Category Archives: Physical Health

“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.

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.

Beyond White Canes: Translating Experiential Learning into Student Support

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Building on last week’s post, this week Xan Nowakowski explores importance of supporting and including students with different functional and ability statuses in our research and teaching.  

In my last post honoring White Cane Day, I shared some experiences from my childhood and adolescence that helped me to think about how people with blindness and visual impairment may experience life, as well as the broader importance of taking a proactive approach to accommodating students with disabilities. Today I’ll be sharing a story from early in my teaching career that highlights prejudices and misconceptions students with visual functioning differences often face, ways to address and remove those barriers, and benefits of creating inclusive environments for learning.

I got interested in issues of functioning and accommodation from a young age because my mother, a neuroscientist with multiple forms of visual impairment, helped me to learn about disability both within and outside of educational settings. My own experiences with loss of physical functioning later in life also contributed to this learning, and to my ability to put thinking into practice. These experiences also helped me to understand the rights and responsibilities outlined for students and educators in the Americans with Disabilities Act, first and foremost the idea that people are entitled to “reasonable accommodations”.

So when a graduate student I had just spent 10 minutes on the phone with about participating in a research project sounded hesitant and nervous the whole time we were on the phone, and then said “there’s something else I need to tell you” in a hesitant tone after I expressed enthusiasm for working with them, I certainly didn’t expect the next words out of their mouth to be “I’m blind”. I hadn’t assumed that they could or couldn’t see—this was the first time I’d ever spoken with them—but blindness didn’t seem like a reason to worry that they wouldn’t get the opportunity to participate in research. One of the best scientists I knew had significant vision impairment, and they worked in a highly visual field of study! I had friends with no light perception at all who were engineers, computer scientists, teachers, lawyers, artists, and so much more.

I stayed silent, waiting for the rest, waiting for them to tell me why their blindness might be a barrier to participating in my project that couldn’t be addressed through accommodations, turning the question over in my mind and coming up with nothing. Finally I said, “Okay…I’m sorry for sounding so obtuse here, but why would that impact my decision about working with you?” The silence that followed seemed to stretch on forever before they said “You don’t see that as an issue? I mean, I can’t see *at all*. I have no light perception.”

I didn’t want to dismiss their read on the situation, so I tried to affirm their concerns while also assuring them that they’d be fully accommodated and included. “No. Should I? I’m thinking about what kinds of challenges here could prevent you from participating, and I just don’t know how we wouldn’t be able to work around each one. If you need transportation, that’s easy—you can just ride with me when we go out into the field. If you need assistive technology that you don’t have already, I’ll get it for you or partner you with another student who can do the looking while you do the talking. If you need directions on how to do things that don’t require visual input, I’ll give them to you. And if I screw up any of this, you can be blunt with me about that and I’ll make any needed adjustments.”

My student sounded a little gobsmacked, but accepted my invitation for them and their guide dog to meet with me at my office and get started on the project. I then sent them an email with detailed directions using non-visual landmarks to help them navigate my office building—things like how many paces it takes me to get from the main door to the hallway from my office, when they’d hear a water fountain running, when they’d feel a vent blowing on their face, what the carpeting near my office would feel like beneath their feet. They showed up early, accompanied by a black Labrador Retriever who curled up at my feet while my student and I talked. We went over the key activities for the project, and talked through how we’d approach each one. They showed me their Braille translator, and all the features they liked to use on their computer to read screens and create documents. To this day, I have yet to work with a student who creates clearer or more concise PowerPoint presentations.

My student explained to me that this was a new experience for them—to have a professor show enthusiasm for working with a blind student. This troubled me deeply, and I asked them to promise that if they ever felt even a bit marginalized while working with me, they’d tell me. “If you’re left out in any way,” I stressed, “that’s my problem, not yours, and I have to take responsibility for it. It’s my job to think about what an educational experience is going to be like for you and plan accordingly.” They shook their head. “That’s just it,” they said. “You’re never going to make me feel left out. I already know that. You’re different. It’s like…well, those directions you gave me. It’s like you know how the world feels to me.” Then they paused. “Is that because you have visual impairments too?”

