Teens With Epilepsy: Living with Stigma - The Unspoken Battle

Adolescence is a time of immense growth, both physically and emotionally. It is a stage of life where what peers think heavily affects how a teenager views themselves. Hence, teens with epilepsy not only have the challenge of figuring out who they are, but they must also overcome the stigma that is automatically assigned to them while establishing their identity. But where does stigma start? And how can parents and educators help teens understand a concept that even the most versed stigma researchers still find enigmatic?

Defining Stigma
Stigma is a word with a multitude of connotations and definitions. The concept of stigma first gained popularity in social science research through the work of Erving Goffman. Erving Goffman the author of the (1963) book, ⁽¹⁾ Stigma: Notes on the Management of Spoiled Identity defined stigma as an “attribute that is deeply discrediting and that reduces the bearer from a whole and unusual person to a tainted, discounted one.” Essentially in Goffman’s view, stigmas commonly result from a transformation of the body, blemish of the individual character, or membership in a despised group. He emphasizes the relationship between an attribute and a stereotype. Building upon this definition Bruce Link and fellow Columbia University colleague, Jo Phelan define stigma as⁽²⁾, “Stigma exists when a person is identified by a label that sets the person apart and links the person to undesirable stereotypes that result in unfair treatment and discrimination.”

In an effort to further Goffman’s definition of stigma, Link and Phelan propose that a stigma arises as a product of four social processes. First, people distinguish and label human differences. Secondly, dominant cultural beliefs link labeled persons to undesirable characteristics-to negative stereotypes. In the third social process, labeled persons are placed in distinct categories so as to accomplish some degree of separation of “us” from “them”. In the fourth, labeled persons experience status loss, and discrimination that lead to unequal outcomes. Link states, “We apply the term stigma when elements of labeling, stereotyping, separation, status loss and discrimination co-occur in a power situation that allows the components of stigma to unfold.”

Moreover, Link believes that all parts of stigma are matter of degrees such that “some characteristics are more penetrating in terms of stigma than others. For example heart disease versus schizophrenia. The amount of discrimination a person may experience with schizophrenia versus heart disease may vary greatly depending on the degree of undesirability.”

What Do Teens Really Think About Epilepsy?
Although few studies have been conducted to explore the experience of stigma in children and adolescents with epilepsy, it appears that these individuals do worry about the problem and that this worry can affect their emotional development. In a study of children with new-onset seizures and their parents, concerns about stigma were paramount. Children reported feeling different from their peers and fearful of being teased about having a seizure in front of their friends. ⁽³⁾ In one study of adolescents with epilepsy, even the belief that epilepsy was stigmatizing was associated with poor self-esteem ⁽⁴⁾.

In another study conducted by J.K. Austin et al., the researchers surveyed the knowledge and attitudes of a large number of adolescents in the general population about epilepsy by administering a 37-item questionnaire. Specifically, they wanted to measure teens’ familiarity, knowledge and perceptions of epilepsy.

Overall, few adolescents in the general population were familiar with epilepsy. Furthermore, respondents knew so little about epilepsy that most either did not know or were not sure about 7 of the 12 knowledge items in the questionnaire. Other findings showed that adolescents with epilepsy face an uncertain and possible hostile social environment. For example, because many respondents thought that epilepsy was contagious or a form of mental illness, adolescents with epilepsy might be socially isolated as a result of peer ignorance and confronted with coping with the emotional impact that social discrimination can create.⁽⁵⁾

Educating The Public
Perhaps the best weapon in combating stigma is education. “As with any illness, there is fear surrounding the unknown. There used to be a stigma attached to asthma, but through education the myths were dispelled. I think that is what we need to do with epilepsy”, said Austin. In addition to educating the public about epilepsy, Link asserts, “One of the most critical actions one can take to counteract stigma is personal contact with the stigmatized person. Contact, humanizes the condition so that the stigmatized person is seen as an individual not as an illness.” He also believes that “often people may avoid associating with a person with epilepsy because they are afraid the person may have a seizure and they won’t know what to do.” He suggests first-aid training as a tool in empowering people and therefore eliminating the fear factor associated with epilepsy.

1. Goffman E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice Hall
2. Link B., Phelan J. Conceptualizing Stigma. Annu. Rev Sociol. 1001; 27:363-85
3. Austin JK. Concerns and fears of children with seizures. Clin Nursing Pract. Epilepsy 1993;1:4-6
4. Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol 1992; 17:633-49
5. Austin J.K. et al., Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey of adolescents in the general population. Epilepsy & Behavior 2002; 3:368-375.