Autoethnography of a Pancreas: Lessons on Synthetic Humanness and Disrupting Endocrine Disruption

Athena Sofides

Yale University
athena.sofides@yale.edu

Abstract

I explore the politics of hormone access and endocrine exposure in a world characterized by irrevocable toxicity and the many environmentally-derived chronic health issues that can come from it. Drawing on my own experience living with type 1 diabetes, I reflect on what it means to depend upon a synthetic, politicized, exogenous hormone—insulin—from the very pharmaceutical and medical industries responsible for widescale, non-consensual exposures to endocrine disruptors (like the estrogen-mimickers in consumer plastics), while simultaneously barring trans, non-binary, and chronically ill people from accessing necessary and/ or desired hormones (like insulin, estrogen, testosterone). What determines whose body—human or nonhuman—is disruptive? Musing on my life as a full-time pancreas whose existence is made possible by laboratory-made insulin and wearable pumps and glucose monitors, I argue that to access humanity is more than being unadulterated, and aspiring towards a non-toxic or pure future is both impossible given the legacy of forever chemicals and missing the point, which is that humanity is more than the hormones that do or do not innately constitute us.

Keywords

critical disability studies, disability justice, endocrine disruption, toxicity, hormones, diabetes

To disrupt is to render changed—not necessarily made adverse, but transformed. Hormones and the compounds that mimic or alter their activity, known as endocrine disruptors or endocrine disrupting compounds (EDCs), engender a kind of plasticity in the bodies in which they operate and thus bring about new ways of knowing, living, and dying. To interrogate the hormone is to subvert—to glimpse the world as more permeable than it may seem. As an insulin-dependent diabetic, I have witnessed and embodied transformation, materially and affectively, through synthetic hormones. Laboratory-made insulin has granted me access to my life, while also rendering me irrevocably enmeshed in the machinations of the clinic. Hormones have transformed my body, too—in facilitating the metabolism of the glucose I consume into usable energy, insulin therapy catalyzed a hasty corporeal recalibration, my body eagerly growing back the muscle and fat that had been wasting over the past several years as my chronic hyperglycemia became increasingly pronounced.

Though its precise etiology remains contested, type 1 diabetes (T1D) is an autoimmune disease believed to be caused by a combination of genetics and environmental influences, including viral infections and trauma (Katsarou et al. 2017; Sharif et al. 2018). The escalation of my symptoms occurred following a COVID-19 infection and several challenging and traumatic experiences that I believe may have pushed me over the diagnostic precipice. As I became increasingly burdened by a body that did not feel equipped to house me, both on account of gender dysphoria and undiagnosed chronic illness, my health deteriorated. Since my early twenties, I attempted to convince well-meaning doctors that my unexplainable bouts of fatigue, fainting, and brain fog were real. While I struggled to process the food I ate, move, or cut through the cognitive haziness and string a sentence together, I was told that I was not only not sick but healthy—my symptoms were likely attributed to anxiety. When I had flagged high glucose levels on a blood test years prior, my provider advised that I had probably forgotten to fast before my blood test—I did not look like I had diabetes, being thin, and had nothing to worry about. I was unsatisfied but had no choice but to follow the lead of my healthcare providers. Although invisible to those around me, my deteriorating health hung lower and lower over each day like a thick curtain, weighing down my mind and body and alienating me from other people and things. Just shy of my twenty-fifth birthday, I was admitted to the hospital on the verge of diabetic ketoacidosis, where severe hyperglycemia renders the blood acidic and can quickly lead to irreversible vascular damage or death, and was diagnosed with diabetes.

I am now forever reliant upon insulin, a synthetic copy of a life-giving and necessary hormone, and on the medical industrial complex that manufactures it—and whose oversight and refusal to take seriously my years of unwellness nearly cost me my life. I am essentially kept alive by two kinds of wearable biotech that monitor my blood glucose and administer my insulin—devices I have the luxury of accessing due to my student health insurance, and which make my chronic illness management worlds easier, despite their frequent glitches. In the two years that have passed since my diagnosis, I have reflected on how my humanity is made possible by interfacing directly with the synthetic, this essential lifeblood of human metabolism synthesized by pharmaceutical giants, an unnatural substance administered from the outside in.

