The Choice to Tell Others

It is a personal choice to disclose private information to friends, family, colleagues or social acquaintances. People with epilepsy experience a range of reactions to their disclosure; however, often the response of others is concern and wanting to know how they can help.

Unfortunately, a general lack of knowledge and stigma around epilepsy still exists and can make the decision to tell others about your epilepsy challenging. Revealing personal or very private information to others is a sensitive issue to be considered carefully. Remember, it is your choice if, how, when and where you disclose that you have epilepsy. There are only some instances where disclosing a medical condition is a legal requirement, such as when getting a driver’s license or seeking medical insurance.

Epilepsy, unlike many other conditions, is only obvious during seizures and is ‘invisible’ the rest of the time. This means that, unless others actually witness a seizure, they may not be aware of the condition. On the practical side, revealing epilepsy means friends and family can learn how to help you during a seizure, which creates a safer environment for you and can give them and you more confidence. It can also help by allowing you to decide the manner in which people find out about your epilepsy.

Thinking about and planning any disclosure, especially to people who you know less well, is important and can help you keep control over your privacy. People with epilepsy often find it helpful to break up decisions about disclosing their epilepsy into the following steps:

• List who you want to tell and who you have to tell.
• Think about the purpose of disclosure and consider if it is necessary or worthwhile.
• Think about how much detail you are willing to give each group and create a written or mental script of what you will say.
• Consider the best condition or fact that affects a situation">circumstances to tell the person and figure out a plan for disclosure which makes it as easy as possible.
• Consider possible negative responses to disclosure and how you will respond to them

Before disclosing epilepsy it’s important to be prepared to answer questions about epilepsy and seizures – thus, be familiar with basic epilepsy facts beforehand.

People often find it helpful to start with general education about epilepsy and seizures, which can help resolve misconceptions of the condition. This often involves education about seizure management and how people should react if they were to witness a seizure.

Bronwyn and Geoff Lawrence discuss disclosure

Click on the photograph to hear Renee Elliot discuss disclosing epilepsy at work.