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.
I became a disability activist and realised my experience as a person with a misunderstood chronic illness was common. In our online communities, people with different diagnoses share the same experience of fatigue, limited energy and pain. We also share the same experiences of social injustice and oppression. A lot of that oppression is based on disbelief and denial of our impairment and our disability. In 2017 I founded the Chronic Illness Inclusion Project in order to address this and have our voice heard.
Who is the chronic illness community?
One in three disabled people have ‘impairment of stamina, breathing or fatigue’, according to the government’s own research on disability. With Chronic Illness Inclusion we developed the term ‘energy impairment’ because many of us find there’s too much negative cultural baggage around the terms ‘fatigue’ and ‘stamina’.
Many disabled people experience some element of energy impairment. When it’s the main feature and most restricting feature of a condition we call it energy limiting chronic illness (ELCI). You may be familiar with ME, fibromyalgia and lupus as some examples of ELCI.
If you ask people with ELCI what their vision for social care reform and independent living is, most people don’t know about the principles of independent living. That’s because most of us aren’t getting any statutory care or support at all, let alone an approach that offers self-directed support, choice or control over our assistance. Of course, part of the reason is that cuts to local authority budgets have decimated social care funding and services for all disabled people. But there’s something more going on for people with chronic illnesses like mine. That’s what I’m talking about today.
You might be thinking isn’t it just because our needs are not severe enough to qualify for social care support? So I will share some research to challenge that view. It’s based on a survey I did with Action for ME in 2015.
ME is just one type of ELCI, but it’s an important example because according to several peer-reviewed studies, it appears to be the most debilitating of all chronic conditions, more so than stroke, MS, COPD or schizophrenia.
In a survey involving over 800 people with ME we found that 97% of them had needs for care and support that made them potentially eligible for care package. This chart lists daily living activities and according to Care Act if you have difficulty with 2 or more you may be eligible for support.