The word hormone is believed to have first been used in 1905 by physiologist Ernest Henry Starling to describe “the chemical messengers which, speeding from cell to cell along the bloodstream, may coordinate the activities and growth of different parts of the body” (Tata 2005, 490). While hormones and the mechanisms by which they operate have continued to evade tidy definition and remained the object of physiological inquiry since, they are broadly understood as the chemical messengers of the endocrine system, which work to affect change on target cells and thereby regulate essential biological processes, including growth and development, reproduction and sexual differentiation, metabolism, and the maintenance of homeostasis (Hiller-Sturmhöfel and Bartke 1998; Nussey and Whitehead 2001).

Liaising between organism and environment, hormones carry out essential biological functions that allow living things to live, and that make human animals human. Hormones can originate within a body (endogenous) or from the environment(s) surrounding a body (exogenous). Some such exogenous agents are considered endocrine disruptors. Definitionally, EDCs “mimic, block, or interfere with” the normal endocrine function of a body (National Institute of Environmental Health Sciences, n.d.). From “natural,” plant- and fungi-derived phyto- and myco-estrogens, to synthetic compounds synthesized in the lab for pharmaceutical, agricultural, manufacturing, and other uses, EDCs exist in the landscapes around—and, eventually, within—us (Paterni et al. 2017).

To study hormones is to necessarily call into question what exactly constitutes a normal function or body. From food and medicine to personal care products, pesticides to plastic bottles, clothing to furniture, EDCs—likely constituting at least a thousand known human-made chemicals—are woven into nearly every facet of our contemporary quotidian environment (Endocrine Society, n.d.). Exposure to EDCs has been linked with metabolic and behavioral disorders, certain cancers, and adverse cognitive/developmental outcomes in not only the exposed individual but also their “progeny,” for generations to come (Bergman et al. 2012). Inherently disruptive of toxicological dogma that “the dose makes the poison,” EDCs have been shown to enact substantive effects even in small, short-term exposures (Vandenberg, Colborn, et al. 2012).

Despite these concerning risks, synthetic endocrine disruptors remain abundant and unregulated, and suggest no sign of going away anytime soon. The production and manufacture of EDCs has dovetailed with a political economic disruption of markets, industries, and bodies, creating products such as single-use plastic, thermal papers and resins, non-stick and waterproof clothing and home products, and strong herbicides. Many of these products emerged from military industrial research, conveniently giving rise to attractive new markets touting efficiency, cleanliness, individualism, and ease of daily life, from the individual to industrial scales (Preciado 2013; Vogel 2009). Even after an EDC is suspected or demonstrated to be potentially harmful, US industrial regulatory regimes legally allow for their continued distribution, sometimes even threatening the reputation, livelihood, and families of scientists whose work has uncovered potential dangers of exposure to their products to obfuscate suspicion around their safety (Aviv 2014). The slow pace of US chemical regulation is such that a ban on each compound identified as hazardous could take years to implement, only after years of research demonstrating this toxicity in the first place. US agencies lack adequate regulatory jurisdiction, and, in some cases, federal health and safety entities have even supported work attempting to delegitimize decades of rigorous epidemiological science connecting uncontrolled EDC exposure to a variety of adverse health outcomes (Vandenberg, Hunt, et al. 2019).¹

