Introduction

The lived experience of epilepsy is a growing area of investigation in critical disability studies. Epilepsy is a chronic illness and episodic disability that affects over fifty million people worldwide and three million people in the United States (American Epilepsy Society, 2024; World Health Organization, 2023). The focus of this work has been on uncovering challenges faced by people with epilepsy at work and in social life. Scholars have shown that it is difficult for people with epilepsy to obtain stable employment and gain access to accommodations and social welfare programs because people with epilepsy are simultaneously considered "problem workers" and "not disabled enough" (Lightman et al., 2009; Vick, 2014). Further, people with epilepsy face uncertainty in deciding whether to disclose their condition to social relations including friends, co-workers, and employers due to worries about consequences like disbelief and exclusion (Nair, 2019; Valeras, 2010).

These challenges are not specific to epilepsy: scholars have shown that people with other episodic disabilities such as fibromyalgia, chronic fatigue syndrome, multiple chemical insensitivities, lupus, multiple sclerosis, and chronic pain face similar challenges (Hamilton et al., 2023; Lightman et al., 2009; Smith-Carrier et al., 2020; Vick, 2013, 2014). Critical disability studies scholars have shown that educational, public transit, and disability support institutions fail to accommodate episodically disabled people because these institutions are "baffled" by the fluctuating visibility and periodicity of episodic disabilities (Toller & Farrimond, 2021; Vick, 2013). Due to such institutional bafflement, decisions around accommodation are left up to the discretion of individual personnel instead of having them enshrined in policy. Whereas prior work has focused on post-diagnostic experiences of episodic disability in social life and at work, this article examines the understudied confluence of medicine and technology in the pre-diagnostic stage of lived experience.

Along similar lines, social studies of chronic illness have shown that formal diagnoses are delayed in chronic conditions that lack visible markers such as in endometriosis and/or have a low prevalence (Manderson, 2010; Sobo, 2010). These conditions receive limited attention in everyday as well as medical and scientific discourse on illness due in part to the invisibility of symptoms (Manderson & Smith-Morris, 2010a). Scholars argue that the biomedical distinction between chronic and acute illness is no longer meaningful because many previously acute and life-threatening conditions have become chronic due in part to pharmacologic advances and because conditions like epilepsy can occupy both chronic and acute categories. Thus, the chronic-acute distinction does not accurately represent lived experiences and minimizes "the social and cultural contexts and globalizing forces that pattern health and well-being" (Manderson & Smith-Morris, 2010b, p. 3; Manderson & Wahlberg, 2020). Building on this body of work, this article examines how social and technical factors that pattern the recognition of disability can be accounted for in disability theory.

Epilepsy is characterized by recurrent and unpredictable seizures. Seizures are transient phenomena during which people lose control over parts of body and/or mind function. The diagnosis of epilepsy can be highly variable, from a few days to several years. The results of fifteen months of fieldwork in the Midwestern region of the United States reveals a particular pattern. For people whose seizures occur in the presence of other people or technologies and those who can access specialty care, diagnosis is often straightforward. However, delays typically occur when clinical practitioners fail to recognize seizures due to the norms of medical education, practice, reimbursement, and technology use in generalist settings such as primary and emergency care. Without a formal diagnosis, people, especially those from disadvantaged backgrounds, are unable to access treatment, accommodations, and support.

Consequently, the notion of "differential pace" will be offered here to account for such differences in the construction and lived experience of episodic disability. This notion builds on Alison Kafer's political/relational model of disability and Rosemarie Garland-Thomson's notion of misfits (Garland-Thomson, 2011; Kafer, 2013). According to Kafer, the political/relational model of disability holds that disability is "a product of social relations" arising from "built environments and social patterns that exclude or stigmatize particular kinds of bodies, minds, and ways of being" (2013, p. 6). The political/relational model neither opposes nor valorizes medical intervention, recognizing that diagnosis and treatment can be helpful in managing chronic conditions. Further, the model holds that disability arises not solely from biological variation, but also from representations in medicine and the media. Hence, scholars should account for how disability is represented and understood in these realms. Kafer specifically calls for an analysis of how bodily variation is interpreted in medicine (Kafer, 2013, pp. 6–7).

