A key achievement of the Chronic Illness Inclusion Project has been to develop a methodology for making focus group participation accessible to people with severely debilitating chronic illness who struggle to, or cannot, leave their homes.
Our online focus group was complemented by a large-scale survey, enabling us to capture both the breadth and depth of knowledge and experience in the chronic illness community. We heard from over 2,000 people in total. This report details the extensive findings of our research.
We have produced a version of the report for screen readers in word (.doc) here.
In many studies into the long-term effects of chronic illness individual stories are lost within the statistical data. Stories of Our Lives takes a different approach by collecting the experiences of five people living with energy-limiting illness and positioning their stories at the heart of the research.
These case studies provide a rare insight into the day-to-day reality of chronic illness, allowing the reader to see the common factors that affect the energy-impaired, regardless of the underlying causes. Humanising this data is an important step towards recognising the impact that chronic fatigue has on individuals, their families and their place within society.
This discussion paper presents the ideas and assumptions behind the Chronic Illness Inclusion Project (CIIP).
A key aim of the CIIP is to translate our experience of chronic illness into the social model of disability, beginning with the distinction between impairment and disability. In this paper, I suggest that the lived experience of chronic illness involves both a distinctive form of impairment (bodily malfunction) and a shared experience of disability or disablism (social oppression).
The GSS consultation was aimed at standardising categories of impairment so that research across government and the disability sector can be compared more easily.
In our consultation response we said that it is important to capture ‘energy-impairment’ as a valid and distinct type of limitation or impairment. 87% of our survey respondents with chronic illness said they would always, or sometimes, use this term to describe the impact of their health condition. Although a similar category of “stamina, breathing and fatigue difficulties” is recommended by the Office for National Statistics, we rarely see it used, leading to under-reporting and neglect of our needs. We also stressed the importance of using language that is empowering and reflects our lived experience.
Read more about the Chronic Illness Inclusion Project:
Disability News Service: 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
Disability Wales: What does COVID-19 mean for the chronic illness community? The COVID-19 crisis has us all in shock. But it has also shone a light on our social exclusion as a group of disabled people, as well as our hopes for inclusion. A blog by Catherine Hale.
DRILL blog: Reflections on our emancipatory research process. Stef Benstead discusses what was different about our research methods, and shares participants' experiences of being heard and included.
Shaping our Lives: On Spoons and spoonies. Catherine Hale explains the basis of the chronic illness community and the role of the internet and social media in sustaining it.
Disability News Service: Bridging the chronic illness community and the disability movement.
Spooniehacker: Working to get spoonies a political platform. Editor Aly Fixter interviews Catherine Hale
Wheelchair Vista: Why Words Matter: spoonie or energy impaired. Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day. Fran Springfield argues for adopting the language of energy impairment to convey that we are not "just tired"
BBC Ouch: Chronic Illness takeover podcast. Catherine Hale in conversation with chronic illness writer and journalist Natasha Lipman.