Category Archives: Health

When Life Hands You Lemons, Write a Journal Article: An Exploration into Navigating Trauma as a Academic

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In this post, a researcher studying the experiences of, reactions to, and management of trauma reflects on the ways these topics intertwine in their life and work over time. 

 

It was my turn to visit you. I canceled the day before and said finals were killing me. You said you would see me next time. Finals didn’t kill me. I made the Dean’s list that semester.

Finals didn’t kill me. I made the Dean’s list that semester.

Finals didn’t kill me. I made the Dean’s list that semester.

Finals didn’t kill me. I made the Dean’s list that semester.

This phrase rang through my head abruptly at 4:21 a.m. on a breezy, Wednesday morning in April. I can’t sleep. I can’t hold down my food. My thoughts are scattered. I need to sleep. I have a paper – which I haven’t started yet – and a presentation I have to finish by tomorrow. I have to maintain the “front stage” I cultivated over the years. It’s the role I feel like I have to play. Good thing I am comparing Goffman’s “presentation of the self” to other theoretical concepts in this paper – that I haven’t started on. Why can’t I sleep? Why can’t I shut everything off? Unfortunately, trauma management and recovery both fail to function in that regard.

They said your death was a freak accident. It was raining. There was ice. You all were in a hurry to go shopping. I would have taken my time. I drive so slow now that everyone passes me. I recently went shopping like we used to. I didn’t buy anything. Only watched the people there. I haven’t done that in years since you dragged me in that fancy Macy’s.

There is no on or off switch for trauma. Just flickering lights. The kind you see at an abandoned warehouse filled with empty crates. I am feeling like an empty crate. I do have the capability to hold heavy cargo, but my trauma memories stop the assembly line of my mind from growing and thriving as full human feelings. For me, it always starts at the end of a semester. The sharp pain in my stomach. The cold, night sweats. The high-pitched screaming. The flashbacks. Seeing your hands reaching out for help in my dreams. For some reason, I was pushing away from you. I can’t count the number of people I pushed away since your death. Your face covered in blood. It’s not every day your best friend passes away, days before you were supposed to visit. It’s not every day you get a phone call with that horrific news, while you are sobbing for hours late at night along a surprisingly calm river outside of a run-down apartment.

I recently went back to that river to reprocess my trauma with the support of a close friend. I stood in the exact same spot for 20 minutes on the dot. I couldn’t cry at first. Frustrated, I went back into the car where my friend was staring at me. Just watching me. Like they had the nerve to stare at me after all that effort I put into processing trauma. All of sudden, the floodgates opened in my eyes and I found myself sobbing in their lap while drowning in their t-shirt with my salty tears. That trigger unexpectedly became the beginning point of my trauma recovery.

We always took the back roads because you knew all the shortcuts. I heard later that your driver was going 80 mph. There are tons of potholes I recall. I almost killed myself and someone else while driving on those back roads. You told me not to scare you again. I apologized. Every day, I wish I would have driven that night.  

Trauma recovery is brutally and painfully messy. There is no one-size-fits-all framework in managing trauma or even studying trauma. Literature on trauma is limited, especially trauma research aside from PTSD treatment and veterans. I remember one week where I spent 15 hours in the library trying to educate myself on trauma management and recovery. I quickly became frustrated with the substantial gaps in the literature, so I attempted to find trauma researchers other disciplines. I only found one university with a doctoral program that had two faculty members who were considered to be trauma researchers. Since we all seem to have some variation of big ‘T’ and little ‘t’ traumas, how is this possible? Trauma has been normalized throughout American media and culture from the trauma of gun violence to the trauma of rape and sexual assault. However, the literature is limited. So how can we grow the body of trauma research and scholarship?

Everyone apparently asked you where I was the night before you died. You told them not to worry and that I was coming home soon.

We start by studying vulnerable populations that have been previously ignored in trauma research, alongside researched populations. For example, we could study the experiences of transgender and non-binary folks. Specifically, what about the issues transwomen and transwomen of color face managing trauma? We could also study other populations who consistently face traumatic events, like racial and ethnic minority populations, sexual minority populations, people of low socioeconomic status, rape survivors, people with chronic illnesses, and people with disabilities. By expanding our array of knowledge on diverse populations outside of traditional trauma narratives, such as veterans and military personnel with PTSD, we can then start to understand how trauma operates on a broader level.