Rosemarie Garland-Thomson adds to Kafer's work by presenting a materialist feminist understanding of disability via the concept of misfits, defined as encounters between bodies and environments in which "the environment does not sustain the shape and function of the body that enters it" (Garland-Thomson, 2011, pp. 592–594). It is thus the lack of fit between body and environment that produces disabling effects, structuring the lived experience of disability through situated, relational, and dynamic encounters (Garland-Thomson, 2011, p. 592). In addition to the political/relational model's focus on relations, Garland-Thomson's notion of misfits draws attention to the temporal dynamics of when, how, and for whom disability manifests.

Differential pace posits that disability is a product of temporal relations just as much as social and political relations, and that these temporal relations are further exacerbated by technology and inequality. The variation in differential pace arises in part from a misfit between the fluctuating signs of episodic conditions and the visible signs preferred by modern medicine, and it is these misfits that usually produce what is viewed as a disability. However, in medicine, the construction of disability is simultaneously delayed by these misfits. Thus, by uncovering the role of social and technical constraints in producing medical misfits, this article seeks to center episodic disability within disability theorizing by providing new insights into the construction of disability and marginality.

Scholarship in disability studies, medical humanities, and medical anthropology has shown that the fluctuating symptoms of episodic disability trouble the chronic-acute dichotomy of illness in biomedicine and confound classification schemes in social institutions such as disability support programs (Kafer, 2013; Lightman et al., 2009; Manderson & Smith-Morris, 2010b; Nair, 2019; Valeras, 2010; Vick, 2014). It will be shown that key social and technical aspects of expert practice contribute to these problems and amplify the uneven impact of episodic disability and illness. Further, the ways that disability justice concerns can be brought to the biomedical field will be illustrated by nuancing epidemiological scholarship on delayed diagnoses.

Examining the misfits between episodic disability and medical semiotics offers a helpful schema for understanding how these delayed diagnoses can occur. Semiotics is the formal study of signs and signification. Semiotic analyses seek to understand the literal and indirect meanings that signs convey in specific communicative systems and social contexts (Barthes, 1994). In examining similarities and differences between medical and linguistic semiology, Roland Barthes notes that modern medical semiology requires "corporeal support, a particularized site" for "the sign to perform its signifying function" (Barthes, 1994, p. 207). That is, medical interpretation depends on the availability of visible and localized signs, particularly after the late eighteenth-century transformation of medicine into a biologically reductionist practice (Buchbinder, 2015; Foucault, 1994). During diagnosis, physicians transform patient symptoms into medical signs through the mediation of language. Essential to medical diagnosis is the combinatory operation of syntagmatics, i.e., the combined interpretation of a group of signs simultaneously or as a progression over time to identify the condition affecting the patient. Syntagmatics is key to medical diagnosis because a sign may signify a certain condition on its own and a different condition in the presence of other signs. For example, muscular weakness may signify hydropsy, a livid complexion obstructions, spots on the body smallpox, and swelling of the gums the accumulation of tartar. Together however, these signs indicate scurvy (Barthes, 1994). Importantly, scurvy is considered fully represented by the visible multiplicity of localized symptoms. Characteristic of modern medicine is the idea that disease resides only in the realm of that which is "visible and therefore statable" (Foucault, 1994, p. 95). That is, modern medicine does not consider it important to examine the invisible and underlying basis of disease.

This foundational shift in medical semiology invests technologies of representation–such as electroencephalograms (EEGs) and positron emission tomography (PET) scans–with the authority to determine the diagnostic categories that patients belong to (Dumit, 2004; Foucault, 1990; Haraway, 1991; Saunders, 2008). Building on Barthes's work, Joseph Dumit shows that PET scans are interpreted as "veridictory authorities," i.e., definitive and infallible representations that can serve as standalone proofs in the public domain such as in courtrooms and the media (Barthes, 1994; Dumit, 2004, pp. 142–143). This public understanding stands in contrast to the understanding of the "community of [PET] researchers who daily deal with their semiotic complexity" who regard PET scans as illustrative rather than veridical (Dumit, 2004, pp. 142–143). That is, whereas experts recognize the many ways in which biomedical visualizations can be represented and interpreted, they are seen as definitive outside expert communities.

