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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

Related resources

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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