Was That a Seizure? Diagnosis in Lived Experience and Medical Practice

Abstract

This dissertation examines how people with epilepsy and physicians make sense of seizure and epilepsy. Seizures are transient phenomena during which people lose control over parts of body-mind function. This can mean the rhythmic twisting of a person’s wrist, a sudden inexplicable feeling of joy, or spasms in the whole body. Epilepsy is a chronic illness and disability characterized by recurrent and unpredictable seizures. The ephemeral quality of seizures means that a person with epilepsy can appear to have a physical disability, chronic illness, neurodivergence, or nothing at all, at different times and places.

Putting ethnographic fieldwork on epilepsy in conversation with scholarship from disability studies, science and technology studies, and information science, I demonstrate the need to reimagine theories of classification and frameworks of disability to account for the uncertain, episodic, and yet persistent presence of epilepsy. Tracing how people obtain an epilepsy diagnosis, I show that in the absence of persistent effects, people recognize odd events as seizures only in retrospect, through recurrent, atypical, and unexplained sociobiological interactions, and with the help of family, friends, and medical practitioners.

The main treatment goal in epilepsy care is a ‘well-controlled’ epilepsy, i.e., a state in which seizures no longer occur, because seizures can adversely impact health in a number of ways ranging from injury to death. In contrast, I show that for patients, a well-controlled epilepsy involves a delicate balance between some seizure types, medication side-effects, social participation, income generation, and personal and professional aspirations. Turning to medical practice, I show that when diagnosing seizures, epilepsy specialists account for patient-specific, social, and environmental factors that go well beyond the readings of diagnostic instruments (such as electroencephalograms). Further, doctors are cautious about formally diagnosing seizures when treatment is seen as posing a bigger risk to patients than having seizures.

Thus, the diagnostic boundary between seizure and non-seizure events is fluid, dynamic, and porous in both lived experience and medical practice. People with epilepsy and neurologists both recognize the value of classification, but also recognize the limitations of viewing categories as rigid and mutually exclusive. This is because calling an event a seizure has ramifications well beyond treatment, also affecting people’s everyday routines, social participation, financial stability, and aspirations. Hence, people with epilepsy and physicians both engage in what I call expedient classification, to postpone or avoid severe consequences, typically by dismissing events that would otherwise be called seizures through informal workarounds that modify the definition of seizure. The notion of expedient classification is a novel contribution to scholarship on classification in science and technology studies and information science.

Additionally, I show that pathology (seizure) is located neither entirely in the disabled person nor entirely in their surroundings, but in recurrent, atypical, and unexplained interactions between them. Locating pathology in such recurrent, atypical, and unexplained interactions expands the applicability of current disability frameworks to epilepsy and other episodic disabilities. My work also advances understandings of patient-centered care outcomes in epilepsy and on the divergence between the theory and practice of medicine. I conclude by providing recommendations directed at medical professionals, technology builders and designers, epilepsy patients, and the general public.