It was on their fifth date that Rachel* told Sophie there was pretty much no chance of them moving in together.
“It was obvious that it was going to probably become a serious thing, and I thought, She needs to know that a life with me is not going to be an easy ride,” Rachel told BuzzFeed News.
But Rachel’s issue wasn’t a fear of commitment, or a next-level love of her own space. She and Sophie are one of many couples for whom living together would mean a significant drop in their joint income, because Rachel would lose the majority of her disability benefits.
It would leave Sophie, a programme manager for a charity, to pay the way for both of them. Rachel is not keen to put her girlfriend in that position.
At the age of 17, Rachel, now 26, was diagnosed with Ehlers-Danlos syndrome, a genetic condition that causes weak and unstable joints that can lead to major dislocations. As a result she can only walk very short distances and uses a wheelchair.
The chronic pain and fatigue associated with her condition severely restrict her ability to work. “My health is very unreliable,” she said. “One week I probably could work a full week, but then the next week I might barely be able to get out of bed.”
“I’ve made several attempts at various different jobs but just never been able to do it,” she added.
Rachel receives employment support allowance (ESA), a benefit given to people who are unable to work or who need financial help because they cannot work many hours. She is on “income-related” ESA, for which eligibility is assessed based on the combined income of the household where a person lives. If she lives with someone else who earns more than £16,000 a year, she will no longer be entitled to receive it.
Rachel said she’s able to clock up an average of around seven hours of work per week as a freelance illustrator, and her small income is supplemented with ESA of £188 a week, or £9,776 a year. She also gets £204 a week in housing benefit to enable her to pay her private rent, and £58 a week in disability living allowance (DLA), which covers extra expenses that disabled people might have such as buying mobility equipment.
If Rachel and Sophie moved in together, Rachel would lose her ESA and housing benefit and the couple would be reliant on Sophie’s income of £30,000, except for the DLA, which Rachel said would not be enough for her to live on.
The average UK salary is £27,600 before tax, and in London, where the couple live, the average household spends just under £8,000 a year on daily expenses, including food, according to the Office for National Statistics.
“I worked out that if we moved in together into my flat [which is wheelchair accessible], we’d have £20 per week each after rent, bills, transport, and food,” she said. “It’s just not doable, we’d be so miserable.”
She added: “It’s not fair that I have to give a disclaimer that if Sophie ever wanted a life with me, she would end up having to become my financial supporter.”
"A life with me is not going to be an easy ride."
Even if they could manage living together, Rachel feels the situation creates a “really bad dynamic” because moving in together would automatically mean her becoming financially dependent on Sophie – a commitment she might not be ready to make.
She points out how important independence is to her generation. “I don’t think that there are many couple of our age that pool their finances or support each other,” she said. “I don’t even know how that works – do I get given pocket money?”
She also fears that the financial pressure on Sophie could ultimately cause a rift between the two of them. “I worry that my girlfriend will resent working that much and earning that much and never having any money,” she said.
“It’s just really frustrating because it feels like I’m being told that I don’t deserve to have a normal life because I’m receiving help from the government. Like I don’t deserve that help, or to move in with my partner and get married, and have a family, and all those things.”
The issues facing Rachel and Sophie are not uncommon, according to Linda Burnip, founder of campaign group Disabled People Against Cuts. “If a couple is married or cohabiting, they just lose entitlement altogether,” she said.
BuzzFeed News spoke to three other couples who felt that the benefits rules had negatively impacted their relationships. In two cases, the rules had torn them apart.
For Hannah and Simon, the pressure of living together supported by only Hannah’s income became too much and was enough to help end their marriage.
Two years into their relationship, Simon, who was working as a dancer, fell from a height and sustained injuries that led to a condition called complex regional pain syndrome. This means that even though any physical injury from the fall has healed, his nervous system continues to send pain signals. “He’s in constant pain for the rest of his life,” Hannah said. Simon’s condition makes it difficult for him to walk and he uses a wheelchair, which made it impossible to continue in his previous dancing job. With Simon out of work, the couple relied almost entirely on Hannah’s income – which ranged from £19,000 to £25,000 a year – while they were dating and living together.
“Our relationship was very tumultuous the whole time,” Hannah, now 35, told BuzzFeed News. “There were of course other factors, but a huge amount of strain stemmed from our financial situation. It absolutely put the pressure on.
“I was doing about 35 to 40 hours a week and the pressure of having to do all that on top of having to look after him was huge. I was just miserable all the time, and then he was miserable because he was unwell.”
They broke up, in part because of the financial strain, which Hannah thinks was too much, too soon.
“We were not quite ready to commit to living in that situation – we were a young couple in our early twenties,” she said. “You’re just trying to suss each other out, and you’re not necessarily at a point where you want to say, 'I will financially support you.'
“You want an equal partnership until you’re ready to fully financially commit to someone.”
"It absolutely put the pressure on."
When they split up and moved to separate homes, Simon was able to claim ESA and housing benefit and become financially independent from Hannah.
A massive weight was lifted from their shoulders, and, tentatively, they started seeing each other again but continued to live separately. “The lack of financial pressure made such a big difference, but we knew we’d have to face Simon losing his benefits again if we moved back in together,” Hannah said.
The couple did eventually move back in together, marrying in 2013, but having lost Simon’s benefits as a result, their financial troubles and the problems with their relationship returned.
The extra £58 Simon still received per week in DLA was spent on mobility equipment. Hannah estimated that they probably spent about £10,000 on wheelchairs during the time they were together.
