On the Dubiously Accessible Caste System of Conspicuous Fitness

In this post, Xan reflects on relationships between consumption and fitness while placing these cultural patterns within the context and perspective of people managing chronic conditions.

Recently the New York Times published an article about outcomes from wearable fitness devices. The takeaway from this article was that “Fitbits and Apple Watches and the like may have their uses, but they don’t appear to be effective in weight loss.” No surprises there. I’ve always looked at these devices as part of a culture of “conspicuous fitness”, in which folks manage their image more than their health.

I do like that these devices often encourage people to view activity as a continuous spectrum rather than a dichotomy of active vs. inactive pursuits. But most folks who wanted a life with physical activity integrated into the process of doing other things, like getting to work or shopping for groceries, were probably already doing that stuff. Plus, expensive devices really don’t target demographics of folks whose activity may be more limited by environmental factors like street safety and air quality.

The whole “conspicuous fitness” thing also seems alien to me because of the aggressive norming of how we perceive people as “fit” or not. I’m never going to be running marathons–which the literature suggests is probably not that great for you anyway, but I digress–or climbing mountains. But I have good strength and work to maintain it. I like to walk, either alone with some music or sharing time with my spouse. I like to dance at concerts and at goth clubs when I go.

And then there are the can’ts. I can’t run or ride a bike for long distances because the cystic fibrosis (CF) has attacked my joints, so anything causing impact or intense repetitive stress is decidedly off the table. I can’t swim in pools because I get pseudomonas infections easily and the chlorine plays havoc with my skin. I can’t go hiking in places where there’s no restroom access–peeing in the woods is well and good, but other things not so much. I can’t go waterskiing or do other stuff where I can’t use a bathroom at a moment’s notice.

I don’t mesh with the picture of “fitness” in many people’s minds, yet the work I do to keep my body strong–and how I integrate it into the bigger picture of my life–makes a big difference in my ability to live well with such a pervasive disease. People often think I’m frail. I wrote a publication about it. People don’t think I can kick some ass if I need to. My first paying job was teaching karate classes for junior students. People chronically underestimate me. They try to keep me from carrying my own groceries, from moving heavy things. The element of surprise never seems to lose its power.

I define “fitness” as part and parcel of my own continuous process of illness management, in which I adjust daily to nuances in the challenges of living with CF and its consequences. My disease and how it limits me seem as normal to me as the ways in which CF does *not* limit me. Walking down the street, legs in rapid swing, feels about as normal as it gets. But this activity gets read differently if I wear the sheath dresses and blazers I favor for work, or my weekend jeans and band T-shirts, versus spandex leggings and trainers.

I’m never that person cruising the produce aisle with workout gear and an mp3 player strapped to my arm. I have no interest in being that person. Trying to convince the world that my body conforms to preconceived notions of “fitness” would be an utter lie. I may be relatively strong, but I’m not *vital*. Article after article flying through my social media feed chirps that “fit” people don’t feel tired all the time. What goes unsaid is that many of these journalists never bother talking to people living with chronic diseases that impact our mobility, our activity choices, our energy.

Which is a shame, because you’ve got to be pretty damn fit in a number of ways to function at a high level with diseases that constantly attack your body from the inside out. Doubly so if you want to keep your independence, something many of us cling to like a life preserver, as if it is the only thing holding our mortality in check. Sometimes carrying our own groceries or wrangling heavy equipment feels like all we have. So all of this got me thinking about perceptions and reality, and about the nature of heaviness when you carry a ponderous burden everywhere you go. And that is a topic for a separate post.

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When the Personal Meets the Professional Meets the Personal: One Queer Trans Guy’s First Week of the Semester Processing Session

Jay Irwin, PhD, is an Associate Professor of Sociology at the University of Nebraska at Omaha. He received his PhD in Medical Sociology from the University of Alabama at Birmingham in 2009. He is heavily involved in activism and advocacy both on campus and in the larger community. His research and teaching involve LGBT health, trans identities, and sexualities.