All while exposure to industrially produced EDCs is assumed to be a fact of life to which we must all acquiesce, people who medically require or desire hormones—namely, chronically ill people and transgender, nonbinary, and intersex people seeking hormone-replacement therapy—are denied access to them. From the sky-high costs of insulin in the US to the legislative, pathological labyrinths barring access to gender-affirming estrogen or testosterone therapy (from supply shortages to lack of insurance coverage to provider refusal to practice gender-affirming care for trans patients), pharmaceutical and legal regimes block and—in the case of estrogen and testosterone access among non-cis people attempting to access them—sometimes even attempt to criminalize consensual exposure to exogenous-hormones (Berrian et al. 2024). Despite their synthetic constitutions, hormones such as insulin, testosterone, and estrogen, which bring into human bodies life, health, and the ability to self-determine one’s humanity, have become the discursive fodder and lucrative subject of political economic regimes that seek to determine who gets access to a “normal” body or life. Different from other EDCs, pharmaceutical hormones that are desired can be overseen by a doctor (and often are—think birth control, or estrogen replacement therapy for cisgender, post-menopausal women) and thus administered in controlled quantities accounting for a patient’s holistic health. As Giovanna Di Chiro examines, even amongst anti-toxics discourses advocating against “widespread contamination” of hazardous toxins—a “very real issue of… myriad grave consequences”—there is a dominant focus on how these exposures “[trouble] and [destabilize] the normal/gendered body,” mirroring and reconstituting a cultural “fixation” on so-called gender or sexual “abnormalities” (read intersex, trans, and otherwise sexual- and/or gender-variant ways of being, 2010, 201–202). This misplaced obsession with ways of existing outside of the imagined averages constituting the sex and gender binaries (which have always existed, even before proliferation of synthetic EDCs, in human and nonhuman histories)—what Di Chiro calls the “sex panic” of anti-toxics discourse, “de-emphasiz[es],” perhaps even “naturaliz[es]” and “normaliz[es]” the cancers, autoimmune diseases, neurological, cardiac, and other adverse health impacts of such exposures (202). Contending with what Malin Ah-King and Eva Hayward describe as “the deleterious effects of material culture”—the vessels of hazardous chemical exposure inextricable from the fabric (literal and otherwise) of daily life which “become part of the process of sexing” (2013, 1)—is well-within reason for anyone concerned with bodily autonomy as a principle. But there is a way to, as Ah-King and Hayward articulate, “[claim] toxicity as one of the current conditions of sex” (1)—acknowledging the role of landscapes in influencing the “responsive potential” (6) across the spectrum of sex without igniting or fortifying a “transex panic” (4).

The hormone is imbued with an agency often denied to nonhuman entities, let alone objects of infinitesimal size. The etymology of the word speaks to this, gleaned via learned borrowing from the ancient Greek ὁρμάω or hormao, literally “I excite/arouse.” The use of the first person is evocative—the hormone is participant and director, collaborator and solo artist, influencer and influenced, animating, as Mel Y. Chen (2011) says of the toxin, our bodies and moving us through the world. Endogenously and in the lab, we create more of them, and they, in turn, shape us into who we are. We are kept alive by them, sometimes even made chronically ill (at least in part) because of them, or granted another chance at living meaningfully, because of them. We can sometimes consent to them, allowing them access to our bodies through injections or pills, signaling to them affectively, as they may, in a sense, to each other—and, at other times, they override our autonomy, becoming embodied without our consent as a consequence of eating from the wrong packaging, drinking the wrong water, breathing the wrong air. Sometimes we need them and cannot find them. Sometimes, maybe always, the line between “we” and “them” is blurred. Normal/abnormal, endogenous/exogenous, synthetic/natural—human hormones and their analogs disrupt the bifurcations between these imagined opposites.

Insulin-dependent diabetes requires nearly constant vigilance. The chemical mechanism underlying the kind of diabetes I have is an autoimmune malfunction of the pancreas’ beta cells, which produce insulin and other hormones that regulate blood sugar and metabolic processes. Because my body cannot produce its own insulin to lower high blood sugar or release sugar into my bloodstream when I need it, I use a continuous glucose monitor (CGM) and insulin pump to manage my diabetes. I wear a Dexcom G6 CGM, a small device that suspends a catheter in my interstitial tissue for ten days at a time to provide blood sugar readings to an app on my iPhone every five minutes. The CGM communicates with my Omnipod, a small, roundish rectangular insulin pump, which I control with an Android remote called a personal diabetes manager. The pump contains a fillable insulin cartridge and plastic tube that delivers insulin straight into my arm for three days at a time. About twenty minutes before a meal, snack, or drink, I enter in the anticipated number of grams of carbs I intend to eat into the controller, and it uses the reading of my CGM and how much insulin is currently in my system to calculate a requisite dose. I recently tried Eli Lilly’s Lyumjev, a faster-acting insulin to make pre-meal insulin doses easier (pre-meal bolus times of five to ten versus fifteen to twenty minutes), but the efficiency brought with it a stinging sensation and more persistent scarring when administered through my pump. As with many pieces of diabetes, finding the exact suite of insulin types and devices that work for one’s particular body/mind can be a delicate and tenacious process (Price 2011).

