The Concept of “Control” in People with Epilepsy: A Qualitative Study

Abstract

Epilepsy fundamentally involves a struggle with “control,” commonly framed in terms of reducing the frequency and severity of seizures. This paper seeks to understand how people with epilepsy (PWE) think about and define control, as well as the psychosocial outcomes of self-managing epilepsy and low perceived control.

Here, we employ a qualitative analysis of interviews with 64 adults with epilepsy in treatment in a tertiary referral center in New York City, conducted between July 2020 and July 2022 as part of a larger study of the lived experiences of PWE. The interviews were coded, and thematic analysis was used to identify participants' constructions of control and the breadth of illness intrusiveness they experienced.

Findings indicate that applying the illness intrusiveness concept to epilepsy aligns with existing research, revealing that PWE are impacted in numerous ways beyond seizure frequency and severity. Participants reported significant anxiety related to the unpredictability of seizures and the potential embarrassment of having seizures in public. These insights highlight that illness self-management and social challenges are critical components of the experience of having epilepsy.

Our findings underscore the need for a wholistic approach to improving quality of life for PWE that recognizes the broader context of illness intrusion. By understanding and enhancing perceived control, future interventions can better support the mental health and overall well-being of PWE.

1. INTRODUCTION

Uncertainty and lack of control are critically important aspects of the experience of having epilepsy. While medication and other measures can manage seizure frequency and severity, full seizure freedom remains a challenge for many. In the United States, only about 44% of people with epilepsy (PWE) who take anti-seizure medications (ASMs) attain full seizure freedom [1]. People with uncontrolled epilepsy often express significant anxiety due to unpredictable seizures and triggers [2]. This persistent dread, or anticipatory anxiety of seizures (AAS), is a predictor of anxiety and mood disorders [3-5]. AAS can lead PWE to restrict activities, avoid leaving home, or fear being alone [6,7]. However, AAS is not solely caused by uncontrolled seizures (Tian et al., 2018) -- even PWE who have remained seizure-free for extended periods can experience high levels of AAS and ongoing distress [3]. Clearly, to PWE, feeling in control is much more complex than seizure elimination.

The concept of illness intrusiveness is defined by [8], as “illness-induced disruptions to lifestyles, activities, and interests that can compromise psychosocial well-being and contribute to emotional distress in chronic disease.” Illness intrusions are categorized into physical, psychological, and social domains [9]. Many PWE endure disruptions such as pain, fatigue, financial strain, and inability to engage in leisure activities or maintain employment. These challenges, coupled with stigma and loss of independence, can erode one's autonomy and perceived control [8]. Traditional epilepsy care mainly focuses on the physical domain, leaving psychological and social issues unaddressed. This may explain why some PWE feel out of control despite near or total seizure freedom.

A study using the Multidimensional Health Locus of Control scale found that PWE scored lower on the Internal subscale than on the Powerful Others or Chance subscales, indicating a belief that chance and powerful people (e.g., doctors and nurses) control their health more than they do [10]. External locus of control is strongly correlated with anxiety and mood disorders [11], and serves as a mediator of the effects of physical impairments on mental well-being [12,13].

In this report, we explore how PWE perceive the psychological, social, and physical costs associated with self-managing epilepsy and feeling out of control. Additionally, we investigate how PWE perceive control and identify the obstacles they face in its pursuit. We highlight the importance of understanding the full experience of having epilepsy beyond symptom management, considering all aspects of illness intrusion [14]. Improved understanding of these relationships can enhance care and better the psychosocial outcomes for PWE.

2. METHODS

2.1. Study design and recruitment

This study’s sample was drawn from participants of the Epilepsy and Genetics Lived Experience (EAGLE) study at Columbia University. The EAGLE study used a self-administered survey to assess patients’ experiences of living with epilepsy and perceptions of its causes, focusing on the psychosocial impacts of genetic causal attribution [15-17].

Patients were eligible for EAGLE if they were aged 18-79 years, had epilepsy (ICD10 code G40.x), were able to complete a self-administered survey in English or Spanish (i.e., no evidence in the medical record of moderate to severe intellectual disability, dementia, or frequent instances of psychosis), and did not have an acquired (nongenetic) cause [18] of their epilepsy (e.g., stroke, severe traumatic brain injury). Patients with an acquired cause of their epilepsy [18] were excluded both because EAGLE’s primary focus was the psychosocial impact of genetic causal attributions, and to align with the inclusion criteria of an exome sequencing (ES) study at our medical center whose goal was to identify genomic variants causally related to epilepsy.

Eligible patients were invited to participate only after receiving approval from their providers; this was obtained for 97% of requests. Those approved for contact were sent a letter from the provider that introduced the study and its objectives. Subsequent recruitment efforts involved telephone calls, text messages, mailed letters, and emails from our study team, all including the study logo and name.

The survey addressed participants' perceptions of epilepsy causes, views on the relationship between epilepsy and genetics, perspectives on genetic research, and the impact of epilepsy on quality of life (QOL). Demographic data, including age, gender, and race, were also collected. Upon completing the survey, participants were invited to take part in an interview to provide further information about their experiences living with epilepsy. Those who completed the interview received a $100 gift card as compensation for their time. The study was approved by the Columbia University Irving Medical Center Institutional Review Board.

