Integrating The Lived Experience Of Pain Into Treatment And Research With Joletta Belton

Welcome back to the Healing Pain Podcast with Joletta Belton

Pain is one of the most common reasons for people to seek medical help. It’s also one of the most difficult things to study. There’s no clear way to measure it, and it can vary from person to person. But there are ways we can collect data on pain so that researchers can better understand how patients feel pain and what treatments work best for them. In this episode, Joletta Belton discusses how to integrate the lived experience of pain into treatment and research. Joletta explains how chronic pain affects people’s lives, and how it can be used as a tool to help them heal. Joletta also talks about how you can use your own personal experience with pain to make better treatment decisions for other patients. Tune in now and learn what role you can play to help people in pain.

Watch the episode here

 

Listen to the podcast here

Subscribe: iTunes | AndroidRSS

 

Integrating The Lived Experience Of Pain Into Treatment And Research With Joletta Belton

In this episode, we’re discussing the importance of integrating the lived experience of pain into pain care, pain research and even pain education. My guest is Joletta Belton. Joletta is a writer, a nature lover, and an advocate for the integration of one’s lived experience into pain research and treatment. Her advocacy work around this topic started after years of living with ongoing chronic pain, struggling to find answers or not finding answers, and going through several treatments that failed to provide effective pain recovery.

When her struggle with chronic pain forced her to medically retire from her career as a firefighter paramedic, she returned to school to study human movement with an emphasis on exercise psychology and a focus on pain science. This gave her a better understanding of what pain was, and how important the lived experience of pain is in someone’s recovery. She’s also a patient partner in pain research and she guides the development of different education programs with research teams around the world. In this episode, we’ll discuss the lived experience of pain.

We’re going to approach it from a couple of different angles. We’ll approach it from the clinical angle, a research angle and then finally, a more social justice and disability justice angle to bring in all the different layers of why this is important for us to raise awareness around. I enjoyed speaking with Joletta on this episode. I could have continued to speak with her probably for about three hours because this is a super important topic. Make sure you share this with your friends and colleagues on social media. Without further ado, let’s begin and meet Joletta Belton.

Joletta, welcome. It’s great to have you here.

It’s so great to be here. Thank you.

I’ve been looking forward to speaking to you for some time. I followed a lot of the work that you’ve done in the world of pain care, specifically through lived experience. You have started to take this concept of the lived experience and put it to play in lots of different areas in helping clinicians identify with it in clinical practice and helping researchers bring the lived experience more toward a research focus.

Also bringing in people with pain and the lived experience of pain into all of our systems where we care, identify and treat pain. The word lived experience is thrown around loosely, not just in the world of pain but in the world of mental health, physical health, disability justice, social justice and health justice. What’s your definition? How do you look at the lived experience of pain? How do you define that?

I do think there’s overlap through all of those different areas that you mentioned. I don’t know if I have a definition per se as to how I think of it or conceptualize it in my work. For me, lived experience is another way of knowing pain. Living with pain is another way of knowing what pain is like, knowing what matters during a pain experience, knowing what seeking care for pain looks like and knowing how treatments work or don’t work. It’s this lived way of knowing the work of pain.

How do we engage with health systems when we have pain? How do we deal with our symptoms, emotions, thoughts and behaviors around pain? How do we conceptualize pain ourselves? How do we understand the pain that we are experiencing? What do we think are contributors to it? What do we think is the cause of it? What do we think might help all of these different ways of knowing this big, huge, complex phenomenon of pain? For me, it’s complimentary knowledge to clinical knowledge in scientific research. It’s a way of expanding our understanding or deepening our understanding of what pain is.

We can break down the person into all of their biological systems, behaviors or all of these different things and study those in depth through science, which is valuable. We also need to be able to put all of that back together into a whole person that’s experiencing pain and understand how all of those things are relevant to that experience of pain and how they play out in an experience of pain.

For me, the lived experience is being a person living with pain, what I have learned from that experience and how what I have learned, which are those insights in that perspective, can contribute to the field of pain overall and can complement the research or clinical expertise. I am taking that to not just my experience but many experiences.

