“I already have a job … getting through the day”: Energy limiting chronic illness, social inclusion, employment and social security

This study explored employment barriers and social security experiences of people living with chronic illness in the UK. It formed part of the Chronic Illness Inclusion Project, (2017-2020), a disabled-led community research program that, introduced new constructs of 'energy limiting chronic illness' (ELCI) and 'energy impairment' to categorize a form of disability. BACKGROUND. Policy-focused literature, influenced by a variant of the biopsychosocial model of disability, often dismisses chronic illness as a ‘common health problem’, in contrast to a work-limiting impairment. Work is posited to be good for health, and individuals with chronic illness are construed as passive subjects, requiring ‘activation’ to re-engage with work. In contrast, within literature advancing a social model of disability, obstacles to employment are located outside the subject, within discriminatory attitudes and environmental barriers. Neither model accounts for how people with chronic illness experience impairment and account for their exclusion from the workplace. This study is the first to group people with chronic illness based on impairment effects, (energy impairment), rather than medical diagnosis. METHODS. A purpose-built online application enabled qualitative data collection in format that was accessible to participants. The study involved 20 participants with a broad range of health conditions in an eight-week online forum, allowing for both direct responses and intergroup discussions. Thematic analysis was supported by Nvivo and facilitated by a Knowledge Exchange Programme with the University of Leeds.FINDINGS. Impairment effects of ELCI significantly restrict activities of daily living and work. Four work-limiting features common to most participants were identified: limited energy, fluctuating capacity, cognitive fatigue/dysfunction, and severe payback after exertion. Living with ELCI was described as an active strategy of allocating a scare resource (energy) between ‘domains’ of daily living, with essential self-care activities often ‘traded off’ against activities that bring meaning, purpose, or social connection. Most participants had no energy resource left for work after meeting essential activities of daily living. Employment was highly valued for its contribution to self-esteem and identity. However, the contractual nature of employment affords less autonomy for energy management strategies than other domains of life. Work and workplaces are disabling when they inhibit the temporal flexibility needed to manage limited energy and fluctuating capacity, and the result is deteriorating health. Workplace accommodations that enable employment with ELCI include reduced hours, worktime flexibility and working from home. For those who had some capacity for work, employment would only be possible in highly flexible ‘niche roles’ of fewer than 16 hours per week. DISCUSSION. With one in three disabled individuals in the UK experiencing impairment of ‘stamina, breathing or fatigue’, understanding the perspective of those with ELCI is crucial for evaluating welfare and employment policies. The impairment effects of ELCI can significantly restrict both hours and reliability of work, and work can be detrimental to physical health with ELCI. These work-limiting features are not reflected in disability assessment criteria and are overlooked by advocacy efforts rooted in the social model of disability. People with ELCI are already active subjects seeking purposeful contribution to society within scarce resources, therefore activation policies that fail to address the interaction between impairment effects and structural exclusion are misguided. The findings call for a re-evaluation of work organization, disability benefits and Diversity and Inclusion initiatives to account for ELCI. It suggests that only through a restructuring of both policy and workplace environments can the exclusion of people with chronic illnesses from the workforce be effectively addressed.