2.2. Selection of participants for interview.

We originally planned to include four groups of patients for interview, based on their participation and results in the ES program at our medical center: those found to have (1) epilepsy-related pathogenic variants, (2) secondary findings (i.e., pathogenic variants in genes unrelated to epilepsy and included on the list of genes recommended for return of results by the American College of Medical Genetics and Genomics (ACMG), (3) no pathogenic findings, and (4) those who had declined to participate in the ES program. Due to a smaller-than-expected pool of participants fitting into these categories, we created a fifth interview group comprising participants who did not have ES and did not recall being offered it. We purposefully selected individuals for the last group to ensure representation of men and women, various education levels, and different ethnic backgrounds. Additionally, given our study’s focus on the impact of genetic causal attribution, we used survey data to identify participants who strongly believed their epilepsy had a genetic cause and deliberately oversampled from this group. Semi-structured interviews were conducted with all selected participants.

The initial interview guide was designed to address issues that we anticipated would be relevant to our research aims. As data collection progressed, we revised the guide to incorporate questions addressing important issues emerging from the data. The interviews covered a wide range of topics, including participants’ beliefs about the cause(s) of their epilepsy; how they believed their epilepsy impacted their QOL; the extent to which they felt their epilepsy affected their overall health or sense of well-being; how open they were about disclosing their illness to others; and whether they felt their epilepsy had influenced any important life decision. We also included questions about control that were the focus of this report, including how they thought about the control over their epilepsy, their efforts to exert control, and the impact of not having control over their QOL. See Table 1 for a list of these questions.

Table 1 -.

Qualitative interview questions related to control

Main Questions	Probes
What does having “control” over epilepsy mean to you?	What would you have to be able to do, or what would have to happen, in relation to your epilepsy to feel you had some control over it? What happens when you notice changes in control of your epilepsy?
How do you know when you have more control of your epilepsy?	Is there anything that happens, or anything you do, that leads you to feel like you have more control of your epilepsy?
How do you know when you have less control of your epilepsy?	Is there anything that happens, or anything you do, that leads you to feel like you have less control of your epilepsy?
What would have to change for you to feel you have more control over your epilepsy?	Other than reduced seizures, are there things that could change to lead you to feel you have more control?
How is control of your epilepsy related to your mood or quality of life?
How is control of your epilepsy related to the other things that are happening in your life?
What else would affect how much control you feel you have over your epilepsy [apart from your treatment]?
Does having epilepsy have any effect on how you think about your overall health or well-being?	Does having epilepsy in any way affect the decisions you make or actions you take to try and stay healthy? What aspects of your life, if any, do you think have been the most influenced by you having epilepsy?
What impact, if any, would you say having epilepsy has had on your quality of life?	Do you anticipate epilepsy will affect your quality of life in the future? In what ways?
Have there ever been any important life decisions you have made that you felt were influenced by your epilepsy?	(IF YES) Can you please tell me more about those decisions and how your epilepsy influenced them? (IF NO) Are there any important life decisions you may make in the future that you think might be influenced by your epilepsy?
Has epilepsy in any way influenced your plans to have children?	(IF YES) In what ways? Can you tell me more about that?
Has anyone who knew you had epilepsy ever said or done anything that made you think they felt differently toward you because you had epilepsy?	(IF YES) What did they say or do that made you think that?
Have you ever felt embarrassed, awkward or ashamed because of your epilepsy?	(IF YES) Can you tell me about when that happened last?

2.3. Interviewing approach

Interviews were conducted by three members of the research team who were trained in interviewing by KS, a qualitative research expert. Emphasis was placed on maintaining neutrality and allowing participants to express their thoughts and feelings in their own terms. Probes and queries were crafted to be as concise, non-directive, and neutral as possible. Before starting data collection, each interviewer conducted three simulated interviews, which were then reviewed by KS to ensure both quality and consistency. Feedback was provided after each interview. All interviews conducted in English were recorded and transcribed by a professional service. For the single Spanish interview, a bilingual member of the research team transcribed and translated the recording, which was then back-translated by another bilingual researcher to ensure linguistic integrity. All participants (including those who identified as Latinx and opted to be interviewed in English) were fluent in the language of the interview and were able to express themselves freely.

2.4. Data analysis

Thematic analysis was conducted to identify and elucidate key themes derived from the interviews. Dedoose Version 9 (2021) was used for coding. As a first step in the data analysis, a member of the coding team reviewed all interviews, discerning concepts and themes aligned with the study's objectives. Subsequently, the coding team collaborated to develop an initial set of codes and corresponding definitions designed to capture these relevant concepts and themes. Utilizing these codes, three researchers each independently coded three randomly selected interviews. Following this, the coders met to discuss and reconcile agreements and discrepancies in code applications. During this phase, code definitions were refined as needed, and where useful to the analysis, subcodes were developed.