My experience is mine alone. It’s going to be different from someone else’s experience. They might have had the same type of injury and surgery or all of that but their experience is going to be different. That is because of all of these other factors that contribute to our experiences as human beings but our pain experience and our healthcare-seeking and treatment experiences as well. That was a long and complicated answer to a simple question.

We’re going to get a little bit longer as we go here. A good point to land on for a minute in your wonderful explanation there is that there’s not just one lived experience. One’s lived experience is going to be based on their life and experiences. Those are their past experiences, their current experiences and many other, as we say in pain care, multidimensional aspects of that experience.

It’s interesting, though. When you look at a lot of pain researchers, mostly but to a lesser extent, clinicians focus on a handful of different types of experiences. When I think about it, pain catastrophizing comes up as part of someone’s lived experience. Fear of movement or what’s called fear avoidance comes up. Kinesiophobia, a similar concept, comes up. Depression and anxiety come up.

Over the course of reading all of that research, it’s wonderful that we’ve identified risk factors. We have some evidence to prove those constructs. Having studied the lived experience and had your lived experience, do you look at that and feel like we have reduced this to a couple of concepts that don’t even start to explore or describe what someone’s going through?

Very much. I also think that those concepts are developed through a particular lens and probably a pretty biased lens. That is based on how we learn about other people and pain within the educational systems that we’re in and then societally, what we learn about things. Everything has a negative connotation.

Whenever we think about pain, psychological factors or behavioral factors, everything is very negative. That skews then also our perception of people living with pain. It makes everything seem challenging and it needs to be overcome. That’s often placed on that individual. They need to start thinking and behaving differently and all of these things to fix their pain. Some of that is probably true. We could also probably learn from them some of the things that they’re doing well and capitalize on those things a bit more too.

We focus more of our research on what is working for people living with pain in those experiences that might tilt the lens. I can’t think of the right phrasing for it but it might change that lens enough to change our research or research focus enough that will change the outcomes for people even a little bit more and have better outcomes than we do.

The experience of pain is so broad and wide. When you look at the qualitative literature on people living with pain, there are distinct themes that come out. It’s not fear avoidance or catastrophizing. It’s not these things. It’s more their interactions with the health system. It’s how they’re treated by health professionals. It’s being doubted or feeling like their pain is invalidated. It’s not having support. It’s more of these social factors that are beyond their control and that often, systems are structure-driven. We don’t focus on that stuff enough.

Maybe if we started focusing on more of those system and structural issues, there would be less fear avoidance, less catastrophizing and less of those negative aspects of pain because they are better supported. They better understand their pain. They’re able to make sense of their pain. They’re working within compassionate systems that aren’t just compassionate towards them but also towards the health professionals working within them too. Pain is complex. Everyone’s experiences are going to be different. We have individualistic and narrowly-focused ways of approaching it that do a disservice to both people living with pain and people working within those systems too.

I appreciate that on a lot of different levels. Those of us who are living in these pain science or pain education vacuums have absorbed the message that pain is both a physical and an emotional component to it. There’s a lot of focus on important psychological factors. They’re part of a biopsychosocial approach. Two things come up for me as you were talking. We’ve studied those things where there’s research evidence to support them and identify them and we should take those risk factors into consideration.

Instead of taking a biopsychosocial approach or even a psychosocial approach, you’re saying that when lived experience comes in, we have to take a sociopsychobiological approach potentially first. That is because the social factors are weighing heavily and we may not necessarily have ways to measure that.

A lot of what you’re doing is starting to tease apart these concepts and say, “They’re important but let’s not place them squarely in the domain of psychopathology,” so to speak. A lot of those psychological factors, like catastrophizing, came from the old construct that was pulled from depression research. It’s basic cognitive behavioral therapy where they’re looking at maladaptive thoughts and how they lead to maladaptive behaviors. We’re applying that or mapping that to people with chronic pain.

I’ve never felt comfortable looking at chronic pain as negative psychopathology. I don’t think it has any place in the DSM. We need to be able to code things so people can get insurance and things like that but we’re looking at it through this lens. I wonder if bringing more of the lived experience takes it out of the psychological lens and puts it more into the social support lens.