Diagnosing epilepsy

While the presentation of epileptic seizures varies among individuals, seizures can be classified into two main types. Generalized tonic clonic seizures (also called grand mal seizures) are the most well-known type of seizure, characterized by convulsions in the whole body, falling, and a possible loss of consciousness. These will be referred to here as stereotypical seizures. In contrast to those with stereotypical seizures, between 36-65% of people with epilepsy have non-stereotypical seizures with symptoms that are not commonly associated with epilepsy (Hauser et al., 1993; Ighodaro et al., 2023; Ioannou et al., 2022; Picot et al., 2008; Sander et al., 1990; Torres-Ferrús et al., 2013; Wirrell et al., 2011). According to Fisher et al. (2017), non-stereotypical seizures manifest in diverse ways including abrupt and involuntary changes in emotion (e.g., inexplicable joy), cognition and sensation (e.g., impaired language and hallucinations), autonomic function (e.g., nausea and other abdominal or respiratory sensations), and bodily movement (e.g., tensing, slackening, or suspension of activity in part or all of the body).

It can be difficult for physicians to witness a patient's seizures because seizures are unpredictable and rarely have lasting effects. Hence, physicians typically rely on medical history, eyewitness accounts, and diagnostic studies of the brain to diagnose epilepsy (Brodtkorb, 2013; Fisher et al., 2005, 2014). 1 EEGs, electrophysiological devices that visualize the brain's electrical activity in the form of continuous waveforms through electrodes attached to standard locations on the patient's scalp, are the primary diagnostic test for epilepsy (Ebersole et al., 2014; Tatum, 2014). The location, morphology, and electrical properties of a waveform provide cues about its clinical significance (Ebersole et al., 2014). Abnormal EEGs indicate seizures and epilepsy, but normal EEGs do not rule them out because people with epilepsy can have normal brain activity outside seizures and because EEGs may not detect seizures occurring deep in the brain due to the skull's shielding and smoothing effect (Ebersole et al., 2014; Tatum, 2014). EEGs occupy a central role in epilepsy care: physicians use EEGs throughout the care trajectory to inform decisions about diagnosis and treatment. They are ordered for durations ranging from short 20-40-minute procedures (routine EEGs) to long-term continuous monitoring that can go on for several weeks (long-term EEGs), depending on whether the goal is to study brain activity, rule out seizures, or capture specific events. Throughout this article, where the use of EEGs is mentioned, it will refer to routine EEGs.

Methods and Participants

This article draws upon fifteen months of ethnographic fieldwork in the Midwestern region of the United States with twenty-five people with epilepsy and thirty-six medical practitioners. This consisted of 34 formal interviews, 355 hours of participant observation, and countless go-along conversations with people with epilepsy, physicians specializing in epilepsy, and associated healthcare professionals. All research was approved by institutional review boards attached to the author's institution.

This article focuses particularly on twenty-five semi-structured life narrative style interviews with people with epilepsy. Participants were recruited using a combination of snowball and purposeful sampling, prioritizing a diversity in age, gender, race, and income when possible (Bryant & Charmaz, 2012; Denzin & Lincoln, 2011). Interviews were conducted in homes, coffee shops, fast food restaurants, on the university campus, and over video call based on participant preference. Interviews lasted 71 minutes each on average. Participants received $25 in recognition of their expertise.

Data were analyzed through an iterative and inductive process consisting of analytic memoing and situational analysis, an interpretivist methodology that accounts for human and non-human stakeholders and for the analyst's partial and situated vision (Clarke, 2004). Triangulation, member checking, long-term involvement, and mentor feedback were used to improve the depth, rigor, and validity of findings (Creswell, 2007; Emerson et al., 2011; Flick, 2012). Quotes are lightly edited for readability.

Participants reported two types of diagnostic journeys: thirteen participants (52%) had delayed diagnoses, waiting several months and up to five years to receive an epilepsy diagnosis. In contrast, twelve participants were diagnosed within a few days of their first seizure. While multiple participants are quoted within the findings, the journeys of two participants, Jim and Celine, will be highlighted in order to illustrate the differences between these two groups. Jim, 2 a 54-year-old White man who is a customer service executive at an automotive giant, was diagnosed shortly after his first seizure as a teenager living with his parents. In contrast, Celine, a 55-year-old Black woman who is a billing agent for a financial bond company and lives with her dog, waited over a year for her diagnosis.