Once consensus on the revised codebook was achieved, two coders independently applied the codes and subcodes to a shared set of five interviews. Discrepancies in coding were again reconciled through discussions between the coders, and code definitions were refined when necessary. Any items that could not be reconciled were resolved by KS. The research team then made final amendments to the codebook.

One of the two coders then systematically coded the remaining interviews. Periodically, the second researcher coded a randomly selected interview to assess inter-rater reliability, which was assessed to exceed 80%. Throughout this process, the research team met to discuss emerging themes related to the primary foci of this report (see above), ensuring that the analysis achieved depth and alignment with the overarching study aims.

3. RESULTS

3.1. Participant Overview

A total of 64 semi-structured interviews were conducted over the phone between July 2020 and July 2022, each lasting 60-90 minutes (63 English, 1 Spanish). The subgroups included: ES participants with epilepsy-related genomic findings (n=3, 4.7%), ES participants with no pathogenic findings (n=24, 37.5%), participants who declined ES (n=5, 7.8%), and ES participants who did not recall being offered ES (n=32, 50%). We contacted 105 participants and completed 64 interviews before reaching saturation and ending recruitment, for a total participation rate of 61%.

Participants ranged in age from 21 to 71 years, with a median of 35. Sixty-seven percent were women. Among the 64 participants, 46 (71.8%) identified as White, non-Latinx, 1 (1.6%) as Black, non-Latinx, 13 (20.3%) as Latinx, two (3.1%) as Asian, and two (3.1%) as other/multiple. 11 (17.2%) participants obtained a high school diploma or GED, eight (12.5%) an associate’s or technical degree, 22 (34.4%) a bachelor’s degree, and 22 (34.4%) a graduate degree. See Table 2 for participant characteristics.

Table 2:

Demographic characteristics of interviewed sample (N=64)^*

Age: mean (SD), range)	39.6 (12.8), 23-71
Gender	N	%
Women	43	67.2
Men	21	32.8
Race/Ethnicity
White non-Latinx	46	71.9
Black non-Latinx	1	1.6
Latinx	13	20.3
Other or Unknown	4	6.3
Education
High school graduate or less	3	4.8
Some college	16	25.4
College graduate	23	36.5
Graduate school	21	33.3
Income
<$40,000	16	25.8
$40,000-$79,999	9	14.5
$80,000-$99,000	9	14.5
≥$100,000	28	45.2
Marital status
Married or living with partner	28	44.4
Separated or divorced	9	14.3
Never married or lived with partner	26	41.3
Religion
Catholic	11	17.7
Protestant	6	9.7
Other Christian	4	6.5
Jewish	9	14.5
Muslim	1	1.6
Buddhist	1	1.6
Hindu	1	1.6
Agnostic or atheist	9	14.5
Spiritual but not religious	8	12.9
Other, none, or prefer not to say	12	19.4

^*Ns vary slightly for different variables because of missing data.

3.2. Conceptualization of control

3.2.1. Reducing seizure frequency

We explored participants' perspectives on achieving control over their epilepsy. Responses highlighted the importance of seizure frequency in shaping their sense of control. Numerous participants emphasized that experiencing infrequent or a complete absence of seizures was central to being able to feel in control, with some even considering it the sole determinant.

“Being seizure-free is a huge thing … right now I feel like I have control over my epilepsy, even though I'm still really tired and I still have no sex drive. I still don't have like, the social life and that kind of stuff …You have to take good with bad. I'm not having seizures. I feel happy.”

(Woman, 52, 3 years since last seizure)

3.2.2. Anticipating and preparing in case of a seizure

Some participants achieved a sense of control over their epilepsy, even without complete seizure freedom, by learning to anticipate and prepare for seizures. This proactive approach involved understanding the frequency, severity, and triggers of their seizures, enabling them to make informed decisions and take actions to mitigate seizure-related risks. For these participants, control meant minimizing the impact of seizures on their QOL and safety. This was achieved through a comprehensive understanding of their condition, including recognizing patterns in energy levels, mood shifts, and other prodromal symptoms.

"I have a good understanding of the frequency [of my seizures] … part of what I perceive as control over the illness is just an understanding of what to expect, what the cycles are, what my energy level will be, how my mood will shift, that kind of thing."

(Man, 57, <6 months since last seizure)

Participants highlighted the importance of recognizing auras and other prodromal symptoms as early indicators of impending seizures. By attuning to these signs, they could take proactive measures to remove themselves from hazardous situations, thereby reducing the risk of seizure-related harm.

"Control means … being able to notice and address any potential seizure activity as it first happens before it turns into a seizure … Having the time to get myself out of dangerous situations."

(Woman, 43, 3 years since last seizure)

Some participants attributed their seizure control to their cautious approach and heightened vigilance about possible signs of an imminent seizure. By avoiding situations that they knew might trigger a seizure and promptly responding to warning signs, they were able to minimize their exposure to triggers and reduce the likelihood of experiencing seizures.

"I just don't put myself in dangerous situations and if I land into one, I'm usually able to get myself out of it pretty quickly or able to get someone to help me out of it … Having that ability to pay attention and to notice what's going on in me, that's a massive component of the control."