When we do think about psychology, it is psychopathological. When we look at the bio, the systems and that kind of stuff, everything is a pathological-based focus. I don’t know what would happen if instead of looking at everything as being pathological or maladaptive, especially when it comes to things like thoughts, behaviors, actions and responses, we took a different approach to look at these things. Maybe someone’s catastrophizing or fear avoidance is incredibly protective and helpful for that person based on the context that they’re in.

Their experiences in life leading up to that point if they’ve had traumatic experiences or negative experiences in the healthcare system, these things are not maladaptive for a lot of people. They’re adaptive. They’re helping them to survive. Could that change over time? Yeah, but that doesn’t mean that it’s maladaptive at this moment.

We put ourselves in a box when we always characterize things that we view as not helpful when we don’t understand that person’s context, experiences and environment. All of that might be adaptive for that person. They might not be here without those behaviors, thoughts or actions. It doesn’t even have to be patients or people living with pain who are not health professionals. A lot of health professionals and researchers live with pain themselves too but they don’t bring their personal experiences to their work. It is because they’ve been told they can’t, they shouldn’t and that’s unprofessional. We need to break down that barrier too.

HPP 303 | Integrating Lived Experience
A person’s context, experiences, and environment might be adaptive for them. They might not be here without those behaviors, thoughts, or actions.

 

It humanizes the research when we realize it’s humans that are experiencing pain. It is not an abstract concept. It’s not an academic concept. It is a real, often challenging, struggle for people, especially early on if they don’t have answers for it that make sense to them. If they’ve been through numerous treatments that haven’t worked for them, it is hard. We need more of that humanizing of pain research and clinical approaches.

I’m a huge advocate of breaking down those barriers between them and us, health professionals versus patients or researchers versus clinicians. Let’s all get into a room together, talk like humans and figure out better ways forward. It sucks for everybody. We’re not doing a very good job of even implementing the research that we have. It’s good for science or society in meaningful ways that people can act on.

Clinicians are often hamstrung by insurance systems, the workers’ compensation system or whatever it might be. They are not able to help patients in the ways that they would like to because of these structures policies and systems that are in place. The way that we’re going about things could benefit from all of those groups coming together and situating it to truly being patient-centered.

We pay a lot of lip service for patient-centered care but most of our care is system-centered. It’s health system-centered, insurance-centered, hospital-centered or whatever it might be. It is not patient-centered. How do we move that needle to be what we aspire to be, which is truly patient-centered care? We need to put those people and patients at the center of how we explore questions about pain, treatments for pain, policies about pain and that sort of thing.

When I train professionals, most of them are physical therapists but I train other professionals too. They say to me, “How do I bill for this? How do I code for this,” or, “There is no code for this. I can’t find a code for this.” I wish I had you a couple of years ago. It’s that idea of you’re supposed to be providing patient-centered care and realizing that you’re also working within a system that is 100% antiquated.

In a lot of ways, what is maladaptive and dysfunctional is not someone’s thoughts, behaviors, attitudes and beliefs. It’s the system that they’re embedded in. I tell professionals, “If you’re looking for this special code to treat chronic pain, it doesn’t exist in physical therapy, occupational therapy, psychology social work and medicine. The system that you’re trying to embed these new and wonderful skills in is broken. You’re trying to promote health in someone and help them cope more effectively with their lived experience from a system that is fragmented and busted in lots of different places.”

Part of that system was created on that pathology model. You identify pathology and take it out or target it with some kind of medicine or surgery and that’s it. That’s what medicine is. That’s not what health or healthcare is. We’re still stuck in that model.

Ultimately, it’s still a biomedical model. Some places are popping up and they’re saying integrative pain care and all these other things. I’m like, “It’s still a biomedical model. You’re trying to put a round peg in a square hole in a lot of different ways.” The lived experience is for the person with pain so they can start to understand their pain, cope with their pain and have a different experience around their condition. We hope that leads to pain recovery.

The lived experience is also for practitioners so they can more fully understand what pain is. If I read between the lines, what you’re saying is that empathy alone is probably not enough to be an effective practitioner when you’re working with people who have a certain experience. If you’re working in a clinic and let’s say you’re seeing 10 patients a day, you may have 10 different pain experiences that you’re interacting with as a professional.