I thought about that for a moment. “No,” I said. “But my mother does. She’s a scientist who built her career on doing incredibly precise and detailed visual tracing of cells in the developing brain. She perceives light, and she uses some different technology than you do, but I learned enough from her to use my imagination. It’s not that hard to close my eyes and think about the input I’m getting from my other senses. And while I don’t have vision limitations myself, I’m losing function in my hands because of an autoimmune disease.” I asked if I could shake their hand, felt them flinch at the icy quality of my skin. “Cold, right? I don’t have much circulation in my fingers. Sometimes they won’t grip and sometimes they freeze up so I can’t use them at all. So I know what it’s like to have a disability and feel terrified that you won’t be able to finish school because of it.”

This seemed to put my student totally at ease, and we got down to real talk about our health conditions and the journeys we’ve taken to manage them. My student showed me one of their glass eyes, painted to exacting perfection. They told me about some of the absurd stereotypes about blindness they had encountered on campus. I thought the strangest one was the anger people had shown when my student wasn’t using a cane to navigate the sidewalks, as if it were their responsibility to wear a sign announcing to the world that they had no light perception. “I’m not about the cane. I have one, but I don’t use it much. Things are so much easier with my dog, so I bring her anywhere I can. And sometimes I just use my hands to navigate. It really depends on the situation and how I feel that day.”

We went over the survey quickly, and agreed to meet up at the formal training for student assistants in a couple of weeks. Having a non-sighted student participate in the project turned out to be a huge win for our team, as well as for their own confidence about what they could accomplish with their graduate degree. Other students didn’t miss a beat, making sure that walking paths in the classroom were clear while also not pushing any assistance that wasn’t desired. My student came prepared with Braille versions of each survey and showed them to the other research assistants. Partnering up wasn’t necessary when the time came to do data collection—we arranged piles of the two surveys at 9 o’clock and 3 o’clock at my student’s station, and they used their Braille versions to read the surveys to anyone who requested help.

My student took the lead on developing presentations to share our data with the community. We’d been learning all summer about health challenges in Havana, a small town north of Tallahassee, and my student excelled in putting all of the data together in a community-friendly PowerPoint. They worked with our other graduate student, who had more quantitative training but did not enjoy qualitative analysis or making presentations nearly as much, to get some statistics for the slides. Both students were invited to speak to the community, but only one accepted—my sighted student hadn’t found their comfort zone yet with public speaking, so I let them take the lead on writing a research report instead while we went out and talked to area residents.

At the meetings, participants were enthralled by the Braille notes my student used to present our results and get feedback from the group. Several people mentioned that it made them feel more comfortable talking about their own health challenges to meet researchers with different functional limitations and chronic conditions. What was a disability in a technical sense became an opportunity in a social one—an indication that people could speak openly about their own experiences without shame or judgment. I had seen this time and again in my own work, but my student said it was a first for them. “It had better not be the last,” I noted. “Your professors and employers have a responsibility to accommodate you for any task that you can safely do.”

It has been a few years since this particular student studied on campus, with or without a white cane. But we have many other students with different types of visual impairments, all of whom go about navigating the campus a bit differently. If you’ve met one person with vision challenges, you’ve met that one person, and you probably met them under a specific set of circumstances where they approached tasks a certain way. Maybe you didn’t know what the world looked like to them, or if it looked like anything at all. But if you asked yourself that question, and really took the time to think about the answer, you performed the most basic task of accommodation and inclusion. As more evidence of that sort of thinking appears on our campus each year, we all have new opportunities to take that thinking to a higher level, and ask ourselves what we can do better in the future.

White Canes and Black Coffee: Reflections on Different Ways of Seeing the World

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In this post, Xan Nowakowski discusses the importance of White Cane Day and accommodations for students and scholars with different levels of visual functioning.  

I walked into my office smiling last Thursday because change was in the air. It was White Cane Day, and this year our campus was decked out with materials to promote awareness and accommodation for blindness and visual impairment. I smiled because I’d never seen so much activity here for White Cane Day before, and it made me think about other positive changes I’ve been noticing lately to make the campus more accessible for people with limited sight. We’ve installed accessible pedestrian signals that chirp assertively when someone gets near a construction fence or crosswalk. We’ve increased the size and prominence of trigger plates for automated doors, and on some of the signs for classrooms and conference rooms that use Braille text. Hopefully these improvements are signs of good things to come.

