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Closing the gap for people living with fibromyalgia: Investigating the difference between healthcare perception and lived experience in North-West Leicestershire.

    Cohort 2026 Research Placement Project

    About The Project

    This person on this placement will collect important information about the way fibromyalgia is viewed by healthcare professionals in Leicestershire and will compare those views to co-created depictions of the lived experiences of people living with fibromyalgia in the local area. The purpose of this research is to raise awareness of, and improve understanding of, the lived experience of Fibromyalgia.

    Fibromyalgia is a lifelong chronic pain condition that severely affects quality of life, restricting education and employment opportunities, socialising, and the ability to carry out everyday activities. Most people with Fibromyalgia live every day with chronic widespread pain and tenderness or stiffness across all parts of their body, as well as numerous other mentally and physically exhausting symptoms, including brain fog, memory loss, unrefreshing sleep and heightened pain sensitivity. None of these symptoms are visible, but they do have a major impact on sufferers’ life’s.   There is currently no cure for Fibromyalgia, with many current treatments being ineffective at managing these symptoms. 

    A recent survey highlighted how the 40,000 people with Fibromyalgia in Leicestershire and Rutland are being underserved by healthcare services. A major obstacle to appropriate healthcare is ineffective initial diagnosis, which is hampered by a lack of understanding of the condition among healthcare professionals. A contributing factor to this is that the lived experiences of people with Fibromyalgia are not adequately captured or reflected in standard diagnostic criteria.

    This co-created project aims to capture and reveal the invisible symptoms of Fibromyalgia to change attitudes, beliefs and understanding in those who diagnose, treat, care for, work with, or live with, people living with Fibromyalgia in Leicestershire. Building on an existing community-academic relationships with Fibromyalgia Friends Together (FFT – a well-established Leicestershire-based community support group) the projects will harness the lived experiences of local people living with Fibromyalgia to reveal and communicate their hidden disabilities.

    Project Aims 

    The project’s aims are:

    Create a public facing communication to highlight similarities and/or differences between healthcare perceptions and lived experiences for the purpose of raising awareness and promoting clinical culture change around Fibromyalgia.

    Collect information about the perception of Fibromyalgia from local healthcare professionals through on-line survey methods.

    Depict the lived experience of people living with Fibromyalgia in group settings through artistic or other creative methods.

    Project Team