While it is difficult to make definitive statements given the particularities of narrative, Celine and Jim's diagnostic journeys were reasonably representative of their groups. Celine's journey was delayed by factors that also applied to others with delayed diagnoses: seeking care in generalist settings, normal routine EEG results, and long-lasting medical confusion due to non-stereotypical symptoms. Celine's age was unusual compared to those in her group (ten of thirteen people in her group had a first seizure prior to adulthood). Celine and her group's journeys resemble cyclical narratives (Zerubavel, 2012) in that these participants were stuck in cycles of unresolved symptoms and unhelpful medical encounters until chance and advocacy led to diagnosis. In comparison, Jim's diagnosis was facilitated by several factors shared by others with quick diagnoses: having clinicians as close social relations, the ability to access specialty care, and having other people witness seizures. Jim was unusual compared to those in his group in that he had a normal routine EEG (nine of twelve people with quick diagnoses had abnormal routine EEGs). Jim and his group's journeys resemble progress narratives: each step advanced participants towards a formal diagnosis. Taken together, this collection of stories shows that there is a differential pace to diagnostic journeys.

Low-income status and normal routine EEGs were common in people who experienced diagnostic delays in this dataset, but these findings cannot be generalized due to the small and non-representative sample of participants. 3 However, the article supplements findings with results from large survey and epidemiological studies to provide broader context. The sections to come present Jim and Celine's journeys followed by a synthetic analysis of the journeys of participants with delayed diagnoses.

A Quick Diagnosis

Through Jim's example, this section shows that diagnostic journeys can be short. These journeys resemble a fast-paced progress narrative, with each step taking participants closer towards a formal diagnosis of epilepsy.

Jim first experienced what he described as a weird "electric shock" feeling when he was 13 years old:

"The very first seizure I ever had—I didn't know this at the time—was in the eighth grade. It was a very hot day; the school was not air conditioned and it was in the early afternoon. I remember there was sweat dripping off my nose. And I have this kind of electric shock feeling, which was very unusual for me, and I felt kind of frozen in place. And I believe, at least momentarily, I was unconscious. I did not pass out. I did not fall to the floor. I did not have convulsions. But I was briefly, maybe for 10 seconds, not quite conscious. … I thought nothing of it. I just figured it was the heat and it was weird, but whatever! Within 10 minutes I was fine. I was back to normal, back to talking again."

This strange, new sensation unexpectedly froze Jim, an active and talkative teenager, but having quickly recovered a sense of normal, Jim attributed this event to the heat and went about his life. Two weeks later, Jim's epileptic occurrences came to his family's notice:

"I was at an ice cream place with my mother and my sister. I felt it as we were getting up to leave, like, an electric shock feeling. I couldn't talk, I couldn't say anything to them. I walked right towards the door and my sister was like, 'Jim… Jim? Jim!' She came running after me and asked, 'are you okay?' Then, she was like, 'mom, something's not right.' Because I was there, but I wasn't? I was on my feet with my eyes open, but I was looking through her and not at her until the thing passed."

This time, Jim's electric shock feeling occurred during a social interaction and lacked an explanation (such as heat). Jim and his family would likely have dismissed this event if he had been alone, if his sister hadn't called out to him, or if ignoring his sister were his usual mode of responding. Instead, the interactional nature of the event made it stand out. Similar events occurred thrice that week. Worried by the recurrence, Jim's mother spoke with a nurse who lived next to them. Following the description of his symptoms, the nurse referred the family to an epilepsy specialist, who diagnosed Jim:

"There was a neighbor on the street who was a nurse, so my mom described what had happened and the nurse says, 'well, I'm not an expert on this, but that sounds like a seizure. I would talk to a neurologist.' So, we got the name of a neurologist, Dr. Cal. … We went to see him, and he asked my parents to describe what they saw. He asked me to describe in great, great, detail, like I'm doing to you. Exactly what did it feel like? Was I conscious or not? And he goes, 'well that determines that. That's a complex partial seizure.'"

In the specialty clinic of an academic medical center, Dr. Cal formally recognized Jim's events as seizures. He also asked Jim to get a routine EEG. Jim had a normal EEG that did not confirm seizures, but Dr. Cal ignored Jim's EEG results in favor of patient history and diagnosed him with epilepsy. The formal diagnosis gave Jim access to several important things: medication, accommodations at school and work, as well as the terminology and conceptual framework to make sense of his experiences.