There are a lot of universal things that we can learn from people with lived experience of pain that are done through qualitative research but it’s more powerful when patients are included as partners in the research, whatever that might be. That could be in basic science and preclinical research as well. We learn from those perspectives throughout the research spectrum. We can learn some things that are relatively universal when it comes to patient care. Some of them, I mentioned earlier. Many people living with pain feel invalidated or disbelieved or that their pain is doubted.

It's more powerful when patients are included as partners in the research, whatever that might be. Click To Tweet

I come from the experience of being in the worker’s compensation system. It was such an adversarial and challenging system to be in. You feel like your integrity as a human being and your truthfulness are constantly being challenged. My pain was consistently doubted by the system, which is made up of people. We can all challenge these systems. We all work within them. When your pain is doubted like that and you feel like you have to prove it over and over again, your worth as a human being is doubted. You’re having to prove your worth as a human being.

We’re coming to the PT clinic with all of this weight on our shoulders too that we don’t even know we’re under sometimes. We’re in a new clinic with a new clinician that is seeing us for the first time without knowing our history of interactions with the health system, which might not have been positive. There are so many things that can be done within that encounter that can set it off on the right foot. That validation and explicit belief in that person that even if you do not know the way forward in that initial encounter, that’s okay. You have to believe that person and let them know that they’re believed, validated and all those things.

A lot of people think that it’s implicit in healthcare and it’s not. I saw a lot of wonderful clinicians during my years of actively seeking care for my pain. All of them were good people that I knew wanted to help me. Being within that system, I still felt so doubted and disbelieved because the person who was in charge of my care wasn’t any of those people. I feel like there are some universal things that we can do to improve those ten visits in a day. That’s communication, being a human to another human and having a more collaborative approach to care with the caveat that not all patients want to collaborate in their care. They want to be told what to do. That has to be an acceptable way forward too.

If we’re having truly patient-centered care, we can’t try to fix that want in them either. Potentially, that could change over time through relationship building, communication over time and that sort of thing, even when it comes to the implementation of some of the stuff that we’ve learned. Those are things like pain science education, how that’s integrated into care, how exercise might be presented to someone and what an exercise program, a meditation program or whatever strategies clinicians might want to be implemented in their practice. Those strategies and types of programs can be co-developed with members of the community that are living with pain. They’re probably going to land better with those people if they have some input into those programs overall.

We know that as great as pain science education is, even the best numbers are a number needed to be treated. That means that most people still aren’t experiencing a benefit from it. We need to do something to change what we know can work and how that can be more successful for more people in the real world. That involves bringing the real into those processes earlier, whether that’s guideline development, treatment program development or even earlier the research itself.

HPP 303 | Integrating Lived Experience
We need to do something to change how what we know can work and how that can be more successful for more people in the real world. That involves bringing the real world into those processes.

 

Can we talk about the worker’s compensation system for a moment?

Yes.

I know all the practitioners are reading this and cheering you on because you distinctly stated that the person in charge of that whole process oftentimes is not a licensed health professional or maybe is a health professional but they’re more on the administrative side. There’s a disconnect between the person providing the care and the person making the decision about the length, duration and intensity of the care so to speak. That’s the first thing that I want to thank you for.

The next thing is in putting this into the context of lived experience. I’ve worked with people in the worker’s compensation system who’ve been injured on the job on how to claim. I’m not sure if it’s intended to do this or if anyone’s looked into this but since there’s a change in someone’s social role quite dramatically, like one day they’re working and the next day, they’re not, your social role changes from being an employed “productive person,” which is a big thing in our society, to not being employed. There’s this almost instantaneous change in someone’s sense of identity. Maybe you can comment on how that change impacts their lived experience because that’s what we’re talking about.

That is such an important part of the pain experience that we don’t address it much or enough. It’s interesting. We were talking about how so much is about the individual psychological experiences and we focus on fear avoidance, pain catastrophizing and all of those things. We don’t focus on identity, which is the core of all of us whether we live with pain or not and how much that identity can be disrupted by a pain experience, even an acute pain experience.

