This is what life is like for the record numbers out of work due to long-term sickness
Lauren was three years into an undergraduate degree in Astrophysics at the University of Newcastle when chronic illness, caused by Long Covid, led the student to drop out. "My illness means that I need plenty of rest days. I can only do small amounts of activity in a day (or sometimes nothing) and I struggle to read and process things," Lauren, who uses they/them pronouns, tells Cosmopolitan UK.
"I've had many people approach me online telling me I'm faking my conditions for 'financial gain', telling me to 'get a job' or calling me 'pathetic' because I can't work a typical job," Lauren – who now blogs about their experience online – adds. "It's so hard to not internalise these thoughts. I often feel that because I can't work like others can, I'm 'lesser' or 'not as worthy'."
Lauren is just one of more than two and a half million who are not working due to health problems – a number that has hit a new record, according to figures released this week by the Office for National Statistics (ONS).
Pandemic-related illnesses are cited as a potential cause with Long Covid playing a large part, as well as mental health issues and osteo-related concerns, possibly due to ineffectual work-from-home setups.
The figures – which show that for every 13 people currently in work, one person is on long-term sick leave – have sparked debate across social media which has been awash with conversations about those unable to work, ranging from the supportive to the woefully ignorant. But for the real people behind the statistics, not being able to work for a living, or at least to the degree they once did, is causing serious issues.
"When you’re unable to work, life can be very isolating," says 18-year-old Verity, who uses they/them pronouns, a chronically ill student from York. "Not being able to work leads to very few opportunities to make new friends, and it can feel like everyone you know is moving on with their lives, leaving you behind."
This feeling is often made worse by messaging put out by the government about those who are unemployed. "The government has spoken about people not being able to work in such a negative light," Lauren says, referencing recent comments made by Jonathan Ashworth, the Shadow Work and Pensions Secretary, who said that the low number of people who return to work is "totally unacceptable" and "a monumental waste of the potential of the British People".
"[Ashworth] described unemployed disabled people on benefits as 'a growing burden on the economy and taxpayers'," Lauren says. "So there's no wonder that a lot of disabled people worry about being a burden when our politicians keep sending that message to us."
Perhaps unsurprisingly, that message trickles down – and although many of us hoped that the pandemic would challenge people’s perception of needing to take time off sick – research from poverty charity Turn2Us has found there’s still a stigma that benefits claimants are "undeserving". This comes after data from the European Social Survey found that, out of 29 countries, Britain ranks second highest in thinking 'employees often pretend they are sick to stay home'.
"I often feel that because I can't work like others can, I'm 'lesser'"
Battling these perceptions, along with the financial implications of being out of work – especially during a cost-of-living crisis, which has forced 14.5 million into poverty in the UK – is unsurprisingly frustrating for many.
"Many non-disabled people seem to interpret somebody not being in work as [them taking the] easy way out," says 28-year-old Pippa, a disabled writer and charity sector communications consultant who lives with an Energy Limiting Condition. "In reality, the majority of us desperately want to work and crave the structure and value that accessible employment can add to our lives."
Verity agrees. "One of the most prevalent stereotypes is that people out of work due to illness don’t want to work, that we are using our conditions as excuses, or we’re exaggerating to get out of working. Actually, we desperately want to be able to work. It’s a horrible feeling having to rely on other people," they say.
"Almost every single disabled person I’ve spoken to, ranging in age from 13 to 80 years old, has expressed feeling like a burden. When we can’t work, we lose part of our independence, and independence is crucial for our mental and emotional wellbeing."
Time for change
As well as changing how disabled and chronically ill people are spoken about by the government (and in turn, the public), Pippa, Verity and Lauren all agree that work structures need a re-think – and that those with lived experience need to be consulted on this. "Those in charge should not be making decisions about disabled people without involving us at every step of the way," says Lauren. "It is exhausting to constantly be ignored."
Through her experience working with Astriid, a charity helping people with long-term illnesses find work, Pippa has seen first-hand how companies who don't make reasonable adjustments to those needing flexible setups are losing out on talent.
"[At Astriid] we see the huge, untapped talent pool of people in the chronic illness community who could add immense value to any organisation," she says. "If the world of work were to become more inclusive, and we focussed on tackling the unique access barriers that people with chronic illnesses face, there would be thousands more people who could chase their dreams and embark on a meaningful career."
"Those in charge should not be making decisions about disabled people without involving us"
These barriers are something that – like other chronically ill workers – Verity knows all too well. "Living with a chronic illness that varies from day to day (known as a dynamic disability) means at the moment I can’t commit to a job, as I have little to no idea how unwell I will be at the time of my shifts," they explain. "Not all disabilities are static. While some do stay the same from day to day, many ebb and flow. Just because we could do something yesterday, or even an hour ago, doesn’t mean we can do it now."
To that end, Pippa says the government needs to mandate "the creation of more flexible and part-time roles, so that more people have the opportunity to find fulfilling, sustainable opportunities" – an approach that she’s had success with herself, and one she wishes more people who are able to work had access to.
"It's absolutely crucial that roles are sustainable over the long-term, so people don't have to run the risk of burning themselves out or making themselves unwell just to keep up," she says. "Not everybody with a chronic illness is well enough to work, but I'm one of the lucky ones. If I pace myself carefully, I'm able to work part-time and flexibly. I often have to find creative solutions for the access barriers I face, and I make many sacrifices in order to go after the career I want for myself. However, with just a few adjustments, I'm able to thrive in work and have a better shot at chasing my ambitions."
A new narrative
While the pandemic, which saw more than two million people with chronic health issues forced to shield to protect themselves, led many to a greater understanding and empathy towards people suffering from life-limiting conditions, it is clear that we still have a long way to go before ableist narratives are no longer the norm.
Voices like Pippa, Lauren and Verity’s are vital in this conversation so that people suffering with debilitating conditions aren’t left feeling ostracised. "Lack of productivity in the workforce does not make you any less a valued member of society," Verity says so perfectly. "Well-being comes above any job. It is not ‘giving up’ to prioritise your health."
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