From Jim's example, one might conclude that diagnostic journeys are always short and progressive. However, several factors contributed to facilitating Jim's journey: his seizures were witnessed by family members, he was seen by an epilepsy specialist soon after, and the specialist upheld patient history over routine EEG results. Absent these factors, diagnostic journeys slow down and take on a cyclical quality.

A Delayed Diagnosis

In contrast to Jim's experience, Celine's story stands out as an example of a delayed diagnosis. Unlike the progress narratives of quick diagnoses, delayed diagnoses are characterized by long-lasting cyclical loops of unresolved symptoms and unhelpful medical encounters.

Four years ago, Celine woke up with a bitten tongue:

"The very first time that it happened, I woke up and my tongue was bit. I went to the doctor that day and they said, 'oh, you bit your tongue' and gave me medicine for my tongue because it was severely bitten. Every couple of months after that, I still had the same thing happen and I went to my regular family doctor. He mentioned that it was thrush. So, every time I came in, they kept treating me for thrush."

Like Jim, Celine did not know that she was experiencing seizures. Unlike Jim, Celine's seizures occurred while she slept, and her seizures went unobserved (by humans – she later recalled waking up to find her dog frightened). Her only perceptible symptom was a bitten tongue. Celine's primary care physician had a ready explanation for his Black patient's sore tongue: thrush (candidiasis). The Centers for Disease Control and Prevention state that "non-Hispanic blacks, Hispanics, and American Indians and Alaska Natives generally have the poorest oral health of any racial and ethnic groups in the United States," and poor oral health often leads to soreness and white patches on the tongue characteristic of thrush (Centers for Disease Control and Prevention, 2020a, 2020b).

Celine remained stuck in a cyclical loop because the thrush signified by her visible symptoms obscured the nighttime seizures that went unobserved given the circadian rhythms of office work and sociality. Whereas Jim advanced closer to an epilepsy diagnosis with every odd feeling, Celine remained in limbo, receiving thrush medication that did not help and did not reduce the frequency of her tongue biting. The primary care physician did not suspect an episodic condition despite the recurrence of her symptoms. Celine would likely have remained stuck in this cyclical pattern of unresolved symptoms and generalist visits were it not for a chance conversation with watchful co-workers:

"One year after I had the first seizure, I woke up under my bed. I couldn't remember where I was and I was lethargic. I still didn't know I had a seizure – did not even realize that that's what it could be. I took a shower after I realized, 'oh yeah, I have to go to work.' The young ladies that I work with realized that something was different about me and asked me what was going on.

I mentioned to them that I woke up on the floor. They said, 'well, maybe you had a seizure or a stroke.' Neither two never came to mind for a whole year. So, I left work and drove myself to emergency and they kept me overnight and did a couple tests. They immediately hooked me up with a neurologist. After three neurologists, I was able to get an [epilepsy] diagnosis."

Even after seizures entered the differential diagnosis, Celine had to see three different general neurologists 4 to receive an epilepsy diagnosis. When asked why there was a need to see three neurologists, Celine responded:

"I've done as much testing as possible and still nothing comes up. The EEG doesn't even show that I have epilepsy. One doctor said no because it was at night. And my doctor, the third neurologist, he diagnosed me because he said, after you've had so many [episodes], you're diagnosed. It was a lot of different diagnoses by different doctors, so I keep the one I have now. [Celine laughs.]"

Like Jim, Celine had a normal routine EEG. Unlike Jim, most of Celine's medical encounters were with generalist practitioners (including primary care physicians, ER physicians, and general neurologists). She had to see three general neurologists before finally receiving a diagnosis. The first two neurologists likely decided against epilepsy due to Celine's age and because participants report that generalists depend on routine EEGs for objective evidence of epilepsy. As a middle-aged person, Celine did not neatly fit the clinical picture of epilepsy. Epidemiologically speaking, new-onset epilepsy is most probable in the very young and the very old (Beghi, 2020; Fiest et al., 2017; Shafer & Sirven, 2014). Thus, middle-aged people like Celine are considered less likely to develop epilepsy in the absence of head injury, infection, and other risk factors. It is odd that a generalist was bothered by the nocturnal quality of Celine's symptoms because nocturnal seizures are common in people with epilepsy (Epilepsy Action Australia, 2020) and other participants with nocturnal seizures (all of whom identify as White and were seen by specialists) did not report similar experiences.