Don't focus on identity, which is the core of all of us, whether we live with pain or not. That identity can be disrupted by a pain experience. Click To Tweet

If you’re an athlete, whether pro or recreational, you often identify yourself by those things. Before my pain experience, I would’ve said I’m a firefighter. To me, that encapsulated everything that I was. You knew who I was when I told you I was a firefighter. I was a lifter, a runner and all of these things were disrupted by this pain experience. I was like, “What am I left with?”

Much of my life was my job and all of these physical activities that I did in support of my job but also because I liked doing those things too. All of that is disrupted in pain. Cass Macgregor published a poster at the end of 2022. It’s an award-winning poster on acceptance. It’s called An Ecosystem of Accepting Life with Chronic Pain. Identity disruption was a part of that. I did some work with Fran Toye, A Healing Journey with Chronic Pain, which was posters based on meta-ethnography as well. Identity disruption was a huge part of that as well.

Across the qualitative literature, this identity disruption is a part of that. We don’t address that very much. One area where this is addressed better than in most places is in elite sports or sports psychology. It’s bringing in sports psychology. Realizing injured athletes not being a part of their team and not being able to play their sport is challenging, difficult, distressing and life-upending for them. They’re doing a better job of supporting athletes that are taken out of the game for whatever injury reason. We need to apply more of that in the general population too. A lot of us identify by our professions.

In some way, you’re taken out of the game of life.

You’re taken away from all of the things that you enjoy doing, the groups of people that you used to hang around with or the activities that you used to engage in on a day-to-day basis. Your life is so disrupted and upended. It can be exacerbated in the worker’s compensation system, which often takes a long time.

In my experience, I once went four months without receiving any care at all despite daily phone calls and begging for any kind of treatment. It’s so much of our conflict. You’re investigated that your claim is real before providing care, which makes whatever it is that you’re experiencing that much worse. You’re not even getting bad information when you’re not seeing anybody. You’re not getting any information. No wonder people catastrophize. If you’re left to your devices, you have no idea what’s going on and you’re not getting any support or care, what else are you going to do but catastrophize?

Even with the word claim, you have to fill out a claim and then someone judges that claim and decide whether your pain experience is legitimate or not. They’re like, “Do you legitimately deserve or need services for your pain?”

That puts so much on your value as a human being. You’re not valued as a human being. I know from my experiences, my self-worth plummeted being in the work comp system and experiencing that doubt. It was so adversarial. You feel like you’re fighting. When you hear people talk about being in the work comp system, they’re always fighting the system. It’s always a fight. It’s never good.

In my experience in the work comp system, I ultimately had reconstructive surgery on my hip. My surgeon was fantastic. He was a wonderful human being. He always made me feel heard, believed and listened to and my pain was real. Even after surgery, when I was still having pain, he never once made me feel like I was to blame for it or anything. He is a fantastic human being.

He was the one that told me to get out of the work comp system. He said, “Get out of it. You’re smart enough. You’ll be able to figure out what you need to do on your own because they will not support you.” Everything that he thought would be helpful, they denied. Rather than me fighting it over and over again, I would get out and figure it out. He was like, “I know that’s terrifying but get out and figure it out on your own. You’re never going to be helped by them.”

What a terrible health system for people to have to be in. I’ve been corrected before by health professionals saying work comp is not the health system. I’m like, “Yes, it is.” If you’re in work comp, the only healthcare that you can get for that injury, in the US at least, is through work comp. You cannot see your primary care physician about that injury.

Work comp is a part of our healthcare system. In some ways, it’s very entrenched depending on which state or jurisdiction you’re in.

It would be interesting to see even outside of the work comp system what would happen if we focused more on those identity issues, the social role disruption and all of that with pain. That is one of the most distressing aspects of pain. It is not being who you were anymore and not knowing whom you’re going to be with this pain that, for many people, have not yet made sense of or know what to do about. That’s crucial to so much. That’s something that we’ve looked into enough.

One of the most distressing aspects of pain is not being who you were anymore and not knowing who you're going to be with the pain. Click To Tweet

Thanks for going on that little tangent. I wanted to make sure we touched on the worker’s comp system and the role of identity. It’s important to bring it back to the lived experience. We’ve talked about the lived experience through the lens of the person with pain. I’m encouraging people to say instead of patients with pain or patients, they’re people with pain. That’s an important distinction to make. They’re not patients. They’re people with pain. I’d love to have that language used more.

