Category Archives: Mental Health

The Dreaded Should

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In this post, J. Sumerau reflects on interactions with other academics who experience considerable stress due to structural and interpersonal conditions encouraging them to focus on “what they should be doing” instead of what they have accomplished. 

I “should” be working on project x. I “should” be doing work-related task y. I “should” be preparing for academic meeting, gathering, conference z. I “should” be more productive in comparison to this person, that goal, or this norm. I “should” be doing more in my work about this issue or that problem or this population or that concern.

I should…

I should…

I should…

“Should” is a word I find myself hearing rather often from colleagues in my career to date, and it often carries with it an expectation that one is not doing enough in some way, shape, or form. In such cases, people I happen to know are hard working, incredibly talented, deeply committed, and quite impressive by any measure I can come up with downplay whatever they are doing, accomplishing, or achieving at a given moment based on what more they feel they “should” be doing, accomplishing, or achieving at that moment.

I should note that I am not in any way disparaging the people in question. Rather, from what I can tell, the dreaded should – as I call – is something they feel and experience deeply that causes them pain, turmoil, or other forms of anxiety and stress. I further recognize, as others have noted, that this “shoulding” is encouraged in academic contexts as well as broader capitalistic contexts. People are constantly exposed to messages suggesting they are not doing enough, requirements that are often incredibly vague and subject to interpretation, and very real fears concerning job security, opportunities, and resources in the academy. Put simply, I am not knocking the people who feel this way, but rather I find it quite impressive that they manage to do so well while feeling these things on a daily basis. For me, their management of such feelings demonstrates a special type of strength wherein one feels regularly that they are losing a game, and yet somehow manages to continue on, do solid work, and inspire and connect with others.

At the same time, as someone who – thus far it appears – is immune to “shoulding” or thoughts about what I “should” be doing, I think this is a pattern that should be noted, discussed, and recognized because the effects of such stress on people likely – and from what I’ve seen empirically do – take an incredible toll on their happiness, health, and well being. In many cases, for example, I see people who experience their lives in ways where “I should be doing x” overshadows all the things they are doing, takes them away from important self care, and / or leaves them constantly feeling like nothing will ever be good enough. This is a recipe for negative outcomes, and yet it is encouraged in academic fields in many cases.  I cannot pretend to understand what it is like to feel this way – I tend to live in the moment to the point where even when I need to plan for the future I don’t do so all that well – but I wanted to talk about how these patterns feel or appear to me as I often serve as a source of support for many people who experience such feelings.  In many cases, I am lucky enough to be helpful to them in such cases, but in so doing, I am continuously struck by how powerful and damaging “should” can be in the current academic climate.

As such, I wanted to focus here on what we may miss when we become – or are trained to become – focused on “should” instead of “did” or “done.” If you are one who often feels like you “should” be doing more, take a moment and ask yourself what have I done instead. I ask this simple question all the time when colleagues start talking about how they “should” be doing something. Universally, the answers reveal a lot of accomplishments – for example, well I did submit that paper; well I did inspire that student; well I did something special for my partner, friend, or other loved one on Tuesday; well I did rest and relax this weekend; well I did get to the gym; well I did start outlining that grant; well I did just present at a conference last week; well I did some volunteer work or charity last month; well I did get better at “insert hobby here” this week; well I did come up with that new teaching technique I wanted to try this semester; well I did get to hang out with my partner, friends, kids, etc this week; or well I did think about a paper idea that could be really cool.

I could go on, but odds are you are doing lots of things – personally and / or professionally –  that you could be giving yourself credit for, and when I have asked people these questions and they have answered they often feel better at least for a little bit. Ask yourself how your life might be different if you could learn – or be trained to – focus on what you did do instead of what you “should” be doing. I’m not saying this will work for everyone, but in many cases, I have seen people realize that they accomplish far more than they have been giving themselves credit for.

I also think we need to look at where the dreaded “should” comes from in most cases I have seen. Whether it is comparisons to other people or norms within a given department or program, the dreaded “should” tends to arise from the conditions of contemporary academic life.  People face serious concerns about, for example, job security; time for lovers, friends, family, and self care; deadlines tied to advancement or even landing one of an increasingly small pool of decent paying jobs; and a culture that is focused on “what are you doing next” rather than “what have you already done.”  These pressures are greatly exacerbated for academics from marginalized backgrounds, and scholars in search of stable employment in the present market context.  Each of these factors – and many others – feed the idea that one is never quite good enough, should be constantly working toward something new to set one’s self apart or meet some (often vague) requirement for a job, for tenure, or other potential source of stability, and should spend as much time as possible working on that next thing that will make all the difference.

We see these patterns translate into a continuous series of “shoulds” and “somedays.”  When I have the job, then I’ll focus on my self care, my personal life, that study I want to do, or other factors, but for now, I should be x, y, and z.  When I have tenure, then I can have time for a family, take that trip I’ve been planning, write about what I really want to write about, or otherwise do something else, but for now, I should be x, y, and z.  These types of feelings and statements are not only commonplace among academics from what I can tell, but also understandable when we consider the broader context of academic norms, markets, and opportunities.  In all such cases, however, we are encouraged by these structural and interpersonal patterns to downplay right now and what we have achieved or are achieving for the sake of some future possibility.

As a result, I find myself wondering how much of right now people miss due to these patterns?  What might academia be like if we were encouraged to celebrate the moment instead of wishing for the future?  What might it be like if we came together against the broader cultural patterns that create these conditions?  Until such conditions can be changed, I also wonder what little things each of us may do in our own lives to ease the dreaded should we or our colleagues face, and help lessen the negative consequences of such patterns?

I’m not saying it would be easy to change the culture of “should” or the economic and political conditions that facilitate such stress, but I think we would all benefit if we came together, and gave ourselves and one another credit for the tremendous amount we all do accomplish personally, politically, and academically.  At the very least, I think we should talk about these issues, help each other as we face and experience these shared conditions in our own ways, and look for ways to create better conditions for ourselves and our colleagues individually and on a broader structural level.