Visual functioning has been on my mind a lot since I was very young. Despite having a lot of other challenges with physical health, I have always had strong eyesight. Even during times where my vision was affected by severely low potassium levels or side effects from medications, I was always able to see more than well enough to navigate different physical environments, drive a car, and read written text. But I grew up thinking about accommodations because of what I learned to do for others in my life, beginning at home.

My mother is one of over 85 percent of people with significant visual impairment who have few challenges with light perception. By contrast, only between 10 and 15 percent of people who score as “blind” on current clinical assessments have no light perception. I learned over time that when my mother said that she was “blind without glasses”, she didn’t mean that she couldn’t see at all. Rather, she could see a sort of “big picture” of the world with no details, either up close or at distance.

I watched my mom use adaptive techniques and technologies to complete every task she’d set for herself during the day to her exacting standards. Mom is a developmental neuroscientist by training, and spent about 30 years doing laboratory research and intensive neuroscience education before shifting her focus more prominently to teaching, course leadership, and curriculum development. When I was little, she’d fiddle with her top-quality Zeiss microscope to get a tiny section of mouse brain perfectly into focus. Then she’d trace cells onto white paper in red and blue pencil, marking the path of the ones she and my father were tracking as the brain continued to develop.

I always wondered how she achieved that level of precision in her work—how anyone would. And as my autoimmune disease slowly destroyed nerves and blood vessels in my hands, and my ability to use pens and pencils for more than quick tasks along with them, I was hit with the sharp realization that I couldn’t have done her job without the aid of a modern computer. Other things, I could have done more easily. My mother is notorious for making beautifully detailed and labeled slides for her students, which she builds by getting her screens adjusted just right so she can see the text clearly at close range. It’s a simple accommodation that a lot of people make, and that technology has made much more available to people throughout the world.

Mom’s attention to detail is razor-sharp even moments after she wakes from sleep—always has been. It’s what made her a technical wizard in the lab when she first got her start as a scientist. I’d watch her measure scoops of coffee for the percolator, each one perfectly level and symmetrical.   Sometimes she’d tease me for asking her about something visual early in the morning, before she had her trifocal glasses on. Her jokes helped me learn that what seems like a perfectly reasonable question to a person without visual impairment can seem totally absurd to someone whose vision functions differently. The fact that she could measure out coffee to the grain didn’t mean I could just expect her to process new visual information without the right glasses.

As I got older, I met many other people with varying degrees of visual impairment. From a colleague with Down syndrome, I learned that often what prevents people with this condition from living alone is not cognitive functioning challenges, but rather visual impairments that make getting a driver’s license impossible under current law. From a friend with glaucoma, I learned about smartphone apps that make it easy to read and write on a small device. From a friend with Duane syndrome, I learned about different types of special lenses that help to strengthen muscles that support the eye.

I kept learning from my mother, too—when the retina detached in her “bad eye”, when the macula puckered in her “good” one, when the cataracts started to grow from multiple surgeries. Then she had the larger cataract from her former “good” eye removed and we started playing a game called “Camera 1, Camera 2” where she’d close one eye and then the other to make the world appear in white or yellow tones. It felt okay to laugh in those moments. After all, this surgery was the first to improve Mom’s visual functioning, and she actually had to return to wearing an old pair of glasses with a weaker prescription.

Just from watching and listening to my mother over the years, I learned a lot about how people with different types of functional limitations complete tasks and solve problems. I also learned a tremendous amount about how to start constructive discussions surrounding ability and disability, and create inclusive environments for learning. Mom won several awards over the years for her work in medical education, and her office was constantly filled with students seeking help negotiating challenges in the classroom. She’d share some of these stories with me, never naming any names but making sure I understood the basics of each case.

Always the educator, my mother would ask me how I’d handle accommodations for that student if I were teaching the class. We’d talk about all of the different intersecting issues in providing reasonable and helpful accommodations: fairness to students with accommodations as well as other students, responsibilities of professors versus those of students, current laws and school policies about accommodations, social responses to people with disabilities, and much more. I didn’t know it at the time, but the education I received from my mom about disability and accommodation would become a very important resource for my own teaching activities later in life. Indeed, it would become a cornerstone of my approach to student engagement. In my next post, I’ll discuss some of the ways in which these early-life experiences have helped me create opportunities and remove barriers for students with blindness and visual impairment.

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.