That removes some of that us versus them barrier too. We’re all people.

Oftentimes, all of us have pain or have had pain at times. We talked about the impact of lived experience on the clinician. Looking at research specifically, oftentimes, when you bring in lived experience in the realm of research, they’re qualitative studies. They are different from quantitative research. Quantitative research is looking typically at numbers or how we can measure something objectively.

In qualitative research, we’re looking at gathering a bunch of data together. Typically, that data is reports from people or patients and then seeing themes that occur so to speak. Does the lived experience extend beyond qualitative research? Where would you like to see more of this instituted in our evidence-based hierarchy?

A lot of qualitative research, even though it is getting at more of the lived experience of pain, is usually still done on people. Qualitative research is made stronger when patient partners or people living with pain are a part of the research team too. It’s formulating what question is going to be asked in doing the data collection and data analysis, developing whatever conceptual model might come of that work and then getting that information out into the world.

We need more lived experience perspectives or people living with pain on research teams across the research spectrum from basic science and free clinical work to implementation science. People with pain are bringing not just their lived experience of pain to the table but all of the qualities, skills, talents and other experiences like work, education or life experiences to those collaborations as well.

HPP 303 | Integrating Lived Experience
Science and people with pain are bringing not just their lived experience of pain to the table, but all the other experiences like work, education, or life experiences to those collaborations as well.

 

I am a part of the Global Alliance of Partners for Pain Advocacy through IASP. We had a booth at the World Congress on Pain. I was so encouraged by the number of basic science researchers that came by to talk about how to better integrate people with lived experience into their work. Those conversations are often, I shouldn’t say the most interesting. I’m going to share a little bit of my background to contextualize that too. When they talk to people with lived experiences of pain, they understand some of the shared experiences that we have.

In one conversion, a number of us with pain also had gut issues. They were different gut issues for all of us but we all had gut issues. A lot of us had tinnitus. They’re ringing in your ears, which I also have. I have had other vestibular issues like vertigo. Why are these things so common in people that have chronic pain when an entire group of us that are there have some of these shared experiences? The basic scientists are going, “Why is that? Are there shared mechanisms?” They’re starting to think at more of that reduction as the biological level. The questions that they’re thinking are coming from people with lived experience of pain.

Our experiences can also play a role in what types of questions are asked at a mechanistic level. Learning from people with pain can improve research across the spectrum. At the start of this answer, people are bringing all kinds of skills and qualities to research. In my educational history many moons ago, I was in a neuroscience PhD program and I worked in an animal lab. I’ve done basic science research on animals. It was neuroscience. It wasn’t pain. I didn’t know I was later going to have this chronic pain experience where it would have been helpful. It was attention and memory. I’m also bringing that experience to whatever partner group or research group that I participate in too.

Other people are bringing healthcare experiences. They might have worked in the healthcare system before their chronic pain experience or their pain experience. They might have worked in administration, education, communication or media. They have all of these skills that can help bring this research to life in ways that the researchers themselves might not be able to do on their own. They bring histories in engineering, statistics, mathematics and all sorts of things that can complement a research team in ways that are beyond them bringing their pain experiences. It’s bringing that human experience to the group and contextualizing that research through their lived experiences in a different light.

Patient partner is used a lot in this work, which I also have issues with. They’re also people. I’m only a patient when I’m in my doctor’s office or at the physical therapy clinic. I’m not a patient in my day-to-day life. I’m not a patient now so I always struggle with that term. People with the lived experience of pain can be partners in research across the spectrum from basic science to implementation science and everywhere in between.

Involving people with pain in the research, in some way, does it recognize people who marginalize and resist us further marginalizing people with pain? There are a lot of people with pain who come from marginalized groups. I think overall that people with chronic pain are marginalized as a whole in general. We can go down and dig into various groups, like women, LGBT, New Americans or immigrants and things like that. I wonder if this starts to bring that voice in and say, “Come out from the margins and come to the center.” I’m interested in what you have to say and what your experience is.

