‘Doctors call it bull**** disease – but I can’t get out of bed’
1997 Stars in Their Eyes winner Faye Dempsey told how she can barely leave her home due to fibromyalgia
A young woman in such crippling pain she can barely leave her home is urging people not to see her condition as a “made-up illness”.
Faye Dempsey, a former Stars in Their Eyes winner from West Kirby, used to run eight miles a day, enjoy her job as a manager and go for regular nights out with friends.
Now she says she feels like she has been “beaten from head to toe”, because of a strange condition that doctors eventually diagnosed as fibromyalgia.
She told the ECHO the condition should be recognised as a disability and taken more seriously by doctors, the public and benefit officials who run fit-for-work tests.
Faye is one of almost 60,000 people to sign a Change.org petition on the issue, with high-profile backers including Danielle Lloyd and her mum Jackie, who has the condition.
She said it had taken almost a year before she was diagnosed after she first noticed pain in her back in 2014.
Faye was eventually told she had chronic fatigue syndrome as well as fibromyalgia, which she had never heard of.
The 35-year-old, who won the TV talent show as Olivia Newton-John in 1997, said: “People don’t understand the extreme pain you’re going through every day.
“With other illnesses you take a test that proves it, but with fibromyalgia it’s just that people have identical descriptions of how they feel.
“But there’s still so much stigma around it. We still come across stories of people having doctors tell them it doesn’t exist and refer to it as “bulls*** disease”.
“People ask why you’re not working, and one asked me if it was the ‘illness in your head’, like it was made up.
“But I feel like I’ve been beaten from head to toe, and like my ribs are bruised when I touch them.
“Sometimes you can’t even get up the stairs you are so tired, and sometimes people think you are drunk because you get a brain fog and talk so slowly.
“I struggle to sleep with the pain, and I’ve only managed to go out socialising with friends three times this year.
“This illness and other invisible illnesses take away our lives. I’ve only got my closest family now.
“You can’t keep to plans with frieds, and they drift away so it can get incredibly lonely.
“I can’t imagine how I’d even keep myself alive if I didn’t have my parents, as I can’t cook or do housework on my own.”
She said she was inspired to do something more after being inundated with messages from fellow sufferers when the ECHO first reported on her story last year.
Faye has campaigned since alongside two other sufferers, Adrienne and Leeann Lakin, meeting her local MP and setting up the Invisible Illness Junction support group.
She now fears not being able to get the financial support she needs, as she will soon have to do one of the government’s controversial fit-for-work tests.
But the government has said qualified health professionals do the assessments, and base them not on conditions but how conditions affect individual circumstances.
She added: “Back then I had so many dreams; now I just dream of being treated fairly and to not wake up in agony for the remainder of my life.”
Margaret Greenwood, Labour MP for Wirral West, said: “I recently met with Faye and was struck by how courageous and determined she is to make a difference on behalf of others with fibromyalgia.
“I was extremely moved by her story and her own personal experiences. We really do need a greater understanding of fibromyalgia so that people can get the support they need.”