Category Archives: Chronic Conditions

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!

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

On the Dubiously Accessible Caste System of Conspicuous Fitness

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

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

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

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

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

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

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

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

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

Sidelined: Contraception Side Effects and Gender Inequity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“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.

Sacrificio

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

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

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

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

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

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

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

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

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

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

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

The Anxiety Inscriptions

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In this post, Lain Mathers reflects on zir experiences managing anxiety and graduate study.  Lain Mathers is a doctoral student in Sociology at the University of Illinois Chicago and the Assistant Editor here at Write Where It Hurts.

It is mid-February as I begin writing this post. I am sitting in my apartment at my computer, my hands floating apprehensively above the keyboard. This is an odd sensation considering the fact that usually I type so intensely that the tiny plastic squares pop off of my laptop and onto the floor. I can feel the words I want to write just out of reach, curled up in the darker corners of my brain. I start to feel my chest tightening. “No, no not right now, please not right now,” I plead with my brain. We have a constant dialogue going, but as of late it’s taken on a significantly more dominant role in those dialogues. I’ve come to know this feeling. It’s like watching a tornado bellowing toward me while being fastened to the ground. As the tornado gets closer and closer, I eventually give in to the fact that I will be swept up in the debris of my own internal natural disaster.

At this point, generally, when I can feel a panic attack coming on, I resign to it. Over the past few months, I’ve learned just how neurological and out of my control those events are, and that trying to resist them (and largely failing to do so) leaves me feeling significantly more exhausted, disappointed, and angry than if I just allow myself to lean into them, tear apart a cardboard box or two, and then sit quietly on my couch and listen to Rilo Kiley, Neko Case, or The Yeah Yeah Yeahs in the calm after the storm.

See, I’ve known that I exhibit symptoms of Generalized Anxiety Disorder (or Generalized Anxiety Condition, as I prefer to call it, since I am working against the internalized and institutionalized stigma that the ways my brain operates means there is something inherently broken about me) for a while. I’ve had nervous ticks like compulsively picking at my skin since as early as I can remember. I can be thrown into a state of total disarray over a two-lined text message that I’m afraid someone other than the intended recipient will get a hold of. I’ve found large crowds overwhelming for a long time, and regularly get up two to three times throughout the night to make sure I’ve locked my doors (so that no one can get into my apartment) and unplugged all the kitchen appliances / blown out all the candles (so that a fire doesn’t start when I’m asleep). On my walks to school, I try to replay my morning routine to make sure I locked the doors and unplugged the appliances, and if I can’t remember I will often text message my roommate (if he is home) to make sure I did. If he is not home, it is not uncommon for me to turn around and walk back home to check (even if I am only a few blocks away from school). I have to get to the airport or train station at least three hours before my trips out of town because I am constantly terrified that some catastrophic event will happen that prevents me from getting where I’m supposed to be, and I am known to check the pockets in my jacket up to 15 times before leaving my house, sometimes one right after the other, to make sure I haven’t accidentally lost my wallet, keys, or cigarettes.

All of these are symptoms I’ve learned to manage over the years. For example, I just plan my travel accordingly; I allow an extra 30-45 minutes before I go to bed to check the locks and plugs. I say out loud to myself that I locked my door as I leave my house in the morning so when I run over my morning routine repeatedly on my way to school, my own verbal affirmation to myself will be part of that narrative. And, historically, when I would get the occasional panic attack (every couple of weeks or months), I would allow myself to just experience them and make sure to try to get as much sleep as possible and drink lots of water.

Writing has also been a huge part of my anxiety management. For the past 14 years, I have been writing regularly in a journal. Presently, I am in my 94th book, and have no plans of stopping any time soon. Since I was old enough to hold a pen writing has been the place where I can document the conversations I am constantly having with my brain about all of the things I need to be worrying about or else something terrible will happen. Putting them down on paper both makes them feel real and also like something I don’t have to carry around in my head anymore (it can get quite crowded in there). Writing is the place I go during panic attacks when nothing makes sense and I can’t even really form complete sentences, yet something about the feeling of pen on paper keeps me anchored to this world. Writing is, without a doubt, my most significant and important survival strategy when it comes to my mental health.

So what do I do when I can’t write through the anxiety? For those of us that find a deep comfort in writing, the inability to do it is incredibly destabilizing and painful. Recently, I had to confront this question in a wholly unsettling manner.

For people who live with chronic mental health conditions and/or trauma, we know that triggers can pop up and derail our routines for hours, days, weeks, even months. We also know that triggers can come in the most unexpected contexts and magnitudes. So, just because one is perhaps prepared to handle a situation that has previously triggered them doesn’t mean they’ll be able to negotiate a totally new trigger with as much familiarity.

So, when my understanding of my life was recently upset by conditions entirely outside of my control, and unlike any trigger I’ve previously experienced, I began having panic attacks on a daily basis. Not only did they start occurring more frequently, but also at unexpected times compared to when they’ve previously boiled to the surface. By this point, though, I had convinced myself that writing was all I needed to settle the rush of chemicals in my brain. “Just write it out, Lain, you’ve done this hundreds of times before.” Yet when I sat down to put the chaotic words on paper nothing flowed. I was in a state of mental and emotional quicksand, sinking faster than I could get my words to secure me to this world.

This was even more unsettling because writing is not something I just do for personal pleasure or comfort anymore, it is part of my livelihood. I began to tell myself elaborate stories about how I will never be able to write again and my career as a sociologist is doomed to failure. I walked nervously around my apartment, screamed into pillows, ripped apart cardboard boxes, and smoked countless cigarettes to try and dilute the quicksand feeling but nothing worked. It was in this moment that my brain and I began to have a serious conversation and one unlike any talk we’ve had before.

“Maybe you should talk to someone, Lain. Maybe you really need that.”

“No, brain, I can manage this. You’re just really fucking with me right now. It’ll pass.”

“Will it?”

“It has to.”

“How do you know? Maybe you’re just like this forever. Maybe I’ll never stop.”

“Maybe I should talk to someone.”

“Should you, though? How do you know it will help anything?”

“I don’t.”

Before making an appointment with a therapist, I held my journal and a pen in my hand, so desperately hopeful that I would have some kind of breakthrough by just acknowledging that my mental condition is real, that this experience is out of my control (despite how much control I like to believe I have over it). Nothing. So, I made the appointment and had a flurry of panic shortly after doing so.

Over the past few months, I’ve started more openly acknowledging that I not only live with generalized anxiety everyday, but also that it profoundly influences my life in ways I never expected it would. I am continually learning that maintaining anxiety management strategies, such as writing, is one important component in a large equation of other management mechanisms, such as (for me) therapy, medication, painting, supportive friends and loved ones, and plenty of alone time. I am still learning to overcome the stigma associated with chronic mental health conditions (especially one like anxiety, that many people don’t believe to be real), and the path to figuring all of this out certainly defies the American ideal of a linear progress narrative.

Yet, here I am, in late March, sitting at a café finishing this essay that you are presently reading to the sound of Rilo Kiley’s song, “A Better Son or Daughter” and occasionally picking up the “I” and the “O” keys off the floor. The routine of bending over every seven or so minutes to fetch the tiny, plastic, lettered squares off the ground is a welcome reminder that I am still here, anxiety and all.

“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.