I have just completed what has to be the most bizarre and emotionally draining first week of a semester – potentially in my entire academic career, both past and future. I had a rough summer to start. I had an invasive back surgery in July and was recuperating while teaching an online class from a rented hospital bed in my living room. I had a lot of time to think this summer and was excited for the Fall term to begin. I had modified my courses and was ready to engage students in new and exciting ways. My body wasn’t fully ready to go to work, but regardless, I had to go back to work and was intellectually charged to go engage with students. And then I had one of the most exhausting, bizarre, and hurtful first weeks ever.

THE PERSONAL MEETS THE PROFESSIONAL

Actually, this all started the Saturday before classes began. I teach an Intro to LGBTQ Studies course. To be more specific, I created the course, and I am the ONLY faculty member teaching this course. In this class we are conducting oral histories of LGBTQ people in the local community, part of a larger archive project my University just began this summer (http://queeromahaarchives.omeka.net/). I was contacting people all summer to gather a list of people whose history NEEDS to be recorded, and in my class, I am specifically prioritizing people over 50 years old, QTPOC, and trans folx, as their histories get lost the quickest. One person in particular was very excited to participate, but was currently in hospice care. They[1] were an influential and important member of my University community as well, so the archivist and I conducted the interview ourselves, on a Saturday, in their home, while their daughter and granddaughter sat by their side, holding their hand and giving them emotional strength. It was both beautiful and heartbreaking at the same time. They spoke about things – aloud – to people they’d not met before, about topics they’d spoken to very few people about. I felt honored that they let me into their life. I met their generous and amazing children and partner, who fought back tears as we said our goodbyes after the interview. Two days later they passed away. I learned about their passing in an email 15 minutes before I was to go teach my Intro to LGBTQ Studies class, where I would detail the oral history project to the students. And their history was the first life story contributed to this project.

I completely broke down. Thankfully my partner was able to talk with me and get me ready to go to class. When going over the syllabus and the project, I was honest with my students about how important this project is both personally and to the community. Our history in the local community is LITERALLY disappearing and will be forgotten if it’s not captured soon, and my community is not unique in this respect. I managed to not cry in front of the students, but I did see a few students wipe away a tear for a person they had never met. In fact, I knew this person formally for all of an hour and a half, but I can’t begin to explain the impact they have had on my life. I have never been so committed to a project like I am now with this oral history project. I refuse to let my local LGBTQ history, and more specifically the people attached to that history, go unrecognized and unremembered. I have a small suspicion that the person we interviewed held on a bit longer to life to be able to tell their story. To tell us their life. To gift us with their experiences. And I am forever changed as both a person and an academic because of it.

THE PROFESSIONAL MEETS THE PERSONAL

In this same week, I’ve helped students navigate the typical starting back to school stresses – where are my classes, what classes are still open as I haven’t enrolled yet, where do I find parking? But, as the only out trans faculty member on my campus, and someone that our students know from the larger community, many LGBTQ students come to me for support and affirmation of their identities. For example, I had a student show up outside my classroom door as I came in to teach my Intro to LGBTQ Studies class that first day. This student, who uses they/them pronouns, said to me “I need to get into your class.” No problem I said, I can get you a permit code, come on in. They said, “No, I NEED your class. I just got out of a class that was terrible and I NEED your class to feel safe.” I again assured them, no problem, and let’s talk about that other class after our class. I met with them, and they told me their concerns, largely that they felt invisible as a queer non-binary trans person in a white, cis, heteronormative space, and that they felt they had to educate their classmates on their own identities in a class dedicated to gender studies. Later in the day, I met with the professor who had unintentionally excluded this student by not being purposeful in including non-binary or LGBT students. I had to be careful in this conversation as to not make the faculty member feel shamed, but also to advocate for my student and to educate the faculty member on topics I assumed they already knew based on their own disciplinary background. It was an incredibly draining conversation, navigating multiple political levels, on my first day back at work after months off due to surgery, and on a day that I would work 11 hours due to my teaching schedule.

Next, at the end of the first week of classes, I got a call from the director of our LGBTQ center on campus, telling me she may need my help. She had just received an email that a student was in a course where the professor used the word “fag” in reference to gay people. Just in passing. Not as in the historical context of the word or referring to cigarettes in the British usage of the term. Just calling gay people “fags.” I was livid, as was the student and the director. Thankfully, my institution has mechanisms in place to address these situations, and those wheels are turning. But I couldn’t fathom, in 2016, how anyone involved in teaching would think that was acceptable.