When it won’t go away – on managing chronic conditions in the academy

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An important part of the initiation of Write Where It Hurts came from Xan Nowakowski and J. Sumerau’s experiences collaboratively managing chronic conditions in relation to their professional and personal relationships.  Building on Xan’s previous post in this area, in this post J. Sumerau reflects on aspects of managing chronic mental and physical health conditions in hopes of facilitating dialogue about these issues within and beyond the academy.

Although often invisible to the naked eye in social and professional interaction, estimates suggest as much as half the American population live with chronic mental and / or physical health conditions, and must manage such conditions throughout their daily lives. In this post, I reflect on some of my own experiences as one of these people in hopes of facilitating dialogue on this subject.

In so doing, I am seeking to build on the bravery of other scholars who have already addressed experiences with chronic conditions in many ways. Whether we look to recent blog posts (often anonymous) by people exploring, for example, aspects of bipolar conditions, experiences along the autism spectrum, managing dissociative identity disorders, or persistent anxiety, we can already see the silence around chronic conditions beginning to dissipate. I thus seek to contribute to these voices in hopes of continuing to, as DeWelde and Stepnick title their important volume exposing gender inequality in the academy, “disrupting the culture of silence” around chronic conditions in the academy.

To this end, I want to start by noting that on the surface – or from the outside so to speak – I generally appear to be a rather productive scholar. In fact, I regularly encounter people (well meaning, kind and complimentary people, best I can tell) who say things to the effect of “how do you get so much done” or “I wish I was as productive as you” when they realize that I only began graduate study 7 years ago but already have over 30 academic publications. I appreciate the kindness and compliments these people offer me, and I am proud of my work personally and professionally because doing this work is the closest I ever get to feeling like I might fit in somewhere.

I do not, however, note these experiences to boast in any way. Rather, I note these experiences because people might never think of me when they hear about scholars managing extremely painful and difficult chronic conditions. I have regularly heard people at conferences and in other settings assert negative stereotypes about people with enduring mental and physical conditions, which suggest these people are rare (false) and / or that these people are obviously or automatically different or deviant (false) and / or that visibly managing conditions or otherwise these people are somehow less capable than their normatively bodied or mental colleagues (false again). Like many of the scholars I am aware of managing such conditions, my constant struggle to exist is invisible to the casual glance, and still others face similar struggles managing more visible conditions. In both cases, every scholar I have come in contact with who is managing one or more chronic health conditions is at least as competent as any other scholar I have seen and often actually perform well above the average in their fields (Charles Darwin likely being the most famous example).

The mismatch between stereotypes and actual scholars managing chronic conditions is likely familiar to anyone versed in inequalities scholarship. Similar to people stigmatized via normative or dominant notions of race, class, gender, sexualities, and age to name a few, people whose minds and bodies work differently are typically framed as deficient or deviant. We are called diseased instead of simply different, our experiences are called disorders instead of variations, and our abilities are called lesser instead of diverse. In all such cases, we are assaulted for not fitting artificial norms about how human bodies and minds “should work” so that others who benefit from these norms do not have to reevaluate their own mind and body assumptions. As has traditionally been the case, many of us have realized that these patterns will only change if we begin announcing ourselves to the rest of the world and challenging mental and physical ablest assumptions embedded within academic and other social arenas.

To this end, I would like to share some things about my experience managing chronic conditions that I hope people will think about when they assume bodies or minds should be or work in a certain way. While strangers, colleagues, and acquaintances may look me up, meet me at a conference, see me speak, or otherwise come into contact with me, their view will generally be different from the people closest to me. While such people (based on their reactions to date) will likely see my “productivity” or “talent” first and foremost, those closest to me see how little I sleep because my brain won’t stop working, how many hours and days (and even at times weeks) I spend curled up in a ball in the dark because I feel like the world is trying to kill me, how confusing normal or common speaking patterns are to me and how much energy it takes me to have a five minute conversation with another person, scars scattered around my body from the regular times where it feels like my skin is too tight, and the constant headaches I live with and medicate.

