Exploring patients’ experiences: ‘Struggling to be me’ video
This film presents the findings from a National Institute of Health Research (NIHR) Health Services & Delivery Research (HS&DR) project  grant to a team of senior qualitative researchers  led by Dr Fran Toye from Oxford University Hospitals NHS Trust.
Many people suffer with longstanding pain that sometimes cannot be explained. The research team aimed to understand what it is like for someone to live with chronic pain, with a view to improving people’s experience. The research team identified 77 studies exploring over 1000 adults’ experience, and brought these findings together. With the help of media professionals, the film was then scripted from authentic words and performed by an actress.
The overriding theme portrays chronic pain as an ADVERSARIAL STRUGGLE, giving the person a sense of feeling guilty until proven innocent: I am no longer me and constantly battle against my body; I tend to focus inwards towards my body rather than towards my future; no one is explaining my pain and people don’t believe me; I feel like a shuttlecock and just want to be heard and valued; I have to prove that I am in pain but don’t want people to think that I am constantly complaining. I just want to be me. The findings from this NIHR funded study describe the following themes that helped some people to MOVE FORWARD alongside their chronic pain.
- This futile search for a cure is draining me of the energy I need to move forward.
- I am developing a relationship of trust and cooperation with my body.
- I am focusing on re-building a new sense of self and re-discovering things I enjoy.
- I am letting other people know my limitations and don’t feel I have to hide my pain.
- I can share my experiences with other people.
- I am gaining the confidence to experiment and make my own choices with other people’s help.
You can watch the film ‘Struggling to be Me’ by clicking on the following link to NIHR youtube.
Feedback for the video is welcome. In particular the researchers would be grateful to learn:
- How do you feel when you watch this film?
- In what way is this like your own experience?
- In what way is it different to your own experience?
- Who do you think would find this film useful?
You can comment below or send feedback to email@example.com
 Toye F, Seers K, Allcock N, Briggs M, Carr E, Andrews J, et al. A meta-ethnography of patients’ experiences of chronic non-malignant musculoskeletal pain. Health Services and Delivery Research. 2013;1(12):1-189.
This project was funded by the NIHR Health Services and Delivery Research programme (project number 09/2001/09). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HS&DR programme, NIHR, NHS or the Department of Health
 Francine Toye, Qualitative Research Lead, Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Oxford. Kate Seers, Professor and Director, Royal College of Nursing Research Institute, School of Health & Social Studies, University of Warwick. Nick Allcock, Professor, School of Health and Life Sciences, Glasgow Caledonian University, Glasgow. Michelle Briggs, Professor of Nursing, Institute of Health and Wellbeing, Leeds Metropolitan University. Eloise Carr, Professor, Faculty of Nursing, University of Calgary, Alberta, Canada. Karen Barker, Clinical Director (Musculoskeletal), Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Oxford. Senior Research Fellow, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Science, University of Oxford