Celine's story shows that there is a differential pace to diagnostic journeys: it suggests that the pace of diagnosis may depend in part on the seizing person's life circumstances, sociocultural biases associated with their race, sites at which they can access care, and routine EEG results. Delayed diagnostic journeys such as Celine's bear a cyclical quality where participants remain stuck for long periods of time in loops of unresolved symptoms and unhelpful medical encounters. Breaking out of these loops is contingent on finding people who can discern the episodic condition underlying the patient's visible signs (symptoms and EEGs). The next section puts the stories of thirteen participants with delayed diagnoses in conversation with biomedical literature to unpack social and technical factors underlying differential delays.

Figure 1. The progress narrative of quick diagnoses in epilepsy.

Figure 1 alt text: An upward-pointing arrow illustrating the progress narrative characteristic of quick diagnoses in epilepsy. The arrow contains four circles annotated with the labels "seizure symptoms," "others witness symptoms," "specialist visit," and "diagnosis" from left to right. These labels represent key steps enroute to diagnosis.

Figure 2. The cyclical narrative of delayed diagnoses in epilepsy.

Figure 2 alt text: Four arrows arranged to form a circle illustrating the cyclical narrative characteristic of delayed epilepsy diagnosis. In clockwise order starting from top left, the labels "non-stereotypical symptoms," "generalist visit," "normal routine EEG," and "incorrect or no diagnosis" separate the arrows. These labels indicate key factors that prolong diagnosis.

Social and Technical Dimensions of Delayed Diagnoses

Based on the narratives of thirteen participants with epilepsy, this section suggests that a confluence of medical practice, education, technology use, and reimbursement norms may amplify diagnostic delays in generalist settings.

People with new seizures typically visit generalist healthcare settings such as primary and emergency care due to the long waits, high costs, and transportation challenges involved in accessing specialty care. Participants reported waiting 6-12 months for new patient evaluations at specialty clinics, tertiary care hospitals, and medical centers. Further, patients and caregivers must often travel hundreds of miles, take time off work and school, and pay for fuel and other expenses to be able to visit specialty care, which is primarily located in metropolitan areas and hospital-affiliated practices (Donofrio et al., 2015; Institute of Medicine, 2012; Lin et al., 2021; Louis et al., 2021; Theodore et al., 2006). Thus, generalist settings are often the only accessible options for patients from socioeconomically disadvantaged backgrounds.

Generalist medical practitioners receive limited training in and exposure to epilepsy (Institute of Medicine, 2012; Miller, 2019). The curriculum of general medical education in the US is structured such that trainee physicians and associated practitioners only learn about epilepsy via disjointed courses and clerkships that are optional in many schools (Devinsky et al., 1993; Galetta et al., 2006; Institute of Medicine, 2012; Loftus et al., 2016; Sandrone et al., 2019; Zinchuk et al., 2010). While most generalist practitioners are trained to recognize generalized and convulsive seizures (Institute of Medicine, 2012; Miller, 2019), 36-65% of people with epilepsy do not have such stereotypical seizures (Hauser et al., 1993; Ighodaro et al., 2023; Ioannou et al., 2022; Picot et al., 2008; Sander et al., 1990; Torres-Ferrús et al., 2013; Wirrell et al., 2011). This diversity of seizure symptoms was reflected in the dataset, with seven participants reporting exclusively non-stereotypical seizures and thirteen participants reporting both non-stereotypical and stereotypical seizures.

Participants reported that generalist practitioners did not recognize non-stereotypical seizures and indirect signs of epilepsy. Zainab, a 32-year-old Arab American medical assistant from a low-income family, has non-stereotypical seizures that only affect her arm. She visited the ER several times for seizures. Each time, she was told: "'those are not seizures' because it's a focal seizure. They only know generalized tonic clonic seizures." Elie, a White non-binary student from a low-income background whose mother developed non-stereotypical seizures as a teenager, said, "it was a while before my mother got a diagnosis. Doctors didn't know what they were seeing because she wasn't having seizures that were grand mal. If somebody gets up and walks out the door and you're like, 'hey, where are you going,' and they don't respond – according to our common notions of seizure, that's not what a seizure is. Seizure is like falling on the floor and twitching. [My mother's] parents took her to various doctors and eventually a neurologist diagnosed her with epilepsy." Elie's mother lived with undiagnosed seizures for many years partly because generalist practitioners did not recognize the signs of epilepsy. Echoing Elie, 30-year-old White middle-class veterinary assistant Leah said that generalists were often unfamiliar with the signs of her seizures:

"The only problems I've had are with primary care physicians and general neurologists, where their knowledge is just so general that they really don't have the information about what's going on. … I actually have a memory of describing a seizure to a general neurologist. He just looked at me like I was crazy. … It was almost like he had never heard of anything [like it]."

