Chronicity

by Sonya Huber

We have two broad categories to describe illness and pain: acute and chronic, which seem to mark opposite ends of a spectrum, an either-or, implying that what is chronic is not acute. The narrative of acute action grips us: the bite of the snake and the reeling backward in sudden agony, and a “riveting story of a quick injury seems to demand speedy redress.”¹

Branding a condition like loneliness as an “epidemic” is a desperate attempt to gain attention in our speed-addled age by jumping a chronic problem to the exciting urgency of acute actions, the only place our narrative minds seem able to rally attention. Loneliness is particularly strange as an epidemic: a problem of those lacking close relationships, each a complex and slowly built web of connections. Speed seems to be the exact opposite of what is needed, and indeed it might be part of the problem, a misunderstanding of what community and relationships are for and how they grow. 

A chronic problem has the air of being slow, complex, difficult, and expensive to solve. The state of having a chronic illness without a cure is described as “chronicity,” as if one were living inside an altered version of time, which is strangely both sped up and slowed down by the weight of the condition. 

Chronicity affects and reshapes the past, the present, and the sense of the future. 

***

I’ve become obsessed with a play by Sophocles called Philoctetes, about a man of the same name who was marooned on an island for ten years by fellow soldiers because a snake bit him, and the wound would not heal, and his cries of pain disturbed everyone and prevented them from carrying out religious rituals.

Philoctetes claims that his life has had meaning and events, saying “a stretch of time as long as this allows much to happen.” Even though they have not been witnessed by others, he’s asking a visitor named Neoptolemus to witness the broad sweep of his “nine years now that I have spent dying,” Philoctetes says, “feeding the disease whose hunger is endless.”^⁠2

Sufferers describe chronicity as a kind of “suspension” in uncertainty, a timeless sort of immediacy. When I got sick with rheumatoid arthritis, I felt time crack open and saw the texture of its structure in vertical fissures between the minutes. A new need to focus on and monitor the shifting experiences of my body—for data to take to doctors, for myself to understand and navigate this new landscape—led to this odd feeling of having more life in those minutes, the minutes and hours I had previously skipped past, intent on speed and tasks. And yet chronicity takes time as the “ever-expanding challenges of daily routine…fill up time and space,” and in which “the future collapses into the present.”^⁠3 The present expanded as the disease process and pain revealed themselves, undermining the notion of chronicity as a static experience.  For some this also results in “social defeat,” as management of illness is not a cure and will never be successful, so that the experience of the minutes and days is one of failure.^⁠4 We cannot fix ourselves. We can only traverse the landscape of time.

***

In the worst of my early days with RA in 2009, and then later in 2020 with long COVID, a day might feel like a trek across a mountain, as if I needed to attend to a million details and watch for sure placement of every step. One sufferer noted the “loss of spontaneity” with all the planning required to keep such a body together. Sufferers of cystic fibrosis imbibe an “ever-changing flow of information,” the latest research, changing instructions from doctors, medications and reactions to them, and care routines, lending “an awareness of the limitations of expertise and a reflexive dependence on the self to bring the future under the influence of present calculations.”⁵ 

We chronics come to know how little the doctors know. We become experts in our own conditions, marooned with our diseases, needing to write the maps we use to navigate.

Paradoxically, the better a person manages their chronic condition, the more it becomes unreal and invisible to others. Success at maintaining “an able-bodied persona” results in psychological isolation^⁠6 and more requests and tasks. Maybe this was what originally drew me to Philoctetes: the island on which he lived with his chronic pain. The characters focus first on all the external signs, markers that betray him as fundamentally other.^⁠7 He also shows how permeable the categories of invisible and visible disability are, as his pain is invisible but its impact is everywhere. 

***

Chronic time is punctuated with flare ups or episodes of acute difficulty.^⁠8 Time dilates but is also somehow compressed by the hovering sense of danger, the threat of a mismanaged disease, the worst possible outcomes, as if you’ve taken up residence inside the shoe waiting to drop. 

I visited a geneticist who was alarmed at similar aneurysms in my body and my sister’s, part of the unraveling of a mystery about maybes: maybe Ehlers-Danlos, maybe connective-tissue-something. Fearing a dangerous disease of the vessels and connective tissue, he urged everyone in our family to get echocardiograms to monitor our aortas. He asked my insurance company to approve a second round of genetic testing to update old results and to home in on the specific ailment to shed light onto the web of my family tree, and I imagined the branches illuminated with string lights, our branches linked by our strange symptoms of loose joints, bubbly insides, and lax ligaments.

My insurance deemed this not a serious issue because I’d lived with this for so long. Their rules required that genetic screening and the first symptoms occur within the first three years of my life. I did have symptoms shortly after birth, a dangerous blood vessel close to my skin that required surgery, but at that time there was no genetic testing and no naming of this syndrome, so there was no documentation. Then the hospital burned down. If anyone in my family suffers, in the future, a ruptured arterial aneurysm, we will have successfully migrated from chronic to acute, which I assume means that our deaths will be a medically allowable expense. 

***

People with chronic conditions are sorted based on whether or not their condition has a cure, whether or not the disease is understood, with the vague and unsettling incurable chronics marooned on islands of doubt. We carry our chronic conditions precisely because there are no known cures, but this doubt easily adheres to people whose bodies host such conditions, with an epistemological question hovering: are you sure this is what it feels like? Why do you refuse to be cured? 