(Woman, 43, 3 years since last seizure)

3.2.3. Maintaining autonomy with epilepsy

In contrast to the perception of control focused on seizure management, some participants conceptualized control over epilepsy from a psychological standpoint. They saw control as not letting their disease restrict or dictate their lives. For these individuals, true control meant that their epilepsy was not a daily worry and did not dominate their thoughts or dictate their daily routines.

“[Control means] I'm able to live a functional everyday life and be able to work and do what I need to do. And it's basically something that I don't think about … That I'm just able to be functional and just not have thoughts about it … At this point now, [taking my medication is] like second nature.”

(Woman, 27, 6 years since last seizure)

Others viewed control as a dichotomy between either controlling their epilepsy or being controlled by it. Despite the condition's impact on their lives, they asserted control by minimizing its disruption to their day-to-day activities as much as possible.

“[Control over epilepsy means] not letting it affect your daily life. Not letting it have control over you … It's obviously going to affect your daily life regardless, but I do what I would normally do, epilepsy or not … That's having control over it in my book … I still go out; I still have fun with my friends.”

(Man, 27, 1 year since last seizure)

3.3. Elusiveness of a sense of control

3.3.1. Beliefs regarding the limits of self-control

The elusiveness of control over epilepsy was a prominent theme in the interviews. Despite diligent efforts to manage their environment, triggers, behaviors, and medical treatment, many acknowledged the impossibility of managing all factors influencing their epilepsy symptoms. This realization led some participants to accept their lack of control, while others were frustrated by the inability to shape their lives as desired.

One participant with photosensitive epilepsy shared the challenges of managing her seizures, easily triggered by specific stimuli such as black and white stripes, flashing lights, and electronic screens. She exerted control over her environment by avoiding PCs, smartphones, and flashing lights. Despite her proactive measures, regulating others’ behavior remained impossible, as exemplified by her unheeded requests for close contacts to avoid wearing black and white stripes in her presence. For her, control was unattainable due to numerous environmental factors beyond her control.

“[Control] means [that] I have to control my environment … I have to control people around me by telling them what they can and can't wear … People I know say, ‘Oh, well I won't wear [black and white stripes] then,’ but a lot of times I have to keep reminding them [not to] … and sometimes they don't really take it seriously … It's like they think I'm lying to them.”

(Woman, 69, <1 year since last seizure)

Similarly, another participant recognized her lack of control over her environment and the perpetual presence of her “seizure demon.” Despite her cautious measures, she acknowledged that the frequency of her seizures is not entirely within her control.

“For me, part of control is the recognition that I can only control so much … I have to accept the fact that I can't control everything … But safety or assurance, just give what I call the seizure demon some credit for the fact that it can take over … if it wants to. And that's just the partnership that we have, the contract we have together.”

(Woman, 44, 1 year since last seizure)

While an extended period of freedom from seizures gave most participants a significant sense of control over their epilepsy, many who remained seizure-free for years still felt a persistent sense of precarity and uncertainty. Despite the absence of recent seizures, they acknowledged the role of chance in their epilepsy experience, making a sense of complete control all but impossible.

“I feel like in my case, I have no control over my epilepsy… as long as I'm on top of my medication, then I can ‘technically’ say I have control over it. But in my case, I feel like I have zero control over it.”

(Woman, 34, 2 years since last seizure)

Despite being seizure-free for over five years, another participant expressed a profound sense of lacking control over her epilepsy. While she took every precaution to avoid a seizure, she emphasized the role of luck in remaining seizure-free. She contrasted epilepsy self-management with diabetes self-management, where continuous blood sugar monitoring could provide a sense of control. For her, the absence of a comparable monitoring mechanism for epilepsy highlighted its unpredictability and uncontrollability.

“[Having control is] getting in the car with my kids and knowing I'm not going to have a seizure while I'm driving and possibly kill one of us … Can I check my [ASM] level at home every day like a diabetic? Would that make me feel better? Maybe. Is that possible? No … I haven't had one in many years, but that doesn't mean that I won't have one today or tomorrow. I've just been lucky.”

(Woman, 33, >5 years since last seizure)

3.3.2. Anxiety about possible seizure occurrences

Participants articulated the burdens associated with a perceived loss or absence of control over their epilepsy. For some, persistent anxiety about having a seizure permeated their daily lives, regardless of actual seizure occurrences, causing feelings of vulnerability and fear. This fear often centered on the uncertainty of when another seizure might occur, as well as its consequences.

One participant who had been seizure-free for over a year became distressed if her bloodwork showed subtherapeutic medication levels, even without symptoms.

“When I have my Dilantin level checked and I know the level is … therapeutic, I feel some relief … If I know that the level is low, I feel … a little less in control. I can't think of anything else.”

(Woman, 33, 1 year since last seizure)

Contending with the ever-present uncertainty surrounding potential seizures can be emotionally draining, affecting some participants’ ability to experience happiness and serenity.