The Anxiety Inscriptions

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In this post, Lain Mathers reflects on zir experiences managing anxiety and graduate study.  Lain Mathers is a doctoral student in Sociology at the University of Illinois Chicago and the Assistant Editor here at Write Where It Hurts.

It is mid-February as I begin writing this post. I am sitting in my apartment at my computer, my hands floating apprehensively above the keyboard. This is an odd sensation considering the fact that usually I type so intensely that the tiny plastic squares pop off of my laptop and onto the floor. I can feel the words I want to write just out of reach, curled up in the darker corners of my brain. I start to feel my chest tightening. “No, no not right now, please not right now,” I plead with my brain. We have a constant dialogue going, but as of late it’s taken on a significantly more dominant role in those dialogues. I’ve come to know this feeling. It’s like watching a tornado bellowing toward me while being fastened to the ground. As the tornado gets closer and closer, I eventually give in to the fact that I will be swept up in the debris of my own internal natural disaster.

At this point, generally, when I can feel a panic attack coming on, I resign to it. Over the past few months, I’ve learned just how neurological and out of my control those events are, and that trying to resist them (and largely failing to do so) leaves me feeling significantly more exhausted, disappointed, and angry than if I just allow myself to lean into them, tear apart a cardboard box or two, and then sit quietly on my couch and listen to Rilo Kiley, Neko Case, or The Yeah Yeah Yeahs in the calm after the storm.

See, I’ve known that I exhibit symptoms of Generalized Anxiety Disorder (or Generalized Anxiety Condition, as I prefer to call it, since I am working against the internalized and institutionalized stigma that the ways my brain operates means there is something inherently broken about me) for a while. I’ve had nervous ticks like compulsively picking at my skin since as early as I can remember. I can be thrown into a state of total disarray over a two-lined text message that I’m afraid someone other than the intended recipient will get a hold of. I’ve found large crowds overwhelming for a long time, and regularly get up two to three times throughout the night to make sure I’ve locked my doors (so that no one can get into my apartment) and unplugged all the kitchen appliances / blown out all the candles (so that a fire doesn’t start when I’m asleep). On my walks to school, I try to replay my morning routine to make sure I locked the doors and unplugged the appliances, and if I can’t remember I will often text message my roommate (if he is home) to make sure I did. If he is not home, it is not uncommon for me to turn around and walk back home to check (even if I am only a few blocks away from school). I have to get to the airport or train station at least three hours before my trips out of town because I am constantly terrified that some catastrophic event will happen that prevents me from getting where I’m supposed to be, and I am known to check the pockets in my jacket up to 15 times before leaving my house, sometimes one right after the other, to make sure I haven’t accidentally lost my wallet, keys, or cigarettes.

All of these are symptoms I’ve learned to manage over the years. For example, I just plan my travel accordingly; I allow an extra 30-45 minutes before I go to bed to check the locks and plugs. I say out loud to myself that I locked my door as I leave my house in the morning so when I run over my morning routine repeatedly on my way to school, my own verbal affirmation to myself will be part of that narrative. And, historically, when I would get the occasional panic attack (every couple of weeks or months), I would allow myself to just experience them and make sure to try to get as much sleep as possible and drink lots of water.

Writing has also been a huge part of my anxiety management. For the past 14 years, I have been writing regularly in a journal. Presently, I am in my 94th book, and have no plans of stopping any time soon. Since I was old enough to hold a pen writing has been the place where I can document the conversations I am constantly having with my brain about all of the things I need to be worrying about or else something terrible will happen. Putting them down on paper both makes them feel real and also like something I don’t have to carry around in my head anymore (it can get quite crowded in there). Writing is the place I go during panic attacks when nothing makes sense and I can’t even really form complete sentences, yet something about the feeling of pen on paper keeps me anchored to this world. Writing is, without a doubt, my most significant and important survival strategy when it comes to my mental health.

So what do I do when I can’t write through the anxiety? For those of us that find a deep comfort in writing, the inability to do it is incredibly destabilizing and painful. Recently, I had to confront this question in a wholly unsettling manner.

For people who live with chronic mental health conditions and/or trauma, we know that triggers can pop up and derail our routines for hours, days, weeks, even months. We also know that triggers can come in the most unexpected contexts and magnitudes. So, just because one is perhaps prepared to handle a situation that has previously triggered them doesn’t mean they’ll be able to negotiate a totally new trigger with as much familiarity.

So, when my understanding of my life was recently upset by conditions entirely outside of my control, and unlike any trigger I’ve previously experienced, I began having panic attacks on a daily basis. Not only did they start occurring more frequently, but also at unexpected times compared to when they’ve previously boiled to the surface. By this point, though, I had convinced myself that writing was all I needed to settle the rush of chemicals in my brain. “Just write it out, Lain, you’ve done this hundreds of times before.” Yet when I sat down to put the chaotic words on paper nothing flowed. I was in a state of mental and emotional quicksand, sinking faster than I could get my words to secure me to this world.

This was even more unsettling because writing is not something I just do for personal pleasure or comfort anymore, it is part of my livelihood. I began to tell myself elaborate stories about how I will never be able to write again and my career as a sociologist is doomed to failure. I walked nervously around my apartment, screamed into pillows, ripped apart cardboard boxes, and smoked countless cigarettes to try and dilute the quicksand feeling but nothing worked. It was in this moment that my brain and I began to have a serious conversation and one unlike any talk we’ve had before.

“Maybe you should talk to someone, Lain. Maybe you really need that.”

“No, brain, I can manage this. You’re just really fucking with me right now. It’ll pass.”

“Will it?”

“It has to.”

“How do you know? Maybe you’re just like this forever. Maybe I’ll never stop.”

“Maybe I should talk to someone.”

“Should you, though? How do you know it will help anything?”

“I don’t.”

Before making an appointment with a therapist, I held my journal and a pen in my hand, so desperately hopeful that I would have some kind of breakthrough by just acknowledging that my mental condition is real, that this experience is out of my control (despite how much control I like to believe I have over it). Nothing. So, I made the appointment and had a flurry of panic shortly after doing so.

