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

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.

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On the Dubiously Accessible Caste System of Conspicuous Fitness

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

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

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

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

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

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

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

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

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

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Creating Queer Kinship in “Straight” Spaces

In this post, Xan Nowakowski explores the importance of Queering Heterosexuality and “straight” as a heteroqueer (i.e., someone who identifies as primarily heterosexual and also Queer in other respects related to sexualities (i.e., kink, poly, mixed orientation relationships, etc.) and / or gender (i.e., trans, non-binary, genderqueer, agender, etc.) person existing between static notions of cisgender-monosexual-heterosexuality on the one hand and Queerness on the other.  Specifically, as an agender person primarily attracted to different sexes, they discuss using access to “straight” spaces to Queer such spaces and advocate for Queer Kinship and Justice in daily life.  

When I was in high school, my best friends and I were members of one of many “gay-straight alliance” groups formed throughout the US in the 1990s.  I always found the group’s name sort of odd, because it reduced sexuality to a binary and suggested that people of different sexualities supporting each other was a matter of formal “alliance” rather than basic human decency.  These days, I certainly feel glad to live in a society that is increasingly using inclusive language to craft and narrate queer spaces.  But I also realize the wisdom—if inadvertent at the time—in a name that illustrates the possibility of complex interplay between queer and straight identities.

Referring to myself as “straight” was also something I avoided before I could really give voice to why it made me so uncomfortable.  I was one of those kids who discovered at a pretty early age that they were interested in people with genitals different from their own.  But even though I never felt attracted to people with similar anatomy to my own, I never ruled out the possibility of that happening in the future either, nor did I feel any anxiety about that possibility.  I was fortunate to grow up in a home where my parents made clear that I would be loved equitably whether I were interested in males, females, intersex people, or all or none of the above.  Over time, the painful realization set in that many of my peers did not have that freedom.

I feel some of this pain now as I reflect on high school—a time I very much enjoyed that made me feel free to be myself both in the classroom and outside of it.  I did not realize at the time just how privileged I was.  I also had the wonderful privilege of a close friendship with an out gay male, and although I cringed at how he had been non-consensually outed by someone who was angry at him the previous year, I celebrated his self-assurance in enjoying an openly out life, as well as the degree to which the school community seemed to embrace him as a gay man.  It was only later, as my partners in more mature relationships gained a higher level of knowledge of their own sexuality and its social consequences, that I began to wonder if many of my peers had just ignored my friend, accepting him while at the same time erasing the core of who he was.

For reasons I have never really tried to unpack, I have generally felt most comfortable and happy in relationships with males who experience at least some degree of attraction to other male-looking people, even though I myself have never experienced attraction to a female-looking person.  And in terms of gender presentation, my partners have run the gamut from very rugged-looking to very delicate-looking, but all have embraced at least some degree of fluidity in relation to established gender norms.  Yet many did not understand what it meant to me to be agender, something I have known about myself with stunning clarity since long before I knew the technical term for it.  This growing sense of alienation made me reflect anew on my experiences in high school, and how differently I probably experienced the social environment surrounding my friend’s openness about his sexuality than he did.

I came to the uncomfortable and inexorable conclusion that although my high school was queer-friendly in many ways, it was fundamentally a straight space.  I would see this time and again in stories other friends told me about their own coming out—friends who had been so deeply closeted that not so much as a single rumor circulated about their sexuality when we were all in high school together.  These stories drove home just how much we were *not* “all in it together”, because togetherness and feelings of such were a privileged space for students whose sexuality did not deviate from those deeply entrenched norms.  Nobody questioned me for saying I did not feel threatened by the idea of one day being attracted to another female, because I was frequently seen in the company of males and it was well known that I had a history with several male students.  I rejected the term “straight” pretty vocally, but was that really enough?  Despite my openness about my gender identity, I also never considered the idea that I might myself be queer—that queer was more than just a double-edged term for “gay”.

