Tag Archives: Xan Nowakowski

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.

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!

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.

Creating Queer Kinship in “Straight” Spaces

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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.

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.

“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.

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

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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

Happy Birthday Write Where It Hurts

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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

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

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

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

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

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

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

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