identifications and working against such people, they are facilitators the pain of many other people, and I oppose them in all the ways I can.

I take a similar approach – no matter someone’s sexual identification – in relation to cissexism, racism, sexism, ablism, classism, colorism, nationalism, religious oppression (maybe religism?), and other forms of inequality. If the person in question is working to oppose these systems that cause so many people so much pain, then I stand with them whether our identities match or not and / or whether or not I agree with their chosen identification terms, but if they (intentionally or otherwise) feed these systems I stand against them, do my best to call them out, monitor myself to make sure I don’t slip into such practice or catch any practices like this in my own activities I’m not aware of yet, and otherwise seek to end (in any way I can with my one life) these systems and their power.

As a result, my ultimate suggestion in regards to differential sexual identification terms is to focus on equality and justice for all beings regardless of sexual identification. Do you identify and act in ways that support the equality of others? Do you identify and act against monosexism, heterosexism, biphobia, homophobia, and other forms of sexual violence and marginalization? Do you identify and act in ways that support the right of other people to exercise autonomy in self identification and activity even when such autonomy leads them to prefer different identifications and practices than your own? Do you identify and act in ways that support consent, bodily autonomy for all, sexual freedom for all, and the dignity and respect of all people who embrace and support these ideals? For me, these are the important questions regardless of the term one prefers to use to describe their own sexual practices and desires.

J. Sumerau

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Teaching Where It Hurts

In this post, Xan Nowakowski and J. Sumerau reflect on their experiences personalizing sociology in the classroom (see their recently published Teaching Sociology article on this topic here) in hopes of facilitating dialogue and debate about the benefits and limitations of incorporating professor biographies into sociological curricula.

As people who write about, teach, study, and engage in advocacy related to chronic health conditions, social inequalities, sexual and gender experiences and identities, and managing trauma, we have become intimately aware of the potential personal experience and stories can have for facilitating learning and motivating concrete action among our students, colleagues, and communities. At the same time, we know all too well that structural factors regularly limit who can say what in classrooms in much the same way they do beyond the academy, and that academic traditions have long privileged rational or remote notions of instruction over emotional and personalized approaches. As we did in our recently published Teaching Sociology article, we would like to encourage our colleagues to consider these options and structural patterns in hopes of spurring dialogue about the potential of using our own experiences within inequitable structures to help students and colleagues see the pain created by social inequalities on a more personal level.

As we did with the establishment of ongoing conference sessions, an upcoming book project, and the creation of this site, our focus here lies in the potential of writing (or researching, teaching and advocating) where it hurts. When Xan shares stories of almost dying or struggles with doctors and other medical professionals unfamiliar with what to do to treat their chronic physical health conditions, for example, students come face to face with the results of our flawed healthcare system in the midst of their own lives and worldviews. Likewise, when J. shares stories of being physically assaulted for daring to go on a date with a cute boy or watching a lover die amidst both caring and supportive and judgmental and hateful medical professionals, students witness the concrete tears, pain, and sorrow that come from experiences within interlocking systems of inequality embedded throughout our society. In these and many other cases, we utilize our own pain to pull social inequality out of the abstract and into the actual lived experiences of the students and colleagues who interact with us.

As we advocate in our recent article and practice in our own classes and on this site, we seek to personalize social inequalities for our students. Rather than things they read or hear about in class that happen somewhere “out there” unseen to them, we use our own experience and narratives shared by other people occupying marginalized positions or experiencing traumatic events to translate “out there” into personal realities with actual faces, personalities, voices, and bodies in the eyes of students and colleagues. In fact, both students and colleagues regularly experience their own organic emotional reactions to social patterns in the process, and tend to very quickly make the link that if it could happen to “their professor” then it could happen to “them” or “their loved ones” as well. Not surprisingly, such realizations very quickly transform societal patterns of inequality into anything but abstract concepts. As a result, our willingness to talk about the pain or teach where it hurts often translates into incredibly passionate and engaged rooms full of students especially willing to discuss and consider concrete steps they can take toward more positive social relations.

As we note in our recent article, we developed these approaches – individually and collectively – over time by building the entirety of our class offerings around discussion, consent, and application of scholarly materials to personal experience. In terms of discussion, for example, our courses are organized – from the first to the last day – around personal or collected emotional narratives that we share with students in relation to each course reading and topic. In so doing, we ritualize personal narratives within the class so students become accustomed to this form of interaction and dialogue throughout the course. Likewise, our courses are built upon an emphasis on consent wherein students are never required to disclose their own personal experiences or use ours in their work, but they are allowed to do both of these things on any assignment or in any class meeting where such things are relevant to the given assignment or class topic or assigned material. We thus remove grading from the equation by giving students ample resources to do just as well in the class no matter their experience and / or interpretation of the personal content we or other students share. Finally, we strategically link every scholarly piece or activity in a given class to specific personalized examples so students are able to always see the real world (or applied) aspects of the materials we cover in their own lives, in our lives, and / or in the lives of other people. Our experiences – as well as some initial negative experiences others have had when first attempting styles like our own without these ingredients – tell us these (and maybe other) efforts to create classrooms where students get used to and feel safe with vulnerability may be essential ingredients in personalizing instruction.

With all this information in mind, we invite dialogue, commentary and discussion on the possibility of personalizing scholarly work through teaching and other methods. Whether one seeks to join this conversation on this site or in relation to our call in Teaching Sociology or in any other space, we invite and appreciate other educator’s perspectives on these matters. To this end, ask yourself what ways you do or could personalize sociology? What might be the benefits or limitations of doing so? What institutional and structural steps might we need to take to serve and protect those who share their pain in the service of education and advocacy by and for their students and other colleagues? While we will not pretend to have some “right” or “absolute” answers to these questions, our experiences to date within and beyond classrooms tell us these questions might be incredibly important and useful in many ways.

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