A WOMAN whose life has been turned upside down by a rare condition feels she is being punished after having her benefits cut.
Julie Knight, from Pontrobert, was diagnosed four years ago with narcolepsy which causes her to fall asleep, and cataplexy, a condition which causes loss of muscle tone, stumbling, slurred speech and adverse effects from lighting, computers and flashing lights.
She also has stumbling fits when going into places like supermarkets and the condition affects her day to day living.
Despite battling on, Julie was forced to quit her job and apply for disability living allowance.
However at the end of 2015, a change in the law saw her lose part of her benefits and cause her family exceptional hardship, as they relied on family to get by.
She has told the County Times she feels punished for not being able to work, despite wanting to go out to work.
Julie said: “I tried to carry on working, but I was suffering from stumbling and falling asleep and my employer said I just couldn’t carry on working.
“My partner was looking after me, working part time, and getting a carer’s allowance, but now benefits have moved over to what is called PIP personal independence payment.
“It is made up of two components and I wasn’t granted one of the components, which meant we couldn’t get a carer’s allowance to help us, causing us serious problems.
“We have had to lean on our two adult children who live with us, to help pay bills, and my parents, and it just feels like I am being punished for having this condition which I can’t help.
“I want to work, but I can’t, and there are people out there who don’t want to work.
“How I am being treated is just wrong.”
Julie appealed the decision and had it overturned by the courts, which she thought would then allow her to claim the full amount and get back to some normality. However, the Department for Work and Pensions wrote to her, telling her they wanted written reasons from the court why the decision was made and no money would be paid until they were satisfied with the reasons.
If they are not, they will take the decision to a higher court, causing Julie and her family more prolonged financial problems.
She has admitted she feels like giving up and throwing in the towel, however she doesn’t want to do this, because she doesn’t want other people to be effected and “punished.”
She added: “It has been so stressful, and at times you can’t cope because emotion makes the condition worse.
“The government now considers conditions like this and epilepsy should be supported by the employer, but this hasn’t happened, it’s ridiculous.
“They have had all the documents from doctors about this, but are still not paying the money.
“It is so wrong, but I want to raise awareness so others aren’t treated like this.”