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Exploring patients’ experiences: ‘Struggling to be me’ video

A film ‘Struggling to be me’ exploring patients’ experiences of living with chronic musculoskeletal pain, received over 2,000 hits on NIHR youtube within a 12 week period.

This film presents the findings from a National Institute of Health Research (NIHR) Health Services & Delivery Research (HS&DR) project [1] grant to a team of senior qualitative researchers [2] 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.

  1. This futile search for a cure is draining me of the energy I need to move forward.
  2. I am developing a relationship of trust and cooperation with my body.
  3. I am focusing on re-building a new sense of self and re-discovering things I enjoy.
  4. I am letting other people know my limitations and don’t feel I have to hide my pain.
  5. I can share my experiences with other people.
  6. 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 info@painconcern.org.uk


[1] 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

[2] 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

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Comments

Found it tedious to watch in the beginning and middle
It was more positive in the end
Have just been diagnosed with PMR
Cannot afford to be negative!

Captures the struggle with daily chronic pain so well. Each statement resonates with experiences. Congratulations to the team.

So right. Very well done. eMail sent.

You’ve captured it very well. I spent a year in chronic pain not knowing the cause, using so much energy to try to find why I was in so much pain, feeling like the doctors and my friends didn’t believe me. I was told its fibromyalgia- which was a bit unbeliever by the professionals, seems to be a bit like IBS- a diagnosis you’re given if they can’t find anything else! Like the ‘rhumatism’ diagnosis I was given 20 years ago, and left to put up with it. Then a few months ago I got a different diagnosis- hypermobility syndrome, my joints & ligaments are too stretchy, so they really can be causing pain. It’s not in my head. Up until then I felt exactly like the woman in the video, hopeless, helpless, no one really believes etc.
But now suddenly everyone’s attitudes have changed- the physio is nicer, more helpful, so are doctors. And friends are different, work colleagues are more understanding. I still find it very hard to ask for support, or say I need to stop, but it’s so much easier now I am believed.
I didn’t want a diagnosis of fibromyalgia because I almost believed that meant it wasn’t real.
This experience has made me want to help people manage their pain, listen to people, show that I care & believe them. I think this video is very good, should be shown to all clinicians, and they should be supported to help those in chronic pain.

In no way do I mean that I don’t believe in fibromyalgia. I really do feel that people with this diagnosis, also have to deal with unbelievers, on top of their pain. This makes it extra hard for them. And I empathise.

This film made me cry at the beginning. I think employers and employees should be made to watch this. Similar experience but people are just plain nasty and because of “the zero empathy” attitude I do worry for my safety be it Dr’s/health staff or civilians.

Pain Concern would like to thank you all for the comments. Through comments left here, on our Facebook page, Twitter and via email the general consensus is that the video captures well the experience of living with pain. All feedback received has been sent to the researchers and we would like to encourage more comments and discussion around this important subject.

This video made me cry. I am so glad it was made because this is exactly my life – the desperation, futility, depression – the feeling of being trapped in a stranger’s body.
This video should be sent to every Health Professional.
I hope I can get to the stage of acceptance….

I can honestly relate to the video. 3 years ago I slipped a disc in the gym although one year later and so many doctors saying it was muscular I got my MRI. Finally a light at the end of the tunnel with great staff and a good hospital things were looking up. Surgery went well, with all positive feedback and doctors bringing down my concoction of medication I was relieved. 2 days and still in the hospital something was not feeling right, what with the doctors saying the pain should be subsiding the medication was not cutting it. Almost 2 years down the line I’m under pain clinic with no success yet I feel I’m letting my kids my soon to be wife down. I’m ex military so they jumped a little at PTSD, although scare tissue is now pressing against my nerve plus a joint problem it all seems the light is out of site… I will put this forward to my doctor who has got to be one of the best

I’ve struggled with chronic pain for 2and a half years and think everything said in this film is true to me it is a little dated picture wise put people should ignore that and just listen to the words. Daily life is such a struggle for me I’m unable to even leave the house dye to severe hip problems causing chronic pain. It is only very recently that I got my wheel chair that people are starting to realise there’s something wrong I’ve lost friends and know people look at me nic think it’s not that bad but it is completely physically and mentally debilitating. I can’t look after my kids the whole of my life is reliant on my pain and I hate it. Thanks gift making the film.

Was just like hearing and watching myself, I’ve struggled with chronic back pain for 17 years and I’m now 46, no one understands and I too put a brave face on all the time and even though I have lots of friends feel incredibly lonely. The worse thing is being unable to keep up with my 77 year old mother! I feel pathetic and guilty and because I look OK feel a fake too! Thank you for making the video at least there is some understanding out there!

Lindsay Galloway

Firstly why are the subtitles so crap? They distract you from the film.
I’m contemplating asking my upcoming tribunal for ESA to watch it as I wrote a lot of what is said in the film as part of my appeal. I compared my pain to mental health, just because you can’t see it nor always look depressed doesn’t mean it’s not real.
It would be nice to explore the next step of being positive and looking to the future as this is something I find difficult when living day to day and not being able to plan anything.
The film is very true to lots of aspects of pain, especially other people’s attitudes.

Hi there, I enjoy reading through your article.
I wanted to write a little comment to support you.

Comments are closed.

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