“I think it can be hard to be happy and relaxed when you're worried about having a seizure and dying. So, I think [control is] really mostly like, not fearing for your well-being.”

(Woman, 27, 3 years since last seizure)

Another participant recounted significant impairments in his QOL due to intractable seizures in his youth. Despite achieving seizure freedom through brain surgery as an adult, he continued to experience heightened anxiety due to past traumatic experiences. It took many years for both him and his wife to let their guard down and feel reasonably confident that a seizure was unlikely to occur, gradually regaining a sense of control.

“I do feel like I have control over it now because a seizure hasn't happened in four years. [After my surgery,] it took quite a while for us to be able to just fall asleep without being terrified … My wife said something like, ‘It doesn't matter how long we go without a seizure. I'm never going to be able to stop thinking about, What if this happens? What if this happens?’"

(Man, 34, 4 years since last seizure)

3.3.3. Concerns about harm to self and others during a seizure

For some PWE, feeling out of control was not just about the fear of experiencing a seizure, but rather the fear of having a seizure in a setting or circumstance that could endanger themselves or others, both physically and emotionally. For those plagued by intense fears of having a seizure in public and the potential risks involved, overwhelming anxiety may occur.

“I have a hard time telling the difference between ‘Do I really feel a seizure is coming on, or am I just anxious?’ … There was a time that I was going through a very anxious time, a very stressful time … I was afraid to get on the subway. I would walk in the snow-freezing cold for blocks because I was so afraid to get on a subway. I thought ‘I'd rather be out in the air and breathe.’”

(Woman, 50, 5 years since last seizure)

Additionally, some participants who were parents of young children expressed unique concerns linked to their roles as caregivers, fearing the harm they could inadvertently cause to their young children during a seizure due to their physical strength and loss of bodily control.

“It is scary to me because I take care of my daughter during the day, and she's just a 16-month-old, 17-month-old little girl. And when I have the seizures … I convulse without any control … I ripped my comforter in half without a second thought to it … I'm scared because I don't want my daughter to be around me. I don't want to hurt her, but at the same time I do have to watch her.”

(Man, 27, <1 year since last seizure)

Some participants without children added that, had they decided to have children, their epilepsy would have affected almost every aspect of their ability to parent.

“The practical side [of motherhood], that worried me. Not being able to drive to doctor's appointments and being afraid that I'd have a seizure while I was … holding them in my arms … The thought of it is very frightening.”

(Woman, 44, <1 week since last seizure)

3.4. Costs of Not Feeling in Control

3.4.1. Location and transportation barriers

Epilepsy significantly influences the lives of those affected, potentially shaping life-altering decisions. Participants disclosed decisions they made that they might not have considered had they not had epilepsy. Having to prioritize safety over personal desires frequently evoked frustration, sadness, or a sense of stagnation.

Transportation is a central concern for PWE. In the United States, driving restrictions for individuals who experience seizures vary by state. Typically, anyone who suffers a seizure that affects their consciousness is restricted from driving for 3 to 12 months, or until they receive medical authorization [19], meaning that many of our participants were legally unable to drive.

Many participants who resided within the New York City metropolitan area appreciated its extensive public transportation system, with some even relocating to the city to feel greater independence. However, others felt trapped and excessively reliant on public transportation.

“That was a big reason that I'd left New Jersey to move here; it was so that I could live somewhere where I could get around by myself without having to have a car.”

(Woman, 44, <1 week since last seizure)

Despite being dissatisfied with their place of residence, some participants felt unable to relocate due to their reliance on public transportation, which restricted their mobility and compromised their independence.

“Now, when we think about moving, we have to think about where I can move to, where I would actually have transportation to be able to get me from point A to point B… I wanted to switch jobs [to other cities] in the last two years or so two, three years. And I have been unable to because of not being able to drive.”

(Woman, 52, <1 year since last seizure)

Conversely, individuals who resided in more suburban or rural areas expressed feeling overly reliant on others to get around, usually friends, family, or partners. One participant described the challenge of obtaining her monthly medication while temporarily living in a very rural area, as opposed to her usual urban setting.

“I moved in with my parents during the COVID situation…[driving] was definitely an issue … I have to go down to the [doctor’s] office…and have [one of my medications] administered by a nurse because it's a shot…And every time I'd have this shot, my parents had to drive me to Manhattan. It's an hour and a half trip just for a five-minute appointment…They had to drive me to a lot of places due to my epilepsy…I didn't like that, even though they were kind and willing to help.”

(Woman, 32, 2 years since last seizure)

For some participants, lack of transportation severely limited their ability to leave home, especially in rural areas, impacting their relationships with their loved ones. One participant illustrated this by sharing her difficulties visiting her father:

“The people that I used to see frequently … I'm not able to any longer because I don't drive. And I live [out in the country]. It's hard, my father's elderly and I'm not able to see him like I [used to]. I can only see him like once every few months now… out of all of my family, I have one family member that is willing to drive up, to bring me down to see my father.”