Indeed, large survey studies find that generalist physicians and trainees consistently report low confidence in their ability to diagnose epilepsy (Institute of Medicine, 2012; Loftus et al., 2016; Midik et al., 2017; Zinchuk et al., 2010).

The limited exposure to and low confidence about epilepsy, high workloads, limited resources, range of conditions, and low specificity and severity of symptoms (Ridsdale et al., 2007; Schneider et al., 2010) seen in generalist settings may lead to routine EEGs being regarded as a quick and definitive test for seizures. Epileptologist 5 participants affirmed this hypothesis and expressed frustration about how EEGs are perceived outside this subspecialty. Epileptologist Dr. Cynthia complained that most generalists held that, "if you need to know if it's a seizure, put a routine EEG on and then you'll know. And that's not true!" While Cynthia was a general neurology resident, she too thought of routine EEGs as definitive tests, coming to appreciate the complexity of EEG interpretation only during advanced fellowship training in epilepsy.

Further, generalist practitioners can only order short twenty to forty-minute routine EEGs due to healthcare reimbursement policies 6 (Institute of Medicine, 2012; Sivatjian, 2021). The problem is that routine EEGs fail to detect signs of epilepsy in 41-68% of people with known epilepsy 7 : people may not have a seizure during the short twenty to forty-minute window that a routine EEG provides and people with epilepsy can have normal EEGs when they are not actively seizing (Baldin et al., 2014; Bouma et al., 2016, p. 201; Institute of Medicine, 2012; Salinsky et al., 1987; Tatum, 2023; Tatum et al., 2018). Seizures can also be buried too deep in the brain to register on routine EEG.

Despite the failure rate of routine EEGs, participants reported that when their EEG results were normal, generalist practitioners ruled out epilepsy and sent them back without a diagnosis or misdiagnosed them with a different condition. For example, Susan, a 41-year-old Native American woman from a low-income background, was dismissed from an emergency department: "they said it was a normal EEG, thank you, have a good day, and go home. … They're overworked and overstressed over there, I guess. I don't know. But it was horrible." Over the course of five years and multiple normal EEGs, Susan's seizures were attributed to a range of other conditions including sleep deprivation, sleep apnea, stress, anxiety, depression, and conversion disorder. 8 Susan followed all recommended courses of treatment, including a CPAP machine for sleep apnea and behavioral therapy for conversion disorder until her therapist noted that her events did not seem psychogenic. Susan then fought for a second and third opinion, ultimately obtaining a referral to an epileptologist at an academic medical center. After a five-day-long EEG, the epileptologist concluded that Susan qualified for an epilepsy diagnosis.

Annie, a 26-year-old White daycare worker, was also misdiagnosed with conversion disorder (specifically, "psychogenic non-epileptic seizures"). Susan and Annie are both women 9 from low-income backgrounds with normal routine EEGs. Annie was told she had conversion disorder for two years, until she insisted on a specialist referral: "when I first started having the seizures, they weren't able to catch them on any of my EEGs. So, for the first two years after I had seizures, they told me these are non-epileptic seizures. And I was not willing to settle with it, because I felt like there was something more going on." After multiple ER trips and consistent self-advocacy, Annie was referred to a specialist. Annie found that due to "the different questions [the epilepsy specialist] had and the testing that he did, which was prolonged and whatnot, he was able to capture the seizure activity and then see that that was actually happening." The specialist's approach to clinical interviewing and long-term EEG monitoring helped Annie obtain an epilepsy diagnosis.

