Can you live a full life with pain? Arthritis Life Podcast Episode 5.

Episode at a glance

On this episode of the Arthritis Life podcast, Dr. Bronnie Lennox Thomspon shares her unique lens as a long term chronic pain patient, world renowned pain specialist and occupational therapist.

Dr. Lennox-Thompson discusses how she integrates ACT (Acceptance and Commitment Therapy) into her personal life and practice as an occupational therapist. She and Cheryl explore how people can life a full life despite pain.

Cheryl & Bronnie are both occupational therapists who live with chronically painful conditions. In this episode, Bronnie shares her unique perspective on how one pursue a full life *despite* pain, rather than seeking solely to eliminate pain. This episode is a must listen for both patients and practitioners.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in October 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.

Speaker Bios

Dr. Bronnie Lennox Thompson is a pain specialist, clinical instructor, and occupational therapist who lives with chronic pain from fibromyalgia.  She has a passion to help people experiencing chronic health problems achieve their potential. She has worked for 20 years in the field of chronic pain management, helping people develop “self management” skills. Bronnie completed her Masters in Psychology in 1999, and recently earned her Doctorate in Psychology in the mid 2010s. 

Cheryl Crow has lived with rheumatoid arthritis for seventeen years and has been an occupational therapist for seven. After originally working in pediatrics, Cheryl formed the online education and empowerment company Arthritis Life to fill a need for accessible, engaging patient education and self-management resources. 

This interview was conducted on May 17, 2020.

Episode breakdown:

• 02:12 – Bronnie’s definition of Occupational Therapy
• 05:10 – Occupational Therapy vs Physical Therapy for chronic illness
• 6:05 – How Bronnie got into working in the chronic pain space
• 07:05 – Exploring how the health professional’s job is not to “fix” the pain or fix the person
• 9:30 – Bronnie’s experience as a patient with Fibromyalgia and how ACT (Acceptance and Commitment Therapy) helps
• 10:50 – How Bronnie learned to live alongside her pain, rather than focusing on making pain go away
• 16:20 – Bronnie’s partner’s experiences with Ankylosing Spondylitis
• 19:27-   Discussion of medications for inflammatory autoimmune conditions (rheumatoid arthritis & ankylosing spondylitis)
• 21:30 – Description of Bronnie’s Fibromyalgia symptoms
• 25:30 – Cheryl & Bronnie discuss what it’s like to be “Sleep divas”
• 27:12 – Discussion of sensory hypersensitivity and fibromyalgia
• 30:50 – The first time a doctor told Bronnie there is “nothing more I can do” about her pain, and why she’s grateful for that honesty
• 31:26: Lessons about Pain that Bronnie teaches to fifth year medical students
• 36:00 – Why is it better to seek “movement opportunities” than to push a one-size fits all exercise approach
• ·42:10 – Why does activity pacing and energy conservation not work for some people? Cheryl & Bronnie share notes on their lived experiences.
• 43:07 -Dr. Bonnie describes her 6 week group program that uses an ACT (Acceptance and Commitment Therapy) framework for people who’ve had chronic pain.
• 47:30 – Daily Activities of people with invisible illnesses and conditions (including pain)
• 50:25 – Why Bronnie’s has her participants set “missions” instead of goals
• 53:30 – The unique challenges and benefits of mindfulness for people who’ve had chronic pain
• 54:32 – Discussion of the “Choice Point” during behavior change
• 56:52 – How is sleep affected by chronic pain, and how can patients adapt?
• 1:00:05 – Who’s on the team of someone with chronic pain, and who’s the real expert on the patient’s daily life?
• 1:02:25 – Sex and intimacy with chronic pain
• 1:06:15 – Making a self-management plan: last step in her 6 week program. How to make the patient in the driver’s seat of their daily care.
• 1:07:00 – How to manage people’s unsolicited advice
• 1:09:00 – The benefits of a “Can do” card for the patient to carry with them after the intensive educational training
• 1:10:52 – Brief discussion of Cheryl’s experiences going through ACT-informed exposure therapy for claustrophobia-induced panic attacks, and how that relates to the experience of improving one’s ability to “sit with” discomfort.
• 1:13:50 – Reflections at the end of the 6 week program, exploration of how participants learn that their pain is something they can live with, and uncertainty is also something that can be tolerated.
• ·1:16:15 – Living a meaningful life with chronic pain and learning to let go of certainty
• 1:20:08 – What Bronnie’s 1:1 Occupational therapy sessions look like (as compared to her small group sessions).
• 1:22:30 – What Bronnie wishes she had been told earlier in her chronic pain journey
• 1:23:05 – What is wrong with waiting for pain to be gone before pursuing a full life? What can we gain by focusing on what’s possible *today* rather than waiting for a less painful tomorrow which might not come?
• 1:26:15 – Brief discussion of acceptance in the context of neurodiversity in addition to chronic pain.
• 1:28:30 – Discussion about some problems with social media groups.
• 1:29:35 –  The importance of remembering how unique each person’s experience of pain is.
• 1:31:04 – Expectations versus reality: how it’s hard to calibrate expectations while living with chronic pain or chronic illness. What’s wrong with “problem solving” your chronic condition.
• 1:32:30 – Where you can find Bronnie!
• 1:34 – One more plug for ACT for OT!