To top it all off, a social media flare-up happened during the weekend after my first week of classes, all having to do with they/them singular pronouns. Yes, we’ve come full circle. I had posted, on behalf of my research collaborative’s official Facebook page, a video about how they/them pronouns are not new, are appropriate, and should be used. A debate ensued in which I felt personally insulted and attacked as a trans person. But, being the perpetual educator, I tried to rationally and reasonably respond to rather childish behaviors on the part of other professors at other institutions. As Facebook threads go, the conversation was on-going for about 3 days before it all settled down, but I refuse to be silenced and marginalized by other academics, whose expertise does not fall in LGBTQ or trans studies. I refuse to allow them to tell me and others within my community that they are not valid. That their pronouns are not valid. This is not how academia should work, and I’m consistently saddened to see that this is still sometimes how academia works.

OUR BLURRY AREAS NEED SUPPORT STRUCTURES

Thankfully, I have a healthy community of queer and trans spectrum friends and chosen family, both locally and from all over the world. They have reached out to me when I, the eternal external processor on social media, have posted vulnerable and raw posts discussing each of these issues. With every post, I’ve received love, encouragement, and affirmation. On Sunday, the day when all of the events of the week were being personally processed, I posted regarding my absolute exhaustion, but also my refusal to give up. My continued commitment to fight for those who are invisible in our society – the queer man who “looks straight”, the non-binary student who uses they/them pronouns but “looks like a girl”. And because my LGBTQ friends and family are amazing, I got lots of love. And then, something amazing happened. An academic inspiration to my own career – Jennifer Finney Boylan, the first trans academic that I ever saw, who helped me know that I could be an out trans academic – commented on my post and gave me support and love. It was the first time I had cried happy tears all week, a week of lots of unhappy, sad, frustrated tears.

I’m also incredibly thankful to work at an institution that, while not perfect (nor ever claiming to be), is making real systemic steps to address issues of racism, sexism, homophobia, transphobia, ableism, and all forms of bias campus wide. I have received so much support from administrators regarding the work that I do, which is not always the norm in academia. Support from my colleagues, department chair, dean, and upper administration has allowed me to continue to do the work that I do both inside the academy and outside in the advocacy world. I am grateful and lucky to work at such a university, a privilege I do not take lightly.

SUGGESTIONS FOR NAVIGATING THESE MURKY WATERS

I want to end my own, selfish processing session with some suggestions.

1.) We talk about self-care so much in academia and advocacy circles, but from my own experience, we are terrible about putting self-care into action for ourselves. Do not neglect self-care. Yes, advocate when and where you can, but know when you have to take a step back when your body, brain, and heart can’t go any farther without burning out. There’s a saying in activism circles about self-care: it’s like the safety instructions you get on an airplane – put on your own oxygen mask before you put on anyone else’s. You can’t be an effective advocate for others if you have suffocated yourself by working yourself to exhaustion.

2.) Surround yourself, as much as possible, with those that lift you up. You need those friends and family to keep going. Allow yourself to open up to them and be honest in those conversations. Tell them what you need. Ask for them to support you if they aren’t. And allow them to hug you (if you are one who’s into hugging, as I’m trying to become more comfortable with myself). Human contact can be so healing for us. If you are partnered, allow your partner(s) to comfort you. I can’t even begin to thank my partner for helping me so much this week, by holding me while I cried, by listening to me again complain and rage against injustice, and by just being an amazing human and loving me constantly. Find that one person you can tell anything to, who can be there to support you when you need it the most, whether it be a romantic partner or just a really close colleague.

3.) Find the balance that works for you. Not every academic who works with marginalized groups operates the same in terms of activism and rabble-rousing. I’m comfortable in that world (after slowly ramping up my work in advocacy over the last 10 years), but that’s not everyone’s sweet spot. Find how you are your best in regard to being a professionally engaged academic who is also fighting for social justice. There is no mold, and one size certainly does not fit all.

4.) To academics, just because we have a PhD does not make us experts in all of the human condition. Be open to learning more, and be willing to be challenged by your students. It is the height of academic elitism to assume we are the holders of all knowledge and that it is our job to impart it all to our students. My students teach me new things each and every day, and for that I am grateful. It does not make me less of an expert, but it does make me a better teacher.

