Lifting the stigma: Study shows that disclosing epilepsy condition can improve the well-being of people with this disorder.

Lifting the stigma: Study shows that disclosing epilepsy condition can improve the well-being of people with this disorder.

Impact Brief by Aarti S. Ivanic, PhD 

Social stigma of epilepsy affects more than 60 million people worldwide 

Epilepsy is a common neurological disorder which is characterized by seizures that are unpredictable in frequency. As of 2014, 65 million individuals across the world had epilepsy, approximately 3 million of them in the United States1. It is the fourth most common neurological problem preceded only by migraine, stroke, and Alzhiemer’s disease. The estimated annual direct medical cost in the US is almost $10 billion.2 People with epilepsy (PWE) span demographic and socio-economic characteristics and are not restricted to a particular social group. Yet, these individuals are often hesitant to talk about their condition because they are afraid of the negative connotations, stereotypes and stigma associated with the disorder. The extent of the stigma has severe repercussions for PWE – they may choose not to seek medical help, which may lower their quality of life and productivity.  

By not disclosing their disorder to others, social stigma of epilepsy has a negative impact on the well-being of people with epilepsy 

To understand the reason and impact of not disclosing their neurological problem by PWE, we conducted this brief study. It asks two questions: 1. Why PWE choose to disclose (or not to disclose) their disorder to others and 2. What is the resulting impact on psychological well-being? 

Seventy-one percent of respondents indicate that they disclose their disorder with individuals (e.g., employer, supervisor, teachers, support group) in addition to immediate family, close friends, doctors and nurses. The main reasons for sharing were informative and focused on getting help in case something happened in the presence of others. The reasons for not sharing were emotional and focused on how having the disorder is personal and allude to or directly address the stigma associated with the disorder reasons for not sharing.  

why PWE disclose or not disclose

Disclosure leads to positive feelings whereby those who disclosed felt more at ease and open with others while those who did not disclose felt mixed emotions – while some felt more in control of their personal information and relieved at the possibility of avoiding judgement, others felt scared and sad.  

PWE disclosure feelings

To measure positive emotional well-being, respondents were asked on a five-point scale (1->5: Not at all -> extremely) to what extent does your epilepsy disorder make you feel each of these emotions? Available answers included: strong, proud, inspired, determined, attentive, empathetic, resilient, hopeful. The responses were summed up to create a composite measure of positive well-being. Results indicated that those who disclosed their disorder reported a significantly higher level of well-being relative to those who don’t disclose. Additionally, those individuals (51%) who indicated that they have social support for their disorder, reported higher feelings of positive well-being relative to those who do not have social support. 

PWE emotional well-being

Results from this study suggest that societal stigma towards people with epilepsy is still prevalent and impacts life and well-being of people with epilepsy. While a vast majority of individuals in our sample chose to disclose their epilepsy to others, they did so primarily for informative reasons and to ensure that they would receive help if needed. Such disclosure leads to positive well-being. Those individuals who chose not to disclose their epilepsy to others didn’t do so due to the fear of being judged or stigmatized. Further, only half of the individuals surveyed felt that they had social support for their epilepsy and those that did had higher positive well-being.  

Reducing social stigma is likely to have strong positive impact on millions of people with epilepsy and it should be a priority for policy makers 

This data suggests that reducing social stigma of epilepsy may have significant positive impact on PWE and the society. However, this finding leads to more questions: 1. How do we reduce the social stigma associated with epilepsy? 2. How do we increase the likelihood that people with epilepsy will disclose their disorder to others? 3. How do we increase social support for those who have epilepsy? Answers to these questions can help policy makers, healthcare providers, and the general public determine how to provide effective support to individuals who have the disorder to ensure they have a positive well-being and are fully contributing members of society. 

To learn more about epilepsy and how you can support those who have the disorder please visit: 

Center for Disease Control: https://www.cdc.gov/epilepsy/index.html 

Epilepsy Foundation of America: https://www.epilepsy.com/ 

Epilepsy Foundation of San Diego: https://epilepsysandiego.org/ 

About author

Aarti S. Ivanic, PhD is an Associate Professor of Marketing at the University of San Diego School of Business where she teaches market research and business analytics.  

About data 

This study included 192 respondents (57% women, 83% Caucasian). Sixty six percent of respondents were between the ages of 26-54. Sixty-seven percent (67%) had a college degree. One third (31%) of respondents made less than $25K per year and 45% had an annual income between $25K and $75K. All participants had epilepsy, and 80% had their seizures under control.