Additional links discussed in this episode:

• Arthritis Life Podcast, Practical Tips & Support – Cheryl’s Facebook group
• Dr Bronnie’s HealthSkills Blog
• Acceptance and Commitment Therapy: Russ Harris free resources 
• Acceptance and Commitment Therapy -detailed information for clinicians
• The Challenge of Pain  book
• Exploring Pain: Research & Meaning Facebook group
• ACTivating Occupational Therapists – Facebook group for OTs

Full Episode Transcript:

Cheryl Crow (00:00:00):

Hi everyone. Today I am talking to an amazing occupational therapist who is also a fibromyalgia patient. Her name is Dr. Bronnie Lennox Thompson. She has incredible insights for anyone living with chronic pain, whether it’s from arthritis or any other cause. And I can’t wait to share her journey with you and for you to learn from all the insights she’s had. Let’s get started. Hi, my name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, to how to respond when people say don’t look sick. Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness, no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.

Cheryl Crow (00:01:15):

So Dr. Bronnie will you please introduce yourself. Tell the audience a little bit about yourself.

Dr. Bronnie (00:01:19):

So as soon as I open my mouth, you will know that I am not from the United States. I’m from Christchurch, New Zealand. And yeah, very, very fortunate to be living in New Zealand in these times, because I think we’ve got down to single digits. Well, we’ve had days without anybody with COVID-19. So we’re feeling really fortunate. Grateful that we’re a little tiny island in the bottom of the world. Nobody knows where we are. Yeah, so I am an occupational therapist and I have a psychology degree and I’ve worked in pain and pain management most of my career. I started off by looking at people returning to work and it just so happened that most of the people that I was working with, pain was the main problem. And so I got fascinated by pain and it’s kind of taken over.

Cheryl Crow (00:02:12):

Yeah. you know, just in case anyone watching this doesn’t already know what occupational therapy is. Do you have like an elevator speech that you like to use, or how do you, since you work with the chronic pain population, how do you normally introduce and describe occupational therapy?

Dr. Bronnie (00:02:31):

Um occupational therapy is about helping people do what’s important in their lives. That’s the doing. So we’re interested in the practical, everyday little things that make up being a human being. So we are about routines and habits and getting dressed and doing the grocery shopping and going to work. All the basics. That’s what occupational therapy is about. And I think that’s because we believe that in doing, we’re expressing who we are. And by expressing who we are and how we do, we continue growing.

Cheryl Crow (00:03:08):

Wow. That was really good. And it actually sounds better with the New Zealand accent too. I’m like, ooh, it sounds so… That’s beautiful. I love that definition. And is there a particular reason you went into the field of occupational therapy out of curiosity?

Dr. Bronnie (00:03:25):

You’re going to laugh. So when I was in my senior form, which is our final year of high school, I applied for physio therapy for occupational therapy and for a social science degree. And I got into all three of them, but the OT one came in first. So I didn’t think I was going to get into anything. So I immediately accepted it and went, and then I got into the other two, but I was actually really grateful that I chose occupational therapy. Not because nobody knows what we do because nobody can describe occupational therapy, but because I think as a physio, I would’ve been one of these militant, “you will do it this way and that.” I’d be horrible.

Dr. Bronnie (00:04:19):

Whereas I think what I really love about my profession now, and I’ve had moments not liking my profession at all, is our versatility, our passion for measuring people where they’re at and moving at their pace. That’s our job. And it’s not so much about the end result as partly our partnering in the process, or helping people work out what works for them.