Over the past few months, I’ve started more openly acknowledging that I not only live with generalized anxiety everyday, but also that it profoundly influences my life in ways I never expected it would. I am continually learning that maintaining anxiety management strategies, such as writing, is one important component in a large equation of other management mechanisms, such as (for me) therapy, medication, painting, supportive friends and loved ones, and plenty of alone time. I am still learning to overcome the stigma associated with chronic mental health conditions (especially one like anxiety, that many people don’t believe to be real), and the path to figuring all of this out certainly defies the American ideal of a linear progress narrative.

Yet, here I am, in late March, sitting at a café finishing this essay that you are presently reading to the sound of Rilo Kiley’s song, “A Better Son or Daughter” and occasionally picking up the “I” and the “O” keys off the floor. The routine of bending over every seven or so minutes to fetch the tiny, plastic, lettered squares off the ground is a welcome reminder that I am still here, anxiety and all.

Recovering from Graduate School: Rewriting the Trauma Narrative

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Eric Anthony Grollman (@grollman) is a Black queer feminist sociologist and intellectual activist; they are an Assistant Professor of Sociology at the University of Richmond. They are the founder and editor of the blog, Conditionally Accepted, which recently became a regular career advice column on Inside Higher Ed.  In this post, Dr. Grollman reflects on negotiating and making sense of trauma related to graduate education. 

“What’s the deal with this PTDS book,” my parents asked when they last visited me. Common understandings of post-traumatic stress disorder (PTSD) – the mental scars that soldiers, survivors of sexual violence and childhood abuse carry – certainly don’t call to mind any aspect of my life. My parents even sat through my talk on intellectual activism at the 2015 Conference of Ford Fellows, in which I attempted to identify the structural and cultural factors of graduate school that inevitably led me to be traumatized by my graduate training. But, maybe they assumed I was using the term “trauma” to be provocative or dramatic. With some embarrassment, I had to explain that I was, indeed traumatized by grad school, experiencing the symptoms of complex trauma, which is not (yet) officially classified in the Diagnostic and Statistic Manual (the major psychiatric guide for mental disorders in the US).

When my therapist pointed out the trauma – really only repeating back to me comments I had made just moments before about being traumatized – I also resisted. Seriously, who gets traumatized by educational training? I wasn’t physically attacked, I was not raped or sexually assaulted, and I did not endure torture or extreme warfare. Coursework, a qualifying exam, a master’s thesis, a dissertation, and some teaching experience – these, on the surface, are about equipping me with the skills necessary to become an independent scholar, the skills necessary to obtain a PhD and, ideally, a tenure-track job. To help me to begin to see the trauma, my therapist encouraged me to write a trauma narrative.

So, I took some time to write down every challenging, offensive, and potentially traumatizing event or condition that I could draw from my memory. In the midst of writing about one memory, I would have to make a note to write about another that came to mind. “Oh, how could I forget about that!” I thought several times in this process. In the end, I had nearly filled a 70-page spiral notebook with such memories. When I flipped through the notebook, I asked myself, “who wouldn’t be traumatized by all of this?” Guilty of being an academic geek, I took the time to identify some common themes: 1) repeated exposure to and witnessing of microaggressions, stereotypes, and discrimination; 2) devaluing of my research interests, in particular, work on my own communities (i.e., people of color, LGBTQ people, and, especially, LGBTQ people of color); 3) the undermining of my career choices, namely eventually becoming a professor at a liberal arts college; and, 4) an explicit attempt to “beat the activist” out of me through the graduate training.

I have continued to work through my therapist to begin to recover from the trauma. The initial and, it seems, hardest step has been to name the trauma. It has taken some time to stop denying that grad school could be so bad, that I was somehow too weak to survive traumatizing circumstances, or that it is my fault for not leaving at the first sign of trauma. I, like most others, would never expect trauma to be one of the outcomes of graduate training. So, blaming myself or denying the trauma doesn’t help.

Once my therapist and I opened that door, I began to grow impatient. Now what? I wanted some sort of homework to do outside of therapy sessions, though I learned that was not my therapist’s approach. So, I looked into buying workbooks that I could do on my own. Unsurprisingly, most that are out there focus on what my therapist calls “big T Trauma”: sexual violence; war; child abuse; being robbed; having your house burn down; and, natural disasters. My own struggle with complex trauma – “little t trauma” – is the result of prolonged trauma that is interpersonal in nature, and likely occurred at a key developmental period (early adulthood, in my case). Since it is not included in the DSM, there are few workbooks that even mention it, let alone offer resources to help recover from it. But, I eventually found one that does: The PTSD Workbook (second edition), by Mary Beth Williams and Soili Poijula.

I’m not as far as I’d like to be into the workbook, but I find that digging into traumatizing experiences is not something I care to do daily. But, so far it has been helpful to address it head on. Recently, I completed one of the exercises in which they instruct readers to “[t]hink of another person who has gone through a similar event. Knowing now what most helped you survive, what would you say to that other person?” I don’t think that I followed the instructions, but I ended up reflecting on something much more powerful. I ended up rewriting my trauma narrative, albeit an abbreviated version.

Rewriting the Trauma Narrative

Let me give some context. In the process of naming the trauma, I have closed my memory around all that was taken away from me in the process of completing my PhD and obtaining my current tenure-track position. I entered my PhD program in sociology as an activist with a desire to study racism in queer communities using qualitative methods. I figured sociology would be more likely to open doors to gender studies, sexuality studies, and even student affairs than the other ways around. A desired joint PhD with gender studies was discouraged. A desired graduate minor in either sexuality research or gender studies was discouraged. An intended dissertation in trans health was discouraged. I also learned to self-police my interests; for example, I selected a qualifying exam in social psychology rather than gender, sexualities, or race/gender/class/sexualities. I left graduate school with a PhD, trauma, Generalized Anxiety Disorder, a cute boyfriend, expertise in medical sociology using quantitative methods, and an acute awareness that I must hide any activist work or community service. The 28-year-old me was hardly an older and wiser reflection of the 22-year-old me.