In fact, the idea that I might be queer—and indeed, the very meaning of that term—did not register until I met my partner, the person I married just a few months ago.  In zer wedding vows, ze spoke softly about how I always *saw* who ze really was, in a world that often ignores zer entirely.  I could see my partner quite clearly—a bisexual, genderfluid person to whom I felt a pull like no other.  I celebrated zer sexuality and gender identity and thought about how nice it was to be with someone who really *got* it about my experience as an agender person, even though ze was not agender zerself.  But at the same time, I worried about not being “queer enough” to provide the kind of safe spaces that would truly nurture my partner.  This was a source of constant anxiety for me and frustration for my partner until one day, ze looked me in the eye and said, “Xan, this is what I’ve been trying to tell you all along.  You’re queer too.  You just don’t see it because you’ve always been embraced in straight spaces as well as queer ones.”

That got my attention.  I was still living with DID at the time, and looking back I wonder if this discussion might have been one of the events that led to my reintegration a few months later.  I learned that I was something called “heteroqueer”—a person who is attracted only to members of other sex groups, but feels comfortable with the possibility they might one day feel attracted to members of their own sex group.  Many heteroqueer people also queer gender and sexuality norms in other ways.  For example, I have experienced attraction to transmasculine people after they have achieved their physical transition goals.  I also queer gender every moment of every day by reminding people that there is no empirical relationship between what my body looks like, how I dress, how I behave, and whom I choose to invite into the most intimate spaces of my world.

Yet this was the first time I had ever come close to an integrated concept of what it meant to be both a “heterosexual” person and an agender person, or to prioritize spending my time in and enriching spaces for openly queer people, or to feel more fulfilled in relationships with bisexual partners, or any of those other things my high school activism had not remotely prepared me to address.  I just knew that I was “doing me”, whatever that meant, and that I felt a constant sense of anger and frustration that was starting to boil over.  Every time someone would use “straight” language or norms to describe my relationship with my partner, I would cringe and then start to go on the offensive.  And when people asked me stupid questions about my relationship with J, I fought to hold on to my composure.

My favorite of these ridiculous questions was “So J is bi…does that mean you’re bi now too?”  Yes, and being with a person who has a penis means that I have also magically grown a penis.  No, I am not bi.  As far as I know—and I have a fair amount of data to back up my suspicions at this point—I will never be bi.  And that is incredibly important, because the very fact that I exist—and that in so doing I make people acknowledge the heretofore unexamined reality that people like my partner exist—is still, even in today’s world, an affront to heteronormative thinking about relationships.  I have learned, with progressively greater degrees of discomfort and anger, that “straight” people are not supposed to want to date bisexual people, let alone marry them.  We are supposed to feel threatened and overwhelmed by their rampant, teeming, uncontrollable sexuality.  We are supposed to expect them to fuck anything that moves.  We are supposed to expect them never to feel fully satisfied by us.

Of course, those of us who *do* have bisexual partners know none of that has anything to do with bisexuality.  Nymphomania, hypersexuality, infidelity, ennui…these things all exist as well, and are worthy of attention.  But what emerges from daring to love a bisexual person in a straight world is a deep and nuanced knowledge of what “queer kinship” really means—and the responsibility I have in creating it.  I probably did some of these things unconsciously back in high school by affirming my friend and never erasing parts of his experience that broader norms and narratives could not seem to find spaces for—an example being the little-known attractions he had also experienced toward females, but generally those who exhibited aggressive and traditionally masculine behavior.  I saw my friend back then the same way I see my partner now, but I could not give voice to that sight even with him, let alone with anyone else.

Those of us who identify as heteroqueer have a unique opportunity to create queer kinship in places where it is not usually found—and indeed, where such kinship can make a profound impact.  We have a privilege reserved for few in our society, one that simultaneously grants us affirmation in both straight and queer spaces.  We speak both languages, as it were, but often spend so long battling norms that suggest we need to “pick a side” that we become exhausted and tapped out.  It is only since building a life with my partner that I have realized how much more freedom I have now, as an openly heteroqueer person whose partner and other loved ones see me and embrace me exactly as I am.  I feel like a complete person for the first time in my life, and it makes me ache for all those who cannot experience that fulfillment because there are no safe spaces in which to do so outside of intentional ones that only other queer people can access.