I have never been able to estimate how many times per day I check my blood sugar, because I do it so frequently that it has become like breathing. But the mental calculus of diabetes is also very much at the forefront of my daily life, considering how to best address that day’s particular constellation of food and water consumed; exercise performed; stress experienced or anticipated; where I am at in my menstrual cycle; the particulars of that day’s temperature, altitude, and weather; and the workings of the other forty-plus variables known to influence blood sugar. I am grateful for the ease of life made possible by automated insulin delivery systems like my pump, and less-invasive blood sugar monitoring technology like my CGM, which until relatively recently were not widely accessible (and, arguably, remain inaccessible to many under- and un-insured people with diabetes). I try to remember my gratitude for these devices as I spend hundreds at the pharmacy every month to cover my hefty out-of-pocket expenses that remain even after my generous insurance coverage; as my CGM’s and pump’s alarms refuse to be silenced when I am in a quiet lecture hall or office because liability precludes the biotech companies from making them more customizable; as I offload my intimate biometric data to not just Dexcom and Omnipod but a suite of other, often glitchy, third-party data services that aggregate my blood sugar, daily carbs consumed, and corresponding units of insulin dosed daily, to send to my doctors; as I encounter a barrage of luxury CGM advertisements designed for non-diabetics in some attempt to make wearable medical devices a new trend, a spectacular bauble in the fatphobic hands of the wellness industry; as I wonder whether the EDCs in the Teflon-lining of the catheter of my Omnipod or the epoxy affixing it and my CGM to my scarred skin will give me cancer before I die of diabetes complications; as I hope that, once I graduate, I get a job immediately, and one with a health insurance plan generous enough to allow me to keep using the combination of insulins and devices that I’ve slowly learned work well for me. I navigate the questions and stares, the diabetes stigma from providers and media and friends, the hacks and tips and tricks from other disabled people about how to live and make do and thrive as one non-consensually but irrevocably embedded in the pharmaceutical and medical industries for life, the frustrations and massive gratitude, of living with visible medical devices to care for my diabetes.

Manually operating my pancreas through these biotechnical appendages has caused me to feel simultaneously more and less human than I ever have. The fact of my human life is thanks to synthetics, pharmaceuticals, adhesives, plastics. I find some vindication in saying that the pharmacochemical and medical industrial regimes, in exposing me to environmental stressors and refusing to hear my pleas for the care I needed, made me sick—and that my sick body emerged from that, against many odds. I say this while holding that, despite what the anti-toxics discourses may argue, my cyborg self that could not survive without medical intervention is no less natural than any other able-bodied, healthy person’s. I find grief and rage in the fact that so many chronically ill and disabled people have the same experience—being either denied validation of their own embodied knowledge that something is wrong, or rigorously pathologized. This ruthless dichotomy, characterized by what Beatrice Adler-Bolton and Artie Vierkant (2022) call extractive abandonment with its logics of exploitation and carcerality, is even more pronounced and sharpened for Black and Indigenous patients—especially women—and other people of color, poor people, disabled people, intersex people, immigrants, those who cannot speak English, and visibly queer, transgender, or nonbinary people.² And capitalism’s “ableist ecologies,” as Sunaura Taylor articulates, operate in such a way that we begin to “see abandonment as natural” (2024, 26)—akin, perhaps, to how the “sex panic” of anti-toxics rhetoric naturalizes those environmentally derived health concerns unrelated (at least superficially) to sex or gender at the expense of those that disrupt norms of these imagined binaries (Di Chiro 2010).

