People with chronic illness face hostility and isolation because of society’s failure to understand how their impairment affects their lives, according to the results of a ground-breaking piece of user-led research.
The research concluded that the most “fundamental oppression” experienced by people with conditions such as ME, multiple sclerosis, fibromyalgia and Ehlers-Danlos syndrome was the “negative attitudes” they faced.
More than 80 per cent of the more than 2,000 people with chronic illness who took part in a survey for the research believed there was a denial and disbelief about the fatigue they experienced.
The Energy Impairment and Disability Inclusion report (PDF) found that those who challenged this oppression by identifying as disabled people found the experience “liberating”.
The main sources of oppressive attitudes were interactions with Department for Work and Pensions staff – particularly in relation to personal independence payment – and healthcare professionals.
Understanding that the “disbelief and invalidation” they face is a disabling barrier is crucial to developing a social model of chronic illness, the report suggests.
One participant in a focus group organised by the researchers said they felt “a kind of weird, ambient hostility… the feeling that wherever I am, whatever I’m doing, I’m surrounded by people who maybe don’t get it and are liable to think badly of me at any moment”.
Another of those who took part in the research said: “I feel like every day I am battling to prove myself – that I am really this sick, that I am working hard, how exhausted I feel, how difficult things are for me, in order to avoid their judgements.”
The report concludes that the terms “energy limiting chronic illness” (ELCI) and “energy impairment” are acceptable to most people within the chronic illness community as a useful way to describe their lived experience.
The report says that many people with ELCI feel like undeserving frauds because they have “internalised” deeply negative social attitudes.
Despite those questioned through in-depth focus groups finding it liberating to identify as disabled, two-thirds (66 per cent) of survey respondents believed they risked hostility – such as implied disbelief or direct accusations of faking or cheating – if they identified as a disabled person.
And 85 per cent said they felt isolated by society’s failure to understand the impact of their condition.
Although it stresses the importance of using the social model of disability to explain and understand the oppression they face, the report insists that people with an ELCI must also be able to discuss the impact of their own illness on their lives, with nearly two-thirds of the survey respondents saying that better medical treatment would have the most impact on improving their quality of life.
Its authors say their research now provides a framework for building more effective advocacy for people with an ELCI “alongside and within the disabled people’s movement”.
They add: “We must now find a way to deepen this dialogue and continue this work.”
The report says there is “compelling” evidence that the views of people with chronic illness are rarely heard outside supportive online networks.
And it calls for funding to set up a new, user-led organisation that is run and controlled by people with energy limiting chronic illness.
The report – published by the Centre for Welfare Reform and funded by the user-led Disability Research on Independent Living and Learning (DRILL) programme – is based on the views of 2,300 people with chronic illness who took part in the research, which lasted from April 2017 to December 2019.
Catherine Hale (pictured), the report’s lead author*, said the coronavirus pandemic had shown that society “can radically adapt when it is forced to”.
She said: “For the first time in history, the vast majority of people in the UK have been forced to stay at home; an experience people like me are used to.
“Once we’re out of lockdown, I hope the changes that we’ve seen to support everyone – at work, in the community and at home as a result of coronavirus – stay in place for disabled people.”
The report is the latest piece of research to come out of the five-year, £5 million DRILL research programme, which is funded by the National Lottery Community Fund, and delivered by DR UK, Disability Action (in Northern Ireland), Inclusion Scotland and Disability Wales.
It is believed to be the world’s first major research programme led by disabled people, and it should eventually fund about 40 pieces of research and pilot projects across the UK, aiming to build evidence on enabling disabled people to achieve independent living
*The other authors were Stef Benstead, Jenny Lyus, Evan Odell and Anna Ruddock
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