For those of us who constantly straddle the boundaries between queer and straight spaces, queer kinship is a precious responsibility that too often goes unmet.  We need to be more than allies who demur with phrases like “I’m not *really* queer”.  We are absolutely queer, and we absolutely need to be here.  But we also need to be *there*.  We need to keep spending time in the straight spaces where we are privileged to be welcome, and we need to keep breaking down the walls that keep our fellow queer people out—or as is more often the case, electrocute them if they attempt to enter.  In having the ear of both queer and straight communities simultaneously, we can challenge destructive norms about sexuality and gender and still escape to fight another day.  The scars we receive in these battles are worth every knotted inch of flesh, every jagged piece of skin.  We drink deeply from the nourishing well of queer kinship every day while also enjoying the continued embrace of our straight peers.  We must now build those wells for others in places where they can be accessed safely, without navigating pit traps or minefields.

Heteroqueer identity is an important cornerstone of queer kinship because it dismantles the idea that queer kinship cannot exist and thrive within straight spaces.  Embracing this identity, and taking the time to educate others about how queerness and straightness can intersect without destroying one another, offers more than just a means of liberating ourselves.  Rather, this work is profoundly essential for the overall goal of queer liberation.  Cultivating and nurturing queer kinship in straight spaces is worth doing at every opportunity, and at any cost.  When we do so together, we build a world in which everyone can truly “do them” instead of parroting this empty mantra to avoid working for real change.  Queer kinship is the path to a world in which closets exist only to hold clothing—a world in which every space is a safe one.

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Sidelined: Contraception Side Effects and Gender Inequity

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.

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

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

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

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

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

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

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

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Voices of Queer Kinship Series: An Introduction and Call for Contributions

How do we arrange our social, romantic, political, and sexual lives? What types of relationships and spaces facilitate the sharing and affirmation of Queer existence and experiences? Where do we find and how do we create our own families or networks of choice as lesbian, gay, bisexual, transgender, intersex, polyamorous, non-binary, same-gender-loving, asexual, pansexual, kink, gender fluid, agender, or otherwise Queer people and groups? What are the multiple forms and appearances of Queer kinship in our world today? How do such arrangements reveal and potentially ease life within cisnormative, mononormative, and heteronormative contexts? How do variations in race, class, gender, sexuality, religion, ability, body size and type, nationality, and other social factors influence such relationships and the forms they take in our lives? What does the term Queer Kinship mean to you, and how might it speak to the broader social world and ongoing pursuits for social justice?

These are some of the questions we hope to consider, discuss, and debate in a new series of essays amplifying “Voices of Queer Kinship.” In this series, we seek narratives exploring and illustrating various forms of Queer love, family, relationships, and the meanings of these experiences for the individual writers and more broadly. To this end, our own little Write Where It Hurts family will be posting essays on our experiences building, cultivating, and experiencing Queer Kinship. While we envision this series playing out over the next few months, there is no deadline for submission as we believe such stories have a place on the blog at all times. As such, we invite all interested parties to submit posts – essays, narratives, poetry, stories, or other forms are all welcome – exploring the meaning and experience of Queer Kinship in their lives.

In our case, the idea for this series emerged as our own founder and editor Xan and previous contributor Simone Kolysh discussed the importance of safe spaces, families of choice, and sources of affirmation in their own lives. In a month where Pride events are taking place across the country even as our communities continue to face violent and political attacks from multiple sources, they talked about the importance of our stories, our voices, and the varied ways Queer people organize intimate, social, and political lives. In a year where many have benefitted greatly from the legalization of same-sex marriage last June while others who do not wish to marry have seen their options for relational and familial recognition begin to disappear, they talked about the importance of illustrating and discussing the diversity and variation within and between Queer relationships, families, and networks. Ultimately, they decided – with the affirmation of the rest of the Write Where It Hurts family – that we should use this platform to amplify such complexities and create room for these voices.

In this spirit, we seek stories and voices of Queer Kinship in all its forms and types for inclusion in the series. Specifically, we welcome posts discussing topics including but not limited to, for example:

Lesbian and gay marital and other relationship experiences prior to and post same sex marriage legalization

            Bisexual and otherwise sexually fluid relationships prior to and post same sex marriage legalization

            Lesbian, Bisexual, and Gay experiences of committed relationships beyond or instead of marital and family based forms prior to and post same sex marriage legalization

            Transgender and Non-binary relationship experiences with people of various sexualities

            Intersex relationship and family experiences with people of various sexualities

            LGBTI experiences with families of origin, chosen families, reproduction, raising children, navigating child-related legal codes and policies, and navigating interactions with other parents

