The cost of living crisis really screwed us, we’re better off living apart than together

‘It’s like a cycle of sacrifice for both of you,’ says Carrie (Picture: Getty)

Carrie and her husband Aiden have been married for nearly three decades. However, for the last 11 years, the couple has had to survive on a single income and constantly fight to make ends meet.

‘If I died, Aiden couldn’t afford to bury me,’ Carrie tells Metro matter of factly. ‘The only way we could get by without really, really suffering is if we got divorced.’

Initially granted Disability Living Allowance in 2006, since 2017, mum of two, Carrie, 52, has claimed Personal Independence Payment (PIP), which is designed to cover the extra living costs of her disability incurred by multiple conditions, including complex regional pain syndrome and fibromyalgia.

‘After getting married, we said that if one person were out of work, they’d do everything for the other, but that version of ‘everything’ has shrunk to five tasks a day, which I still struggle to complete on bad days,’ Carrie tells Metro.

Although Carrie is currently unable to work, Aiden’s income from nightshift work as an electrical maintenance engineer takes the couple above the income threshold, which means they are not eligible for means-tested benefits.

In turn, the pressure to maintain their household in Halifax, West Yorkshire, on a single income during the cost-of-living crisis is intense and the financial toll has occasionally put the couple in debt .

Alongside covering their mortgage, Aiden took out a bank loan to pay for a more accessible bathroom. He also dipped into his pension to make their kitchen wheelchair friendly.

Aiden and Carrie have been together for 30 years (Picture: Supplied)

‘Before I qualified for free prescriptions, there were a few times Aiden got me my pain relief and the family went without basic food,’ says Carrie. ‘Both boys, now men, insist they never felt deprived, but that sense of failure persists.

‘If the costs of keeping me alive and mobile had been covered without having to take something away from them, they’d have had far easier years growing up.’

Despite the stress, Carrie still has an infectious laugh and smile. However, it doesn’t always stop the feeling of hopelessness from welling up when she can’t help financially beyond using her PIP for household expenses.

‘I feel worthless, sick, guilty…. it is so hard,’ she admits.

‘If I lost my PIP, the only way we could get by without really, really suffering is if we split up, so I could claim means-tested benefits.’

Recently, Carrie bought a replacement stairlift, but when the company quoted the figure for her share – the council agreed to pay half – she knew her PIP wouldn’t cover the £4000 bill.

In the end, Aiden and Carrie’s mother got the money together to buy a second-hand one for £1400.

‘The guilt is killing me because Adrian had a heart attack last December. He’s fine now but works full-time nights and is a Type 1 diabetic; he shouldn’t really be working the shifts he does,’ Carrie explains.

‘It’s taking a huge amount of agency away from my husband; it’s kind of this cycle of sacrifice for both of you.’

If you live alone, PIP is unaffected by income or savings (Picture: Getty Images)

Living in such financial hardship is a situation many disabled people up and down the UK are finding themselves in.

If you live alone, PIP is unaffected by income or savings – however, if a claimant moves in or marries a romantic partner who earns above a certain threshold, means-tested benefits such as housing benefit or income support, can be adjusted or removed.

When 39-year-old Holly Donovan moved in with their partner of five and a half years, Dave Allen, they knew it meant uniting in love and financial hardship. That’s why they delayed living together until July this year.

‘I made my peace a long time ago that I’d never have children because of all the cancer treatment, but I also thought, I’m never going to be able to get married because if I do, it’s essentially a vow of poverty,’ says Holly, who was previously eligible for means-tested benefits, including Universal Credit, Council Tax Support, and Housing Benefit.

When Holly moved in Dave, they knew it meant uniting in love and financial hardship (Picture: Supplied)

‘When we made the choice to be together, we had an emotional moment, saying “I would rather be with you and be in poverty and be alone”.’

Dave, 35, and Holly’s choice to move in together cut off access to the means-tested benefits that allowed Holly to live independently – they are unable to work due to long-term disability caused by childhood cancer – because Dave earns above the threshold.

‘We have to live on just Dave’s wage, and my PIP isn’t supposed to pay the rent; it’s supposed to cover my needs, like charging my power chair – but it does get spent on rent and bills,’ Holly says.

Dave’s income from his job as a Progress Mentor leaves the couple just enough to get by as long as they limit social spending, religiously turn off lights and plugs, and ration the use of the boiler – even though cold weather harshly affects Holly due to a metal rod in their spine.