In loving affirmation and solidarity, always.

Jay A. Irwin, PhD

Associate Professor of Sociology

University of Nebraska at Omaha

 

[1] I am using they/them pronouns to protect the anonymity of this person. These pronouns are not necessarily a direct reflection of their personal gender pronouns.

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“You Poor Thing”: New Article Out in The Qualitative Report!

In this post, Xan Nowakowski reflects on and shares a recent publication in Qualitative Report (available at the link at the end of the post free of charge as an open access document) concerning the embodiment and management of visible chronic illness in daily life.  

Hello again readers! It’s a new season and a new academic year, and I’m happy to report that I also have a new autoethnographic publication coming out this week. If you’ve been following WWIH for a while, you may remember that earlier this year Sociology of Health and Illness published a piece called “Hope Is a Four-Letter Word: Riding the Emotional Rollercoaster of Illness Management”. This article, which focuses on the day-to-day processes and experiences of living with chronic disease, is still available online along with a video abstract introducing the piece.

In the process of writing “Hope Is a Four-Letter Word” I realized there was another rich topic nested within that study, and wound up breaking this theme out into its own critical autoethnography. Specifically, I focused on the nuances of visibility and representation for people whose chronic conditions produce readily apparent changes in physical appearance. The title comes from a comment made to me many years ago as the symptoms of my autoimmune disease became more visible to outside observers.

In this new autoethnography, I compare and contrast my own experiences of living inside a visibly ill body with others’ stated and implicit perceptions of what my life must be like. In doing so, I explore and refine theories of illness as deviance to accommodate multiple intersecting levels of divergence from normative expectations. I use interactionist sociological theories as well as a variety of other scholarly literature to analyze and contextualize my own lived experiences of embodying chronic illness.

As with most of my work, this piece strongly emphasizes the complex and dynamic interplay of multiple domains of life. These include personality traits, social structure, cultural context, political climate, and many more. Likewise, I focus on concepts of health equity and use my own experiences to amplify attention to persistent systems of marginalization and the voices of those affected. Above all else, I encourage other scholars with chronic conditions to share their own experiences of negotiating visible disease, and to advocate for active incorporation of these narratives in both formal systems of health care and informal systems of social support.

Please feel free to download and read the article at no cost here.

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Sacrificio

Lisette E. Torres is the Assistant Director of the Cooper Foundation Center for Academic Resources at Nebraska Wesleyan University as well as a Ph.D. candidate in the School of Education at Iowa State University.  Her scholarly interests include intersectionality, critical race theory, knowledge production, critical visual and textual discourse studies, and the sociocultural context of science and higher education.  In honor of Fibromyalgia Awareness Day (May 12th), in this post, she reflects on what she calls the “narrative of sacrificio” and how it informs her experience as a Boricua mother-scholar living with fibromyalgia.

Sacrificio. Sacrifice. To give up something for the sake of someone else. To destroy, renounce, or lose something for a belief or an end.

Growing up in a Puerto Rican household full of women, I am quite familiar with sacrifice. My two sisters and I would be reminded almost daily about the sacrifices that family members have had to make for the love of family and country – my grandmother’s humble beginnings living in poverty on a farm on the island, my father and aunt having to walk to school (sometimes with no shoes), my grandmother coming to the mainland U.S. to work in a factory, my father fighting in Vietnam, my mother managing the household, my father having to travel 2 hours to and from New York City to provide for the family . . . the list goes on. These stories of sacrifice were meant not only as a way to demonstrate how resilient our family has been but also to remind us of the responsibility that the three of us had as Puerto Rican women. We learned that it was our obligation to always try our best and to give up our own wants and needs for the family. Social scientists often refer to this socialization as instilling the values of familismo, or one’s prioritizing family over one’s own needs, and marianismo, the notion of the assumed submissive female gender role of Latinas.

