How to tell someone you have epilepsy

Many worry about negative reaction
  • Deborah Condon

One of the many challenges facing people who are newly diagnosed with epilepsy is how to tell others they have the condition. However, a new resource has been developed to help with this.

Around 37,000 Irish people have epilepsy, which is characterised by recurring seizures. These are caused by excess electrical activity in the brain.

Public awareness of the condition is limited and there are a number of myths and misconceptions about it. As a result, those affected can be hesitant about letting others know. A previous study by Epilepsy Ireland suggested that 56% of people were not comfortable telling their employer and co-workers, while 29% struggled to tell even their family and friends.

A commonly held misconception is that having epilepsy means having tonic-clonic seizures, i.e. seizures that may involve losing consciousness, falling to the floor, limbs spasms etc... However, epilepsy is a complex neurological condition that affects people in many different ways and not everyone has tonic-clonic seizures.

Despite this, it is important for people with epilepsy to let family, friends and colleagues know about the condition, so that those around them know what to do in the event of a seizure. However, many people with epilepsy are afraid of the reaction they will get and do not know how to disclose this information.

Researchers from the School of Nursing and Midwifery in Trinity College Dublin (TCD) have been working with people with epilepsy to identify common strategies that are used to disclose this information. From this, they have developed a new website, app and booklet, called How2tell. The aim of this is to help support people who need to tell others about their condition.

"There has been an absence of practical knowledge for adults with epilepsy regarding the process or the steps involved in how to tell and who to tell. This educational resource is built on the experiential knowledge of disclosure by people who have gone through that process.

"The complexity of disclosure in everyday life means that people need access to a repertoire of strategies that they consider useful and effective across a range of different social, personal and work situations. The people we interviewed have a deep understanding of the meaning of disclosure in social or personal relationship life situations and we were able to build on that to develop this resource," explained Dr Naomi Elliott of TCD, who is lead researcher on the How2tell project.

Commenting on the project, Epilepsy Ireland CEO, Peter Murphy, noted that while the condition is becoming less of a taboo than it was in the past, telling others can still prove a major dilemma for people.

"Modern developments like How2tell assist greatly in reducing the stigma. With this app, website and booklet, people now have the tools to learn about the best strategies to use when disclosing their epilepsy to others and to help raise awareness about what is an often misunderstood condition," he commented.

Some of the issues covered by the new resource include:
-Weighing up who needs to know and when they should be told
-How to construct the message for the moment of disclosure
-Tailoring the message to different audience needs
-Dealing with people's reactions.

The How2tell app (for iPhone and android phones), booklet and website are available on the Epilepsy Ireland website here

The app is also available on Google Play and iTunes.

How2tell was funded by Epilepsy Ireland and the Health Research Board.


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