(Woman, 52, 3 years since last seizure)

3.4.2. Education and career decisions

Epilepsy had a significant impact on some participants' career and education choices. Despite legal protections like the Americans with Disabilities Act in the United States, which mandates reasonable accommodations and forbids “discriminating against qualified individual[s] on the basis of disability” [20], many participants reported instances where this law was not enforced. Discriminatory practices, both overt and subtle, were commonly observed in the workplace, contributing to a sense of insecurity and fear.

“Certain employers, if you check that disability box [on your job application form], they'll never say it out loud, but they will not hire you … They're not going to say, "We can't hire you because you're epileptic."… There’s also something called ‘constructive dismissal’ that’s where they make your job so impossible that they fire you on the basis of something illegal … [or] they don't fire you, but they make your job so impossible that you have no choice but to quit … Constructivism has definitely happened to me, and that was a result of my epilepsy.”

(Man, 35, <1 week since last seizure)

The fear of employment termination and lack of workplace accommodations were common concerns among our sample. Some participants, particularly those with frequent seizures, felt forced to remain in unsatisfactory jobs due to fears of discrimination in a new workplace. These fears included: not receiving necessary accommodations, experiencing a hostile work environment, or being fired because of their epilepsy. Job security and benefits offered by their current employer, such as health insurance, often outweighed their dissatisfaction with their position.

“I'm not too crazy about the place that I work in, but I've [stayed] there because I’ve been so sick. I'm scared to leave because if I go somewhere [else], I can easily get fired or lose that job. I've had this job that I'm at now for almost 10 years. They've witnessed certain seizures happening at work, they can't let me go. [My career] is on pause … I feel like it's not safe to move on … If I lose my job, I have nothing.”

(Woman, 41, 1 year since last seizure)

Similarly, epilepsy influenced educational decisions, often leading individuals to prioritize safety over preference when choosing schools. This sometimes resulted in regret, as illustrated by one participant who decided to finish her graduate degree closer to her family to maintain her safety network, despite her beliefs that the program’s quality was inferior to the institution she left.

“I made a choice to finish off my master’s [degree] closer to home … it was the safest option … I was miserable … Compared to the excellent program I went to in [another state] … I mean, I would just drive to class every night wanting to cry … I could have walked out with my master’s in autism and severe disabilities [at previous university]. But I didn't.”

(Woman, 26, 5 years since last seizure)

Many participants found themselves needing to alter or postpone their career plans or educational pursuits to manage their epilepsy. Frequent seizures often resulted in recurrent work absences, brain fog, and reduced productivity and energy levels. One participant had had a particularly difficult time finding effective epilepsy medication during her high school years. The substantial time and effort she required to address her health needs left her unable to thrive academically or cultivate many meaningful peer relationships.

“I missed a lot of classes. I didn't … build as many friendships as I would have liked to. I was also very depressed, very angry for a long time … It affected my studies quite a lot because I had to take a lot of time off school.”

(Woman, 25, <1 week since last seizure)

For many participants, accommodating the demands of their epilepsy significantly altered their career trajectories. Factors such as long or irregular work hours, physical and cognitive demands of the job, competitive environments, and an absence of workplace accommodations often forced them to modify or abandon their career plans.

“I had so much creativity [before my seizures worsened] … I would use that creativity and just go to so many different places in graphic design and drawing. And I just kind of lost the motivation for that. It just takes too much out of me … I'm looking at going back and getting my master's [degree], but whenever I'm just doing any type of test or writing a paper, I get easily frustrated and I don't want to continue … I feel like that was robbed from me.”

(Man, 29, <1 year since last seizure)

3.4.3. Reproductive decisions

For many PWE, reproductive decisions are deeply influenced by the potential impact of epilepsy on their offspring. Concerns include anxiety about the genetic inheritance of epilepsy, worries about birth defects from ASM use, and the risks and possible consequences of having a seizure during pregnancy [16]. Consequently, advice from medical professionals can greatly influence reproductive choices. One participant described the extensive measures she took to ensure a safe pregnancy. She worried about the effects of epilepsy on a potential pregnancy and sought out the opinion of various medical professionals to ensure that both she and her potential child would be safe. Her collaboration with them enabled her to make an informed decision about reproduction.

“[I delayed] having a baby… because I was so afraid of what would happen if I was pregnant and had a seizure … That was the biggest life decision I've ever made, because of [my] epilepsy … I had to sit with a geneticist, a genetic counselor, and a high-risk OB-GYN … to kind of plan out my process.”

(Woman, 34, 3 years since last seizure)

Navigating the decision to have children can be particularly challenging for individuals who struggle to manage their epilepsy. Our participants highlighted factors such as experiencing frequent seizures, the overwhelming responsibility of managing both their own and a potential child’s health, and epilepsy-related financial costs as significant influences in their reproductive decisions. One participant and her husband decided against having children, partly because her epilepsy significantly affected her health during her reproductive years.

“I can't say for sure that we would have had [children] regardless, but my epilepsy was at its worst … when I was in my mid-twenties and then hit its peak in my mid-thirties … [My husband] felt like taking care of me was more important than taking care of somebody who didn't exist yet … The thoughts of sleepless nights and what that would do to my epilepsy, and therefore what kinds of risks that would put a child at in early development, that worried me. The idea of passing this terrible thing onto a new life honestly didn't bother me so much.”

