Prejudices and Stigmas in Epilepsy: Social and educational challenges; inclusion in schools and workplaces.
By Edwige Smague
Epilepsy, the word that shall not be named
When children and adults are victims of exclusion at school or workplaces, the resources put in place to prevent stigmatisation are often ineffective unless self-criticism is practised. When it comes to raising awareness, changing the way epilepsy is perceived is essential.
Myths and prejudice at school
Several historical untruths are associated with epilepsy. Today, the condition is the subject of scientific studies, and an objective answer can be given to almost any question. Contrary to popular belief, epilepsy cannot be identified by specific characteristics. Outside of seizure periods, and although individual differences are possible, most children with epilepsy are indistinguishable from children their age.
There are more than 80 early signs of epilepsy and not all symptomatic reactions are the same, depending on which part of the brain is affected at the time of the seizures. The person may have convulsions or hallucinations, or jerky arm movements, repetitive eye blinking - all details that could also be related to behavioural disorders that make it difficult to distinguish from epilepsy.
Epilepsy is one of the rare diseases where misconceptions can be more harmful than the disease itself. Because of the nature of seizures - jerky movements, disorientation, hallucinations, etc. - epilepsy tends to capture people's imagination, leading to stigma and discrimination. Taboos, myths and prejudices contribute to the social exclusion of people with epilepsy. The disease mainly affects children and their social integration, notably at school. Despite what some might think, children with epilepsy do not always feel supported and protected at school; on the contrary, they are often the unintentional victims of discrimination and stigmatisation.
The positive attitude of the teaching staff is decisive and helps to promote the personal development of children with epilepsy. One of the main factors contributing to the exclusion of these students is undoubtedly a lack of knowledge about epilepsy. Negative reactions from peers are mainly due to fear and the vision of seizures, contributing to the propagation of myths (1). Therefore, they tend to isolate themselves, fear rejection, and prefer not participating in group activities. They also refuse to go to parties or have friends over, either for fear of having a seizure or becoming invisible. Occasionally, awkward curiosity is highlighted by children's questions that are unintentionally meant to hurt or make others feel different or uncomfortable. These behaviours are not harmless and have consequences for the whole family (2).
The workplace to not be
Yet again, the significant concerns relate to ignorance about epilepsy and the presumed impact of the condition on the workplace. This lack of understanding generates fear and anxiety in both employees with epilepsy and employers. Concerns about disclosure, accommodation, safety and liability are all part of the vicious cycle.
Negative and uninformed attitudes lead to (illegal) discrimination and sometimes to unnecessary restrictions on driving, for example. Employees with epilepsy may worry about the possible consequences of revealing their epilepsy and the under-utilisation of their capabilities. For their part, employers are concerned about productivity, absenteeism, performance, the reaction of clients or colleagues, the costs of adapting to the environment and safety at work.
Among the five main themes of discrimination identified are negative perceptions, blaming in the workplace, dependence on others, concealment of the illness, and avoidance through isolation. These behaviours are often exacerbated by a lack of understanding of epilepsy, both by others and by patients themselves.
Although discrimination may not be evident at first glance, rejection, shame, and co-dependency are all individual experiences that reflect the stigma attached to epilepsy (3).
Nevertheless, while communication is an essential strategy in the fight against discrimination, training and information remain the most effective approaches.
Effective measures to reduce stigma should be based on eliminating the factors that cause institutional stigma. It is only by tackling the impact factors that the stigmatisation of people living with epilepsy, whether at school or in the workplace, can be reduced or even eliminated.
Conclusions
Most Australian publications on anti-discrimination strategies are based on old data that reflect attitudes that are now considered unacceptable.
Although the Australian government has taken action by passing anti-discrimination legislation, the full-time employment rate for people with epilepsy is lower than expected. Other support strategies are needed to improve inclusion and reduce stigma (4).
References
1. Şengül Y, Kurudirek F. Perceived stigma and self-esteem for children with epilepsy. Epilepsy Research. 2022;186:107017.
2. Modi AC. The impact of a new pediatric epilepsy diagnosis on parents: Parenting stress and activity patterns. Epilepsy & Behavior. 2009;14(1):237-42.
3. Mayor R, Gunn S, Reuber M, Simpson J. Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence. Seizure. 2022;94:142-60.
4. Bellon M, Walker C, Peterson C, Cookson P. The "E" word: epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy Behav. 2013;27(1):251-6.
