Many people with epilepsy don’t feel comfortable talking about their condition for fear they will be discriminated against, according to a charity poll. UK-wide charity Epilepsy Action surveyed almost 700 people with epilepsy to explore how they feel about talking to others about their epilepsy.
Of those surveyed:
- one in five (19%) people with epilepsy said they feel uncomfortable or very uncomfortable talking about their epilepsy with friends
- one in seven (14%) feel uncomfortable or very uncomfortable talking about their epilepsy even with their family.
The top three reasons people gave for feeling uncomfortable talking about their condition were fear of discrimination (or being treated differently), concerns that people don’t understand epilepsy and feeling embarrassed.
Respondents who are not seizure free were more likely to indicate that they feel uncomfortable talking about their epilepsy, especially in a work setting. Worryingly, three quarters (75%) of people who do not feel comfortable talking with their employer, and are not seizure free, said that they fear they will be discriminated against.
The findings come in the run up to Purple Day, the global awareness day for epilepsy, celebrated on 26 March each year. Purple Day was created in 2008 by then nine-year-old Cassidy Megan, a Canadian girl living with epilepsy. She came up with the idea as a way to dispel the myths surrounding epilepsy and raise awareness positively. The event sees purple-themed fundraisers taking place all over the UK, as well as several landmarks turning purple to mark the event.
Epilepsy Action believes that everyone can do something to change this. They are calling on people to take a few minutes to learn more about epilepsy at epilepsy.org.uk.
Philip Lee, chief executive at Epilepsy Action, said: “It’s frustrating to hear that many people with epilepsy feel embarrassed talking about it, and worry that they will be discriminated against if they do. Epilepsy is certainly nothing to be embarrassed about and these findings highlight why days like Purple Day are so important to those living with epilepsy. The more we talk about epilepsy, the more we can challenge common misconceptions about it and offer the general public a clearer idea of what epilepsy is. We really hope Purple Day inspires people to share and talk about their epilepsy so that more people can begin to understand the condition.”