CFS Archives - Chronic Illness Inclusion

It’s Our Community

10 March 2021 Editorialteam CFS, Chronic Illness, ELCI, Energy Impairment, Energy Limiting Chronic Illness, Housebound, ME, Social Care, Social Exclusion

Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.

I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.

» Read more

Leave a comment Action for ME, CFS, Chronic Fatigue, Chronic Illness, ELCI, Invisible Illness, ME, Social Care

It’s not ME, it’s you – can the chronically ill embrace the social model?

21 May 2018 Editorialteam CFS, Chronic Illness, ELCI, Energy Impairment, Energy Limiting Chronic Illness, ME, Social Exclusion

Leonora Gunn discusses society’s role in improving the lives of the chronically ill.

The big idea of the social model is to distinguish between ‘impairment’ and ‘disability’: ‘impairment’ is someone’s condition, ME (myalgic encephalomyelitis, or ‘chronic fatigue syndrome’) in my case, whereas ‘disability’ describes the way that impaired people are oppressed and excluded from society on top of their impairments. This challenges the assumption that disabled people need to be ‘fixed’ or changed to fit in to society, and suggests that society needs to be changed to include everyone.

This might seem like a funny thing for someone like me, with a chronic illness, to believe. Surely illnesses, like ME, need ‘fixing’? And how can it be society’s fault that I am ill?

Ill versus disabled – is there a distinction between the two?

21 April 2018 Editorialteam Chronic Illness, Disability, Energy Limiting Chronic Illness, ME

Joyce Fox examines society’s differing reactions to disability and chronic illness.

Disabled activist, Stella Young recently wrote: ‘The social model tells us that we are far more disabled by inaccessible environments and hostile attitudes than we are by our physicality. My disability comes not from the fact that I’m unable to walk but from the presence of stairs.’

How true is this of people who are chronically ill? Accessibility is rarely the issue – we often have little energy to go out at all.

Chronic illness and education

12 September 2017 Editorialteam Chronic Illness, Education, ME

Geoff Jones recalls his experiences of education as a child with severe chronic illness.

Access to education is often overlooked when considering chronic illness and social exclusion. Education is particularly relevant if those affected become ill during childhood. In today’s Britain, where a university education has arguably become the norm, those becoming chronically ill during childhood may find themselves placed at a significant disadvantage, adding to the societal exclusion already imposed through their physical disabilities.

I became ill aged 13 with glandular fever and was subsequently diagnosed with myalgic encephalomyelitis (ME). Over the next three years various attempts were made to provide me with an education, either via home tutoring or part-time attendance at school. Eventually I was sent to a comprehensive with a special unit for those with various medical conditions. Unfortunately, due to a lack of understanding of my condition, I experienced a major relapse and, as I reached the age of 16 shortly afterwards, the educational authorities (probably with some relief) ended their attempts to educate me.

» Read more

One comment CFS, ELCI, Invisible Illness, ME, University