Hollie Cullen, 17, from Barnstaple, has been living in darkness due to the misunderstood condition of ME.
A teenager from Barnstaple who has been forced to live in darkness is campaigning to highlight the impact of her illness.
Hollie Cullen, 17, says she experienced negative reactions from both healthcare professionals and friends, who misunderstood her condition, myalgic encephalomyelitis (ME).
ME causes chronic fatigue and sensitivity to sunlight.
Hollie, who began suffering from ME when she was just eight years old, said: “Growing up with ME was terrifying. I lay in darkness with no energy and in constant pain.
“The light sensitivity is really difficult because it’s pounding with this burning.
“There was a point where I thought it was the end and that I wasn’t going to make it through Christmas.
“Not many people actually know what ME is. They think you’re just tired and are using it as an excuse not to go to work or school, when actually it’s a severe and sometimes life-threatening illness.”
Hollie is working with Fixers, a charity which helps young people to speak out, to create coffee cup sleeves which share details of her experience, facts about ME and links to useful websites.
Ceri Rutter from the Plymouth and District CFS/ME Group supports Hollie’s campaign.
“I like the idea,” she said. “It’s very distinctive and very simple. It’s bringing out a message about a very complex illness.”
Fixers works with young people aged 16-25 and provides them with resources to help them campaign on issues they feel strongly about.
Visit www.fixers.org.uk for more information.