That is, in my efforts to identify just how traumatizing graduate school was, I have focused almost exclusively on the negatives – what I have lost, what I compromised, what dreams have been dashed for the sake of job security. This has been a necessary step for me to stop denying how bad grad school was and blaming myself for the trauma. But, the unintended consequences of this focus is that I have lost sight of the ways in which I did survive and thrive, pursued my dreams and values, among other positive highlights of those six years. A while ago, I tried to write a positive-focused complement to the trauma narrative, and only came up with missing the excellent restaurants in Bloomington, IN and the friends that I made there. I also met my now-fiancé there, who moved to Richmond, VA with me. And, my excellent training – despite the compromises I made – opened a number of doors in terms of jobs and professional networks. So, hey – at least I don’t regret my time there. But, that effort felt like settling for an otherwise traumatic experience.

So, back to the prompt from The PTSD Workbook. I began my answer to the question about what I would advise to others, presumably to prevent being traumatized, with: “In the thick of [grad school], I attempted to maintain activities, relationships, and projects that were not valued by my program, but that fed my spirit nonetheless.” From there, I listed example after example of the things in which I was involved during my time in graduate school. Contrary to the sentiment that I left graduate school anything but a sexuality scholar, I identified plenty of examples of the ways in which I clearly demonstrate active involvement in this subfield. I published two articles on sexualities that were co-authored with people outside of my university; in fact, my advisors only became aware of these papers upon noticing them on my CV. I also started one on trans health late in grad school, which was finally published in September 2015. As the founder of the short-lived Campus Coalition for Sexual Literacy – an initiative through the Center for Research and Education on Gender and Sexuality as UCSF – I organized a few events to promote sexual literacy on campus, including a conference on transdisciplinary approaches to sexuality research. I attended a few conferences and workshops in the field of sexualities. And, I also was involved in service on campus and in the community that promoted community-building for LGBTQ people, as well as healthy relationships in the queer community. I could go on…

In essence, I rewrote my trauma narrative. In this narrative, I didn’t sell out, I didn’t allow others to dictate my career, and I wasn’t powerless. Rather, this was a narrative about pushing back against mainstream expectations in sociology to build my career as a scholar-activist whose work focuses primarily on sexualities. This narrative allows me to recall ways in which I defined my career for myself, with necessary compromises along the way. Would the trauma have been worse if it weren’t for feeding my soul with sexualities work and activism? Or, was the trauma the result of defying mainstream expectations in sociology by pursuing such work? I’m not certain at this point, and cannot actually say what could have been. But, I’m in a better position to say what actually was. Yes, I was traumatized; but I was no passive victim.

I hope through speaking openly about the trauma, about the efforts to “beat the activist” out of me, and the training that attempted to steer me away from studying my own communities to make it easier for current and future marginalized grad students to weather the challenging circumstances of grad school.

 

“Hope” Springs Forth: New Article Out in Sociology of Health and Illness!

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In this post, Xan Nowakowski reflects on a recent publication in Sociology of Health and Illness concerning the personal, political, and structural experience of managing chronic conditions in everyday life.

Hello readers! If you’ve been following WWIH for a while, or just know any of us editors outside of the blog, you may have heard a bit about my new article in Sociology of Health and Illness. It’s a critical analysis of my experiences with a prescription drug that has excellent benefits and a lot of potential side effects, and the many sociological lessons learned from trying to find the right balance between the two.

A lot of the illness management literature deconstructs major changes in health status, and the impacts of these events on identity formation and performance. This literature doesn’t yet contain as diverse an array of information and analysis on the day-to-day nuances of living with chronic conditions. I’m hoping to inspire other scholars to delve more into that area, and to do so with a richly intersectional perspective on relationships between health and social life.

To have this article published in Sociology of Health and Illness is a dream come true, and the product of about two years’ worth of work. So I’m thrilled to report that “Hope Is a Four-Letter Word: Riding the Emotional Rollercoaster of Illness Management” is now available online, along with an accompanying video abstract introducing the piece. The print version of the article will appear later this year. In the meantime, if you want to read the article and are having trouble getting access to the online version, just drop me an email.

I also encourage everyone to share the link to the online version with others who may be interested in this topic. I quite deliberately constructed this article as a narrative with theoretical commentary, not a research methods piece. It’s accessible for a wide variety of audiences, not just academics. I wrote the paper with patients, families, clinicians, advocates, and caregivers all well in mind. WWIH readers will recognize a lot of our key themes here: intersectionality of multiple social positions and roles, gender performances and violations of norms, racial and ethnic inequality, symbolic interactionism as a tool for understanding health experience, and of course a hefty dose of storytelling!

An essential contribution of this piece is detailed insight into the interplay between personality and social structure in the experience of chronic illness and the management thereof. By using my own voice to explore the complexities of different theories of social inequality, I hope to help build new ground for dialogue about what chronic illness feels like day-to-day that can inspire improvements in both community support and clinical care. I also hope to open doors for other scholars who occupy one or more marginalized social locations to share and critically analyze their own stories of illness management in everyday life.

Radical Reprioritizing: Tenure, Self-Care, and My Future as an Intellectual Activist

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 Eric Anthony Grollman (@grollman) is a Black queer feminist sociologist and intellectual activist; they are an Assistant Professor of Sociology at the University of Richmond. They are the founder and editor of the blog, Conditionally Accepted, which recently became a regular career advice column on Inside Higher Ed.  In this post, Dr. Grollman reflects on balancing life and the tenure track as an activist scholar.

I am currently wrapping up my third year as a tenure-track professor at the University of Richmond – an elite, small liberal arts college in Richmond, VA. This semester is the first time I am teaching courses I have taught at least once before; and I’m teaching the “two” of my 3-2 yearly course load. Finally, I have a little breathing room to really advance my research.

But, the service demands, and my own campus, community, and professional involvement have increased with each passing year. As far as I know, I am the only out Black queer faculty member on my campus – one of few LGBTQ faculty in general, and one of few faculty of color in general. My classes tend to have a heavy queer, (Black) feminist, and antiracist focus. And, I make an effort to be visible on campus, hopefully letting my fellow “unicorns” on campus know they are not alone. Students’ need for me to be a teacher, mentor, and role model seems particularly great at our small, slightly diverse university.