The definition of trauma also must be unrestrained and inclusive, since individuals have a wide range of responses to traumatic experiences. Less noticeable responses do not equate to a given circumstance being less traumatic. We all develop and process trauma in very distinctive ways. Researchers must capture the full fluidity of trauma by understanding trauma survivors through their experiences and daily management.

Strangers kept hugging me at your funeral and told me how great you were. I already knew this.

I am not a trauma expert by any means. But I am a trauma survivor. Much like others before me. I have heard numerous stories of students, faculty, and other academics over the years discuss how their trauma has influenced their research and careers. To my understanding, this desire to fully understand one’s self through emotionally-based research can be both healing and therapeutic throughout the trauma recovery process.

I started writing and opening myself up again. I am now forming intimate and meaningful relationships with those who are supportive in my healing. I began to see my passion for this limited area of literature blossom and flourish. Walls keep crashing down around me as I recover. Somehow, I managed to finish that paper on time, while rocking my presentation. Researching trauma is weirdly comforting for me. I actually decided that night when I broke down, if life hands me lemons, then I will write a journal article. I know I won’t get any sleep tonight. I know today will be hard. But I now know I’m not alone anymore through research and sharing experiences with others.

Opening Up About CF Kidney Disease

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In this post, Xan Nowakowski shares and reflects on a new article they’ve published concerning their experiences navigating cystic fibrosis (CF) and complications related to kidney disease and healthcare delivery. 

People with the same chronic disease often have very different experiences. When you live with a condition that affects your whole body, you can be different from other people with your condition in a huge variety of ways. A disease that impacts a particular organ or system badly in one person may leave it relatively untouched in another. As a result, it can be hard for people without that condition—and sometimes even people who live with it themselves—to understand the full scope of experiences that are possible for patients.

Yet this understanding is critical to developing and improving health care resources, both in clinical settings and in the general community, for people with chronic conditions. My own experiences as a medical educator and health care advocate have shown me this important truth almost constantly over the years. Likewise, my own journey with cystic fibrosis (CF) has demonstrated where a lot of the gaps in health care lie—and how they could be improved by amplifying the voices of patients with diverse experiences.

CF can be a tricky disease to describe because it affects almost every part of the body in some way. The basic gist of this condition is that instead of making a thin liquid that lubricates your tissue, your body instead makes something more like rubber cement. This happens because you either can’t make, can’t transport, or can’t use a specific protein that helps electrolytes move into and out of your cells. Because so many different tissues in the body require mucus to stay healthy, CF can do a lot of damage to different organs over time.

Treatment for CF has improved a lot in recent decades. As a result, many people with the disease are now living long lives. However, as of right now there is no cure and no reasonable promise of one, meaning the disease still does a lot of damage as people grow older. Health care providers are thus seeing many more CF patients surviving to develop complications like kidney disease, which used to occur in only a small fraction of people with the condition because respiratory failure ended their lives first.

As someone who has lived with CF related kidney disease since my earliest adult years, I have learned a lot about what clinicians do and don’t know concerning my health care needs. I’ve also met other people with CF who didn’t know the disease could impact the kidneys! Like any other adult with CF, I have a unique cluster of complications that don’t match up exactly with those of most other patients. Unlike some adults with the disease, I don’t have clinical diabetes or liver problems. On the other hand, I have kidney disease and heart issues.

Working with clinicians and advocates who really understand the diversity of the CF population has opened my eyes to important opportunities for improving care for people with complex health conditions. When I got connected with a specialized CF team after moving to Orlando, I quickly learned a lot about how to keep my kidneys healthy and improve some of the symptoms I was experiencing. Over time, I began to feel much better physically and more empowered cognitively about managing my kidney issues. Because of this, I also changed my thinking about whether or not I would be willing to consider a kidney transplant in the future.

I wrote about the lessons I learned from this journey in a manuscript called “Original Parts: Aging and Reckoning with Cystic Fibrosis Related Kidney Disease”. Last week, this paper was published in Patient Experience Journal. It’s a good example of how “writing where it hurts” can enrich academic literature as surely as it can expand general knowledge about improving care for people with health challenges. Likewise, open access journals like PXJ play an important role in making new information about patient experiences available far beyond university campuses!

I feel excited about amplifying the voices of other people aging with CF using some of these new tools for writing, sharing, and learning. If you’d like to read the manuscript, it’s available here free of charge. As usual, let us know if you have any problems accessing the text—we will happily send you a PDF copy instead.