However, this narrative – the narrative of sacrificio – is one that I have also experienced as an academic. The “publish or perish” mantra, working more than 40 hours per week, and the unspoken expectation that scholars (particularly women) put off having families or give up having families all together encompass some form of sacrifice, whether it be time, money, or personal fulfillment. For women of color in the academy, this sacrifice is much deeper. It is the fragmentation of the mind, body, and spirit or the creation and acceptance of multiplicity (Ong, 2005). It is forgoing speaking the language of our ancestors to converse in the elitist, colonial jargon of the ivory tower. It is physically moving away from our families and communities in pursuit of job opportunities, which causes a multitude of additional challenges that come with relocation.

From my own personal experience as a Boricua mother-scholar, there is a great tension between having the racialized gendered identity of a Latina and an academic identity. I often feel pulled in different directions. On the one hand, I want to spend as much time with my son and husband as possible. I want to keep a clean house, provide healthy meals, and be present with my child, who is growing up so very fast that I do not want to miss a thing! Guilty about putting him in daycare, I forgo working on projects in the evenings and on weekends to try to get the most of my time with my family. I also tend to put aside some of my goals and needs in order for my son and husband to be happy; for example, I often have to take the day off to take care of my son when he is sick and have never expected my husband, who is also an academic, to do the same.

On the other hand, I am well-aware of the social and structural challenges of being a woman of color in the academy (Gutiérrez y Muhs, Niemann, Gonzàlez, & Harris, 2012). We often have to work harder and longer to receive the same recognition as our White, male colleagues. The purpose and content of our scholarship as well as our inherent intelligence is questioned, and heaven’s forbid that you have a family! The baby penalty is very real; mother scholars are often viewed as being less committed to their field and to the academy as compared to their male counterparts. They are less likely to find a tenure-track job, receive little to no assistance with childbirth support or childcare services, and do not receive the proper mentoring or career advice to help them manage family and work. Add stereotypes about women of color being fertile and emotional and you can see how women of color in the academy are in a double-bind (Malcom & Malcom, 2011) that is even tighter when you incorporate motherhood and the narrative of sacrificio.

As every academic knows, there is little time and energy to devote to research, teaching, service, and one’s personal life. Every hour is precious. We talk about “work-life balance,” though we know this is a complete myth. We try to remind everyone about self-care, exercise, and finding time to recharge (which we need to do, do not get me wrong!), all the while trying to ignore the culture shift necessary to change the neoliberal influence on productivity in higher education. Yet, we still judge others based on what we assume about them and the expectations of academia. If someone leaves campus before 5 p.m., then we think they are slacking off or cutting corners. Daily conversations revolve around “how tired” we are because we “stayed up until 2 a.m. working on a grant proposal/manuscript/course.” We complain about all the varied activities that we are engaged in while simultaneously looking down on others who may not be as involved on campus. We are complicit in perpetuating the culture of busy and the narrative of sacrificio among our colleagues. And we do this without considering the impact it has on women of color or on individuals with chronic illness/pain.

Personally, the narrative of sacrificio – from my Puerto Rican upbringing and from the academy – wears on me daily, both psychologically and physically. In the spring of 2015, I was diagnosed with fibromyalgia, a chronic syndrome with no known cure that is diagnosed by exclusion. The symptoms can vary among people, but they can include the following: widespread muscle and joint pain, fatigue, chronic headaches, hypersensitivity to sensory stimuli (e.g., cold, heat, light, sound, and touch), inability to concentrate (known in the community as “fibro fog”), stiffness, restless sleep, mood swings, and depression. These symptoms have made my career in academia difficult, aside from the structural challenges I also face as a woman of color who is also a mother. However, the words used to describe my lived experience with chronic pain are extremely limiting and cannot fully illustrate how it shapes the narrative of sacrificio in my life. Despite limitations in language, I will try to explain what it is like to have fibromyalgia. Having fibromyalgia is . . .

