Posted 20.04.2021

Chronic Illness - 'Fatigue is brutal'. It's not being tired and no amount of rest helps. Even
holding your head up is a chore'*

Chronic Illness hit the headlines last week when the National Institute for health and Care Excellence (NICE) published a major change of pain treatment policy. 

In 2020 as part of the DRILL programme of research (led by Disability Action NI in partnership with Disability Rights UK, Disability Wales and Inclusion Scotland), The Chronic Illness Inclusion Project and the Centre for Welfare Reform published a report on Energy Impairment and Disability Inclusion, written by Catherine Hale, Stef Benstead, Jenny Lyus, Evan Odell and Anna Ruddock.

"People with invisible chronic illness typically experience hostility when positioning themselves as disabled – claiming disability benefits or using accessible toilets, for example. Whether from friends, acquaintances or impersonal bureaucracies, the response ranges from subtle expressions of disbelief to overt accusation of faking or attention seeking," Catherine Hale, co-author of the Energy Impairment and Disability Inclusion report.

The aim of the report was to bring the knowledge of the 2,300 people living with chronic illness who took part in the research closer to those who make decisions about our lives. Just as importantly, the report proposes strategies for amplifying our voice going forward.

*This is an extract from the Foreword of the Energy Impairment and Disability Inclusion report.

Read the full Energy Impairment and Disability Inclusion report