Cheryl Crow (00:04:45):

I love that. Yeah. That’s something I love about occupational therapy as well. And to differentiate it from PT, sometimes I’ll say that, you know, the treatment plan from the skin in like the muscles in for the same injury might look the same for physical therapy, but for OT, it’s what that muscle is doing in the person’s world. You know, what are you… It’s gonna look different, you know, if five different people break their elbow and have to rehabilitate if one’s a taxi driver and one’s a chef and one’s a teacher and one’s a computer programmer. We’re going to do something totally different, you know, with each one, which makes it really creative.

Dr. Bronnie (00:05:22):

Yeah. Yeah. And we’ve got to be really flexible because we’re getting involved in people’s lives and [inaudible…] on living their life. It’s not my job to step in and say, “you’ve got to do it this way.” That doesn’t work. So it’s all about how can I help you express who you are and the way that you do stuff.

Cheryl Crow (00:05:42):

That’s so great. [Such a good word for everything.] I know. I love it. No, it’s so practical. I mean, honestly, it’s better than I even thought it would be when I went into the field of occupational therapy. So it’s been that’s been fun for me to kind of discover. And how did you find your way into the pain world? I’m curious. ‘Cause It’s not usually people’s number one. You know, they don’t go into OT… Usually they want to work either with like cute little kids or people with strokes, you know, classic areas.

Dr. Bronnie (00:06:13):

Yeah. I started I worked in older person’s health and I really, I loved doing that and I loved group work because that was a really important part of, you know, older people relating to one another, learning from one another about what might work for them. And also the process of occupation, doing things together is such a human thing. I got into the pain because I was working in work rehabilitation and most of the people that I worked with, persistent pain was the main problem. There was a barrier to getting back into work of any kind. And so I started to explore what it is about pain that gets in the way. And so I got fascinated by pain as a whole area. And it’s kind of become the thing that I’m most interested in and it continues to absolutely fascinate me.

Speaker 2 (00:07:11):

It’s intellectually challenging. There’s so many developments, so much to learn and it’s about the whole person. You can’t treat pain. You are treating the person who’s living with the pain and helping them develop a life that allows pain to be present without necessarily trying to get rid of it or just, you know, starts to be who you are.

Cheryl Crow (00:07:36):

Yeah. And it’s such a counter-intuitive first proposal to say, wait a minute, no, I’m going to go to the health professional ’cause they’re going to fix me and make my problem go away. It’s like you have a sore tooth, you go to the dentist, you know, they may get better, but with pain I’m wondering how to form this into a question… But I can hear it ’cause I have a approach that I love as well that you know way more about than I do, which is A.C.T. Or acceptance and commitment therapy. I can hear that in your description of pain. So how did you get introduced to ACT as a therapeutic model?

Dr. Bronnie (00:08:18):

That’s really interesting. So I’ve worked for some years in a multi-disciplinary interprofessional program. I worked with physiotherapists, psychologists, medical practitioners, nurses, social workers, and other occupational therapists. And so I was really trained in C.B.T. [Okay. We’ll just describe CBT as cognitive bEhavior therapy.] Yeah. Cognitive behavioral therapy, where we’re looking at people’s thoughts and beliefs about what’s going on and help them rethink through, check out the validity, the accuracy of those statements, and then we try to help people develop a more helpful way of viewing what’s going on. Uand it’s related to behavior as well. So we do lots of goal-setting and planning and prioritizing and that sort of thing. And then I started to read some more around,uacceptance and commitment therapy from,uLance McCracken and Kevin Val, both really prominent researchers.

Dr. Bronnie (00:09:22):

And I started to see that, well, from my own experience, I have depression and I also live with fibromyalgia. Didn’t realize it was fibro until quite a few years after I’d been living with it because I just thought it was grumbling ol’ back pain in every other part of my body. I then realized that, you know, my thoughts about my pain were actually quite accurate. If I do this, I’m going to hurt. That’s not an inaccurate or maladaptive thing. That’s a reality for me. If I do something that’s out of the ordinary, I’m going to hurt and I might need to change how I go about my next step. It was CBT telling me that that was bad thinking, unhealthy thinking, wrong thinking. But it’s my life. So I learned with ACT, that what I want to work out is, “is this helping me to be and do the things that matter for me?”