I once heard a disability scholar quoted as making a distinction between “the healthy disabled” and the “unhealthy disabled.” Because we were on Zoom, I had the strange sensation of watching my face pale in real time. Even other disabled people don’t want to be associated with us, the festering. To fight such stigma, medical anthropologists and the chronics argue for a view of health as a balance, as successful coping, or as a landscape with many possible places to rest.^⁠9 

This “unhealthy” health is not meted out at random. Criss-crossing risk vectors of inequality, race, educational level, gender, environmental risk, and location capture certain populations in these time-webs. Ecuadorian women with lupus reported to one researcher that their communities didn’t register them as truly suffering because they did not flail and fall down in the street, did not cry out in public. They feel guilty for burdening family members and worry about the impact their disease will have on their children’s lives. They managed, carrying chronicity along with other burdens. These women describe their condition as sufrimiento, with the disease and the social position of women merged into one state of being. 

Research that has defined conditions like lupus as “non-communicable” have outlined “modifiable risk factors” to arrange one’s risk based on diet, smoking, and other personal choices. Most of those studies, however, start assuming bodies of white and high-income patients as the norm. The sufferer is understood to be undisciplined, out of control, to have caused their own illness by not regulating their environment and behavior.

But if almost everyone in Dakar has hypertension and diabetes, can these conditions then be viewed as individual problems? This leads to “awkward behavioral advice” such as “diet sheets recommending unavailable food stuffs, or advice to take exercise in polluted, unsafe urban settings.” Switching the lens to the whole globe reveals that such conditions are “more likely to result from infections and harmful environments.”^⁠10 

Such conditions and environments where illness accrues on the landscape are often described as marked by “slow violence” in which entire populations are abandoned on islands of risk with little or no access to healthcare, prevention, or cure. Philoctetes’ risk, too, came from the land on which he trod, an unmarked shrine violated by his foot, meting out the punishment of a snakebite. 

Emergency public health efforts led by the inheritors of colonial wealth do not address “coloniality’s racially uneven distribution of futurity.”^⁠11 This is the ultimate lens through which to view such conditions: power or its lack leading to unequal access to the future. If we map space-time this way, decoded with capitalism’s cipher that time is money, we might see chronicity as mapped out in red areas that reveal the “structural causes of suffering that oppress throughout a lifetime.” T. Mitchell describes “chronopolitics” as a view of “human timescapes,” a map that locates our living on the terrain of time.¹² 

---

¹ Manderson, Lenore, and Carolyn Smith-Morris, ed. “Introduction,” Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness, Rutgers University Press, 2010, pp. 16-17.

² Sophocles, ed. Mark Griffith, Glenn W. Most, David Grene, Richmond Lattimore, Sophocles II: Ajax, The Women of Trachis, Electra, Philoctetes, The Trackers (The Complete Tragedies), third edition, University of Chicago Press, 2013, p. 310.

³ Maynard, Ron. “Disability and Dys-appearance: Negotiating Physical and Social Risk with Cystic Fibrosis,” in Manderson, Lenore, and Carolyn Smith-Morris, Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness, Rutgers University Press, 2010, p. 196.

⁴ Ferzacca, Steve, “Chronic Illness and the Assemblages of Time in Multisited Encounters” in Manderson, Lenore, and Carolyn Smith-Morris, Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness, Rutgers University Press, 2010, p. 163.

⁵ Maynard, p. 196.

⁶ Maynard, p. 207.

⁷ Gagnon, Jennifer M. “Lessons in suffering: Greek tragedy’s teachings on disability through Sophocles’ Philoctetes,” New Political Science, 2016: vol. 38, no. 3, 2016, p. 335-353.

⁸ Ferzacca, p. 163.

⁹ Manderson, Lenore, and Carolyn Smith-Morris, “Introduction,” p. 36.

¹⁰ Green, J., and Lynch, R. “Rethinking chronicity: public health and the problem of temporality.” Critical Public Health, vol. 32, no. 4, 2022, pp. 433–437, quoting Poleykett, B., “Collective eating and the management of chronic disease in Dakar: Translating and enacting dietary advice.” Critical Public Health, vol. 32, no. 4, 2022.

¹¹ Green and Lynch, quoting Padilla, M., Rodríguez-Madera, S. L., Varas-Díaz, N., Grove, K., Rivera, S., Rivera, K., Contreras, V., Ramos, J., & Vargas-Molina, R., “Red tape, slow emergency, and chronic disease management in post-María Puerto Rico.” Critical Public Health, vol. 32, no. 4, 2022. 

¹² Ferzacca, p. 158, quoting T. Mitchell, Intoxicated Identities: Alcohol’s Power in Mexican History and Culture. Routledge, 2004.

---

Sonya Huber is the author of eight books include Love and Industry: A Midwestern Workbook, finalist for the 2024 PEN/Diamondstein-Spielvogel Award for the Art of the Essay, Voice First: A Writer’s Manifesto, the award-winning Pain Woman Takes Your Keys, and the anthology Nothing Compares to You: What Sinéad O’Connor Means to Us. She teaches at Fairfield University.