  • Sleeping a full 8 hours but getting up and feeling as if you only had 3 hours of sleep
  • Waking up in the middle of the night with non-stop thoughts or tingling arms/legs
  • Getting up in the morning and feeling like you worked out all night because your body is so sore and stiff
  • Like walking through really thick mud or walking around with weights around your ankles all day
  • Losing what you were going to say before you can even say it; the words get stuck and you have trouble with recall
  • Losing your train of thought in mid-sentence or forgetting the names of common things (i.e., you know what it is but you cannot get the word out)
  • Revisiting files, readings, emails, notes, etc. multiple times because you cannot concentrate long enough to remember what you read/saw
  • Feeling like a rag doll on a rack, limbs being pulled out of their sockets
  • Never feeling completely comfortable in a seated or resting position
  • Being hypersensitive to temperature changes; for me, I am almost always cold and cold temperatures cause deep pain in my bones
  • Being hypersensitive to touch; there are days when I literally cannot stand wearing socks!
  • Feeling like an open nerve
  • Feeling on edge, like you are ready to fight at any time
  • Feeling incredibly disappointed in a seeming lack of progress due to energy level
  • Feeling guilty and depressed that you cannot do all the things that other parents/academics can do

When a chronic condition like fibromyalgia intersects with the narrative of sacrificio found within Puerto Rican culture and the academy, it makes an already difficult journey as an academic almost impossible. As a mother-scholar of color, I am continuously trying to avoid the cultural taxation (Padilla, 1994) placed on faculty of color, balancing being an advocate for students of color on campus while also not participating on every single institutional diversity committee. Like most scholars of color and working moms, I work twice as hard to receive half the credit. I worry that I am not a good scholar or mother, knowing that I am being judged by others on both fronts. Stereotype threat, imposter syndrome, and racial microaggressions are daily challenges for me that can wear on the mind, body, and soul. I know that I already have three strikes against me in a White patriarchal society – I am a woman, I am a person of color, and I am a mother. I am viewed as “less than” and “unworthy” of being in higher education. I am already presumed “lazy,” “inarticulate,” and “incompetent” by the mere fact that I am a woman of color, and I sometimes fear that my fibromyalgia adds to those assumptions.

In an effort to confront the narrative of sacrificio in my life, I have decided to accept that I have a finite amount of energy to give due to fibromyalgia and, since stress can exasperate my symptoms, I must embrace what Dr. Eric Anthony Grollman calls a radical reprioritizing of my life. As such, I have started practicing Taiji every week and taking time out for a massage every month, which helps with stress and pain management. I try to not to bring work home with me, accomplishing as much as I can in the office as possible and being okay with that. I also try to practice slowing down, with great reminders from my colleagues Dr. Riyad Shahjahan and Dr. Kimine Mayuzumi on their blog. While I am working on me, I want to share my lived experience with other women of color who suffer from chronic illness who may also be academics and mothers. You are not alone and the narrative of sacrificio does not define you! We do not have to sacrifice ourselves. As our sister in the struggle, Audre Lorde, wrote in a Burst of Light (1988), “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

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

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.

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When it hurts not to write

In this post, J reflects on their writing processes, and asks readers to reflect on these aspects in their own lives and the way writing or feeling unable to write at a given moment feel and take shape in our own lives.

How do you go about writing?  What is your process?  What do you do when you cannot write for any given reason?  Do you look forward to writing or is it something you have to make yourself do?  Do you operate via a structured schedule, with set time limits and goals, and other rules to keep you on track?  By contrast, do you operate in a more fluid manner writing when the feeling comes or an idea presents itself or some combination of these and other factors?  Do you need to be indoors, outdoors, anywhere specific to write?  Do you keep little handwritten notes or recordings on your phone or maybe a journal littered with in progress ideas and analyses?  These are simply a few of the multitude of options and variations I have come across among other writers over the years.  In this post, I want to share my own experience to encourage others to reflect on how you go about the process of writing and what writing is like for you.

In my case, writing is simultaneously a major part of how I make a living and a huge chunk of my personal life.  Very few things that I have encountered in this world can match how wonderful it feels to write.  I write creatively, academically, publicly, privately, empirically, theoretically, collaboratively, and solo, and attempt to write as much as possible because it is a prime site of fun, pleasure, and enjoyment for me throughout my life.  Despite these lovely aspects of writing in my world, it is also deeply painful for me when I cannot write – I feel lost, like a part of me is missing – and no matter the reason, anytime I cannot write my moods, emotions, and even self concept (i.e., my own estimation of who I am, what I’m worth, etc) suffer greatly.  Put simply, for me writing is a delicate ongoing balance between pleasure (when I can do it I am filled with joy) and pain (when I cannot do it I feel terrible).  I can’t pretend this is the same or different for other writers, but this is what it feels like for me.

