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With a whopping estimated 28 million adults in the UK living with chronic pain, and 100 million in the US, there is no doubt that we are dealing with an enormous epidemic, coupled with a spiralling out of control opioid epideimic (particularly in the US) as a result. And then there is a whole other side to the story. Poor treatment, not being believed, heard or listened to, and much more. In other words, the injustices we face in living with chronic pain.
The Role of Injustice in Adjusting to Chronic Pain
One of the most amazing people that I have had the pleasure to work with is Josh Moran MSc and PhD candidate from the National University of Ireland (NUI).
And you will never believe what Josh’s research (not to mention passion) is all about? The role of injustice in adjusting to chronic pain.
Yep. You read that right. (Like finally, right? Someone who actually sees what is going on and what millions of chronic pain patients experience daily. How awesome is that?!).
So, I thought I would do a ‘mini-interview’ with the man who knows the ‘word on the street’, when it comes to researching hundreds of chronic pain patients, and their experiences of the injustice.
The following are some questions I had for Josh and his answers, which I thought you may find interesting, validating and even perhaps a bit eye-opening.
Firstly, a Little Bit About Josh…
‘Hi! My name is Josh Moran, and I’m a PhD candidate at NUI Galway. I have also worked as an assistant clinical psychologist in a Dublin chronic pain clinic over the last 7 years, during which I took a break to complete my masters in clinical and health psychology in the university of Manchester and a post graduate psychodynamics certificate from Oxford University.
My PhD research is focused on the role of injustice in adjusting to chronic pain. So far I have completed a narrative review of injustice and its relationship to pain outcomes in a chronic pain population, 2 sets of focus groups about the role of injustice in adjusting to pain and a cross sectional study looking at injustice, psychological flexibility and pain outcomes. I am currently developing an online acceptance and commitment therapy intervention for injustice.’
Could you tell us a little bit about your research on the role of injustice in adjusting to pain?
Josh: Hi! Firstly I want to say thank you for asking me to do this, it has been a real privilege to get to know so many great people in my years working in chronic pain and you (Alyssa) are certainly amongst them, and it’s nice to be able to have an informal chat in this type of format!
So, my research is based on the role of injustice in adjusting to pain, I’m happy to give a description of this because sometimes people see my title and think maybe I’m suggesting pain is all in a person’s head, nothing could be further from the truth.
Chronic Pain is Genuine. Not Only Can it be Unfair, it Can Lead to Injustice
My starting point is that pain is genuine, but I understand why people may think it is not my starting point, and it actually feeds into why I’m interested in injustice.
So injustice in the context of pain is to do with unfairness about pain, loss caused by pain, blame attributed to others about pain, and a lack of belief and support people get when they have pain. I’m well aware that many pain sufferers have been subject to others putting the cart before the horse, as in the pain is in your head and now you think it’s real, or some sort of trauma or depression was the cause of pain.
Where I always start is that pain is genuine, and that living with a chronic pain could cause difficulties which make it even harder to adjust to living in pain. The injustice of pain and all the disbelief and abuse that can come with it can make it even harder for people to adjust to pain.
Research on How Injustice Manifests, Difficulties & Intervention
My research is focused on how injustice manifests, what difficulties it can lead to, and is there an intervention that could help people with injustice. I do believe a public campaign educating the general public on what chronic pain is, the massive numbers of people who have it, and ways they can help if they know or interact with someone who has pain is a key part of this. (Josh is also planning on doing a public campaign, and you can get his contact details below if you’re interested in being in touch with him, he’d love to hear from you!)
I have also found in my research that people would appreciate an intervention to help them personally with injustice so I am working on that, as well. I’m well aware not everyone will have these feelings of injustice or feel it is necessary to research, but for those who do, I hope I can help in even a small way.
Hopes & Dreams of Improved Pain from Pain Clinics – The Reality
Do you find chronic pain patients pin all their hopes on doctors ‘fixing’ them?
Josh: I think that can happen for some people yes. In the Western world I think we have a culture of trying to always stay positive and never accepting negativity for a lot of things, and we also have the idea that hard work will fix anything.
