This project explores the ways in which disbelief impacts the experiences of people with ELC in relation to health and social care, education, employment, welfare and social and family life. For more information on ELCs, see this webpage by Chronic Illness Inclusion.
PROJECT ONE
Challenging Disbelief & Disregard
Funding: This project is funded by a British Academy/Leverhulme Small Grant.
Project Findings
Our analysis found that many people with ELC face discrimination when seeking medical and social care. This is often in the form of not being listened to or believed. This is compounded by other forms of discrimination such as sexism, racism, transphobia, homophobia and fatphobia. Disbelief and disregard in interactions with healthcare professionals has significant negative impact on all areas of people’s lives.
This animation summarises the experiences of research participants:
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We have also produced 6 policy briefs which group together into a longer report. Read those here:
The Research
Energy Limiting Conditions (ELC), also known as Energy Limiting Chronic Illness (ELCI), include conditions in which people experience impairments in energy/fatigue, many of which are poorly understood. ELC predominantly affect women and are often met with disbelief rooted in histories of gendered medical bias.
Research Objectives
- Investigate the experiences of women, trans men and non-binary people living with ELC in relation to health care, employment, education, welfare, social and family life.
- Explore the forms of disbelief, ignorance and stigma experienced by people living with ELC and situate these in relation to broader gendered histories of medicine and disability.
- Consider the potential to theorise and advocate for ELC collectively by looking at shared experiences, whilst remaining mindful of the specificity of particular conditions and intersectional differences in people’s experiences.
- Extend theoretical discussion on ‘epistemic injustice’, disbelief and stigma in relation to chronic illness through a focus on energy impairment or ELC and through collaborative research that centres the knowledge and experience of people living with ELC.
Methodology
The project analysed data from a survey carried out by Chronic Illness Inclusion. The survey data include responses from around 900 people, with over 40 different chronic health conditions, mainly living in England, with some people from Wales, Scotland and outside the UK. The project has mainly analysed the qualitative data.
Webinar presenting the results of the research
We recorded this webinar presenting the results of the research, you can watch it below or through the link provided here.
Subtitles are available and can be turned on in the video.
Research Partners:
In partnership with:
Funded by:
