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Study highlights issue of stigma associated with epilepsy

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person covering their face, depicting Stigma

A new study focusing on stigma and epilepsy has recently been published in leading epilepsy medical journal, Epilepsia.

The study was conducted by the International League Against Epilepsy’s task force on stigma. For their research, the study’s authors reviewed published studies from between 1985 and 2019 on epilepsy & stigma from 13 global research databases.

For a study to be included within their research, it had to address “felt” or “enacted” stigma, while studies which addressed “attitudes” towards persons living with epilepsy were also sought for inclusion.

“Felt” stigma focuses on an individual’s potential embarrassment or shame associated with their condition while “enacted” stigma is the perceived act of discrimination that an individual could experience due to their condition. “Attitudes” address the opinions of those not living with the condition.

132 studies which addressed “felt” or “enacted” stigma were identified; while 210 studies around “attitudes” were also identified. The authors then identified patterns or key conclusions around stigma & epilepsy.

While it must be acknowledged that some of the included studies were from as far back as the 1980s (meaning their findings would be quite dated); and that studies were included from all around world, we have no doubt that many of the points raised in the study will resonate with many people with epilepsy in Ireland.

The authors report that negative attitudes towards epilepsy were recorded in all the studies included.

“Felt” stigma was associated with increased risk of psychological difficulties and impaired quality of life. Factors such as a higher seizure frequency and seizure duration were recorded as contributing factors towards this felt stigma.

“Enacted” stigma was found to be associated with those from a lower educational level; socioeconomic status; rural area; or religious grouping.

Sadly, another point identified by the authors was how people with epilepsy often saw themselves as having an “undesirable difference” to others which resulted in the expectation that they would be treated differently.

Other key findings from the research include:

  • Negative attitudes toward epilepsy represent a significant social implication for persons living with epilepsy.
  • The impact of “felt” and “enacted” stigma for people with epilepsy does not vary significantly from country to country
  • Attitudes towards epilepsy can not only vary across countries but within different geographical areas within specific countries.
  • The terminology attached to epilepsy also proved to contribute to the production of stigma surrounding epilepsy.

All the above has led the authors to conclude that a better understanding of epilepsy is required and that further studies should aim to inform how best to do this.  If you would like to read the study in full, you can do so by visiting the Epilepsia website. 

Epilepsy Ireland works to educate the Irish public about epilepsy through our ongoing campaigns and through our team of Community Resource Officers who deliver educational talks to schools, workplaces and communities across Ireland. We believe that these activities have been critical in reducing stigma and misunderstanding in the 21st century. However, epilepsy stigma and negative attitudes still do exist and many readers of this article will have direct experience of this.

One of the best ways to address stigma is for people with epilepsy to be open and honest about their epilepsy, communicating it as ‘just another medical condition’. Key to improving public understanding of the condition is hearing from those who are living with epilepsy. This provides context to the lived experience of those living with epilepsy. It cannot be underestimated how powerful a simple conversation with a family member, friend or colleague about your epilepsy can be. That person carries the knowledge you shared with them to future experiences and conversations, creating a ripple effect which helps to increase understanding exponentially.

This is why awareness days like International Epilepsy Day are so important to us and why we seek to share personal testimonies in the lead up to the day and on the day itself. If you are interested in sharing your story of living with epilepsy publicly, please do get in touch with our Advocacy & Communications Manager, Paddy McGeoghegan by emailing pmcgeoghegan@epilepsy.ie.

It can be a lengthy journey for many people with epilepsy to become comfortable in discussing their condition openly, often for the reasons identified in the study. Our Community Resource Officers are there to support you on your journey with the condition so please do not hesitate to get in touch should you need any support, information, or advice regarding your epilepsy.

For further information on communicating your epilepsy to others, please see our How2Tell resources. This is a wide-ranging resource kit developed by researchers in Trinity College Dublin in conjunction with people with epilepsy which aims to assist people with epilepsy in telling others about their condition. Visit the 'How2Tell' section of our website to learn more.