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Living with chronic pain: the daily struggle with a ‘new self’

People who suffer with chronic musculoskeletal pain face a daily struggle with their sense of self and find it difficult to prove the legitimacy of their condition.

A new study, funded by the National Institute for Health Research Health Services and Delivery Research (HS&DR) Programme, systematically searches for, and makes sense of, the growing body of qualitative research on musculoskeletal pain to help understand the experiences of patients suffering from chronic pain.

A number of concerning themes arose from the study, published today in the Health Services and Delivery Research journal, which highlighted:

  • Patients struggling with the fundamental relationship with their body, and a sense that it is no longer ‘the real me’.
  • A loss of certainty for the future, and being constantly aware of the restrictions of their body.
  • Feeling lost in the health care system; feeling as though there is no answer to their pain.
  • Finding it impossible to ‘prove’ their pain; “if I appear ‘too sick’ or ‘not sick enough’ then no one will believe me”

Kate Seers, Professor of Health Research at Warwick Medical School and Director of the Royal College of Nursing Research Institute, was a collaborator on this study. She explains, “Being able to collate this vast amount of information from patients paints a worrying picture about the experiences they have with chronic non-malignant pain. Our goal has to be to use this information to improve our understanding of their condition and, consequently, the quality of care we can provide.”

“Having patients feel that they have to legitimise their pain, and the sense that doctors might not believe them, is something that should really concern us as health care professionals.”

The study also identified a number of ways in which patients can move forward with their lives.

The key for some people appears to be building a new relationship with the body and redefining what is ‘normal’, rather than trying to maintain the lifestyle before the pain. Developing an understanding of what the body is capable of and becoming confident to make choices can aid the process of living with musculoskeletal pain.

Dr Francine Toye, of Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, explains, “This paper shows there can be value in discussing the condition with other people who are going through the same experience and knowing that you are not alone. Of course you can learn about your condition from various sources, but sharing your experience seems to really help people to move forward.”

77 studies of chronic musculoskeletal pain were included in the meta-ethnography, with collaborators from Nuffield Orthopaedic Centre, the University of Warwick, Glasgow Caledonian University, Leeds Metropolitan University, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences and the University of Calgary.

Notes to editors

The study was funded by The National Institute for Health Research Health Services and Delivery Research programme (09/2001/09) and was a collaboration between Toye (Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust (NOC), Seers (University of Warwick), Carr (University of Calgary, Allcock (Glasgow Caledonian University, Briggs (Manchester Metropolitan University), Andrews (NOC) and Barker (Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences).

A video that encapsulates the main findings is available at: http://www.youtube.com/watch?v=FPpu7dXJFRI

1. The National Institute of Health Research Health Services and Delivery Research (NIHR HS&DR) Programme was established to fund a broad range of research. It builds on the strengths and contributions of two NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which merged in January 2012. The programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services, including costs and outcomes. The programme will enhance the strategic focus on research that matters to the NHS. The HS&DR Programme is funded by the NIHR with specific contributions from the CSO in Scotland, NISCHR in Wales and the HSC R&D Division, Public Health Agency in Northern Ireland.www.netscc.ac.uk/hsdr/ 

2. The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).

This article presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

 



Further Information

For further information, a copy of the full paper, or to arrange interviews with Professor Seers, contact Luke Harrison, Press Officer, on +44 (0) 2476 574255/150483 or +44 (0) 7920531221, or by email on luke.harrison@warwick.ac.uk


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