Nine participants have never had an abnormal routine EEG; nevertheless all nine were eventually diagnosed with epilepsy. For example, Isabel, a 17-year-old White student from a high-income family, went to her family doctor several times with odd sensations that she described as "feeling nauseous." She was sent home with recommendations to eat more, get more salt in her diet, and drink more water, likely as a result of being a diet-conscious athlete for her high school basketball team. Two years later, Isabel felt nauseous during basketball practice and told her coach that her arm felt numb just before falling unconscious. Her coach rushed her to the ER, but after a normal routine EEG, Isabel was sent home with yet another recommendation to eat more. Concerned by numbness that could indicate nerve damage, poor circulation, stroke, and related neurological conditions, the ER physician also referred Isabel to a neurologist. The neurologist later diagnosed her with epilepsy despite a normal routine EEG. Mike's stereotypical seizures eluded multiple rounds of EEG testing. For several years, generalists insisted that his symptoms were stereotypies associated with autism. Mike, an 18-year-old biracial student from a high-income family, was diagnosed with epilepsy only after his clinical psychologist witnessed a seizure during their session. The lack of routine EEG support added uncertainty to the diagnostic journeys of these participants.

Participants with delayed diagnoses remained stuck in cycles of unresolved symptoms, normal routine EEGs, and frustrating medical encounters, as with Celine. In each case, participants obtained an epilepsy diagnosis after months of worsening symptoms, self-advocacy, and chance led them to physicians who attended to indirect and implied signifiers of epilepsy. Participants from low-income backgrounds were especially susceptible to this sustained denial of recognition. The pattern of diagnostic delays being resolved by specialist referral was common in the dataset. The time it took participants to obtain a specialist referral and diagnosis differed based on their socioeconomic background and access to stable employment, health insurance, and social support. These factors have been shown to correlate to disparities in people's access to care in epidemiological studies (Saadi et al., 2017; Schiltz et al., 2013).

In the case of epilepsy, then, participant positionality may differentially impact the pace of diagnosis due to the norms of general medical education, practice, reimbursement, and technology use in ways that widen healthcare access disparities. Narratives of participants with delayed diagnoses were paced and structured differently as compared to those with quick diagnoses: slow and frustrating journeys filled with cycles of unresolved symptoms, unhelpful medical encounters, and detours due to misdiagnoses, in contrast to the short progress narratives of quick diagnoses. These differences suggest that temporal aspects of diagnostic journeys may shed light on the role of technology and inequality in the construction of episodic disability.

Discussion

This article has examined the medical construction of epilepsy based on patient narratives of diagnosis. While diagnosis can be straightforward, it is evident that people regularly wait long periods to receive a formal diagnosis because the periodicity and diverse symptoms of epilepsy challenge the screening tools and norms of medical education, practice, and reimbursement in generalist settings. Among participants, diagnostic delays were particularly long for people from low-income backgrounds and people whose seizures did not register on screening tools. Without a diagnosis, people must live without treatment, accommodations, disability benefits, and a conceptual framework to make sense of their experiences. These findings have implications for scholarship on disability theory, episodic disability, and diagnostic delays.

Conclusion

Through the narratives of people with epilepsy, the medical construction of episodic disability has been challenged. It is suggested that the norms of medical education, practice, reimbursement, and technology in generalist settings may contribute to diagnostic delays. More specifically, it was shown that people regularly wait long periods to receive a formal epilepsy diagnosis because medical practitioners and technologies may fail to recognize seizures. Moreover, this study suggests that diagnostic delays were particularly long for low-income people and people whose seizures did not register on screening tools. Consequently, episodic disabilities present a problem for modern medical semiotics which is remediated in part by the development of the notion of differential pace which helps to account for the intersectional experiences of episodic disability, and suggests ways in which critical disability justice can intervene within biomedical conversations.

Taken together, this work suggests several directions for future scholarship. This article documents the lived experience of epilepsy diagnosis in only one part of the United States. The particularities of people's experiences with episodic disability, healthcare, and diagnostic delays are likely to differ in other parts of the world. Hence, future research should center experiences of diagnosis in other contexts, especially in settings outside the global North (Trouillot, 2002). It would also be interesting to conduct comparative studies of technology use in generalist and specialist settings to develop implications for medical practice and education. This article develops timescapes of epilepsy diagnosis, with attention to barriers and facilitators of differentially paced diagnostic journeys. It would be instructive to build similar timescapes for other episodic disabilities to uncover overlaps and differences across conditions, and work towards a deeper understanding of the construction of episodic disability. Such a framework may help educate practitioners and policymakers on temporal manifestations of inequity.