And, then there is my intellectual activism, especially my blog, Conditionally Accepted, which I hope will expand into a bigger initiative for change in the academy. There are the symposia, conference panels, and workshops at which I have spoken about discrimination, exclusion, and health problems in academia. Though less consistently, there is work I have done to make academic research and knowledge accessible to the community. Trying to earn tenure to stay in academia, while also working to change academia, sometimes I feel as though I have two jobs – and those two jobs are typically at odds with one another, unfortunately, to the detriment to my health.

I am undeniably spread thin. Due to fear of unclear and biased tenure expectations, I do my best to exceed what I suspect that I need on the research front. (Don’t we all aim for that “slam-dunk” tenure case? And, at what cost?). I sometimes push even harder on the research front to “compensate” for my advocacy – again, owing to fear of how others’ perceive my approach to being a scholar. Despite the fears that my blogging would cost me my job, I’ve kept at it since I started my position in August 2013; I’m now the editor of an Inside Higher Ed career advice column that is read nationwide (at least among academics). I’m frequently invited to speak on campus, attend various events, facilitate discussions, and so forth. I’m flattered. But, I’m also frustrated that the campus hasn’t employed more faculty like me to share the labor. For, that’s what all of this is – work. Work that is incredibly important, and affirming, and enjoyable. But, I’m only one person!

I’m only one person. A person who has suffered from Generalized Anxiety Disorder since 2010. An academic who was traumatized by graduate school, and is now seeing a therapist to begin the recovery process. And, now I suffer from Irritable Bowel Syndrome, probably from the anxiety and trauma. And, I finally got over myself and started taking Lexapro. Health-wise, I’m a mess, or at least a work-in-progress. Why push myself so hard at work? If these were physical health problems, I would not hesitate to rest, resist demands of work, pace myself, and seek proper treatment.

Radical Reprioritizing

Recently, my perspective has changed. I have shifted toward taking the long-view. I want to be in the academy for a loooooong, long time. I’m coming for the structures and culture that allows for the exploitation of, yet lack of support for, minority scholars. I want to educate thousands of students about the social problems of the world, and what they can do to solve them. Maybe I’ll serve as a dean or provost one day; hell, maybe I’ll defy the odds and become a university president. Or, forget thinking inside of the box; maybe I’ll start my own academic justice organization, working with multiple universities rather than within just one.

With that in mind, I have realized it is time to radically reprioritize. I have identified the two most important goals for my future as an academic and intellectual activist: 1) get healthy; and, 2) earn tenure.

Self-care is my number one goal. That means making a serious effort to do the things that will promote my mental, emotional, physical, and spiritual health. I hate exercise, but it’s good for me. I can never seem to find the time to meditate, but I have to let my brain recharge just as I let my body recharge nightly. I’ll continue to limit work to 8am-5pm on weekdays (with no work on weekends, of course), with a mandatory lunch break for leisure reading, seeing friends on campus, or walking. I will continue to see my therapist, take my anti-anxiety medication, and use workbooks and private journaling to recover from the trauma and anxiety. I realize that I will be useless to everyone if I am sick and suffering or have a limited capacity for anything other survival. And, to be grim, I can’t help anyone if I die young. I deserve to be healthy and happy!

Earning tenure means lifetime job security at my current institution – an incredible privilege these days, even in the academy. It means more freedom to take chances in the classroom, in my research, and even in my advocacy. Tenure means power and access to make meaningful change on campus, in my discipline, and in the academy in general. It will also come with the responsibility to be in service to other academics, serving on various committees, mentoring junior faculty, and becoming involved in faculty governance. I find six years on the tenure-track tends to encourage junior scholars to play it safe, prioritize their own career and status over change and service, and promotes worry and mental illness. But, it is, at worst, a necessary evil to make real change.

Together, these goals help me to determine whether I can accept or take on a new invitation, initiative, or opportunity. For example, when I received a last-minute invitation to facilitate an on-campus discussion about racism scheduled for late in the evening, I quickly declined. Staying late and providing the necessary emotional energy would not have enhanced my health, and I am well aware it would do little to strengthen my case for tenure. But, I did finally agree to attend enVision – a social justice weekend retreat hosted by my campus’s Office of Common Ground; I found it incredibly affirming to interact with students outside of the traditional classroom context on these issues. Blogging doesn’t help me for tenure, per se, but it is a necessary outlet for me to vent about injustices that I and others have experienced, to build community, and advocate for change. Unfortunately, I realize there are still some things that will help for tenure that aren’t so enjoyable or health-enhancing – like networking at conferences, occasionally publishing in high-impact journals, etc. As I said, it’s a necessary evil; I can chalk it up to job security as a matter of health and my livelihood.

But, admittedly, there is also a third focus: my post-tenure future. I have heard the horror stories of post-tenure depression. Junior scholars who keep their mouths shut and their heads down find that they are lost when they raise their heads upon receiving tenure. I am beginning to work toward the career I want for myself as an Associate (and eventual Full?) Professor. Maybe my research will catch up with my passion and advocacy; that is, I could turn blogging into actual research on injustices in academia. Or, maybe my joke that Conditionally Accepted will serve as the launching pad for my academic talk show, Academic T with Denise, will actually become a reality. (I could live with just a podcast like On Being, though.) There is life after tenure; so, I’m doing what I need to to have both of those (life and tenure), but also doing the groundwork for my goals for intellectual activism post-tenure.

I am fortunate to have friends, family, and colleagues who support me in these endeavors. I realize that this is not afforded to everyone. But, I also recognize that these concerns – job security, health, and needing to make a difference – are particularly heightened for me as a Black queer person. That is, maybe I’d be stressed, but not mentally ill and medicated, if I were a white cishet man. Maybe I’d be a touch nervous about tenure, but not concerned that my work would be trivialized as “me-search” – even if I studied the lives of other privileged people. Maybe, maybe, maybe – but that is my reality (for now). I need to stick around along enough to ensure that this is not the reality of future unicorn scholars.

 

On not Writing

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Erika Gisela Abad has a Ph.D. in American Studies, and works at Center for Puerto Rican Studies investigating intersectionality, cultural experience, and oral history among Puerto Rican communities and families.  In this post, Erika reflects on how her research in Puerto Rican Chicago sparks tension and memory in dialogues and debates with her mother.  