“We got back into the same situation and it just caused so much stress and we’ve separated again,” Hannah said. This time, after a decade together, she believes the split is permanent.
The imbalance the situation created for them as a couple was always “very difficult to get around”, Hannah said. “There were times when he would see me as his carer and not his wife, and I would feel like, where’s the relationship gone?”
While she said the government doesn’t have to give ESA to people “just so that they can have a nice life”, she also feels that consideration should be made for people who are unable to work because they’re disabled. “It’s a situation that you’ve not asked for, that you’ve not got any control over, and it significantly affects your ability to independently go out and find a job,” she said.
“I would like a disabled person to be able to claim something irrespective of their partner’s income.
“It could be lower if their partner is earning, but just something so they’re not entirely dependent on another person.”
Hannah believes that if Simon had been able to keep his ESA when they moved back in together, things could have been different.
“I certainly think it would have taken a huge amount of stress off us if we could both have felt as though we were contributing to the household income,” she said.
“It’s very rare for a young couple with no dependents to not both be working and saving for a deposit on a house or whatever, and we never had that option. I’ve come out of that marriage with nothing.”
For some couples, other, darker issues may arise. According to a recent report by Public Health England, disabled people are more than twice as likely to be victims of domestic abuse than nondisabled people. Loss of financial independence can be a major contributing factor to domestic violence, which disabled people are already at greater risk of.
Burnip noted that disabled people who lose their ESA could be put in a difficult position after moving in and becoming financially dependent on a partner. “If you don’t have financial independence, you can’t leave,” she said. “It can be very difficult.”
Nikki Haswell, an advice manager at disability charity Diverse Abilities, told BuzzFeed News she had met several couples for whom the possibility of one partner having to financially support a disabled partner if they lost ESA posed a “make-or-break dilemma”.
“If you don’t have financial independence, you can’t leave.”
“If the disability is such that it prevents working then you’re creating this situation of dependency, which can obviously lead to some serious problems in terms of putting the disabled person under the control of the nondisabled partner, which obviously is highly undesirable,” Haswell said.
Haswell said she has also seen problems arise when “the working partner doesn’t want to have to take on the responsibility of the nonworking dependent partner”.
Tom, 36, is a domestic violence survivor who receives income-related ESA as a result of chronic depression and insomnia leaving him unable to work. His experience of abuse made him so scared of losing his financial independence that he lied about moving in with his most recent partner in order to retain his benefits. “I wanted to have the same autonomy as non-benefit-claimants,” Tom told BuzzFeed News.
Tom said the guilt and shame of lying about his situation eventually exacerbated his mental health issues further, and he ended things.
“It was hard to not feel guilty,” he said. “In the end I beat myself up about it too much and the shame made me so paranoid that I ended the relationship.”
Tom believed that the income-based ESA disproportionately impacts disabled people as opposed to those who might claim the benefit because of a short-term illness. “It is a policy that disables us more,” he said.
“Non-benefit-claimants have the right to full autonomy in love and relationships.”
He felt that many people often had enough difficulty accessing benefits, without the added obstacle of having to make relationship decisions based on them. Food bank charity the Trussell Trust has said one of the major reasons for people visiting their centres is delay or difficulty with processing benefit claims.
“Having fought for it, to then be punished because you are in love and desire autonomy and financial independence is really the icing on the cake,” he said.
Cathy, who lost the ESA she received as a result of her disability when she moved in with her partner Nick almost a year ago, says her sense of independence feels hugely compromised.
“It’s really limiting and frustrating because I want independence financially,” Cathy told us. “It’s really, really tough.”
The couple have tried not to let the situation affect their relationship, making cutbacks where they can, but “it does make things difficult”, Nick admitted. “It’s limited how much we go out and where we go.”
"It is a policy that disables us more."
Nick is currently looking for better-paid jobs so he will have more money to support Cathy, but he feels like it would be far fairer for disabled people to have their benefits assessed on individual, rather than household, income.
“I don’t understand why my income should penalise Cathy, who needs ESA to support her,” he said.
A spokesperson for the Department for Work and Pensions told BuzzFeed News in a statement: “Income-related ESA is a means-tested benefit to help cover living expenses, so all household income is considered.”
They declined to comment on why household rather than individual income was considered the most appropriate assessment.
They also declined to comment on the current system’s implications for financial independence. “Additional disability support like Personal Independence Payment and Disability Living Allowance are unaffected by a partner’s income,” the spokesperson said.
But Haswell disputed the relevance of these benefits when it came to making assessments for ESA. “[DLA and PIP] are designed to be an additional payment to offset some of the additional costs of living with a disability,” she said. “It’s not supposed to provide anyone with an income. ESA is the income replacement.”
All of the couples BuzzFeed News spoke to who were receiving DLA said it was not enough to live on and was used for extra costs relating to their disability rather than general expenses.
Since the introduction of the Equalities Act 2010, an equalities impact assessment must be undertaken for all new legislation to ensure that it does not have a disproportionately adverse effect on any particular group. But because the introduction of income-related ESA, in the Welfare Reform Act 2007, predated this and has not been updated since, the policy has not been assessed in this way.
A spokesperson for the DWP confirmed this.
Haswell said there needed to be a recognition from the government that allocating ESA based on household rather than individual income has a negative impact on disabled people.
“There’s a group of people with disabilities or long-term limiting conditions for whom work might be desirable but simply might not be an option,” she said.
“The current legislation is actually having a prejudicial effect on disabled people’s life chances, particularly in terms of developing relationships.”
* Names and some details have been changed to protect identities.