Despite careful planning, the couple worries these sacrifices won’t be enough, given the ever-fluctuating cost of living.

‘I enjoy my job now, but I go to work and have nothing to show for it,’ Dave adds. ‘We’ve got a roof over our heads, but we might be sat here in the dark.’

‘I have become my greatest fear – being financially dependent on someone else’ (Picture: Getty Images)

With16 million disabled people and 15 million chronically ill people in the UK, many claim benefits to cover the estimated £975 per month extra disabled people need to survive. However, it is often insufficient, and they end up uncomfortably dependent on their partners.

Finn Taylor*, 52, hasn’t been able to work since 2017 due to epilepsy and cluster headaches.

When he married his partner in December 2021, Finn continued to be able to claim PIP but lost access to other means-tested benefits.

‘I felt rushed into it,’ he admits. ‘I felt bad saying we can’t do it; it’s not practical [for me]. But now I have become my greatest fear – being financially dependent on someone else. I don’t know how to get out of it.’

While Finn’s partner knowingly and happily accepted the financial burden, the topic still crops up when additional stresses pile on the couple.

‘On a day-to-day basis, [the pressure] doesn’t get admitted. It only comes to the surface when we get a new bill,’ Finn tells Metro.

‘The cost of living crisis really screwed us. I feel terrible most of the time when I think about it, but I can’t do anything about it. Nobody should depend upon anybody.’

Worryingly, one of the most insidious impacts of this benefits approach is the increased threat of domestic abuse.

Disabled women are more than twice as likely to experience domestic violence as non-disabled women (Picture: Getty Images)

Office for National Statistics data shows disabled women are more than twice as likely to experience domestic violence as non-disabled women and disabled men are twice as likely to.

Funnelling benefits assessments into one claim for the household means an abuser can assume control of the finances, making it harder for the vulnerable claimant to leave the relationship.

Meanwhile, some disabled people opt out of dating altogether. Joe Hardy, a disability rights campaigner who started #RightToLove to raise awareness of disabled marriage and cohabitation inequality, wants to find love but fears the consequences.

‘It’s the main reason I’ve never even looked for a relationship,’ says the 30-year-old from his home in Oxfordshire. ‘I don’t think it’s fair for me to say to a potential partner, ‘I know you love me and want me to move in with you, but to do that, you’re gonna have to financially support me forever or as long as we’re together.’’

‘Everybody deserves, as humans, the right to find and experience a happy, loving, consenting relationship,’ says Joe (Picture: Supplied)

Since launching the campaign as an X thread, Joe, who has cerebral palsy, has submitted two petitions to the government asking it to let disabled people keep their benefits when moving in with a partner. The first petition received 26,325 signatures in 2021, and the second received 11,462 in 2023.

‘Everybody deserves, as humans, the right to find and experience a happy, loving, consenting relationship,’ says Joe. ‘But those financial barriers are a real hindrance.’

Scope, a charity focused on disabled equality in England and Wales, believes fundamental change is required to level the playing field.

‘The benefits system needs reform,’ explains David Southgate, Policy Manager with Scope. ‘It shouldn’t be a fight; it should work better for disabled people and ensure they can meet the extra costs they face.

‘We want the Government to listen to disabled people and fix the broken benefits system to ensure that disabled people are able to access sufficient support to cover their needs.

Woman in wheelchair in front of open window in her apartment watching sunset (Credits: Getty Images)

‘Means-tested benefits need to be uprated so they always cover essential costs like food and energy.’

While Holly and Dave’s fierce love for one other prevents resentment from brewing between them, they feel it shouldn’t be a sacrifice anyone has to make to fall in love.

‘It’s never bothered me, but as time goes on, you realise how much the game is rigged. I feel a lot of anger,’ admits Dave. ‘People don’t care until it directly affects them, but go lose half your leg, find out that you can’t work, and then you’ll see how bad it is.’

Holly hopes that, eventually, change will grant disabled people their financial freedom and allow them to love, marry, and cohabitate without fear of economic repercussions.

‘Until then, I’m stuck in this no man’s land,’ they say. ‘I don’t get any help because I had the audacity to fall in love and want to marry and live with the person that I love, which is a right that is freely given to any other able-bodied couple out there.’