I struggle with not writing. Sitting with my mom after a long day’s work watching ridiculous TV shows on streaming media. I do this in the midst of professional uncertainty when my conscious tells me it is important to, well, send out applications. A woman struggling with the invisibility of her work, of her motherhood, closing the computer allows me to make her visible in the mundanity of the everyday to which we’ve arrived.

A mixed class Latina the second to finish college, the first PhD, I got this degree because making a living as a writer a mentor once told me, was going to be difficult. In the place many predicted the MFA would land me, I sit with my mom because of the reasons I write:

To heal, to release anger, to get to truths neither speaking nor working reveal. Drafting and talking through to forgive what moments trauma doesn’t want to let go. As I once wrote a mentor, it’s about getting to the table and trying to write what the other person coming to the table could or would look like. It’s about practicing with characters and metaphors how to listen through the trauma, whether the trauma be colonial, patriarchal or material – whether the trauma be that which has been named or that which must be kept invisible. Sometimes the struggle to survive demands struggles be kept silent. Human suffering, as inevitable as it is, often gets lost in the pursuit of fantasy as well as forgetting. Coming to the table is also about assessing whether the wheel turning revolution can be rebuilt or if the pieces of memory missing – memory missing because of what can’t yet be named – requires so many of us to rebuild it.

And sitting with my mom is about waiting, waiting for memory to reappear. And her memories awaken in the memories of others I record as an oral historian. Memories of parking lots turned into playgrounds, memories of late buses to colleges she never imagined. Memories of drinking Dr. Pepper for the first time, her comfort food, the comfort of being able to know more, taste more than poverty and patriarchy permitted to a young woman growing up where Puerto Ricans were trying to make place. These memories give her life beyond the college she never finished for no other reason than being by herself. Her stories lifting up from computer screens in a voice still weary of helping and reaching, come to life beyond the place of making meaning of leaving that requires returning, overwhelmed by isolation.

And I sit with that, when our skin color differences do not write away the sameness of racism we experience. A paleness that encourages forgetting that my brownness writes on the page, for the stage in ways that have her admit—not to me—that the fight continues. Responses to racism are coded in the traumas we share. Retorts and resistance colored by the adverse childhood experiences that divide us. Sitting is all she wants at the end of the day, at the end of days running, at the end of years climbing to find stable ground in which to root, in which to lift me, among her other children higher. My hands race and wring, legs twitch because work, all the kinds, exige movement.

And I struggle to not write in those moments: moments where the cogs in my head turn too fast for her to keep up; when the questions she asks receive huffs and stomps out looking for roads bigger than the rooms we occupy. In those moments where the grumbles she makes about the car driver who works when she doesn’t, because the car that is freedom to her and is more work to me in ways that put her back on the bus, on the train to move because her fixed time challenges the time that, for me, remains in constant question. The need for work fuels us in speeds and codes the other doesn’t understand.

It takes seconds to remember a woman speaking of a girl ashamed and strained by the laundry she carries on the bus. And I see my mom there, then, aching and taking days off to not have to, again cross the street with bags and baskets. She bought to own to never again walk or rent or borrow. She works to have the luxury, luxuries she couldn’t have back then, then when Puerto Ricans were beginning to make meaning, Puerto Ricans who form the history I collect. Her life fills up in the margins of those stories, of those whose mark on Puerto Rican Chicago get printed in newspapers, shine in their awards, appear on screens to see. Those Puerto Ricans now, in between arguments and questions, spark her to remember her story. Histories she lived differently, differently for reasons the more I learn from others, the more she reveals.

So I stretch and listen and sit still, waiting, waiting till she’s asleep to pull out the books, to open the pc, to take out the pen and paper to write. Because writing is still needed to heal, to move, to forgive, to let go, to uncover, to remember. But not writing—not writing in those moments I steal from reason, from economy—allows me to say thank you, thank you the only way a struggling writer knows how. By counting the wrinkles in her face, the sighs in her stories, knowing that, in between them, remain moments and movements to keep me writing.

Tag, You’re Ill: My Decision to Wear a Medical Alert Bracelet

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In this week’s post, Xan reflects on medical sign equipment and the self through the example of decision-making regarding medical alert bracelets.

I started my year in South Tampa with a dead car battery, a small moment of panic, and a series of tough realizations about my health and life. Turning 32 during the winter break made me reflect on how far I have come with my physical and mental health, and my ability to engage in effective illness management in all of those areas. I have never felt happier to grow older or to continue to challenge myself with new goals for well living, both within and outside of my professional life. At this point in my journey, giving myself those challenges means really moving out of my comfort zone and daring to dismantle some of the boundaries I previously erected in order to feel like I belong.

A curious artifact of my illness experience on which I’ve increasingly focused attention via critical autoethnography research is my staunch refusal to use any devices that obviously signal to others that I am ill.   Despite multiple loved ones and colleagues persistently reminding me that I might enjoy much better comfort in meeting spaces and at community events were I to carry a “donut pillow” to pad my sit bones on hard seating surfaces, I still find the prospect incredibly unpleasant. Reflecting on my reactions to this very intelligent suggestion always brings me to the same conclusion: Although I have built my entire career on using my own experiences of chronic illness to conduct impactful research and outreach on same, doing that kind of work also means that I mostly control the narrative of my disease.

By contrast, using a medical device—however simple or subtle—gives others very prominent evidence that I have a chronic condition, and allows them to form a wide variety of conclusions about my diagnosis and what my life is like. I suppose I have not really changed that much in some ways, because even though I accepted long ago that my own agency is merely a component of the complex social fabric in which I spend my days, I still feel the urge to control as many things in my environment as I can. The idea that I might not get a chance to shape how others interpret my illness still does not sit well with me.

Of course, this notion is problematic in and of itself. Being an 85-pound adult does invite people to draw all sorts of conclusions about what I live with, some reasonably accurate and some remarkably off-base. For instance, in community settings I have sometimes been mistaken for a methamphetamine or heroin user. These situations are likewise uncomfortable, and perhaps drive me to control what elements of the narrative I still can. Perhaps for this reason more than anything else, I have never worn a medical alert bracelet despite having a heart condition as a result of my autoimmune disease. When my potassium levels dip lower than usual, a bit of excitement or panic can make the Q and T waves of my heartbeat spread so far apart that my heart actually stops for a split second.

