Dealing with disclosure – how to tell someone you have epilepsy

Posted on: 04 December 2017

One of the many challenges facing people who are newly diagnosed with epilepsy is telling other people ‘I have epilepsy’. In fact, an Epilepsy Ireland study showed that 29% of study participants did not feel comfortable telling friends and family members they have epilepsy and 56% were not comfortable telling their employer and work colleagues.

But why is this the case and what is the best time and way to tell? To help answer these questions, researchers from the School of Nursing and Midwifery in Trinity College Dublin have been working with people with epilepsy in Ireland to identify the common strategies that are used in the process of telling others about their epilepsy. Building on these findings they have developed a new practical website, app and booklet, called How2tell that will support people with epilepsy in everyday social, personal and work situations.

How2tell tools feature the ‘voices of real people with epilepsy’ using videos and quotes to present their voices. It is hoped that How2tell will support people newly diagnosed with epilepsy, and healthcare professionals and community care staff who support them as they adapt to living with epilepsy.

In Ireland, epilepsy is experienced by over 37,000 people. Despite this, public awareness of epilepsy is limited and common myths and misconceptions about epilepsy add to the challenge of disclosing. A commonly held misconception within the general public 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.

However, it is important for people with epilepsy to let colleagues and friends know in order to make sure they avoid any negative consequences that might occur if a person had a seizure and those around them did not know of their condition, or how to help them. People also find it difficult to tell as they are unsure how the other person is going to react or fear they might react negatively. This makes it difficult for people with epilepsy to disclose information about their epilepsy especially in situations involving relationships and work.

Dr Naomi Elliott, Associate Professor of Nursing at Trinity and lead researcher on the How2tell project said: “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.”

Dr Elliott continued: “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.”

Speaking about How2tell, Epilepsy Ireland CEO, Peter Murphy said: “Revealing a diagnosis is a perennial dilemma for many people with epilepsy. The condition is becoming less of a taboo compared to yesteryear and 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. We are delighted to have funded Dr Naomi Elliott and colleagues at Trinity College Dublin in their work to develop this extremely important and practice resource”.

Practical Advice and Examples

The researchers found that people used a range of useful strategies which they adapted depending on the situation in which they were talking about their epilepsy. Based on their experiences of telling in different situations, they gave practical advice about important issues including:

• Becoming comfortable with ‘my’ epilepsy;
• decision-making for why to tell;
• weighing up who needs-to-know and when to tell; identifying opportunities for telling;
• how to construct the message for the moment of disclosure;
• tailoring the message to different audience needs;
• telling to make it ‘ordinary’ and; dealing with other people’s reactions.

How2tell offers practical advice about what to say and how to construct the message for disclosure:

They advise breaking the message up into three parts:

1) starting with a brief statement that they have epilepsy;

2) reassurance to the person being told;

3) ending with practical information on what they want the person to do if they have a seizure.

For example: “I have epilepsy, it’s not a big deal, it will be grand, just do … if this happens”.

This message can then be adapted depending on the situation and the other person’s needs. In social situations, people with epilepsy used a casual approach, presenting practical information in a way to educate, reassure and also to maintain the relationship. Whereas in employment or formal situations, they used a structured, factual format that addressed work performance and safety information needs.

The How2tell app (both for iPhone and android phones), booklet and website are available on the Epilepsy Ireland website https://www.epilepsy.ie/content/how2tell

The app is also available on Google Play and iTunes.

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