News: Chronic Illness Inclusion Project Newsletter (November issue)

Launching “energy impairment”

From now on, “Energy Limiting Chronic Illness” is the term we’ll be using to better represent you and voice your concerns. From all our focus groups and survey responses, the concept of energy impairment seems to best convey what people with chronic illness want policy makers and society in general to understand and take account of. We were looking for a term that is not disease-specific, but conveys what it means to identify as a “spoonie”.  In the language of Spoon Theory, energy impairment means lack of spoons, due to extreme fatigue or fatiguability, often involving pain and cognitive difficulty.

Energy impairment is not the same as everyday aches and tiredness and can be extremely debilitating. Until this is understood by those who make decisions about our lives, we will continue to be excluded from policies and services designed to address disadvantage among disabled people.

Next steps

We have now finished the focus group research and the data collection phase of the project. It’s time to start sharing the findings with you in a series of blog posts I’ll be writing in 2019, as we develop our manifesto for changing policies and perceptions around energy-limiting chronic illness. We’re planning ways to consult with you to ensure we reflect all your views and cover your priority areas for change.

This is the time to grow our movement as we develop the manifesto. Please share our new website in your networks and encourage your followers to sign up to our mailing list and like our Facebook page.

Write for our blog series

We are looking for more contributions to our blog series. This time on particular themes:
Belief and disbelief with chronic illness – how important is to be believed about our illness? What are the consequences of disbelief? Where are the battlegrounds of belief/disbelief in our daily lives?
Access – what are the changes we need in order to get out and about more easily with energy impairment. You could consider using mobility aids, accessing public spaces, using public transport, visiting shops and restaurants. Think about changes in public attitudes as well as practical adjustments.

If you want to write a blog post please email me at [email protected] with the subject heading “blog post” and I’ll pass on your email to our blog editor, Fran Halsall.

Thanks and best wishes,

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