Chronic Illness Inclusion Project: Stories of Our Lives

From a newsletter from them

In Autumn 2018, we held an extended online focus group with 20 participants on the subject of social security and work. Our focus throughout the project has been on our lived experience of chronic illness, as opposed to the official narratives, like the “biopsychosocial model”, that shape social policies.

One of the issues we discussed was the impact of energy limitation, or energy impairment, on work capability, and how employment fits, or doesn't fit, with our day to day strategies for energy management. Together, we developed the idea that our daily lives consist of various domains of activity: self-care, health management, domestic and financial management, parenting or caring duties, social and leisure activities, and employment, education or training.

Despite our different medical conditions and diagnoses, we all agreed that living with chronic illness entails making tough choices, from hour to hour, about how to spend our very limited energy across these various domains, in order to meet our material needs for survival and our human needs for social connectedness and a sense of purpose.

Some conclusions from the powerful testimonies compiled in Stories of our Lives are:

• Mainstream employment often isn’t the most appropriate route to fulfilling our citizenship aspirations.
• Disability assessments don’t adequately capture energy impairment and its impacts, especially the cognitive impacts.
• More people could work if jobs were tailored to their energy capacity.

Read the full document here​