Epilepsy is a condition that is simultaneously known for a long period of time, yet still widely misunderstood and often stigmatized. It is a neurological disorder that causes abnormal brain activity, resulting in seizures, unusual behavior, and periods of lack of awareness of one’s actions. When poorly managed and left without proper care, it may present a serious danger to a patient’s life. Historically, epilepsy has often been a basis for superstitions and associated prejudices, with people in the past believing epileptics to be possessed by demons. In the modern world, however, the stigma associated with the condition takes on other forms. Yet it still persists, resulting in the alienation of people with epilepsy and, sometimes, worsening their condition.
The first part of this paper provides a medical perspective on the epilepsy, the overview of symptoms and existing treatment mechanisms, as well as the stigma associated with the condition. The first part focuses on the sociological analysis and critique of this information from the perspective of two studies. Namely, it examines the relationship that exists between epilepsy and the formation of an individual’s social identity. Finally, it discusses the social stigma around epilepsy and how it fits into the sociology of shame and blame.
The term epilepsy originated in ancient Greek and is derived from a word that can be translated as seize, or attack. Despite the long history of associated demonic superstitions, the modern medicine treats epilepsy as a physical disorder of the brain that can, potentially, be treated (Ali, 2018). The condition is a symptom complex with multiple risk factors and genetic undercurrent, which often complicates the diagnosis process. Seizures are, expectedly, the most well-known and visible symptom of epilepsy, and the eyewitness account of those is necessary for the diagnosis to be assigned (Thijs et al., 2019). Episodes of seizures vary in severity: in some cases, a patient may simply stare into space for a few minutes. Other cases, however, include twitching of legs or arms and other convulsions. In some extreme cases, the seizures might result in the episodes of unintentional autogestion, with an epileptic hurting themselves while twitching. When differences between seizures are systemic, the healthcare professionals take them into account to assign a sub-type of an epilepsy diagnosis.
The impact of the epilepsy condition on the patients’ lives is well-documented and multilayered, affecting various spheres. Qualitative studies with in-depth interviews of the participants revealed cognitive abilities decrease, self-esteem issues, driving difficulties, education barriers and social isolation as main impacts (Pembroke et al., 2017). Despite being a somewhat invisible condition, epilepsy has a large negative effect on a patient’s daily life, often resulting in hyper-vigilance and higher stress levels. Furthermore, research suggests it to be more impactful for the lives of adult patients, despite being primarily perceived as a diagnosis of children and elderly (Dewar et al., 2020). Thus, the most vulnerable demographic is simultaneously one of the least researched ones in terms of symptoms detection and the diagnosis process.
Treatments and Procedures
Current state of the epilepsy treatment largely focuses on the seizure suppression, which has proven to be effective for over 2/3 of patients. Yet, such medication only achieves a short-term benefit of dealing with symptoms, having little to no effect on the cause. Furthermore, it is often expensive and thus unavailable to the entire groups of epileptics (Ali, 2018). The aforementioned complexity of the diagnosis process and symptom identification also affect the efficiency of the epilepsy treatment, particularly in children (Webster, 2018). Nonetheless, latest advancements in medicine and brain research allow for more optimism in the discussions of epilepsy treatment.
Ancillary investigation, a relatively new medical procedure, are now used to classify the epilepsy cases and develop the prognosis. Brain screenings and other forms of applied neurological research are used to identify the structural causes behind the diagnosis and further develop the system. More and more patients opt for epilepsy surgery, and charities and grants have started paying attention to the accessibility of such treatments. Latest inventions in medical technology include seizure detection devices, useful both in a patient’s daily life and in hospital settings (Papoutsi et al., 2021). With an improved understanding of the gradual development of epilepsy, applied genetic analysis and measures to slow down medical inflation, the curability-oriented approach to epilepsy becomes feasible.
Despite society having moved on from the medieval ideas of demonic possession, research in health studies and social sciences alike demonstrates high levels of social stigma associated with the epilepsy. Due to the genetic nature of the condition, the affected groups experience reproductive pressure from people around them attempting to talk the patients out of having children (Webster, 2018). Some go so far as to argue that a dynamic in a family with multiple siblings, would become unbalanced simply from the addition of an epileptic child (Webster, 2017). The combination of epilepsy and childhood in the eyes of those partaking in discrimination is a volatile mix leading to an individual being unable to control themselves.
Hence it is only natural, that many epileptics struggle with becoming comfortable in their own skin way into adulthood. The resilience approach and self-management tactics are one of the most common tools in the fight for self-acceptance (Pembroke et al., 2017). Despite the patients in question being able to find their own path towards internal comfort, the societal stigma of epileptics needs to be addressed. Its impact on the patients is too serious to be ignored, as the research demonstrates the links between the prejudice, disclosure anxiety and depressive disorders (Pembroke et al., 2017). Stigma leads to the feelings of internal embarrassment, inferiority complex and hyper-monitoring of one’s own behavior. Many patients have reported their anxiety in social situations, the constant waiting for the next seizure, and the fear of being laughed at.
From a sociologically critical perspective, it is relatively simple to provide a basis for both the impact the epilepsy has on a patient’s life, and the reasoning behind the stigma. The first can be explained with the use of the research on the relationship between chronic conditions and social identity. Similarly, the framework used for the second topic’s analysis links the social stigma against epilepsy to the sociology of shame and blame.
Epilepsy and Social Identity
Living with a chronic condition has the capacity to fundamentally change not only one’s routine, but social identity and self-assessment matrix. Those who live with a chronic illness are faced with unique set of struggles, assumptions, and insecurities, that affect how they see the society around them and their place in it. Stephanie Kılınç, Carol Campbell. Alison Guy and Anna van Wersch have conducted a study examining the effect epilepsy had on social identity of the affected and on their relationship with their bodies.
