Severe endometriosis means Alexandra Bennett, of Torquay, cannot work fulltime, even in a remote role. Flexible online jobs are highly competitive. And when she has previously told a potential employer of the disability accommodations she would need, she says she didn’t get that job.
Bennett, who was diagnosed at 18 after spending her teenage years in increasing pain, says she has lost work because of frequent hospital appointments and illness. As her stage four endometriosis has affected her mobility, she uses a walking stick and 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 the UK living with a long-term illness that has affected their ability to work. Data from the Office for National Statistics shows that the number of under-35s out of work because of chronic sickness has increased by 44% in four years to more than 560,000, a rise that experts link to a deepening mental health crisis and underinvestment in health services.
Bennett, a graphic artist with a four-year-old daughter, is supported by her partner, an electrician, while also receiving personal independence payment (Pip) and a small income from freelance art commissions. She has to adjust the volume of work she takes on depending on her health. “Even if I was fully remote, if I had a flare-up I couldn’t do it. I would never go for a full-time job purely because I couldn’t keep up with the demands – after two to three hours I have to stop because of the pain and exhaustion.”
Endometriosis affects Bennett psychologically, too, 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 about working. Then you try to do a job and fail because you’re ill … You have to go through the process of learning you’re worth something without all of that.”
The publication of workforce ONS data follows comments last month by the chief secretary to the Treasury, Laura Trott, who suggested there was a “duty” on disabled people to work remotely if they could, or face having their benefits cut.
Rhydian, from south Wales, like 36% of 16- to 34-year-olds unemployed because of long-term illness, is unable to work because of mental health problems. He says Trott’s comments are “outrageous”. “The Conservatives are once again looking for a target to point at, while trying to hide their own failings at running the country,” he says.
Rhydian says no one would endure the “unfeeling” and “inhumane” Department for Work and Pensions (DWP) assessment process for Pip and employment and support allowance (Esa), just to get a small amount of money he finds “financially crippling”, unless they had to.
When Rhydian, 30, got a retail job about 10 years ago, he says he was upfront with his manager, mentioning his anxiety attacks and depression. But he felt his employer made no disability accommodations, and says he became overwhelmed juggling shop-floor and computer system responsibilities, and got increasingly unwell.
“It slowly ground me down,” Rhydian says. “I felt my only option really was to be signed off work indefinitely.” He says he has been receiving means-tested benefits since.
Rhydian, who says he received an attention deficit hyperactivity disorder (ADHD)diagnosis this year, is paid £1,172 in Pip and Esa monthly, and lives in a housing association property. “I don’t think the workplace did do enough to accommodate my mental health at the time,” he says. But he says he is making progress and “baby steps”, such as receiving support from Careers Wales, towards full-time employment.
Others have been forced out of work after an injury. Jordan, 27, was in the early months of a history PhD in Leicester in January 2022 when she suffered a minor head injury after she fainted and hit her head on a tiled kitchen floor.
She has been living with myalgic encephalomyelitis – chronic fatigue syndrome (ME/CFS) – since, though she only received an official diagnosis this month from a chronic fatigue specialist, 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 has at times felt impossible and worsened my symptoms and mental health,” she says.
After stints 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 by her GP, she has been undergoing energy management treatment with an occupational therapist, which she says has been a huge help. She plans to return to her PhD part-time with disability accommodations in February, when her leave of absence expires.
“It’s unclear whether this will be sustainable in the long term enough to complete the PhD, and how I would be able to enter traditional employment after,” Jordan, who hopes to work in academia, says. “I’m hoping I’ll continue to improve – but I’d need the flexibility [at work] to say last minute, ‘I can’t do that’.
“Lots of people see people with chronic illness as a lot of resting, sitting at home watching TV all day. It might be fun when it’s a week off work, but when it’s constant, it’s wearying and depressing and affects your sense of self worth.”
