“I used to hide my epilepsy because I was worried that people would be scared of or blank me. I now realise this was the wrong thing to do.” Craig Fairclough shares his story for Purple Day to raise awareness and encourage others to open up about their epilepsy.
He has had epilepsy all his life, but it wasn’t properly diagnosed until the age of 22. He has focal seizures that can make him seem absent. They can also make him shout out and swear. He can have up to four seizures in one day.
Craig, who works for the NHS East Midlands Ambulance Service and used to be in the Royal Navy, used to keep his epilepsy hidden from those around him. He was afraid that people would treat him differently if they knew about his condition.
Craig said: “I used to hide my epilepsy because I was worried that people would be scared of me or blank me. I now think that I was wrong to do this because it only led to more confusion when I had a seizure. I now speak openly and honestly about my condition, both to those around me and on social media. My seizures can sometimes look like I’m in a drunken stupor and it would be great if everyone could recognise it as a seizure and know how to help. I have told myself that I will not be ashamed of my condition. Speaking out has really helped my confidence and my safety.
“Epilepsy is a really misunderstood condition. This Purple Day, I would love it if everyone could take the time to learn a little bit about epilepsy so that they will be able to help someone like me.”
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, 1 in 5 (19%) people with epilepsy said they feel uncomfortable or very uncomfortable talking about their epilepsy with friends. One in 7 (14%) feel uncomfortable or very uncomfortable talking about their epilepsy even with their family. One in 4 feel uncomfortable talking to work colleagues.
The top 3 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 9-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.
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.”