It’s important to do that. I don’t think we’re doing it well enough now. When you look at the patient partner space, it tends to be White and in high-income countries. Across the research spectrum, it’s still true. In the patient partner space or the person with lived experience space, that’s changing. It’s up to us to change that and look around the room and say, “Who is missing?” It is up to us to ensure that we’re including more of those historically excluded voices at the table or in that research team.

We can all raise our hands and ask, “Why don’t we have someone with pain here? Why don’t we have someone who may have had a racialized experience or experienced homophobia, transphobia or something in their care?” That’s going to impact their pain experience too. We need to learn from those experiences.

The US Association for the Study of Pain published a three-part series on an anti-racism framework for pain. It is important for us to start thinking about it more broadly too. We still live in a society that treats people of color, people who are Black, indigenous people and people who are of Asian descent differently than White people in a lot of healthcare systems. They are people who are often taught in medical school false things that have been proven false about people who are not White. We need to do better, in general, in research, in clinical care and even in the patient partner space or the person with lived experience space to ensure that we’re including people that have many intersectional experiences and not just White people that live with pain.

HPP 303 | Integrating Lived Experience
It’s important for us to think more broadly. We still live in a society where people of different races or colors from “white people” are treated differently.

 

On that note, if the audience has not read it already, all of you should go back and read the interview with Lisa VanHoose who’s a physical therapist. She did an amazing interview with me on Racial Embodiment and White Body Supremacy in Pain Management. I got some emails from people that were excited that I did that episode. I got other emails from people who were very upset with me on a personal level that I’m contributing to a conversation that they don’t necessarily agree with.

I’m like, “These intersections are important to talk about because they have an impact on the pain that someone feels. They also have an impact on someone’s experience because it is a lived experience.” Racism, homophobia, transphobia, or sexism overall does have an impact on someone’s health. Pain is related to your health. We talked about that whole worker’s comp piece before. There also seems to be a bit of a disability justice movement in bringing someone’s lived experience into the conversation.

Much of the environments that I’m in, we still bring up the phrase Nothing About Us Without Us. That’s why it’s important to include lived experiences as a way of knowing in all of these areas, like research, clinical practice and our general understanding of pain and education. Nothing About Us Without Us comes from the disability rights movement in the ‘80s. That is intersectional. A lot of people with pain live with disabilities. A lot of people with various disabilities live with pain. It’s very much a part of this overall.

When you were mentioning that lived experience across social justice issues and disability rights issues, to me, they’re all intersectional. You can’t separate them because these issues like sexism, racism and all the isms and phobias have an impact on our lives and our experiences. They have a huge influence on those things. If we don’t start acknowledging that and addressing it, it’s going to be hard to fix individuals.

We’ve learned that we can’t keep putting everything on the individual, which then leads to blame and stigma when they don’t get better when we think they should have. If we don’t address the contexts, environments, systems and structures that we all operate, live, work and seek care within, it’s going to continue to be a struggle to make a dent in chronic pain. Those things matter. They can’t not matter. If you’ve lived through experiencing sexist care and you know when you’re being treated a certain way because of whatever identity you hold, then we need to start changing some of those things if we want to help people with pain. To me, there’s no other way about it.

When we were talking about the work that I do, so much of my shift in focus has been more toward this ethical event. I see it as an ethical issue, not just a justice issue. Justice is a part of ethics. We forget that too. Bioethics has four main pillars. Justice is one of them but it’s not one we often talk about and not often in this way. It’s important. The way forward has to be through justice to improve our health systems. Those who have been historically excluded and marginalized should be prioritized. If we can do better for them, we’ll do better for everyone.

Whether it’s a physical therapist or another licensed health professional, what can they do to start to synthesize this idea or synthesize the understanding that pain is a multi-dimensional lived experience versus a condition, disease or pathology.?

The more they can do to learn from people with pain outside of the clinic is important because that’s a much different context and environment. When someone is seeking your expertise and care for an immediate problem that they have, they’re also in a different place than someone who can reflect on their experiences. They are in a different place than someone who can synthesize their perspectives and insights in a way that might be valuable for a clinician or a researcher who is working in this space.