All of the above is complicated by the fact that I (best I can tell) have no control over whether or not I can write at a given time.  Likely tied to other elements of the way my brain operates, I go through shifts or fluctuations wherein sometimes writing is the easiest, most natural, and smooth experience in the world, and at other times I just cannot do it no matter what I try or what deadlines or projects I have at my disposal at the time.  In the former case, I’m basically in paradise writing every day and rather communicative in other ways.  In the latter case, however, my entire mood shifts downward, I become very quiet and isolated, and I feel broken or lost.  This ongoing experience means that I write in cycles – or bursts as a close friend of mine termed the process a while back – wherein the difference in me, in what I produce, in how I feel, in how I communicate, and in how I spend my time is noticeable to those closet to me (in fact, many times these wonderful people get very worried about me during “not writing” times because of how down, distraught, and isolated I become and I’m quite lucky to have people who care so much in those moments and reach out to check on me).

This cycle in many ways dictates or shapes the rest of my life.  From August 2014 until the end of January 2015, for example, I could not write, and as is generally the case during such a “not writing” period I was very isolated, depressed (both emotionally and in terms of clinical symptoms) most of the time, and people I collaborate with had to basically wait until the part of me that writes – as one friend put it – “came back to life.”  On the other hand, from February 2015 until the end of November 2015 I experienced a nonstop burst wherein I wrote every day, filled up the inboxes of colleagues, collaborators and friends, and felt happy, satisfied and able to be social (as much as I ever am).  At present, I’m somewhere between the two extremes, which is honestly a new place for me.  I can write a little bit, but its harder than when I’m “on” one of my bursts, but I also have days where I just stare at the screen and want to (or do) cry and scream.  I don’t know if this is a new addition to the cycles or a one time thing, but I feel like I’m located in between the two versions of me I’ve become comfortable with.

This newfound in between “writing” and “not writing” led me to wonder what writing is like for other people.  While this is something I have talked with many people about, I thought it might be useful to ask on a broader scale what the writing processes looks like for others, and also to offer my own experience for anyone who has yet to learn that there is not just one way to go about writing (a curious lesson I come across that some undergrad and graduate students have picked up from some unknown sources).  After years of seeking advice, figuring out my own methods, and working with people who have very different methods (for example both Xan and Lain here at Write Where It Hurts have different writing processes and experiences than I do), I’ve become fairly certain that there are a wide variety of ways people go about the process of writing.  As a result, I want to encourage others to think about these processes, what works and doesn’t work for a given person, and how we can utilize such insights to both Write Where It Hurts and manage the ways it may hurt when we have trouble writing.

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

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.

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Ripped Pages, Erased words – lessons from the unintended audience

A writer across genres and disciplines, this anonymous contributor is playing the professional field. She is debating whether to continue tenure track pursuits or focus on a career that lets her write what she chooses while pursuing advocacy work. She is grateful for the conversation/reflection that inspired this essay. 

There were two times in my life – once as a child, another as a young adult – where I was asked to destroy my words. In both situations, men asked me to get rid of my words – a journal and a blog. As a survivor of sexual assault and a feminist scholar aware of gendered language and silence, it was important for my own journey as a writer to fully name and forgive how I had responded to write as a result of those moments. I write this to remind myself why I write, for whom I write and to face the fears that have emerged in what I could/want to write and publish.

First, the journal writing I was doing as a 10-11 year old was framed by divorce, moving, death of a childhood friend and grandparents’ return to Puerto Rico. In that time period, abstract thought developing in my brain along with a great deal of loss in my environment creo un sentido de rencor, angustia y resentimiento. I was angry at everyone before I was a teenager. I had been lost, confused and I felt worthless given how much consistency I had lost. That anger was private until an elder read it. After reading it, he demanded I throw my words away because of how disrespectful and hurtful they were to the people I was framing in a negative manner. My words, my private thoughts were not protected because the journal was neither locked nor stored in a secret place. As a child I internalized the idea that my words did not belong to me. Once I ripped out the pages, I started writing fiction. Fiction as escape, as release, as an optimism I would not allow myself to find in an environment until I grew to live comfortably as a lesbian in a city located in the Western United States.

