Disbelief and Disregard
A research project on gendered experiences of energy-limiting chronic illness (ELCI) in England
The Disabled People’s Organisation Chronic Illness Inclusion (CII) have developed the term Energy Limiting Chronic Illness (ELCI) to allow for collective advocacy work across conditions in which people experience impairments in energy/stamina/breathing/fatigue such as neurological, musculoskeletal, auto-immune diseases, ME/CFS, fibromyalgia and Long Covid. Through vital research on ELCI, CII have also developed the term ‘systemic disbelief’ to identify the culture of disbelief and disregard that is encountered by people with ELCI in interactions with a range of institutions: healthcare, work, welfare, social services, leisure, etc. This disbelief creates barriers to equality and inclusion for people with ELCI, and relates to even fundamental disagreement over whether conditions are biophysical or psychosomatic.
Many ELCI predominantly affect women and there are longer histories of patriarchal, ableist and racist epistemologies in medicine in which women’s knowledges and experiences of their own bodies have been downplayed or ignored. This is exacerbated further for women of colour, queer, trans, disabled and nonbinary people. In response to this, this research project aims to explore the gendered lived experiences of Energy Limiting Chronic Illness in England.
- To investigate the experiences of women, trans and non-binary people living with ELCI in relation to health care, employment, education, welfare, social and family life.
- To explore the forms of disbelief, ignorance and stigma experienced by people living with ELCI and situate these in relation to broader gendered histories of medicine and disability.
- To consider the potential to theorise and advocate for ELCI collectively by looking at shared experiences, whilst remaining mindful of the specificity of particular conditions and intersectional differences in people’s experiences.
- To extend theoretical discussion on ‘epistemic injustice’, disbelief and stigma in relation to chronic illness through a focus on energy impairment or ELCI and through collaborative research that centres the knowledge and experience of people living with ELCI.
This research is based on analysis of secondary survey data collected by Chronic Illness Inclusion in 2021 to feed into the DHSC inquiry into Women’s Health and Wellbeing in England. The data records the experiences of approx. 800 people (mainly cis women, but also some trans and nonbinary people). The 800 responses include experiences of over 40 different chronic health conditions, with 80% (n=640) of participants experiencing energy impairment. The survey contained 14 open text questions, generating what is undoubtedly the largest qualitative dataset that documents the experiences of people living with a wide range of ELCI. This project analyses these qualitative data to build a better picture of the lived experience of ELCI.
Dr Bethan Evans and Dr Morag Rose (University of Liverpool), Catherine Hale and Dr Alison Allam (Chronic Illness Inclusion) and Dr Ana Bê Pereira (Liverpool Hope University).