Revisiting Trauma as a Graduate Student

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In this post, a graduate student in a social sciences program reflects on some ways graduate experience may involve revisiting and managing past trauma.  

Yesterday, I woke up to someone wailing at the top of their lungs. It was the type of noise you would hear when people grieve uncontrollably. When I quickly scrambled out of my bed to look out of the window, I discovered nothing unusual other than maintenance fixing the community gate. No one else was outside of my apartment. As I unlocked my bedroom door to peek around the corner of the hallway, I overheard the television playing in the living room. I then realized that my roommate was watching a movie and the person screaming was Angelina Jolie. Nevertheless, this horrific wail triggered me unexpectedly and brought me back to a dark place that I had avoided for most of my adult life.

I immediately retreated to my room and threw myself onto the bed out of desperation. Memories of previous traumatic events began to flood back in my mind. My body began to tremble, while I was sweating bullets. My eyes glazed over and my breathing was tremendously heavy. My limbs became temporarily immobile. I ultimately went into a state of panic and anxiousness, while spiraling out of control with my thoughts. All those years of therapy felt completely worthless during that moment and nothing else seemed to matter. Trauma memories were stored in mind and my body quickly remembered and reacted consequently.

What seemed like hours lying motionless in bed was only about ten minutes. My body slowly began to recover as I realized that I was in a safe environment. I crawled to my yellow bathroom and eventually managed to take a shower, which always seemed to be therapeutic to me oddly enough. As my face became flushed by the scalding, hot water, I was reassured that I was very much alive.

During my panic attack, I initially thought that my body had ‘betrayed’ me by releasing trauma that I had buried for years. But after reading literature on trauma management and previously discussing trauma with mentors, I knew that the human body contributes physiological responses in triggering events to protect itself from potentially hazardous situations. My body was releasing the indescribable grief I held for so long. This unpleasant incident, surprisingly, gave me clearer insight regarding my recent traumas within the academy as a graduate student.

Since starting graduate school, I had unexpectedly relived my ‘big T’ traumas and experienced multiple ‘little t’ traumas. From discussing my horrific experiences with students related to gender, sexuality, and religion to discussing rape culture during lecture, I had to confront these fears for the sake of my health and activism. I murmur the words ‘me too’ underneath my breath as students disclose their trauma memories of sexual assault. I cry tears of joy whenever I successfully provide support and resources to students exploring their sexualities and gender, while reflecting on my personal discoveries. These moments have assisted me in my own trauma management by making me more comfortable discussing these sensitive topics in the classroom and activism.

Practicing self-care outside of graduate school has significantly helped me cope with my trauma. I now go on long walks during the evenings and watch the sunset. I call friends and mentors for advice. I recently rekindled my old love of vinyl records and dusted off my record player to play Pat Benatar’s Crimes of Passion. I distance myself from the academic world sometimes to keep my individuality, relationships, and passions intact. I force myself every day to not give into ‘graduate school guilt’ and to enjoy all the moments that bring meaning to my human experience. As a social scientist in training and as an activist, I must continue to practice self-care and know my limitations, so I can best help those I am assisting without being a ‘wounded warrior’ during the process.

Despite my successful attempts to recharge, I still see and revisit trauma every day in graduate school. This could be partly due to my unique experiences and understandings of the social world while performing multiple roles as a researcher, teaching assistant, graduate student, and activist. Nevertheless, in the social sciences, we do have the unique opportunity to change these all too familiar struggles within the academy, by maintaining interactive dialogues regarding trauma management and actively supporting members of marginalized groups.

Why is it that the academy often fails to tackle or even acknowledge the experiences of trauma among students and faculty, especially those who are women, LGBTQ people, and people of color? Surely academics recognize the crucial need of providing a safe, empathetic space to share their experiences of trauma, harassment, and microaggressions within the academy without the fear of negative consequence? Trauma should not be stigmatized in the academy nor should academics attempt to silence those who express their trauma memories. Leaders must drastically change how we train, support, and treat survivors of trauma. I hope this essay can be insightful and reflective to members of the academy, especially to those who are graduate students learning how to navigate revisiting experiences of trauma.

Building the Literature on Aging Partners Managing Chronic Illness Together

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In this post, Xan and J announce an upcoming and rolling special issue of Gerontology and Geriatric Medicine focused on managing illness in relationships over the life course, and invite scholars interested in health, aging, relationships of all times, caregiving, and chronic conditions to consider submitting works for this issue and emerging area of research in social, physical, and medical sciences. 

