Stories of Our Lives

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.

Discussion Paper: Reclaiming Chronic Illness

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).

“Thank you! It’s so exciting to read a paper that deliberately sets out to politicise our experience. I can only speak from my experience […], but I have felt the momentum building towards this moment over the last few years. It feels essential that we continue to work to raise the political profile of chronic illness, and establish at least a mutually supportive relationship with the Disabled Peoples Movement in order to challenge the particular kinds of exclusion that we face.” – Anna Ruddock.

Response to consultation on impairment by Government Statistical Services

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.

“If there are better statistics that more accurately capture the size of the population who experience energy impairment, it will be much more difficult for policy makers and medical professionals to dismiss the needs and concerns of the people with chronic illness”. – Victoria Clutton, report co-author.

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