Tune in to find out what Joletta Belton wants people challenged by pain to know about. Find out about the current state of pain science research and clinical practice in this straight-to-the-point interview with Joletta Belton.
About Joletta Belton
Jo is a speaker, educator, advocate, and co-chair of the IASP Global Alliance of Pain Patient Advocates Task Force. She writes a blog called ‘MyCuppaJo’ (https://www.mycuppajo.com/).
Transcript
What’s the one thing you want people who are challenged by pain to know?
So it’s always hard to come up with one thing but I think that where I would always start: the one thing I would want people challenged by pain to know, is that their pain is real. And that they are believed. Because so often people living with pain have been dismissed, and they may have been told things that make them think that their pain isn’t real, or that it’s all in their head. So many of the ways that we objectify and verify pain put all of the burden on the patients to prove that their pain is real. I want to flip that script, and just have us always start from a place of ‘Your pain is real and we believe you’, because I think that would change the whole course of a therapeutic interaction or a clinical interaction, and provide some really necessary and invaluable validation for the person in pain that they often don’t get. Especially for a lot of clinicians they don’t think that giving that explicit validation is that important, but I absolutely think that it is, because they think that it’s kind of implicit and it’s not. So that’s where I would start just, ‘Your pain is real and you are believed’.
It might feel like an awkward thing to do. But especially when pain persists for a really long time, and people have seen multiple clinicians or health care professionals over time, we tend to take on a lot of the blame for not getting better or for not having answers. And our systems kind of set it up to put the blame at the foot of the patients, so when someone comes before you, they’ve had a really difficult journey, usually. If it’s been a years long process, or even months long process, it’s been a difficult journey up until that point and they might not have received any of that validation. It might be getting some of these messages that their pain isn’t real because it can’t be seen, it’s not visualized on a scan or an X-ray or in some sort of test, it’s not able to be objectified in some way. Because it is subjective, it can be doubted. Because it is invisible, it can be doubted. So I think it’s really important to make that validation explicit, and that belief explicit, because so many people have been dabbed and dismissed along their journey seeking care for their pain.
So once that’s happened, what do you think is the next step?
It always starts with validation, and then I think once we, as the person in pain, receive validation and we feel supported and believed and that our pain is validated, and then we as people are validated, that that conveys a sense of worth, that we’re worthy human beings, that we’re valued human beings. And I feel like that opens up some capacity in us to be able to take on some new information. And the current science, what we know about pain right now, is that there is realistic hope that someone’s pain experience can change. And that’s where I would go next: is providing that very realistic hope that that pain can change, because our biology is constantly adapting with our new and repeated experiences. And it’s empowering to learn that we have some control over what those new and repeated experiences are, that could then change our experience of pain too. So it starts with validation, and I think that opens up the door to be able to start seeing our pain in a different way, and then to be able to see that there are possible paths forward no matter how long we’ve been in pain, for that experience to change and get better, and for us to be able to get back to living our lives, and engaging with the things that we value and are meaningful to us, that we can still be who we are even if it’s a little bit differently than it was before. There’s absolute hope that life gets better, and that pain can change, our experience of pain can change.
Yeah cool. So you’re really talking about change rather than cure?
I think it’s a really important distinction. At least it was for me in my own experience because I focused for a really long time on just reducing my pain intensity; I wanted the pain to be gone. It wasn’t until I started understanding pain differently (because the reason I wanted pain to be gone was because I thought that it meant damage; I thought it meant there was some sort of pathology in there that was really bad that had to be found and be addressed), so when I had these notions of ‘pain equals damage’ or ‘pain equals some kind of pathology’, that’s really scary. So of course you want it gone! But when I came to a different understanding of pain, and realizing that it wasn’t so scary, it wasn’t so threatening to my tissues, to my hip (my pain was in my right hip), I started changing my ideas about how to go forward with that. When I knew I wasn’t doing more damage to myself with every painful step or painful movement, I was more able to start engaging with things that mattered to me because I wasn’t so worried that I was I was messing up my hip even more, especially after my surgery. Because it’s really life limiting when you think you’re doing more harm to yourself, or more damage to yourself, or that things are getting worse because the pain isn’t getting better. So for me I had to change my definition of success: and it wasn’t so much tied to reducing my pain intensity, it was more, ‘How do I increase my life around this pain? How do I engage with these activities that are meaningful to me, that make me feel like me?’ Because when we’re in pain we can become so isolated and withdrawn, and so disconnected from the people and the places and the experiences that matter to us and make us feel like ourselves: ‘We are ourselves in relation to others’. We start to lose that sense of who we are in our identity. So being able to engage with things that made me feel like myself; that became my definition of success.
And then through that process of reengaging with life again and having a different understanding of what pain was, eventually over time my pain intensity did go down too. And I don’t think that the same would have happened if I kept focusing on reducing my pain intensity first before I got back to living. Because my life was on hold when I was in that place, you know. I wasn’t engaging with life, waiting for the pain to be gone. So for me I tend to focus more on changing the overall experience, and our overall life that we’re living, and measuring success by the things that we can do, and the things that we’re capable of. Because so much of the healthcare language too is about everything that is wrong with us: all of our disorders, and dysfunctions, and you know ‘tears’, or whatever it might be.
If there was one more thing I could do, it would be just be: Change the language that we use, and do more to build people up and focus on their adaptability, and their resilience, and their inherent strength, and courage, and all of those things that they have, and that they’ve had throughout this process of pain. I think the more that we can do that, and the more that we can focus on living our lives alongside pain, kind of making space for it, our experience of life changes, and then over time our experience of pain changes as well. At least that’s been my experience.
Yeah that’s awesome. If people wanted to learn more about some of this stuff, where do you think they could find more things? What resources might you direct them to?
I’ve had a blog called mycuppajo.com – that’s where I’ve made sense of my own experiences. So that was me writing, trying to make sense of things. Because that’s kind of how I put things together. You can see over the last six years how I learned new information, how I started integrating that information into my life, and in my reflections and insights on that. For connecting with me directly, that’s the best place to go. And there’s a contact form on there too that goes directly to my email if anyone wanted to reach out to me that way.
Some other initiatives that I’m involved in right now too that we should be coming out with some really cool stuff is through the International Association for the Study of Pain (IASP), we have a new Global Alliance of Pain Patient Advocates Task Force, where we’re integrating that lived experience perspective, or that patient perspective, into the study of pain. So that’s a really cool initiative too. And then for any researchers or clinician researchers out there that are looking to partner with patients in research, the Journal of Orthopedic and Sports Physical Therapy (JOSPT) has a really wonderful (I’m totally biased because I’m one of the co-authors on some of the editorials), but an editorial series on partnering with patients in research. I would say those are the big three.
That’s fantastic – so thank you very much for time. We’ll let you get back to your day
Thanks so much and thanks for having me.