Dr. Bronnie (00:10:26):

And so I realized that actually it isn’t helping me. I can look at things differently. I can view my pain as different. And I guess that by that stage, it was about probably 10 or more years ago that I learned… Or well more than that, actually I’m thinking about 1990s. So I started to realize that I had been learning how to live alongside my pain as part of who I am for quite some time. And seeing that despite that, I was doing pretty much the things that mattered to me and it was okay for my pain to fluctuate if it was worth it. So some of the things I really love to do: I like to garden, I like my dog, I like to go carry a heavy camera and take photography out somewhere in the wilds of New Zealand. And these things flare my pain up. And I could sit at home and not do them and feel bad and grumpy and not live, or I could decide, yes, I can do these things and I’ll get a flare up, but it’s worth it. So, for me, it was a lived experience of: there are times where I do things that I know are going to flare me up, but it’s worth it because I did this wonderful thing. I sort of realized that trying to control pain is impossible. My pain will do exactly what it wants to do. I can control my life and I can change the way I do a lot of things, but sometimes I’ll be compromising things that really matter to me, like being spontaneous. I’m not a great planner. I like to do things with a bit of spontaneity and what I’ve learned is that if I live my life according to what my pain tells me to do and trying to control my pain, I’d end up having this [inaudible…].

Dr. Bronnie (00:12:35):

It’d be like living by numbers. Do you know paint-by-numbers pictures? And they almost look like a real painting, but they don’t. They look artificial. And that was what my life would have been like, have I, you know, do all this planning and all of this stuff to control my pain. It would be a life, but it wouldn’t be my life. It wouldn’t be the way that I want to be. So I thought it’s making it much more me and I can make the decision in the moment as to what I want to prioritize right now. Sometimes, over these last couple of months while we’ve been dealing with COVID, I have been feeling really sweaty and so I lounge myself to not do on a particular day because I really need to. Not so much for pain, but because the effort of thinking and planning and organizing can feel overwhelming. And so sometimes it’s quite nice just to go with it. Other times I can push myself to do something that matters to me, like play in my garden or I’ve been raking up the leaves ’cause it’s autumn here, and doing things that are important to me. And I can just go with it and I can choose in the moment. It’s so much more vibrant and permissive. I don’t have these hard and fast rules. I don’t want to live like that.

Cheryl Crow (00:14:12):

And from my experience too, you know, having a painful condition also is that it can be a fool’s errand sometimes anyway. So then you sacrifice and you still feel the pain. Like I remember I did everything right and I still felt this. And that’s because I was, for me, operating under the assumption that if you cross off the T’s and dot the I’s and do everything perfect, you can avoid pain. But it’s like, you could run, but you can’t hide.

Dr. Bronnie (00:14:41):

Exactly. Even on a day when I’m feeling pretty good, I’m still sore. And if I just let it rule me, I’m going to live this really little life. And I’ll still be sore so I might as well be sore and do things that matter to me and all the benefits of doing things that matter — things that I’m passionate about, things that I love.

Cheryl Crow (00:15:09):

And it’s just so congruent with the whole mission of occupational therapy to help people engage in meaningful daily activities. But I think, even for me as an occupational therapist and somebody who had lived in pain for a long time, when my own therapist introduced ACT, I was like, “What? How is that not settling, like, hold on.” ‘Cause it’s like we go into the field because we want to help people feel better. Right? You have an ‘owie’ and you do something and it feels better. But understanding the nature of like a chronic condition, that there is no magic wand to make it get better.

Dr. Bronnie (00:15:47):

There is not. So my partner lives with ankylosing spondylitis. We’ve been together for… We’re trying to work it out nearly 20 years. [Wow. Congrats.] Thank you. We can’t quite remember because time. [Isn’t that funny?] Yes. So he has his headaches on for probably… He would have had it for about thirty odd years now. He was quite, you know, in his late twenties when I identified that that was what was wrong. He had back pain and you know, most people with an inflammatory kind of problem will wait quite a while before you actually get a label for it. He just thought it was, you know, back pain and “let’s not do stuff” and maybe he’ll have to have surgery or eventually someone decided that we’ll do some bloods and we’ll find out, “oh my goodness, you’ve got all this inflammation going on.” So he was really interesting because he’s a bloke, he’s an absolute bloke and he doesn’t like to give up. And so he would just grit his teeth and carry on with it. And which was all very well until it got to the point where he wasn’t able to. So for him the inflammations, mainly in his intercostal muscles all around his chest, so like breathing, taking a good breath, coughing being able to reach up, twist, all those sorts of things.