Ten or eleven years later, I was still acting and writing ‘straight’. I was writing straight fantasies, very PG, I thought, and the object of my affection demanded I take down the blog. Written without ever thinking he’d see it, I grew mortified that someone would share it, especially given the greater social context in which my ‘feelings’ for him were shared with him and how long it took him to tell me that someone told him. The person I was writing about yelled at me for how I felt, for writing it down and for publicizing it the way I had. Again, my words no longer belonged to me and I had to get rid of them. I did. Within months, I stopped associating with all involved. The wounds of being uncovered, of leaving and all that neither of us understand of each other’s life lay as an ever-increasing gap between us. Not just for the manner in which something public-private had been shared, but, more specifically, for what I understood that to represent at the time.

In both of these instances, I took for granted where I was writing. As a child, I needed locks and I needed hiding to keep my words mine. The uninvited and unintended audiences wanted to alter/erase my words because of what those words meant to them. Those words were not direct weapons against them. For me, in either instance, the words attempted to explore hurt, frustration, loneliness. The losses and change were overwhelming with minimal outlets available compared to the extent so many were suffering. I wrote as a means to escape, to let go of feelings. To have that taken from me, literally ripped out, informed fantasy writing that would sustain me until high school gave me access to password protected writing.

As a college student teetering on living in truth/coming out and trying to find smaller ways to be different, blogging was a way to connect with a handful of friends who had online journals and remained as invisible as I intended to be. Like in my childhood, I wanted a way to have a journal go with me wherever I was, operating on the belief that I was insignificant enough not to be distributed. It served as a way to explore curiosities, questions, internalized hetero-romantic idealism and other ideas that are of little significance to me now. In those moments, they were growing pains on paper/on screen. Growing pains that were mine. A question emerged that I will address after explaining how I viewed those two moments.

Those writings were a necessary process in my journey. Tremendous loss shaped how I perceived family because of how little control we had over our lives and over the affects of others’ choices on my ability to have, what I thought, was a normative childhood. No one wants to lose so much so quickly. Divorce and death shake foundations. Those I grew to rely on dispersed, and, in that, the grief of various communities – blood and peer – overwhelmed me. Grief transformed to hate because I could not bring my friend back. I could not go back to the house I had lived in for ten years. I did not have childhood friends I played with living next to me. I had more than my uncle had at my age, but that more was not something I would understand or forgive until others’ affluence taught me the power and resilience I had gained in that year of intense loss and change.

As for the online journal I kept in undergrad, I wanted to rewrite ownership of my sexuality. I didn’t think I owned it because – whether a gender or a community – I had spent a lifetime internalizing that my sexuality was not my own. Women grapple with this as much as those who struggle with being queer. I only allowed myself to understand that I had to hide, negotiate and perform resistance to the factors that informed the lack of ownership regarding my sexuality. Because of how new I had been to that community, because of the struggle I had relating to and working with cismen (of color), I was terrified of sharing the complex emotions I had around my body. When I did, I felt I was giving up too much too quickly. It has taken me years of poetry, therapy, and journaling to forgive myself and those young men for how naive we were about bodies, power, sexuality and desire.

The ownership others take over words based on their age/gender internalized authority remains a struggle in many communities. As writers, we each contend with the implications of ownership and measurement exercised by those who use social media to factor into whether one will be hired, published in the future, or deemed socially appropriate because of how in/visible we hope to be and because there are members of our audience we do not know. Reflecting over reactions remains key because there is a great deal we learn from ourselves in the process. Those lessons can, when we allow them to, spur our creative, intellectual and spiritual growth. Neither silence nor censorship will control the audience that thieves itself into the words to which we do not invite them. Neither silence/self-censorship will adequately erase the effects of our experiences. Writing is a choice, a demand for those of us who have born witness to suffering brought on by silence.

The quality of our writing can improve with awareness of how we control what we choose. As scholars, we control that which we are most informed. I take this out of my journal to share on this blog out of a need to forgive myself for who I couldn’t be for myself in moments I needed to express myself while protecting the integrity of my right to feel. As I grow as a writer, protection remains key, which is why I choose for this to remain anonymous for now. I want to control where my writing goes next. I want it to go to a place where, in the future, attaching my names to these words will not cause me nor any of the people in this narrative harm.

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

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.

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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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