The people closest to me also know that I always keep pills and ice packs nearby because I’m always in at least some physical pain due to issues with my legs. They also know that I regularly hear and see things that other people do not, and get used to me randomly having conversations with people and things they cannot see when we’re together. They also understand what its like to get a call from me when I’ve forgotten who I am, when I don’t know where I am, when I’ve gotten lost on the way to work again, when I think they’re dead but I want to check, when I think I’m dead but want to check, or when I can’t figure out how to put on clothes or feed myself. They also have the patience to look after me when, for example, I wander off following something that they can’t see, disappear mentally in the middle of a conversation without realizing it, or ask them if they’re real because I suddenly don’t know. They also understand when I throw out all my spoons because I’m convinced they’re out to hurt me, when I go whole semesters without working on our projects because my brain just won’t work, when something as simple as going to the grocery store terrifies me or tires me out emotionally, or when I just can’t interact at all for a while and need to be completely alone in silence or with music.

The people closest to me also are not surprised when I don’t buy shoes with laces because they already know that while I can memorize books I can’t tie shoelaces. They are not surprised (and often kindly try to protect me) when the thought of anyone being behind me terrifies me, when human contact makes me literally sick to my stomach (a wonderful example was a friend at a conference who once made controversial statements each time someone went to shake my hand so they would be distracted and I wouldn’t have to explain why I was not going to touch them), or when I have trouble even breathing in a large group of people (even people I like and care about) because I feel like the presence of others is suffocating me. They can even explain to other people why I spend so much time outside since sometimes walls feel like cages, why its much better to contact me online where I don’t have to talk to or see anyone, or how I might shift from the most hyper person they’ve ever met to the most comatose person they’ve ever met within a few minutes.

As you can probably tell, the people closest to me are wonderful people who make a very difficult world more comfortable for me in numerous ways. I find myself appreciating them more than words can say every moment I’m conscious, and without their efforts every aspect of my life other than writing would be much more difficult because I work in a profession where who you know, networking, and other social interaction skills are often just as and / or far more important to careers than how productive you are. This was a hard lesson for me when I arrived in the academy because I can write 10 or more solid articles in a semester but I will never know what to say at a mixer or conference surrounded by frightening strangers. This is all the more important because the conditions that facilitate the above examples are not likely to ever go away, and thus an academy based on the ability to “make small talk with the right people” automatically disadvantages me no matter how good a researcher I am or become.

I am able and willing to share these aspects of my experience, however, because in many ways I have been lucky enough to receive incredible emotional and instrumental support throughout my time in the academy. The people closest to me and especially my life partner, for example, are very understanding and protective of me, and many of them have the resources to protect me even if my disclosure leads other to stigmatize me in some regard. Likewise, I am incredibly productive because, as Matt Damon’s character says in Good Will Hunting, when it comes to research and writing – I can just play. I might not be able to do most of the things normatively bodied and minded people do so easily every day, but I write on as high a level and as fast as anyone I have ever met. The same things that make most of social life so hard for me provide me with abilities that are perfectly suited to the scholarship part of an academic career (i.e., I can read a book in an hour and memorize it, cite findings from years past off the top of my head, take apart anything I read or see or hear and turn it into patterns and themes without even meaning or actively trying to, etc.).  Further, from my earliest days in graduate school to my present academic position, I have had mentors in my programs, in other programs, in Sociologists for Women in Society, and in Society for the Study of Symbolic Interaction who were and still are kind enough to accept and help me in countless ways as I try to survive the necessity of being social in the construction of an academic career.

It is also with these resources in mind that I remain well aware that many people managing chronic conditions everyday cannot safely speak out about their experiences, marginalization, and /or aspects of ablest bodily and mental assumptions and norms that impact their academic careers. I also know all too well that in many cases chronic conditions do limit productivity in terms of normative metrics like publishing in much the same way they limit me socially, and the only way to shift these burdens is for those of us who can to start speaking out and advocating for a more realistic understanding of the multiple aspects of scholarly experiences and lives and the natural variation in the ways human bodies and minds operate.

I thus share my experiences in hopes of facilitating dialogue concerning the management of chronic conditions in the academy (and elsewhere), steps we could take to provide resources for such management within academic settings and programs, and concrete ways we could begin to shatter the stigma and silence surrounding this prominent and widespread experience. For many people, mental and physical conditions will not go away, but if we work together, we could get rid of the ways current academic norms, simplistic and conformist assumptions about bodies and minds, and silence surrounding mental and physical health within and beyond the academy punish people for their pain. In so doing, we might instead create a culture where people experiencing the wide variety of empirically common bodily and mental types and forms are celebrated, affirmed, and accepted as full beings capable of providing diverse perspectives on a complex bio-social world.