Hello readers!

Xan and J here with a teaser for our newest project. In our home communities of Orlando and Tampa, we’ve been spending some time recovering from Hurricane Irma and helping our fellow Floridians do the same, as well as supporting friends in Texas and Puerto Rico in their own recovery efforts. As things calm down more here in central Florida, we’re pleased to roll out our latest effort to amplify voices from lived experience in research.

Earlier this year, we pitched a special collection proposal to Gerontology and Geriatric Medicine. We suggested a content collection focusing on “Aging Partners Managing Chronic Illness Together”. The collection would highlight opportunities for inquiry, evidence-based perspectives, case studies, and new primary research on collaborative illness management among older intimate partners.

Right now there is very little literature on this topic—most published research on caregiving in intimate relationships uses a “sick partner/well partner” model. But our own lived experiences as well as what we have both seen in our work suggested that many people are living a very different reality! We also found no literature whatsoever in conducting our own preliminary review on collaborative illness management that delves deeply into the experiences of marginalized older adults and relationships between people occupying varied genders, sexualities, and relationship types. We very much want to change that!

Our introductory editorial for the content collection at GGM will be up soon (we’ll share on the blog and social media sites when it is), meaning we are ready to accept original submissions from other scholars doing work on this important topic. Unlike traditional “special issues”, this content collection will remain open indefinitely for new submissions. We intend to use the Aging Partners Managing Chronic Illness Together collection as a springboard for both highlighting inspiring innovative research on older adult health that champions people’s unique lives, biographies, and needs.

If your research includes a focus on chronic disease management, older adults, and intimate relationships, we hope that we’ll be able to showcase some of your work in our special collection in the future!

Invalid measures invalidate us: ciscentrism and ableism in the trans autism literature

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The author of this post is a transgender person conducting autism research at a major Midwestern university. Here they reflect on ways cisgender bias may impact neuroscience findings and theories and how transgender and autistic voices and insights could help alleviate these problems.

 

Two relatively recent* publications (see, here and here) address rates of autism among transgender people, finding that autistic people are over-represented in transgender samples relative to cisgender samples. Both of these studies are informed by the “extreme male brain” theory of autism, which posits that personality traits/cognitive styles are reliably sexually dimorphic, and that autism is associated with extremely “male typical” traits. The extreme male brain theory relies on the assumption that personality traits are gendered AND consistently associated with the brain, and that increased prenatal androgen exposure is a likely cause of these brain differences. There has been a great deal of excellent scholarship (see, for example, here, here, and here) in feminist science and technology studies that critiques and questions these assumptions that I will not rehash.

These trans/autism studies have similar experimental designs: researchers collected data from a sample of transgender individuals receiving care at a gender clinic. These participants completed an assessment form called the Autism Spectrum Quotient (AQ). This form is designed to assess for traits associated with autism, and is divided into social, attention switching, attention to detail, communication, and imagination subscales. Both of these studies used the same dataset of cisgender people as their comparison sample. This cisgender dataset is previously published and includes AQ norms for a large sample of (presumed) cisgender people.

There may be more trans autistic people than would be expected from the prevalence of each of those identities in the broader population. I want to be clear that this is not a “problem” for which we need to determine the “cause.” I do, however, want to problematize the way that assessment tools, designed and normed for cis populations, can lead to invalid claims about transgender people. Importantly, many autistic people, trans and cis, have already critiqued the ways in which representations of autistic people in the research literature and elsewhere do not consider autistic perspectives (see, for example, here and here). Others have emphasized the way that autistic ways of communicating are pathologized in a literature dominated by neurotypical perspectives (see here for example). Measuring social skills by assessing comfort and enjoyment with interacting with neurotypical people misses the point. My critiques of ciscentrism in this literature are greatly indebted to the work of cis and trans autistic activists, writers, and scholars.

“Many of the individuals in the current study have reported that they did not fit in with others; indeed, both MtF and FtM cohorts showed more dysfunctional scores in the social skills subscale…supporting a reported sense of impairment.” (Pasterski et al., 2014, p 391).

I am not socially impaired when I have difficulty fitting in cisgender culture or with cisgender people. The AQ has captured trans people’s experiences with marginalization and transphobia. Many of us prefer routines and predictability, one of the traits measured by this scale. Routines become important for many of us as strategies to avoid transphobic violence: this is the restroom I can use safely at school, if I take the 5:30 bus home from work I am less likely to be harassed, I wear my hair this way every day so I am less likely to be misgendered, etc. We “prefer to do things the same way over and over again” because it keeps us safe.

