I was exhausted already, yet my workday hadn’t even started.
My laptop screen was split between my income spreadsheet and the government gateway for Employment Support Allowance (ESA).
Information on re-applying for Access to Work lurked in another tab, and a wad of paperwork sat on my desk, waiting to be filled in for Personal Independence Payment (PIP).
It was overwhelming to look at – let alone complete – but this was the reality of applying for disability benefits.
Looking back on this moment, I’m so glad I’ve chosen never to do it again.
I first applied for disability-related benefits in late 2017 while working at a London press agency. At the time, my health conditions – fibromyalgia, endometriosis, and hypermobility – had made commuting by Tube extremely painful, draining my energy before even arriving at the office.
So after my GP recommended applying for Access to Work – a publicly funded employment support programme designed to help disabled people start or stay in work by providing practical and financial support – I decided to go for it.
Applying required filling out a bunch of forms between long work days and painful nights trying to sleep away the chronic pain that wracked my body 24/7; it was a tiring task, but I did it.
When I was finally approved, I felt relieved. But then I saw the conditions set for me, which stated that the government would only cover up to £15 per trip, yet my taxis would cost a minimum of £20 one way.
Instead of providing reprieve, this became a financial noose around my neck, costing me an extra £50 to £100 per week – a significant increase on my previous £4 a day commute.
Then there was the faff of getting my employers to sign off every week before I could submit the paperwork, and annoyance that reimbursements sometimes took up to four weeks.
No surprise then that, within six months, I gave up Access to Work support because spending £40 to 60 per day on transport, and only recouping £30 of that, had plummeted me into a high-interest overdraft.
I tried to return to commuting by Tube, but the physical strain became unbearable even with flexible work arrangements. I quit full-time employment less than a year later.
I decided freelancing was my best bet, so in 2019, I applied for means-tested Employment Support Allowance – a benefit for people with illnesses or disabilities that make it hard for them to work – to cover income gaps caused by illness.
Again, at first, I felt relief. I’d be allowed to work while protecting my health with fewer hours. I was granted £250 a month, but I later discovered that this would be subject to tax, meaning I lost about a third of it.
And as ESA has a strict monitoring process, I had to report earnings monthly, with benefits reduced for every pound I exceeded the £16,000 annual threshold. This meant I could only work 16 hours a week.
My body could handle 25 to 30 hours, but the system trapped me in limbo between ‘almost poverty’ and ‘almost liveable income’. If I earned slightly too much, I lost support.
The constant seesawing was overwhelming; I even negotiated lower fees to avoid exceeding the threshold. Ironically, the system designed to help me was making my health worse by piling on the stress.
So when I secured a part-time contract for a long-term freelance gig, I gave up ESA. The administrative burden and feverish stress weren’t a worthwhile exchange for the meagre support.
I also considered reapplying for Access to Work again but knew this would require more admin, adding to my workload again. I simply didn’t have the energy.
Simultaneously, I discovered that I was eligible for PIP, a non-means-tested benefit for disabled people. However, after reading countless horror stories about demeaning assessments and a punitive application process, I couldn’t face it.
The fear of being denied, of fighting an appeal, of justifying my experience of disability to a system that seemed like it was trying to trip me up was all too much.
Eventually, in late 2019, I withdrew myself from all benefits. Not because I didn’t need them or because the money wouldn’t help, but because the system adds more stress than support.
As it is, claimants like me are on the edge of the ‘benefits cliff’ and in a poverty trap, never quite giving enough support to get out of their situation.
When you start to climb toward a liveable wage, support is seemingly snatched away before you can stand on your own feet. It looks like free money from the outside, but it feels like a cruel oscillation between support and punishment on the inside.
Our system incentivises you to stay on benefits because working more leaves you in the dust without any support. It doesn’t lift people out of poverty; it holds them just above drowning, then pulls them back under the moment they start to swim independently.
Instead of being a life jacket for people struggling, the system is the waves that pull you to the depths over and over again.
In short, it’s punitive and aggressive, draining what little energy chronically ill and disabled people have to spare. So I just couldn’t face it anymore.
Instead, I built a freelance career without government support and now work full-time to survive. Despite the hardship, I’m proud of everything I have achieved.
Not being restricted by the support threshold, I could take on higher-paid roles, like an interim editor at a human rights charity, and publish my work in dream publications.
It comes at a cost, though. My health is severely compromised by working 60-hour weeks, meaning I’m rarely well enough to enjoy any downtime, and I pay for all accommodations, like a standing desk, out of pocket.
Despite this, I always have to remind myself that I’m one of the fortunate ones.
Many chronically ill and disabled people don’t have this option. Most can’t afford to give up benefits because their bodies cannot survive the pressure of working more hours. But therein lies the problem.
We’re trapping a whole community in a vice between financial survival and physical wellbeing. We need change.
We need benefits that genuinely support people, with gradual reductions as they grow financially independent, not immediate withdrawals that push us back to square one. We need a simpler system that encourages people to access support instead of scaring them away.
And no matter what some claim, those claiming benefits are not living in the lap of luxury people. In fact, many of us are living in poverty.
I’m still too scared to reapply because the demonisation of disabled people is relentless. It feels like being under constant surveillance, waiting to be caught for ‘faking’ or missing a 50p discrepancy in reported earnings.
Labour’s planned benefit crackdown threatens to push more vulnerable people out of work, not back in. If we have any hope of closing the vast disability gap (only 53% of disabled people are in work), we need much more than rebranded Tory policies.
We need a system that supports, rather than punishes, those who rely on it.
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