Long QT syndrome is a tough condition to miss if you know what to look for. Just look for the person who randomly passes out with seemingly no rhyme or reason, only to wake up fully alert moments later. It’s common in people with a history of severe hypokalemia, which often owes to chronic diseases of the mucous membranes and/or kidneys. My own disease is very similar to cystic fibrosis and may in fact be a rare form of CF—genetic tests remain inconclusive. So my whole GI tract is affected, as are my kidneys to some degree.

As a result, my body requires large amounts of supplemental potassium to sustain itself and keep my heart functioning. I’m also hypotensive thanks to a family history of low blood pressure, which doesn’t help matters. Neither does the thiamine deficiency I’ve become vulnerable to because of all the scarring on my small intestine, which in turn can exacerbate heart problems. So I pass out sometimes—when I’m excited, when I’m panicked, when I’m dehydrated, when I’m fighting a virus… I collapse and hit the deck, then wake up a few seconds later, usually with several very confused people surrounding me.

So far, I’ve been lucky. I’ve never lost consciousness for that long—maybe 60 seconds during the worst episode I’ve had to date, where I collapsed at the entrance to a busy store. I’ve never passed out in a place where I would have been in danger physically. I’ve fainted in showers and living rooms, in quiet parking lots and in my partner’s arms. I’ve never gotten a concussion, never broken bones from the fall. When the fluttering starts in my chest and I start to feel my body lifting off from the ground, as if I will finally fly away from the pain it has caused me, I know what’s coming and I let it happen. I just crumple like a marionette with slack strings, folding gently to the ground. I relax and keep my body loose to minimize my chances of getting seriously hurt.

I also try to calm myself during moments of panic so things do not progress to that point—a lofty challenge when I am still figuring out how to live well with PTSD, but one I conquer more and more with each passing day. And when I invariably wake again, still in the same body with all its same foibles, I try to make light of things and share a laugh with anyone who has come to help. But it isn’t really funny, and on the few occasions this has happened in recent months, I have increasingly felt that the joke may be on me. I reflected on all of this as I lay on the pavement outside our apartment in Palma Ceia, cold sweat on my brow and heart fluttering beneath my ribs. My partner stood above me, hand on phone in case this would be the one time where I did need an ambulance. I blinked, vision coming back into focus, looking up at my partner with a sheepish expression.

I should probably get a medical alert bracelet, shouldn’t I. My partner looks down at me, arms crossed, eyebrows raised. Uh-huh. I accept help getting up, which represents substantial progress in and of itself. This is gonna be an adjustment, I say. I don’t usually wear anything that would tell people I’m sick. I know it’s kind of obvious but I have this illusion that I control the message all the time. And this makes it obvious in a really big way. I guess I’m just gonna have to be okay with it. I want to be around for a long time and that’s not going to happen if some well-meaning paramedic shoots me up with adrenaline because they think I’m a drug user who has overdosed. My partner relaxes and listens, satisfied that my usual mile-a-minute sharing of my thoughts means I’m doing all right.

I let my partner find me an auto parts store nearby that will replace the battery and send me on my way back north to get started with spring semester teaching. We watch through the store windows as the old battery comes out and the new one goes in, me talking endlessly about the significance of deciding to order a medical alert bracelet. I talk about what I’ll engrave on the back. I already know I’m going to get one with rear engraving—my compromise with myself about discretion and narrative control. I think about my bracelet the whole drive home: what it will say, what it will look like, how I will wear it. I think about getting a wallet card to hold all the other information I cannot possibly fit on a bracelet that might be of use to first responders.

I think about how I’m going to talk to my parents about all of this. They know I have “a little long QT”, as they like to put it. But they don’t really know that it still flares up sometimes, even with my potassium and thiamine levels managed with supplements. I debate just not saying anything, to them or my colleagues or anyone else. And then somewhere between Tampa and Tallahassee I decide that I’m just beyond sick of hiding, of erecting these arbitrary boundaries in a life where my illness is already common knowledge because I think somehow they will protect me, allow me to keep control of a body that has been killing me since the day I joined this world. Perhaps I’ve finally realized that if I behave like a prisoner of my body, I become one. Controlling the narrative doesn’t give me the kind of freedom that I once thought it might. I suppose I’m beginning to feel okay with just how much I cannot control in this body, in this life.

Back at home, I spend hours researching different bracelet options, settling on a professionally engraved tag for which I can make my own bands. I’ve always loved bracelets—a signature part of my aesthetic for years—and figured that would be a good way to make the experience less intimidating. It is a whole new world of scary, even if you’ve been very open about your illness for many years as I have and even if you have made it a huge focus in your career, to put it right there on your arm for anyone and everyone to see. A “scarlet A” of sorts, a piece of sign equipment branding you as different. I thought about this as I deliberately chose a tag design with a black caduceus symbol. Then I spent several hours mulling over the engraving content—making notes, stepping away, coming back to it, revising. If I was going to put the core of my life on my wrist to speak for me at times when I could not speak for myself, I was not going to take the process lightly.

My medical alert tag arrives in the mail a couple weeks later, and I make a simple band for it with supplies purchased from a craft store. I begin wearing it the next morning. The tag is a simple steel oval with a black caduceus symbol on the front side, and on the back several lines of engraving:

 

AUTOIMMUNE DISEASE

LONG QT & HYPOTENSION

MULTIPLE MEDICATIONS

INFO ON WALLET CARD

J (SPOUSE): XXX-XXX-XXXX

 

I’ve accepted that this is something I need to do to live the best life I can. I’ve made every effort to ensure that I will be happy to wear the tag every day, customizing the band exactly to my liking, ensuring that I’ll have no excuses to leave it behind in a drawer. I’ve also accepted that I still have the freedom and agency to tell people who I am, both within the context of my chronic illness and outside of it. I won’t become a walking stereotype just because I wear a medical alert tag. I’m still me, which entails living with a chronic condition but hardly ends there.