That can include things like reading fiction. Read some novels because writers have been trying to tell the truth about the human experience for centuries. I often joke when I started to get better, which didn’t mean that my pain was gone, that it was some combination of pain science, Buddhist philosophy and 19th-century literature. Even though it was written in the 19th century and most of it by a bunch of old White dudes, I saw myself on the page. There was human suffering. The 19th century seemed pretty miserable. There was a lot of human suffering in those novels. It helped me to contextualize my experience.

I am not unique in my suffering or maybe I’m unique in it but I’m not alone in my suffering. People have been trying to figure out life being human, pain, loss, grief and all of these things for a long time. I’m a part of this continuation of humanity. I’m connected to all of this humanity and that’s helpful. With Anthea Taylor and the narrative medicine work that she does, she encourages people to read more literature, like fiction. Margaret Atwood, I follow her Substack. She said, “Fiction is where we tell lies to get at the truth.” It was something like that.

Learning from those human experiences, taking them on board and not discounting them as a way of knowing is so valuable. That’s what we do. Our lived experiences are not even in the evidence hierarchy. We are excluded from the evidence hierarchy altogether. That does us all a disservice because it’s a valuable way of knowing that can help us to better understand pain, how to help people with pain or what to do about the pain. I would say take it out of the clinic. People probably have friends and family members. Talk to them. Have conversations.

HPP 303 | Integrating Lived Experience
Our lived experience is a valuable way of knowing what can help us better understand pain.

 

It’s been great speaking with you. I appreciate your perspective on everything you’re doing. You’re probably one of the early people that I’ve started to work the lived experience into pain research. I love how you’re straddling all these different areas. Few people can straddle into research, talk to clinicians and talk to people with health conditions or people with pain. I appreciate the work that you’re doing. If people want to follow you and learn more about your work, where can they find you?

I’m not on social media anymore, so the best place to find me is my Substack. It’s MyCuppaJo.Substack.com. I’m still MyCuppaJo, which is what my social media handle used to be. I’m on LinkedIn if anybody’s there. I gave up all Facebook, Twitter, and all that kind of stuff.

Good for you. It’s a good way to promote some time in life. You can google Joletta Belton and find lots of great information with regard to MyCuppaJo. If you are someone who lives with pain or a practitioner that treats people with pain, please share this episode on LinkedIn, Facebook, or Twitter. Tag me on Instagram. That’s the primary social handle where I am. You can find me @DrJoeTatta on Instagram. I’ll be sure to be social with you there and tag you back. Thanks for joining me. I’ll see you in the next episode.

 

Important Links

 

About Joletta Belton

HPP 303 | Integrating Lived ExperienceI am a writer, nature lover, and advocate for the integration of lived knowledge into the study, research, and treatment of pain. I came to my advocacy work after years of living with ongoing pain, struggling to find answers, and ‘failing’ all the treatments. I was forced to medically retire from my career as a firefighter paramedic, which was life and self updending. I returned to graduate school to study human movement, with an emphasis on exercise psychology and a research focus in pain science (which complemented my former grad school experience in neuroscience, many a moon ago!). I came to understand my pain – and what to do about it – differently, and began sharing what I learned on my blog. In addition to writing, I am also a patient partner in pain research, guideline development, and education with teams around the world.

 

 

 

Privacy Policy

Effective Date: May, 2018

Your privacy is very important to us. We want to make your experience on the Internet as enjoyable and rewarding as possible, and we want you to use the Internet’s vast array of information, tools, and opportunities with complete confidence.

The following Privacy Policy governs the online information collection practices of Joe Tatta, LLC d/b/a joetatta.co and www.backpainbreakthrough.com ( collectively the “Sites”). Specifically, it outlines the types of information that we gather about you while you are using theSites, and the ways in which we use this information. This Privacy Policy, including our children’s privacy statement, does not apply to any information you may provide to us or that we may collect offline and/or through other means (for example, at a live event, via telephone, or through the mail).

Sign Up for the Integrative Pain Science Institute’s Weekly Newsletter

Enter your email and get the latest in pain science, podcast episodes,
CEU opportunities, and special offers.

You have Successfully Subscribed!

We only send you awesome stuff!