Likewise, questions on the AQ about enjoying childhood play remind us of the way our imaginary play was policed and gendered. Many of us did not enjoy playing imaginary games with our childhood peers, because there was no room for us to imagine our trans selves in a story, or because our favorite toys were taken from us. The AQ also assesses attention to detail with items such as: “I often notice small sounds when others do not” and “I tend to notice details that others do not”. Attention to detail also keeps us safe. Particularly given the high rates of PTSD in trans populations, high could be due to sensory hyper arousal, which can also be present in some autistic people, but is a general construct not necessarily related to autism per se. Items like “I find social situations easy”, “I find it hard to make new friends”, “I enjoy meeting new people”, etc. are all attributable to the difficulty we can experience navigating a cis-dominated world. “Social chitchat” is not enjoyable for me because it so often devolves into invasive personal questions about my transition status or my relationship with my parents.

Personally, I have a complex relationship with “thinking of myself as a good diplomat” because, as the only transgender PhD at my institution, colleagues constantly demand that I represent trans people. On days when I gently correct a colleague for casually insisting that “pronouns aren’t important,” I think of myself as an excellent diplomat. By the third time I’ve been asked to give an uncompensated Trans 101 in a month, not so much. Likewise, I am certain that many of my colleagues and friends are tired of hearing me talk about the poor scientific quality of the transgender medical and biology literatures. “People often tell us that we go on and on about the same thing” because we are compelled to speak ourselves into being in a culture that would prefer we not exist.

I would venture that at least twenty of the fifty questions on the AQ are not valid for transgender people. Because of ciscentric bias, these researchers forgot the most famous maxim in science: “correlation is not causation.” The authors attribute differences they observed in transgender people to be causal rather than correlational; they did not consider the (obvious to any trans person) idea that being transgender mediates social experiences. Attribution of elevated scores on the AQ to an “extreme male brain” among trans people makes several logical leaps.

These leaps aren’t “caught” by cisgender researchers because of their unexamined ciscentrism, although Pasterski and colleagues do acknowledge that the extreme male brain theory doesn’t fit their findings in trans women. Regardless, inclusion of transgender autistic people in the research process (from hypothesis generation to data interpretation) would improve the scientific quality of this work and increase its relevance to trans and autistic people. Chillingly, Jones and colleagues end their paper with the following recommendation: “Clinically, even if only for a minority of individuals considering sex reassignment surgery (sic), the formulation of undiagnosed autism might be a helpful alternative to explore” (p 305).

*It’s 2017 and trans research in psychology and neuroscience still regularly uses the Blanchard typology. 

But It’s Heavy: Friendships, Expectations, and Illness

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In this post, Xan reflects on the weight of chronic illness, and role of emotions, expectations, and caregiving in the experience of chronic illness and emotion management.  

In my last post I wrote about the fallacy of people thinking I cannot carry things because like many people with cystic fibrosis (CF), I am very thin. “But it’s heavy!” strangers will say. “You can’t possibly carry it all by yourself.” If only they knew. I manage just fine with heavy material objects, provided they aren’t especially large or unwieldy. No, the heaviest burdens I carry are those unseen to others.

Knowing the data, knowing people with your condition have an average life expectancy in the high 30s range, constantly explaining “well it’s really a bimodal distribution differentiated by access to care and a bunch of contextual factors” to wide-eyed people whose eyes well up with tears because it’s too hard for *them* to handle to know you are sick. Now *that’s* heavy. I spend so much time explaining things that people could Google, so much time bending over my phone responding to messages asking if I’m okay when what people really want is for me to make *them* feel okay. My neck has begun to hurt from the weight of my head literally dragging me down.

So now I’m holding my phone at 90 degrees to my face, stretching my neck and thoracic muscles, asking myself tough questions about why I’ve always swallowed whole the assumption that it’s my responsibility to do the emotional labor of coddling people in my life under the guise of helping them get educated. It’s never the people closest to me who ask for this. They know better, or they wouldn’t have gotten so close to me in the first place. Asking how I am is kind and affirming. Using that question to spend the next 30 minutes gobbling up all the emotional support you can from me about how hard my diagnosis is for you and how much it scares you…is not. It literally weighs me down.