In the case of hormones, state-sanctioned optimization of the capacity for illness-related profit means allowing non-consensual exposures to hormone mimickers/disruptors that thwart the body’s metabolic processes (in food wrappers, can linings, pesticides, receipts, frying pans, clothes, drinking water), and to other stressors that exacerbate or otherwise interfere with metabolic processes. Together, these make systems-impacted people sick while making those same people fight to access the basic hormone therapies they need or desire. The political economies undergirding these exposures are robust, entangled with military industrial expansion and ideals of individuality and optimization. Communities made to experience poverty, over-policing, food scarcity, housing insecurity, medical negligence, and other kinds of discrimination generally experience increased exposure to physical and social environmental hazards, and requisitely higher chronic health conditions of environmental origin (Goldsmith and Bell 2022; D. Taylor 2014). Healthcare access, including of hormone treatments, also falls inequitably—un- and under-insured, poor, unhoused, and undocumented, people are more likely to struggle to access the medicines they need. To desire hormonal change for gender-affirming purposes can easily be problematized, especially for trans people, when a concept of health does not include such non-normative experiences of embodiment—while simultaneously fitting within routine standards of care for menopausal cis women or aging cis men experiencing hypogonadism.

Human bodies are constantly in flux, shaped by the more-than-human landscapes around and within us. This includes living and non-living, biotic and abiotic, synthetic and real—and the boundaries between these supposed dichotomies are amazingly tenuous. Being permeable and thus vulnerable to environmental toxins—both tangible chemicals and immaterial, disruptive influences arising from social stressors—is a deeply human thing, and destabilizes what even constitutes the environment or the human. If a human’s body/mind is influenced by the environment in a way that results in non-normative cognitive, sexual, or endocrine development, that is both normal and not—insofar as “normal” does not mean anything in particular if we are constituted by entanglements of life, non-life, substance, and affect, and always have been. People whose bodies have been shaped by environmental exposures are no less natural than normatively “healthy” individuals for having been impacted by the environment in a more visible way. Environment is inclusive of nearly everything and is not merely an exogenous force. As Eli Clare, Sunaura Taylor, and others in disability studies have articulated, there is a way to grieve, “resisting the mass disablement wrought by violence and exploitation” (S. Taylor 2024, 33), while “refiguring the world” (Clare 2001, 363) and reclaiming “as home” these bodies (Di Chiro 2010, 200), while learning to thrive in the “disabled ecologies” (S. Taylor 2024, 33) already here, our selves and our kin, and those to come.

The toxin, according to Chen, “is not necessarily alive, yet it enlivens morbidity and fear of death,” and “requires an object against which its threat operates”—it is not inherently toxic, but made toxic, or becomes toxic, by threatening, or disrupting, a pre-existing object (2011, 265). The same may be said of the hormone/disruptor, and the non-normative (non-white/able-bodied/cis/binary/thin/heteronormative) body, which, by virtue of existing, is a threat to the tenuous fabric of the presiding political economic regime. In the face of violence, impairment, and abandonment, it is the non-normative who are most targeted and most disruptive of the imagined inevitability of the profiteering systems behind them. There is room for outrage and resistance against the non-consensual onslaught of toxins, while demanding access for those who need or desire hormones. In fact, one informs the other.

Disabled or chronically ill or non-cis people are not unnatural in any way other than that we are all unnatural, part-petrochemical, part-immaterial, part-organ, part-plastic-laced blood—the presence of these assemblages as just more obvious in some bodies than others, such that any conception of future aspiring towards non-toxic or “chemical free” life misses an opportunity at “refiguring the world” (Clare 2001, 363) as what Ah-King and Hayward call “embodiment,” “a process of becoming with these altered environments” (2013, 9). Chen offers an ontological shift from thinking of toxins as “damaging” the body to viewing the toxin as a kind of “symbiote,” suggesting a mutualistic rather than parasitic relationship, which leaves room for the possibility that toxins can “fundamentally alter” a “generally integral being without fundamentally altering it” (2012, 205). Along these lines, Suzanne Bost asks, “What outcomes emerge from our participation in webs of toxicity?...What do our partners in symbiotic infection have to teach us about our communal responsibility?” (2023, 178). Perhaps a similar shift can elucidate the agency imbued in and made possible through the hormone, even when labeled hazardous or disruptive, a symbiote impacting not only each of the body systems (beyond sex), but each and every body. As feminist science studies continues to probe which bodies are considered disrupted and which disruptive, perhaps we can look to hormones—and the chronically ill, disabled, trans, and intersex communities who need and/or desire them—for guidance in troubling the urge for purity, tidiness, and binaries around what is natural, normal, inevitable, synthetic, permissible, real, and possible.

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