            Polyamrous relationships of varied types and forms in relation to romantic experience, sexual experience, familial experience, or other day to day activities

            BDSM and other Kink based relationships of varied types and forms as well as relational and familial experiences navigating casual or other forms of BDSM or other Kink play

            Heteroqueer people in long term relationships with and openly supportive of LGBTI people, navigating polyamory, or engaged in other non-traditional sexual, gender, and / or romantic experiences

            Mixed orientation relationships prior to and post same-sex legalization

            Asexual relational and familial experiences with others of varied sexual and romantic identities

            Experiences of affirmation and / or marginalization in explicitly LGBT, BDSM, Poly, and other Queer spaces and groups

            Transgender experiences with long term partners in relation to transition, healthcare and bathroom access, and family formation

            Non-binary experiences with long term partners in relation to family, friends, workplaces, dress norms, and other aspects of daily life

            Experiences navigating the assumptions and reactions of others while engaged in Queer Kinship and / or as sexual, gender, romantic, relationship, or otherwise Queer

            Experiences of childfree people navigating assumptions of parenthood and reproduction in Queer and other spaces and groups

Although the list above provides a starting point of some of the topics of interest in this series, we also welcome essays or other types of posts on Queer Kinship itself and relations with broader society as Queer people, couples, trios, unions, families, and groups. We further welcome examples of the ways Queer Kinship – personally experienced or observed – has touched your research, teaching, activism, or creative endeavors. Further, as usual, we will accept both named and anonymous submissions for this series.  The next two weeks will feature regular posts on the site, and then, beginning on July 20th, we will begin posting pieces in the series – starting with submissions we already have from our earlier Facebook announcement – and continue doing so in between posts on other topics for the foreseeable future. As usual, please feel free to reach out to us with any questions you may have or ideas for this or other series on the blog. To contribute, simply gather your thoughts and contact or send submissions to wewritewhereithurts@gmail.com.

Xan, J, & Lain

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Happy Birthday Write Where It Hurts

This week the Write Where It Hurts blog is one year old. With this in mind, we thought it might be useful to look back over the past year, express our appreciation to the many people who have contributed to the growth and development of the blog and its associated social media sites, and glance toward the coming year.

On June 6, 2015, we launched Write Where It Hurts online and on social media sites with the hope of providing resources for and generating conversation about the personal and emotional aspects of teaching, research, service, activism, and other elements of scholarly and creative life and experience. With this goal in mind, we spent the year utilizing our social media presence to disseminate information and resources, and posting 42 blogs covering a wide variety of topics from a wide variety of backgrounds, perspectives, and traditions. Our hope was and remains to, as one regular reader noted at a recent conference, create a space for open dialogue as well as resources for people managing the personal and emotional aspects of academic and activist life.

Whether looking at numbers or conversations, the past year exceeded any expectations we had at the onset of this project. We have received word of cases where posts from the blog have been useful resources for teaching in classrooms, educating potential allies in activist groups, and sharing experiences in interpersonal settings. At the same time, the blog has garnered much more traffic and attention than we expected it to (especially in the first year), and we have had far more people seek us out at conferences and online for further discussion than we thought would happen. At the same, response to our social media sites has been far more active than we initially expected, and has led to interesting and useful collaborations. All of these and other observations throughout the year suggest this type of space is useful for many people, and encourage us to continue developing it for broader use.

We have also benefitted tremendously in the past year from the talent and bravery of our guest authors. We have truly been privileged to work with incredibly talented and insightful guest writers, and in each case, we – as well as the blog – have benefitted immensely from their perspectives, experiences, and analyses. It is with this in mind that we reiterate our ongoing calls for guest contributors, and encourage anyone looking for a space to Write Where It Hurts to reach out to us with your ideas, compositions, and other thoughts as there may well be space for you on the blog and there may well be others who would benefit from your offerings.

As we move forward, we simply wish to thank you all for an incredible first year in the academic blogging world. Thank you to all the readers, sharers, tweeters, guest writers, and others who made this year possible. Thank you as well to all the people in person and / or online who shared with us the ways the blog posts and / or social media sites were useful to you personally and / or professionally. Thank you all for making Write Where It Hurts first birthday feel like a celebration. We will continue to work on the blog and on social media, and we look forward to all the conversations to come.