Being open about your fears is a tremendously good thing in and of itself. It’s where you seek support in coping with those fears that matters. This isn’t black and white; it’s a question of nuances. Ring Theory offers a good way to understand socially affirming flows of emotional support, using a simple algorithm of “comfort in, dump out”. The basic idea here works like an earthquake. The person dealing directly with the challenges at hand (terminal illness, loss of a loved one, sexual assault, etc.) dwells at the epicenter. Then shock waves radiate around the epicenter with progressively lower intensity as distance increases. A life partner feels them most intensely, followed closely by other family members who are close to the person. Then come very close friends, then other friends and colleagues in a much bigger ring, and then casual acquaintances.

I’m a pretty textbook long-surviving CF patient in many ways, including both all the issues I do experience and what has heretofore been more minimal involvement of the pancreas. Whether I have any pancreatic involvement remains unknown, because I definitely have some bizarre endocrine symptoms these days. I just keep coming back to the fact that I had low-positive results on a sweat test *and* so many of the core clinical signs of the disease and nobody gave a damn. Why was my case dismissed when my parents kept fighting so hard to get me medical care? Why did I have to be treated in fragmented little pieces by specialists focused on this or that organ? Why did I have to undergo surgery to rebuild mucous membranes that could have been reasonably well protected by drugs that were already on the market? These questions pull me down like heavy stones.

I see a CF specialist tomorrow for the first time in my entire 33 years of life and these questions spin through my mind constantly. And I feel the lingering fear that this doctor won’t believe me either, that I’ll now be caught in a terrible limbo of knowing I need a specific type of care yet being just as unable to get it as when I had more questions than answers. Maybe I still have more questions than answers. I spend most of my time trying to answer other people’s questions, though. And it has exhausted me so thoroughly that I feel empty inside, as if my disease consists more of the need to justify it and reassure others than of its terrible physical mechanics, which I wind up with little cognitive space to consider. I go to bed each night feeling as if the day has drained all the life from me, questions racing through my mind in the darkness that surrounds.

I don’t have any real answers. I wish desperately that I did, but I don’t, and I often feel as if I’ve failed the people in my life because of that. All I have is a lot of lost time and an opportunity to do things differently with a doctor who stands a chance of understanding my case and my needs. So…to be continued. I’m excited about meeting with the specialist. I try to Be Positive in all things. But there’s so much beneath the surface, and it feels exceptionally heavy today. So I strive to grow more proficient and comfortable in asking others to shoulder a piece of that burden, not my grocery bags or guitar equipment. For it’s the invisible weights that bring us down the hardest.

On the Dubiously Accessible Caste System of Conspicuous Fitness

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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.

Sidelined: Contraception Side Effects and Gender Inequity

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In this post, Xan Nowakowski explores recent discussions arising from clinical trials for men’s contraception in relation to broader patterns of gender inequity in health and contraception and some of their own experiences navigating gender, contraception, health, and side effects.  

I’ve been seeing a lot of posts on social media lately making fun of men for dropping out of clinical trials of hormonal contraceptives due to terrible side effects. This isn’t remotely okay, and it needs to stop. Suggesting that men should martyr themselves on the same crosses other people have been involuntarily nailed to for centuries isn’t a solution, and frankly it’s terribly cruel. The issue here isn’t that men are speaking up about feeling terrible and prioritizing their health in choosing to drop out of the clinical trials for these drugs. The issue is that women reported the same exact side effects in trials of the same drugs that are currently on the market for people with ovaries and uteri. Rather than those trials being shut down as the one for contraceptive pills for people with penises and testicles was, the trials continued and the women’s concerns were dismissed as weakness or figments of imagination.

Reproductive autonomy is a fundamental human right, and people shouldn’t have to feel physically and/or mentally compromised to invoke that right in their daily lives. No one contraception option is right for every single person’s health needs, even within a given sex or gender group. We should have hormonal contraception options for everyone that work without making us feel like epic shit. And nobody–and I mean *nobody*–should ever be discredited for saying a medication is diminishing their quality of life.

The timing of the news about the clinical trial for male contraception couldn’t be more ironic or apt. Those of you who know me well know that I’ve taken regular-dose triphasic oral contraception since I was 17 years old, even though I was ready to get sterilized in my early 20s. Although my doctors would have approved sterilization surgery given my lifelong knowledge that I was childfree, I would still have needed estrogen therapy to combat some of the health problems caused by my autoimmune disease, most notably the threat to my bones.