Dr. Bronnie (00:17:28):

And this is a guy who likes to climb hills. And he was a high country firefighter as one of his voluntary jobs. So he would go and want to be climbing up these hills. And when it got really bad, he couldn’t do pack tests. He has a 25 kg pack and does speed tests. And that’s really hard because if you work hard, your chest starts to… You have to start to breathe more deeply. So he was really struggling. It got to the point where we had to, at night, he couldn’t roll over by himself at his worst. We used real OT stuff. We put a slippery sheet underneath them. [Right, right, right. Oh, that’s great. Nice.] So he’s very lucky because he was started on what was been an experimental drug of Humira and he got an amazing result. So he doesn’t have pain anymore. And I’m so pissed off. [It’s not a competition. Until it is, no.] So he doesn’t have any pain, and not very many people get that kind of response from the drugs. In fact, I’ve met lots of people who’ve with inflammatory forms of arthritis that have tried a biological and it hasn’t done the trick. We’ll add that and we’ll add some other stuff and you’ll experience side effects.

Cheryl Crow (00:19:07):

That’s true. For my first five years, I was in complete medicated remission, but I was on Embrel and methotrexate. So, you know, it’s still amazing to experience remission, but it would be obviously, you know, it would be great not to have the side effects. But he’s been on Humira for how many years now? And it’s still working? [About 10 years] Wow. That’s really long for a biologic to keep working. That’s awesome. Fingers crossed.

New Speaker (00:19:34):

Absolutely. No problems. [Wow.] Closer to the two weeks towards the end of it, two weeks is getting the, “oh yeah, my neck’s feeling a bit sore” and he does the whole, you know… He can’t turn his neck comfortably. But it’s really completely reversed that inflammatory process. And it’s amazing. So he’s been very lucky, but what bothers him, and he’s had a couple of flare ups, where he’s going to try other drugs. He’s been um… He still exercises, he still moves, he still does stuff as part of living a life alongside his pain. If you stop, your pain just does not go away, but the pain makes it a little bit harder to get on and do the things that you know help. It kind of knocks your motivation. I know that so well.

Cheryl Crow (00:20:41):

I know. Yes, absolutely. And you know, so for those who don’t know, and I’ll put this in the show notes, but you know, ankylosing spondylitis is similar to rheumatoid arthritis in the, it’s in the umbrella of inflammatory causes of arthritis, aka joint pain. And similar to that, you know psoriatic arthritis is in that category.

Cheryl Crow (00:21:04):

They’re actually now renaming… Also there’s um, axial spondylitis, which it used to all be the same category, but now that’s separate from ankylosing. Anyway. So yeah, there’s a lot of these different kinds of inflammatory meaning like the immune system is involved. But to take a step back really quick to your story just for those, ’cause I think fibromyalgia is something that not a lot of people or maybe not everyone knows about or they think they know, but they don’t. So how do you describe fibromyalgia to like the general audience of people?

Dr. Bronnie (00:21:39):

Widespread pain. Widespread pain without any inflammation. So you can test me, go do my blood tests and I don’t have any increased inflammation. You can test my reflexes. They’re normal. You can give me nerve conduction tests and it’s normal. You can scan me and I’m normal.

Dr. Bronnie (00:22:02):

Yes. I’ve got a bit of osteoarthritis, but that’s not the same as fibromyalgia. It’s thought to be a change in the way the nervous system processes normal information. And nobody is very certain about how or why it affects people. It’s got a number of other symptoms, some of which I have from time to time and some that, you know, bother us all. Most of us have really rotten sleep because we don’t go into the deepest sleep as easily as other people. And that was one of the earliest signs that people found that said that fibromyalgia is not the same as an osteoarthritis. It’s different. So we have widespread body pain. It’s usually in all four quarters of the body so if you divide your body into four bits, you will have some sort of both shoulders and both upper limbs, both lower limbs, back pain, neck pain. You can also have things like irritable bowel, that can be secondary problem. You’re probably prone to having headaches, particularly migraines. I twitch all night, so yeah. [Sorry. I didn’t mean to be like, huh? Yeah, no, I just didn’t think that would go along with it all.] But yeah, it’s another one. There’s foggy cognition so you can find it harder to focus, to concentrate, to think straight, and to remember stuff. So lots of people find that quite… They call it fibro-fog, where you just feel like a bit slowed a bit, like you have a hangover without the delight of actually doing that part.

Cheryl Crow (00:23:58):

Yeah. What’s funny is that I never been a drinker, but then I was put immediately on methotrexate. So then I was like, okay, well I guess I have an excuse not to drink, but I know what you’re talking about. That brain fog kind of feeling.

