A Ripley woman who lives with epilepsy has spoken out about the loneliness of the condition as part of a national charity campaign.
Now 29, Katie Powell was diagnosed with epilepsy aged 14, and has spoken about her experience for Epilepsy Action’s awareness-raising Purple Day on Sunday, March 26.
One of the most common misconceptions that people have, she said, is thinking that life with epilepsy is only about seizures—and not the risk of loneliness and isolation.
Katie said: “I constantly feel tired, which is a side-effect of my medication, and when I tell people they just think it’s because I haven’t slept well, even though I can sleep all night.”
Her condition is also a constant source of worry, which can interfere with parts of day-to-day life which other people take for granted.
There are an estimated 7,500 people living with epilepsy in Derbyshire and, in a national survey, 60 per cent of people with epilepsy said they experience high levels of stress, low mood and anxiety.
More than 77 per cent reported a negative impact on their ability to take part in certain events or activities, and many said this had significant affects on their self-esteem and sense of identity.
Katie said: “I am always worried that I might have a seizure, especially during the night. Before I go to bed, I think to myself that I hope II wake up the next day. It’s not normal for people to feel like that and have that hope.
“I have always believed that because of my epilepsy I can’t have children and I have had to come to terms with that. It upsets me when other people are getting pregnant and it makes me grieve for the child I may not have.”
The anxieties also extend to other people, said Katie: “I always feel I don’t want to put other people at risk if I have a seizure. I don’t like to tell people how I am feeling as I don’t want to worry them and have to suffer with all of this by myself.
“Even though people believe I am open about epilepsy, there is only so much I feel I can actually tell them.”
For more information, visit www.epilepsy.org.uk/purple.