I also have peace of mind from knowing that something so small and simple can advocate for me when I cannot speak up for myself. So do my parents, who nod sagely and say I’m making a smart choice when I tell them I’ve decided to start wearing an alert bracelet. So does my partner, who quietly breathes a sigh of relief over the phone when I say I’ve ordered the tag. I’m not usually much for New Year’s resolutions, but I feel good about making and fulfilling this one. Since the tag arrived, I’ve worn it proudly—hanging a lantern on it, using it in my teaching and community outreach, the same way I’ve done with so many other elements of my illness experience. It’s just one more way of writing where it hurts.

There’s No Manual for This: Surviving Rape Apologists in the Classroom

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The following anonymous guest post is by a sociology instructor at a public university in the United States. In this post, she reflects on experiences confronting trauma and rape apologists in the evaluation of student assignments.

When I began graduate training, I was inundated with advice about how to survive in my chosen profession. Specifically, I received tips on teaching – how to grade papers efficiently, how to foster a meaningful class discussion, how to have boundaries with students regarding grade contestations and office hours while also creating a safe space for learning. I was told to try and grade students’ work as uniformly and objectively as possible. I value all of this advice, yet I was left unprepared for what would happen in the future when I taught a gender class.

It was the middle of the semester and we were covering rape culture. As any Feminist instructor who has ever taught about rape culture probably knows, covering this topic is challenging for a multitude of reasons. Sometimes we encounter students who realize that they’ve been raped who come to office hours looking for resources. Other times, students learn that they’ve actually committed rape, and struggle to reconcile this with their images of themselves as “good people” and “not one of those (usually) guys.” And many Feminist instructors, especially those who are women, know all too well what it’s like to navigate the “mansplaining” of a few of the men in the class who would like to ardently deny that rape culture exists. Such students may make claims including but not limited to the following:

In response to discussions about the fact that what a woman is wearing does not give someone license to rape her, nor does the rate of rapes have anything to do with clothing choice: “but don’t you think what she was wearing is at least a little important?”

In response to conversations about the structural barriers to reporting rapes, and the estimated number of rapes that go unreported: “But why wouldn’t she report it? It’s kind of on her.”

In response to demonstrating the staggeringly low rates of “false reports” in contrast with the alarmingly high concern lawmakers, the media, and the general public seem to have with this artificial trend: “How do you know that it’s really rape?”

In response to pointing out that someone is incapable of consenting if they’re intoxicated:  “Well don’t you think she should have been more aware of her surroundings? Less drunk? It’s kind of her fault.”

In response to the fact that we live in a society that valorizes men’s violence against and dominance over women: “Boys will be boys.”

Every so often, however, male students may present a reasonable shortcoming of the prevailing rape culture rhetoric, such as “Why don’t we talk about when men experience rape? How can we make space for that dialogue without pushing aside women’s experiences with rape and systemic inequality.”

This is a valid question, and the inquiry is on point. We need to make space for men (as well as non-binary people) to share their experiences with rape since the foreclosure of such space stems from the very same mechanisms of inequality reproduction that facilitate rape culture in the first place.

When I encountered a paper that began with this question in my gender class, I hoped the student would take the paper in that direction.

He started by citing a media example of a case where a woman on a college campus raped a man, and how poorly the campus responded. However, I first felt a twinge in my spine when I looked up the source of his story and traced it back to a Men’s Rights Advocacy (MRA) group. “Okay,” I thought to myself, “students use terrible sources all the time, often because they might not have the skills to distinguish journalism from something like an MRA group. I’ll give him the benefit of the doubt here and make a note of it for the next paper.”

Unfortunately, his “argument” quickly devolved into a tirade claiming – since he presented ONE case where a man was raped by a woman – Feminism is pointless and women are complaining too much about “their problems.” He wrote that men and women experience rape culture in exactly the same way, and claimed talking about gender inequality was just an effort to make men look bad. He said that women brought these things upon themselves by making people, and specifically men, angry and annoyed via conversations about Feminism and rape culture. He did not even feign a presentation of data to back up his argument after the initial example, but rather, he simply ranted against Feminism, women, and open discussions about the sexual violence women regularly experience.

As I went over his paper, I realized that I was reading a paper that sounded word for word like something my rapist would say. And not only did this sound like something my rapist would say, this student fit the same demographic profile as the man who raped me – White, college male, between the ages of 18-22.

I got up from my desk and went for a walk. I couldn’t concentrate. I had plans to read a book later that afternoon, which were shattered by being thrown back into a pit of traumatic, fragmented memories by this student’s paper. I was furious at the fact that, as an instructor, I was expected to take his paper seriously, and scared of what he might do if he didn’t like his grade. Although I knew it was unlikely that this student would literally try to rape me, his words felt so familiar that I began having trouble distinguishing him from the man that did. Their words were so frighteningly similar that the “rational instructor” side of my brain could not overpower the “trauma survivor” part of my brain.

None of my training or experience prepared me for something like this, not even advice from the few Feminist scholars I have had the pleasure of knowing. I was in a position where I had to take this student’s words seriously, evaluate their merit, and provide a percentile score based on how well I thought they fit the parameters of the assignment.

“ZERO! YOU GET A FUCKING ZERO” I literally screamed at my computer screen. I decided that I wasn’t ready to return to grading papers yet so I got up and went for another walk.

I felt irritated that in two pages of (poorly written) ranting this student was able to undercut whatever authority I thought I had as an instructor. Authority that, especially as a female instructor, I worked hard to establish and maintain. I imagined him sitting on the other side of his computer screen laughing at my pain, joking about my distress. I imagined him being friends with my rapist (though the man who raped me is now significantly older than this student, he is frozen in the 18-22 age bracket in my mind). How, I wondered, could I possibly evaluate this student’s work in an “unbiased” fashion? Such a request would involve me living an entirely different life than the one that I’ve had.

I returned to my computer late that night. I pulled up his paper, took a deep breath, and began to read it again. No one ever advised me about how to grade a paper that sounds like something my rapist would say, so I suppose I will have to train myself. After all, I am certain that I am not the only instructor to have to navigate this dynamic, and I’m sure this won’t be the last time I have to navigate it.

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

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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.

Teaching Where It Hurts

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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.