I took the same two or three brands of generic triphasic pills for nearly two decades. Then when I moved to Orlando, the Publix around the corner from my house didn’t carry any of those and offered me a different generic. Within a few days, things began to go downhill.

My mental health spiraled quickly. I became extremely depressed, which is so completely unusual for me that at first I didn’t realize what was happening. I blamed myself for “fooling myself” about how much progress I’d made with my PTSD or thinking that I could actually make a go of things in my new role with FSU COM. The future became a sucking black hole in my mind, full of nothing but hopelessness and the prospect of being gradually betrayed more and more by my body. I cried all the time. I experienced terrible paranoia and started hearing voices. I found it difficult to trust anyone, including my spouse and my parents. I thought about suicide constantly.

None of this is remotely usual for me. Even during my worst experiences with the PTSD, I haven’t felt like that. I’ve always had hope. You don’t survive 32 years with a disease like mine if you don’t have hope.

I also experienced bizarre changes in my physical health, like my breasts suddenly swelling an entire cup size and becoming painful to touch even while putting on clothing. I was so exhausted every morning that my whole body felt as if it were made of lead. My kidneys hurt and my intestines felt as if someone had tied them in a knot. The flora in my entire pelvic region got completely out of whack and a terrible smell seemed to follow me everywhere. And for some reason, my symptoms always seemed to be worst in the morning and get a little bit better throughout the day, then worsen again in the night.

In the back of my mind, the possibility that this might be a bad reaction to the pills I was given swam around. I wasn’t thinking straight by the time I became seriously concerned. If I had, I would have stopped the pills immediately and called Publix to switch me back onto my old medication. But my mind went instead to blaming myself, to thinking I’d done something to make my body and mind act like that, that I just wasn’t strong enough, that now I was becoming as grotesque on the outside as I felt on the inside.

I tried to communicate with my spouse about it and kept failing horribly. I worried about being a “quitter”, or worse, a bad epidemiologist–blaming medication I’d taken for half my life for my own failings. But eventually, toward the end of the pack when the swelling in my chest had gotten so bad that I was in pain all day and couldn’t wear some of my bras, I blurted this out to J between spells of inscrutable tears.

J stopped in their tracks. “You’re on the wrong pills. Xan, this isn’t you. You’re on the wrong pills. None of this is your fault.” So I stopped taking the pills, which I usually would have done before going to bed at night. When the next morning came, I felt somewhat better rather than worse. By that night, I started to feel a lot better. My chest deflated like a pricked balloon, returning to its usual size within 48 hours. All of my mental symptoms also disappeared. I felt hope and joy coming back into my consciousness. I felt alive again.

My relief was offset by my desire to blame myself. As J pointed out, I couldn’t have been expected to put the pieces together clearly when my mind was betraying me at every turn and making me doubt myself so much. I still feel some of that doubt now, just minus the crushing hopelessness that accompanied it when I was still taking those pills. After all, this wasn’t my first rodeo with medication side effects. I’ve been on dozens of medications, some that I need to survive and others that could have killed me. Shouldn’t I have been “better” at dealing with this kind of stuff by age 32? Not entirely, and certainly not in a world where pharmaceutical companies aren’t expected to be “better” at not marginalizing and ridiculing the adverse experiences of millions of women.

In my mind I don’t see myself as a woman, but this is one of those times where the reality of that being how many others see me has been driven horribly and irrevocably home. I struggle daily now with the feeling that I became every awful stereotype of a “hormonal” woman. The feelings of violation run deep, along with those of disappointment in myself. I got thrown headfirst into a mess of gendered experiences and stigmas, and although I came out alive, I did so feeling horribly dirty and despoiled. Weeks later, the dirt still won’t wash off.

I’m proud of the men who are standing up for their right not to feel like utter garbage physically and mentally in seeking reproductive autonomy and sharing that burden with other gender groups in ways that are long overdue. I just hope that in doing so, they will stand up for all the women who’ve been getting hurt since long before male contraception ever came on the scene. The fact that the FDA has only now, after 50-some years, approved an in-depth study of linkages between depression and hormonal contraceptive use in women, is both telling and damning. The recent closure of male contraceptive pill clinical trials represents an opportunity for all of us to affirm the struggles and amplify the voices of millions of women who have been harmed by paternalistic practices in the testing and prescribing of hormonal contraceptives.

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

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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.

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

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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.