(Woman, 44, 2 years since last seizure)

Another participant recalled a distressing intake session with a psychiatrist, who bluntly told her that she should never have children due to the risk of having a seizure while holding her child. Despite her preexisting decision against having children, the psychiatrist’s dismissal of her reproductive autonomy left her feeling hurt. The psychiatrist’s lack of sensitivity and expertise in neurology did not diminish the participant’s internalization of the idea that it would be irresponsible of her to decide to have children.

“[The psychiatrist] said, "Don't have a baby … What if you're holding it and you have a seizure? You can't have a child." … I thought, ‘Thank God I don't really want kids.’ It shocked me, kind of saddened me … I thought to myself, ‘What if I really had a desire to have a child and this lady is like, ‘Oh no, you can't do that.’ I thought, ‘Oh, well that was harsh, but … okay.” So anyway, that's the only time there was ever a discussion of any way between having a child and having epilepsy. And then I guess in her opinion, I should not.”

(Woman, 50, 5 years since last seizure)

3.5. Costs of striving to feel in control

Achieving a lifestyle where epilepsy management would only require minimal effort seemed unattainable for many. Participants reported various strategies to self-manage their epilepsy, including maintaining a consistent sleep schedule, abstaining from alcohol, adhering to medication schedules, consuming a healthy diet, and managing stress. While these practices may reduce seizure occurrences and severity, they often impose significant psychological, lifestyle, and social burdens.

3.5.1. Psychological tolls of controlling epilepsy

Most participants emphasized medication adherence as the most critical aspect of their epilepsy management, sometimes the sole one. This often led to adopting stringent measures to ensure consistency. One participant reflected on her early years of having epilepsy, noting her initial rigid approach to medication adherence. Over time, she gradually developed trust in her neurologist's guidance, allowing her to adopt a more flexible approach to her medication.

“I try to be a little conservative, … I, especially when I was in the hospital … I wouldn't let the nurse give it to me two minutes early. I needed it at nine on the dot. Even if it was a directive from somebody with a medical degree, I would not swallow that pill until nine o'clock.”

(Woman, 27, 4 years since last seizure)

Another participant emphasized the importance of maintaining a schedule that ensured an adequate number of hours of sleep to mitigate seizure risk. He believed deviating from this schedule could jeopardize his safety, and meticulously planned to avoid sleep disruptions.

“I can't afford to have poor sleep hygiene because then that puts me at risk of having a seizure. For most people, if they get three hours of sleep one night … they can get up and go to work the next day … I don't have that luxury … I think about it as my well-being and I'm always trying to make sure my life is mapped out accordingly so I'm not putting myself in any adverse situations.”

(Man, 27, time since last seizure unknown)

For others, the pressure to adhere perfectly to multiple behaviors also took a significant psychological toll. The fear of even minor lapses in adherence loomed large, as they believed these could trigger significant consequences, such as tonic-clonic seizures.

“If I'm doing everything by the book, and avoiding all triggers, … I feel like I have more control, theoretically, I wouldn't have a breakthrough seizure on top of the therapy. If I make sure that I never have a drink, and I always get eight hours of sleep, and I'm a perfectly healthy human … I would feel like I have more control to the degree that I do everything perfectly to avoid all triggers and stay perfectly healthy.”

(Man, 41, 2 years since last seizure)

3.5.2. Social tolls of managing epilepsy

PWE often feel “othered" or “different,” not solely because of their epilepsy symptoms, but also the visible actions required to manage their condition. This sense of differentness can manifest in various interactions and settings, leading to frustration and a sense of injustice.

Many expressed frustration and anger at having to live more self-consciously and cautiously than others. They often felt resentful towards their healthy peers who could engage in activities without concern, while they abstained for fear of triggering a seizure.

“[Since my epilepsy began], I'm less tolerant, definitely, of some things. I just feel angry at my friends … they are perfectly healthy and doing stupid stuff, and I have this.”

(Woman, 59, 3 years since last seizure)

Others mentioned avoiding certain social settings that could be risky for their epilepsy, sometimes leading to feeling isolated or excluded.

“I'm not meeting as many people because I'm not out participating as much … I'm not out drinking. I don't even think I'm invited to as many things because … I'm just not able to go to bars and I'm not able to sit out on the porch with a beer. Now, I can sit on the porch, but [not] with a beer.”

(Woman, 60, 13 years since last seizure)

Navigating social scenes can be particularly challenging for young PWE. Pressure to conform to social norms, such as drinking on a date, often conflicted with the need to manage their condition.

“What do young people do? They want to go out. They want to have drinks … If you go out on a date, you feel pressured to keep up and have drinks, … you can't because if you do, well then, you're going to have a seizure and you won't be able to drive and you're going to lose all that freedom.”

(Man, 33, >5 years since last seizure)

The graphical abstract summarizes many of the themes related to epilepsy illness intrusion discussed by participants. Table 3 shows the frequencies with which each of these themes was discussed.

