A new support group for people living with epilepsy or caring for someone with the condition has launched in York.
The Purple Circle Group was started by Anya Kayte, who has lived with epilepsy her entire life.
She told YorkMix why she’s started the group: “I’ve just gone through phases every year – I get angry and frustrated at how it’s being handled.
“I go through so many phases where I’m either blaming myself, or I just get angry at the world.
“Then I Googled support groups because I need someone to talk to, and it just wasn’t there.”
She explained the purpose of the Purple Circle Group. “I need to talk to someone that understands.
“Speaking to a mum or partner is only so much, and I felt like I didn’t want to burden my family…
“It’s difficult when you’ve got an invisible disability. You look so normal, you look so fine and healthy. You feel this need to exaggerate how you feel so they can understand or appreciate it.”
According to Epilepsy Action, there are 630,000 people with epilepsy living in the UK – around one in every 100 people. And every day 80 people are diagnosed.
It says the consequences of an epilepsy diagnosis “are severe and wide-reaching, resulting in the loss of education, independence, income and employment”.
I asked Anya if it was a conscious decision for the support group to be for family, friends, and carers of people with epilespy too.
“I think it has a massive effect on loved ones just as much as the person with epilepsy,” she said. Anya’s partner Harry said the support group is “not just consoling, it’s teaching them more about epilepsy, educating people on how to have healthy relationships”.
York dad Jonathan Brown shared his experience after his daughter was diagnosed.
“Initially you’re absolutely terrified, and you don’t know what it’s going to become, or what’s going to happen with it. So, you have to start doing some research and finding out there are so many different types of epilepsy.”
Jonathan added: “People don’t understand the impact that having a seizure during the course of the day has on your learning, social abilities, confidence etc.
“So, there’s such a massive wider impact that the condition has, and schools, by and large, are totally useless at understanding it.”
Not only did Jonathan highlight the struggles of being epileptic, but he also gave us an insight into being a parent and the fear it causes. “The first time she had a tonic-clonic seizure I couldn’t let her out of my sight.
“You’ve got to be really grown up and confront your real demons and worst fears because you’re living in fear all the time, and that just eats you up and wears you out quite quickly.”
What’s Jonathan’s advice for parents and carers of people with epilepsy? “Wishing it away, even though I do wish she didn’t have it, is pointless.
“You’ve got to take who she is, where she is… have I done everything I can to make this as safe as possible for her? If so, you’ve got to let her go.”
Therefore, the value of a support group being welcoming not only to people living with epilepsy, but to anyone caring for someone with the diagnosis, is immense. It helps people to not feel alone in extremely isolating circumstances and sharing in their experiences.
The Purple Circle plan to meet every second Wednesday of each month. The meetings won’t just provide the opportunity to share experiences and talk, but fun social activities too to truly build a community.
Find out more on the Purple Circle – York Epilepsy Talk & Support Group Facebook page.
