The seminar, led by human geography experts Bethan Evans and Morag Rose, was based on a research done with a larger team including from Liverpool Hope University, Chronic Illness Inclusion and Healing Justice London; it provided an opportunity for healthcare professionals who work with ELC patients, many of whom also live with these conditions, to discuss their experiences.
Find out more about the research project at: https://disbeliefdisregard.uk/
Addressing disbelief in healthcare: a systemic issue
The seminar underscored a startling reality: 75% of patients with ELCs feel disbelieved by their healthcare providers. This disbelief is often rooted in deep-seated sexism, racism, and fatphobia, leading to misdiagnoses, delayed care, and worsening health conditions. Patients often hear that their symptoms are “all in their head” or are dismissed as mere anxiety or weight-related issues, which feeds into a dangerous cycle of stigma, gaslighting, and invisibility.
This not only affects their healthcare but also ripples out to other areas of life—employment, education, and family relationships—perpetuating the cycle of inequality. Many individuals find themselves avoiding medical appointments out of fear of being dismissed, which further deteriorates their health. As noted in Bethan and Morag’s workshops with health care professionals, it often feels like patients are navigating a healthcare system designed for “healthy people.”
The seminar highlighted the experiences of healthcare professionals (HCPs) who work with ELC patients, many of whom also live with these conditions. The discussion explored the barriers to providing care and called for both systemic and smaller-scale changes to improve the experience of both patients and practitioners.
Fighting for care
People with ELCs described needing to “fight” the system just to access the care they need. This battle is particularly taxing for those already dealing with chronic fatigue and other debilitating symptoms. The effort of advocating for oneself within a fragmented healthcare system exacerbates their health issues, creating a vicious cycle that discourages people from persisting in their healthcare journey.
Moving toward a cycle of equality
The seminar also explored what a cycle of equality could look like for people with ELCs. To break free from the current cycle of inequality, systemic change is essential. This involves improving continuity of care, establishing multi-disciplinary hubs that offer a holistic range of services (including advocacy groups and housing advice), and ensuring early diagnosis pathways are implemented at the primary care level. Timely diagnosis and treatment can prevent further deterioration and help reduce pressure on the healthcare system.
Training for healthcare professionals needs a major overhaul. Currently, baseline knowledge about ELCs is often insufficient, leading to fragmented care. Care-coordinator roles and longer appointment times could help patients fully express their needs and receive the care they deserve. Additionally, the seminar discussed the need for environmental changes, such as quieter appointment times for those with sensory sensitivities and better noise and light management in clinical settings.
Rebuilding trust and supporting patients
A key element in moving toward equality is rebuilding the trust between patients and healthcare providers. This can be achieved by developing structured conversations that help patients articulate their experiences, alongside with improved education for healthcare professionals to raise awareness of the terminology used in chronic illness communities, and with more research on exploring with patients the right language to communicate their symptoms. A support network that helps people navigate the healthcare system is also critical.
Public and patient involvement (PPI/E) must play a more significant role in both healthcare service development and research. The seminar emphasized that people with ELCs should be involved in every stage of research—from conception to dissemination—to ensure accessibility and real-world impact. This involvement also needs to be integrated into healthcare education so future professionals are better equipped to support these patients.
A call for change
The Provocation Series seminar left participants with a clear message: belief and validation are crucial to breaking the cycle of inequality. By listening to and empowering people with energy-limiting conditions, healthcare systems can not only improve care but also restore hope. It is time to challenge the structures that perpetuate disbelief and build a future where healthcare is grounded in empathy, trust, and equality.