Xan, J, & Lain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

AUTOIMMUNE DISEASE

LONG QT & HYPOTENSION

MULTIPLE MEDICATIONS

INFO ON WALLET CARD

J (SPOUSE): XXX-XXX-XXXX

 

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

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

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Incorporating Underrepresented Populations in Teaching and Research

In this post, the Write Where It Hurts editorial team reflects on their experience advocating strategies for teaching to and about marginalized populations often left out of mainstream educational materials, research protocols, and data sets (see our recently published Teaching Sociology article on this topic here) in hopes of facilitating dialogue about the incorporation of marginalized and otherwise underrepresented populations in teaching and research.

As people who belong to, write about, teach, study, and engage in advocacy related to varied populations marginalized or otherwise often left out of mainstream education and scholarship (i.e., donor conceived people, adopted people, transgender and non-binary people, people managing chronic physical and / or mental atypical experiences, etc.), we have become intimately aware of the limitations or missing elements within much existing scientific data and educational resources. At the same time, we know all too well the structural and ideological barriers that slow alteration and revision of existing educational rituals, traditions, and structural patterns in concrete settings. As we did in our recently published Teaching Sociology article focused on strategies for inclusive teaching about gender via the use of survey data that often does not explicitly measure the gender diversity of our shared world, we would like to encourage our colleagues to consider strategies for overcoming existing structural and ideological traditions in hopes of continuing dialogue about methods for creating greater diversity and inclusivity within and beyond scholarly and educational materials.

As we note in our recent article, many data sets called “representative” and used to make far-reaching claims often do not contain and / or do not explicitly measure people like us. If, for example, Xan seeks to learn about social patterns related to donor conceived or agender people, such data sets offer no answers despite the use of such data to “represent” national or other whole populations. Likewise, if J seeks to learn about the experiences of transgender, adopted, or sexually fluid people, all ze will learn from data is that such people are not part of the representation of this society. Similarly, if Lain seeks to ascertain attitudes concerning or held by genderqueer and / or bisexual people, most data sets called “representative” will only offer a “representation” wherein such groups do not exist in any identifiable manner. Despite these “missing” populations, researchers, teachers, and advocates will often utilize these sets to make claims about, for example, families, gender, and sexualities that – we would guess unintentionally – ultimately reproduce existing power structures as well as the marginalization of the groups left out of the official representation contained in the data. In fact, we can see similar problems for other marginalized groups including but not limited to homeless people, neuro-atypical people, and multi and inter racial people despite the use of such data to make claims about housing, mental and physical health, and racial dynamics on a regular basis.

Alongside growing recognition of issues with calling limited collections of people and measurements “representative,” we have heard some advocate doing away with these data sets while establishing more inclusive and diverse forms of data collection, measurement, and sampling. Doing so, however, would require massive changes structurally, ideologically, and institutionally, which will likely take much time, debate, and discussion to accomplish. At the same time, we have heard others advocate for maintaining existing practices or rituals while seeking to explain away the limitations or problems with existing data collection, measurement, and coding practices. Doing so, however, would require accepting the ongoing marginalization and erasure of many sections of the population from official representations. In our article, we propose a middle ground between these two extremes wherein we utilize the existing limitations to illustrate important patterns, power dynamics, and structural issues in contemporary society while continuing to push for revisions in existing data collection, measurement and sampling procedures and encouraging scholars, teachers, and others to talk about such data sets in more inclusive ways within publications and classrooms.

With this information in mind, we invite dialogue, commentary and discussion on strategies for inclusive teaching with existing data limitations and issues. 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 educators’ perspectives on these matters. To this end, ask yourself what do we say to unrepresented populations when we call data sources devoid of their presence or measurement representative of our world? What institutional and structural steps might we need to take to make our data sources and educational materials more inclusive of marginalized, underrepresented, and otherwise “missing” populations? Why do we push so hard for generalizations instead of seeking to empirically map the complexities, nuances, and diversity of our shared world, and is this pursuit of “representative” or “generalizable” claims worth the potential negative effects such practices may have on marginalized populations? 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. Thus, we encourage members of our intellectual and activist communities to engage openly in these (admittedly challenging) conversations in order to move us closer to truly understanding the complexities of our social world and challenging the inequalities that exist within it.

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