When you need help telling someone you have epilepsy

Brenda Quigg was diagnosed with epilepsy in November 2012, following a seizure she suffered while sleeping. With her diagnosis, the former community nurse lost her driver's licence, and had to explain to her colleagues in work why she would no longer be able to drive for work. Disclosing her illness was initially a challenge.

While she describes herself as “a very open person with no skeletons”, Quigg later realised that she had had symptoms for almost two years before her seizure, and had not admitted the severity of them to herself. “I had had mild neurological symptoms for two years before my big seizure, but unfortunately I didn’t know what they were at the time. I knew something was wrong but continued to deny it to myself.”

Trinity College's school of nursing and midwifery have pioneered a new research-based app and website called How2tell – funded by Epilepsy Ireland and the Health Research Board – to offer support to people with epilepsy and to help them identify the best way to disclose their diagnosis to friends, family and co-workers.

Epilepsy is experienced by more than 37,000 people in Ireland, but despite this there are many common myths and misconceptions about the condition. A recent Epilepsy Ireland survey showed that 29 per cent of study participants did not feel comfortable telling friends and family members they have epilepsy, while 56 per cent were not comfortable telling their employer and work colleagues.

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Following her diagnosis, Quigg found it difficult to disclose her illness to her parents. “Once diagnosed I worried about how I would tell my parents. Although they are in their 70s, they are still my parents and I felt I would have to underplay it in order not to worry them.”

As a mother of three, she felt that the need to explain her disease to other parents too, to reassure them. “I had to have conversations with mothers on the playground outside school to say, ‘I won’t ever have your children in the car while I am driving because their safety and mine is paramount’. Due to the unpredictable nature of the condition, I felt it was my responsibility to be honest with them. These parents really appreciated my openness.”

Seizure-free

RTÉ radio presenter Rick O'Shea was diagnosed with epilepsy at the age of 16 following a seizure during Christmas. "There had been no history of epilepsy in my family, and to be honest with you I don't think we even knew what epilepsy was. It was one of those things we had a vague idea about, but we had no experience of it within our own family."

O'Shea is currently six years seizure-free and has been a patron for Epilepsy Ireland since 2006. "In an ideal world, it doesn't matter that you have epilepsy, it simply should be a part of everyday conversation, but it's not that way for a lot of people.

“The (How2tell) app is wonderful, in that it’s really well put together and answers all of the relevant questions, and gives you some ideas as to strategies that you can use in those situations.”

Dr Naomi Elliott, Associate Professor of Nursing at Trinity College Dublin and lead researcher on the 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.

“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.”

Quigg said she hoped the increase in discussion surrounding the disease – as a result of the project – will lead to an increase in awareness and a reduction in stigma. And that those who have been seizure-free for a long time will feel that they can discuss their diagnosis openly.

"People who have been seizure-free for 15 or 20 years don't think it's relevant, or that they don't have to tell people, but that can really empower these newly diagnosed people to accept the terms and conditions that come with epilepsy," said Quigg. "I was very pleased when I realised that people with the lived experience had written this app (available at epilepsy.ie). They really are the only people qualified to do so.

“When you’re on a night out, you want to have a good time, not to discuss your medical history, but you are in the hands of the public. You should tell at least one good friend, or your brother or your sister who’s there in the pub with you, so they know, ‘if this happens to me, this is what you do’.”