Predictably enough, the question of control was a sensitive and a relevant one, with subjects indicating their treatment of seizure-prevention procedures as ways to regain control over their bodies. The volatility of their bodies and its’ unpredictability was identified as a source of great distress for the participants. Consecutively, many of them have deliberately tried to separate their sense of self from their bodies (Kılınç, 2018). The participants were aiming to separate their view of themselves as people from the condition, externalizing and conceptualizing it as something separate from who they truly are. Logistically, one might assume this to be a response to persistent othering the patients have experienced from other people in society. As the sense of trust in their bodies for the participants has been weak, they had to hyper-focus on other areas of identity to compensate for this weakness. Sociologically, this alienation set the participants apart from most of the other adults, for whom their physicality is one of the main ways to engage with the surrounding world.
Epilepsy, Shame and Blame
A critical, fact-based examination is required to achieve an understanding of the roots and patterns in the existing social stigma surrounding epilepsy. It is highly unlikely, that in this day and age any large group or population of people would perceive it as a sign of demonic possession. Yet, people with epilepsy experience great disclosure anxiety, understanding that the reveal of their condition might result in acts of aggression or discriminatory practices being implemented against them. The manifestations of the stigma range from deliberate attempts to trigger a seizure to unfair job sacking and limitation of available opportunities.
On the first glance, such stigma occurs across genders, races and socioeconomic backgrounds, and thus might be difficult to analyze trough most classical sociology theories. Yet, the sociological analysis of the stigma itself reveals the role it may play in the political debate and class struggle. As mentioned above and as with many other health conditions, the financially disadvantaged remain the most vulnerable to the condition, often being unable to afford the necessary diagnosis and treatment. The stigma against epilepsy is easy to weaponize in political debates on such topics as social welfare and finance allocation to medical research and healthcare provision (Scambler, 2019). Stigma brings shame with itself, and shame can be converted into blame trough the instruments of mass media and weaponized against the vulnerable groups. Chronically ill people are amongst these groups, as the constant push against the improvement of the social welfare packages has proven.
To further this argument, one can link the negative assumptions associated with the epilepsy and already mentioned above. Epileptics are perceived as unstable, unable to control themselves and sometimes even embarrassing or childish. When this stigma is converted into shaming, the patients with epilepsy might easily become scapegoats blamed for the waste of resources and accused in demanding special treatment. Additionally, the discrimination against chronically ill people might interjectionally overlap with other forms of oppression, singling out minority group patients as the easy targets for the dehumanizing debate.
Sociologically, the existing mechanisms of diagnosis and treatment require improvement on multiple layers. Firstly, the eyewitness account of seizures might not be possible for patients from vulnerable groups, particularly without proper living conditions. If the hospitals continue to demand it, then the institutions should be in charge of facilitating and providing the accounts. Otherwise, it creates barriers in diagnosis, further alienating the most vulnerable of the patients with epilepsy. Secondly, the financial barriers between the patients and the types of treatment other than seizure suppressing need to be addressed by the relevant social policies. For those who struggle with epilepsy, being able to reclaim control over their bodies would be priceless in terms of their daily life routine and the sense of identity. The latest medical advancements in the areas of brain screening and genetics should be implemented in the treatment procedures worldwide.
As many other chronic conditions, epilepsy is misunderstood, stigmatized and weaponized against the patients by the mass media and political agendas. The well-being of those who struggle with it is often secondary comparing to the rhetorical power it may grant in certain contexts. This approach is especially dehumanizing to the epileptics, who have been aiming to establish their humanity and inherent value outside of their unpredictable bodies. The existing stigma and the shame associated with it can only be dismantled when the treatment procedures account for the existing social barriers and are adjusted to compensate for these.
Chronically ill people form a consistently vulnerable demographic, often affected even by the slightest changes in policies. Social initiatives have power to slowly alter public’s perception of an issue, by normalizing open conversations around these issues. It is essential to keep emphasizing that epilepsy is neither a dirty word, nor a condition that turns the patient into a danger to society. The most relevant research on the topic must be made available in more accessible formats by relevant organizations and with the compensated help of epileptic people themselves.
Ali, A., 2018. Global Health: Epilepsy. Seminars in Neurology, 38(02), pp.191-199.
Dewar, S., Heilemann, M., Engel, J., Lee, E. and Pieters, H., 2020. Perceptions of illness severity in adults with drug-resistant temporal lobe epilepsy. Epilepsy & Behavior, 109, p.107091.
Kılınç, S., Campbell, C., Guy, A. and van Wersch, A., 2018. Epilepsy, identity, and the experience of the body. Epilepsy & Behavior, 89, pp.42-47.
Papoutsi, C., Collins, C., Christopher, A., Shaw, S. and Greenhalgh, T., 2021. Interrogating the promise of technology in epilepsy care: systematic, hermeneutic review. Sociology of Health & Illness,.
Pembroke, S., Higgins, A., Pender, N. and Elliott, N., 2017. Becoming comfortable with “my” epilepsy: Strategies that patients use in the journey from diagnosis to acceptance and disclosure. Epilepsy & Behavior, 70, pp.217-223.
Scambler, G., 2019. Towards a Sociology of Shaming and Blaming. A Sociology of Shame and Blame, pp.87-103.
Thijs, R., Surges, R., O’Brien, T. and Sander, J., 2019. Epilepsy in adults. The Lancet, 393(10172), pp.689-701.
Webster, M., 2017. Siblings’ caring roles in families with a child with epilepsy. Sociology of Health & Illness, 40(1), pp.204-217.
Webster, M., 2018. The cycle of uncertainty: parents’ experiences of childhood epilepsy. Sociology of Health & Illness, 41(2), pp.205-218.