Table 3:

Prevalence of themes related to epilepsy illness intrusion

Themes	Number of times theme mentioned (across all interviews)	Number of participants who spoke about this theme (n=64)	Percent of participants
Reduced independence	83	45	70%
Social isolation	72	30	47%
Reduced academic/employment achievement	65	35	55%
Difficulty forming romantic relationships	21	14	22%
Difficulty making reproductive decisions	56	36	56%
Stigma	81	39	61%
Depression	44	23	36%
Anxiety	53	34	53%

4. DISCUSSION

This paper explores an often-overlooked dimension of perceived control in epilepsy: illness intrusiveness. Illness intrusiveness arises from the experience of having epilepsy, in which PWE must navigate not only the immediate effects of seizure severity and frequency, but also their impact on daily life. The possibility of seizure occurrence can increase social isolation through stigma, transportation difficulties, and hesitation to participate in activities that could become dangerous in case of a seizure. To ensure their safety, many PWE must make difficult decisions regarding their education, career, and reproduction.

To mitigate the effects of illness intrusiveness and increase their internal locus of control, PWE must learn effective seizure management strategies. However, while these can be effective in addressing the clinical aspects of epilepsy, they may also have the paradoxical effect of reducing quality of life. Although adherence to strict medication regimens can help control seizures, it can also limit social interactions such as those involving alcohol or late-night activities. The unpredictability of seizures may discourage patients from pursuing higher education, and while medication might mitigate seizures, side effects like brain fog could still hinder academic success. PWE might refrain from having children due to concerns about the impacts of seizures or ASMs on pregnancy or a developing fetus, or the increased risk of epilepsy in their offspring [16].

Both dimensions -- illness intrusiveness and seizure management -- have significant psychological and social consequences for PWE. While many participants in our study equated having control over their epilepsy with preparedness for seizures, they also described illness intrusions as factors that caused or exacerbated pre-existing mental health issues such as depression and anxiety. The sense of lack of control also enhanced AAS, a dimension of epilepsy-related anxiety sometimes occurring in the absence of typical anxiety disorders. Participants described the ways in which experiencing the clinical aspects of epilepsy could create a domino effect, where frequent seizures set off broader life impacts. Recognizing the multidimensional nature of living with epilepsy is essential for healthcare providers to understand patient challenges beyond seizure occurrence [21].

Previous research has highlighted the importance of enhancing patients' internal locus of control. This can be achieved by providing in-depth education to PWE and their family members on the PWE’s specific type of epilepsy, seizure warning signs, and appropriate emergency responses, including the development of a Seizure Action Plan [5,22]. Epilepsy self-management resources are also critical to provide tools needed to make informed and important decisions, enhancing PWE’s sense of control over their lives and their epilepsy [23]. It is important for PWE to have the space and opportunity to share their experiences with others and receive support. Both seeing mental health providers and attending peer-facilitated support groups have been shown to help PWE increase their internal locus of control [24].

We urge that practitioners consider both epilepsy intrusion and seizure management as critical dimensions of control for PWE. We recommend that providers gain insight into a patient’s level of epilepsy’s intrusiveness by asking two simple and open-ended questions: 1) “Do you and your family have a plan as to what to do in case of a seizure? If so, what is the plan?” and 2) “How does having epilepsy affect your quality of life more broadly? This could include not only the impact of seizures but also how you feel about having epilepsy and how you manage it.” Patients who report distress or fear should be referred to a mental health provider and/or patient support group. Preferably, the epilepsy provider should have a list of referral options readily available to improve patient follow-through.

This study has limitations that affect the findings’ transferability. The exclusive sampling from a private tertiary referral center in New York City meant that some findings were most relevant for this geographic area. Restricting participation to adults with nonacquired epilepsy may not capture the experiences of those with epilepsy caused by known factors. The sample was skewed toward women (67%), White non-Latinxs (72%), and college graduates (69%), further reducing transferability. Underrepresentation of individuals with fewer resources, who might experience a greater impact on their quality of life due to epilepsy, could lead to an incomplete understanding of the challenges faced by PWE. New studies should include more diverse populations and consider a wider range of epilepsy etiologies to better understand the full spectrum of experiences faced by PWE. In addition, our analysis did not extensively explore the relationship of illness intrusion to epilepsy type or severity, nor how the experience of dissociation (loss of control and agency) during a seizure may relate to the overall sense of control among PWE. Investigation of these topics in the future is crucial to provide insight into more personalized psychosocial epilepsy care.

Our study emphasizes the need for wholistic epilepsy care that goes beyond seizure management. Epilepsy care that neglects these critical dimensions is incomplete. Future research must continue to explore the intricacies of epilepsy intrusion and seizure management in order to deepen our understanding and ultimately improve outcomes for PWE.

HIGHLIGHTS:

• For people with epilepsy, feeling in control extends beyond seizure management.

• For many, “control” means living life without epilepsy-related disruptions.

• Epilepsy self-management can be physically, socially, and psychologically burdensome.