SAny endometriosis means Alexandra Bennett from Torquay cannot work full-time, even in a remote role. Flexible online jobs are highly competitive. And when she previously told a potential employer about the disability services she would need, she says she didn't get the job.
Bennett, who was diagnosed at age 18 after spending her teenage years in increasing pain, says she lost her job due to frequent hospital appointments and illness. Because her stage four endometriosis has affected her mobility, she uses a walking stick and a wheelchair, and lives with daily pain, incontinence and extreme fatigue. When we speak, she is preparing for her fifth surgery, a hysterectomy, which she says will not cure her endometriosis.
The 26-year-old is one of hundreds of thousands of young people in Britain suffering from a long-term illness that has affected their ability to work. Data from the Office for National Statistics shows that the number of unemployed under 35s due to chronic diseases has risen by 44% in four years to more than 560,000, a rise that experts link to a deepening crisis in the field of mental health care and underinvestment in health care. Services.
Bennett, a graphic artist with a four-year-old daughter, is supported by her partner, an electrician, while also receiving Personal Independence Allowance (Pip) and a small income from freelance art commissions. She has to adjust the amount of work she does to her health. “Even if I was completely remote, if I had a flare-up, I wouldn't be able to do it. I would never go for a full-time job just because I can't keep up with the demands – after two to three hours I have to quit because of the pain and exhaustion.”
Endometriosis also affects Bennett psychologically, and she deals with depression and anxiety. “You grieve the loss of the person you were and then you have to deal with the outside pressures that come with work. Then you try to do something and you fail because you are sick. You have to go through the process of learning that you are worth something without all that.”
The release of the ONS workforce data follows comments last month by the Principal Secretary to the Treasury, Laura Trott, who suggested there was a “duty” on people with disabilities to work remotely if they could, otherwise they would face cuts to their benefits.
Rhydian, from South Wales, like 36% of 16 to 34 year olds who are unemployed due to long-term illness, are unable to work due to mental health problems. He calls Trott's comments “outrageous”. “The Conservatives are once again looking for a target to point at as they try to cover up their own shortcomings in running the country,” he says.
Rhydian says no one would put through the Department for Work and Pensions' (DWP) 'callous' and 'inhumane' assessment process for Pip and the Employment and Support Allowance (Esa) just to get a small amount of money that he' financially crippling'. unless you had to.
When Rhydian, 30, got a job in retail about a decade ago, he says he opened up to his manager and mentioned his anxiety and depression. But he felt his employer had not made provision for people with disabilities, and says he became overwhelmed juggling responsibilities in the workplace and the computer system, and became increasingly ill.
“It slowly grounded me,” Rhydian says. “I felt like my only option really was to be signed off indefinitely.” He says he has been receiving means-tested benefits ever since.
Rhydian, who says he was diagnosed with ADHD this year, receives £1,172 a month in Pip and Esa and lives in a housing association property. “I don't think the workplace did enough for my mental health at the time,” he says. But he says he is making progress and taking 'baby steps', such as support from Careers Wales, towards full-time employment.
Others have been forced out of their jobs due to injury. Jordan, 27, was in the early months of a PhD in history at Leicester in January 2022 when she suffered minor head injuries after fainting and hitting her head on a tiled kitchen floor.
She has been living with myalgic encephalomyelitis – chronic fatigue syndrome (ME/CFS) – ever since – although she only received an official diagnosis from a chronic fatigue specialist this month, after a change of GP, a rejected referral and a long wait. “The stress and slowness of dealing with the healthcare system on top of an illness felt impossible at times and worsened my symptoms and mental health,” she says.
After a period of paid leave and an attempt at part-time study, Jordan, who is financially supported by her partner, a software engineer, has been on unpaid leave from her PhD since February. After a referral from her GP, she underwent energy management treatment with an occupational therapist, which she says has been a huge help. She plans to pursue a part-time PhD in facilities for the disabled in February, when her leave ends.
“It is unclear whether this will be sustainable enough in the long term to complete the PhD, and how I would then be able to enter a traditional career,” says Jordan, who hopes to work in academia. “I hope I continue to improve, but I need the flexibility (at work) to say at the last minute: 'I can't do that'.
“Many people see people with a chronic illness as resting a lot, watching TV at home all day. It can be nice to have a week off from work, but if it's constant it's tiring and depressing and affects your self-esteem.”