Our medical system (in the UK) is also based on GP’s seeing 15-20 patients a day and diagnosing and fixing the majority of ailments, which in most cases does happen, medical research and treatment has done an amazing job of eliminating, treating, and making manageable so many different issues.
But when you have worked so hard and go in trying to get rid of your pain to the people you hope will have all the solutions and this doesn’t turn out to be the case? It can be extremely difficult to accept.
The Stereotype of People in Pain
Scam artists. Malingerers. No such thing as pain…I bet you’ve heard it all…
Josh: In terms of the lack of belief and support I could only talk about what I have been told by people in pain and people who don’t believe in chronic pain.
For those in pain it seems that they have been stereotyped. I have been told they have felt they were treated as/ actively told they were malingerers, scam artists, deceivers looking for insurance money. I think a lot of this comes down to lack of knowledge about the general idea of what chronic pain is.
A lot treat it as a longer version of acute pain, so if pain medication fails and scans come back negative then there is obviously nothing wrong. This as you, I, and all of your readers know is not the case, and this is backed up by experts.
The International Association for the Study of Pain describes pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”.
So it appears clear from this definition that not all pain is within the remit of fully understood and treatable methods that we currently have at our disposal.
I’m not sure how well this is known, or things such as the gate control theory are known, so I think with a lot of people they would have the belief that modern medicine can understand and treat everything, so if you say you have something that’s not understood or treated maybe it’s in your head, or you are dishonest. Unfortunately I’ve heard countless stories from pain sufferers who had experiences like this constantly in their lives.
Lose Weight. Exercise. Get a Life…
Many of us have been told by our doctors, ‘There is nothing I can do to help you. Lose weight. Exercise. Byeee’. What’s your take on this?
Josh: I have found that a lot in my research and talking to people with pain yes. Some have discussed flat out disbelief coming from GP’s, some have said they were initially given support but when the support didn’t prove effective (exercises, medication etc.) then they were subject to disbelief.
It’s an unfortunate reality for many I’ve talked to that once the pain medication didn’t work and the scans came back negative, it was presumed that they were perhaps over-estimating the level of their pain.
I should say also that many people have told me their doctor was fantastic and they felt lucky to have them. I have only done work with people in pain, but I do report what I am told by chronic pain sufferers and some have found disbelief and unfairness in their interactions with those they hoped would help, across care and personal relationships.
(On an interesting, side note, reading this Letter From a Doctor really provides a different view from the doctor’s perspective of what it’s like treating people with chronic illness – well worth reading!).
Pain Self-Management Through Digital Health
Health systems are pushing towards both digital health and also self-management as key areas to help improve the system. What do you think would make a positive impact for both the patient and healthcare professionals alike?
Josh: I should state before this answer that I was not bribed in any way! But I genuinely feel that FibroMapp Pain Manager+ app has the potential to satisfy a great deal of self-management and digital health suggestions.
In the most practical sense you can log different times and amounts of medication you have taken and exercises you have done, how you are feeling, what you are eating, how much sleep you are getting.
This can help avoid costly, time and effort consuming trips to doctors and can help people to tailor their care to individual circumstances.
I’m sure the benefit of tracking these things throughout days and nights would help improve knowledge and care quality also. In terms of my area we currently have online interventions for management of chronic conditions.
The ability to be able to offer resources to people 24/7 and get feedback on what is helpful and what is not would really benefit both patients and people creating interventions. Being able to offer different support, knowledge and exercises and measure changes in outcomes a number of times across days and years would increase positive outcomes and understanding massively also. It is also a way to individually tailor treatments for everyone if done correctly, and would surely be the best way forward.
If you’re interested in following Josh on Twitter, he’s available on @JoshKeith7Moran and he’d love to hear from you and find out more about your experiences as a chronic pain warrior and the injustices you’ve experienced in your journey.
It was (and continues to be) a pleasure in speaking with and working with Josh. On top of him knowing first-hand what chronic pain patients – and their primary care givers are experiencing, he is caring, compassionate and indeed passionate about making a positive difference in people’s lives.
His incredible research and work he has done regarding the injustices that chronic pain patients experience is truly fascinating, not to mention, hopefully raising more awareness amongst primary care givers regarding what people in pain experience.
Thank you, Josh for all you’re doing! The world needs more awesome people like you!