Dr. Bronnie (00:24:08):

And the fatigue that goes with that. [I was gonna ask about the fatigue, if it’s the same, like with other inflammatory…] Very much. So I’m a bit of a Nana. I go to bed early, I have a sort of shocking sleep and then I wake up. By shocking sleep, I mean I take a while to fall asleep. I will wake up a couple of times in the night. I’ve gotten much better at it so it’s probably right now not a real problem. But I wake up quite slowly. And I need and love, relish my full eight and a half hours of sleep. [I literally thought about making a course. Maybe we should do this together called sleep divas.] I am the ultimate princess. [I mean, my husband hasn’t called me a sleep diva, but he could, and I would say, yes, I am.] I’ve got to lay the right way. I’ve got to have my pillow. I regularly beat my pillow up so that it’s just nice to be around. [Right, right.]

Dr. Bronnie (00:25:20):

So those are probably the key hallmarks. I think the most important is the widespread body pain, the fibro-fog and the sort of fatigue — are probably the most important things, but it can be… So my cup of coffee that I’m very slowly drinking, and I’m very sensitive to the temperature. So to other people it’s lukewarm, but to me it feels hot. Because my nervous system processes [inaudible…]. So every sensory piece of information, whether it’s light or sound or touch, tends to be interpreted more quickly on my end. And I didn’t realize this until I realized that I was turning… So running the bath, we have a hot tap and a cold tap and the hot tip gets really hot. And I’ve always, all my life, put a face cloth over the tap to turn it off when it’s been running for a while ’cause it was too hot. And I didn’t realize that it was weird.

Dr. Bronnie (00:26:32):

I mean, I’m getting things out of the oven or holding onto my coffee cup. I just have to be really mindful that although my mind is telling me, “this is really, really hot, let go,” don’t let it go because it will fall. It feels really hot and those are environments I had to deal with. And light. So if I go into a really busy mall, shopping mall, I can just feel overwhelmed really quickly.

Cheryl Crow (00:27:02):

I have that with light as well. I had it then and when I got a concussion in 2016, it made it worse. Yeah. It’s, it’s rough. But yeah, I was aware of some of that with fibro, but not the sensory across the board. That’s really, really interesting. That’s kind of a hypersensitivity. I wonder if anyone in OT is studying that further, like from the sensory world? Probably someone. [I believe so.] Yeah. Okay. Yeah.

Dr. Bronnie (00:27:28):

So I’ve looked at the adult adolescent sensory profile. And I know my tendency, which is that I would like to shelter myself from too much stimulation. So probably what I do is I just titrate it and how much I can deal with, and I know how now to say, I’ve reached my limit — stop. But it takes a long time to feel okay about it because humans have this need to belong and to be like everybody else and not to be different. And I didn’t want to be different. I didn’t realize that some of the experiences that I had were not what everybody else experienced. I just didn’t know that other people didn’t get bothered by noise as much as I do. And as my fibro has kind of evolved… I grew up in a family that loves curry. So my parents were missionaries in India when I was little and so we used to have curries really regularly. And I used to really love them. I can’t cope with the chili as much so I have to not have it quite as spicy as I used to just because it didn’t work out well for me. [Your system has just really calibrated in a sensitive manner.] I’m a princess. Or what was it? The baby bear? Not the baby bear. The mother bear.

Cheryl Crow (00:29:03):

Oh yeah, yeah. Too hot or too cold. I know. I don’t know what this says about me, but I like my coffee to taste hot. So I keep reheating it all morning, like over and over and over. I like it to be hot. But you know, something that I’m thinking about as you’re talking is in general, you know, you have a lot of experience with pain from the patient perspective obviously, or the patient, meaning like you live with pain, whether or not you’re seeing a provider in any given moment, and the provider perspective what are some misconceptions about pain that you would like to take time right now (giving you a platform) to tell us? Or maybe anything you want to say about pain? I know you could talk all day long with pain, but what are some of the things that maybe you often see people miss and not understanding about pain?

Dr. Bronnie (00:29:54):

I think there’s a misperception that if you understand the mechanisms of your pain and you have it explained to you that magically your pain will go. It doesn’t work. I know a lot about pain. I still have pain. And there’s this sense that if you know the mechanisms and it doesn’t go, then obviously you really want it. [Oh yeah. I don’t like that one.] Who would really want pain? Seriously. It’s like although I use acceptance and commitment therapy, ACT, I don’t talk about acceptance because that feels like, “oh my God, I’ve just got to put up with it.” To the extent, I do because I don’t have a choice, but because I don’t have any… So no medications are effective for me. I’ve tried everything, nothing changes with pain at all.

Dr. Bronnie (00:30:49):

[I’m Sorry To Hear That.] Well, it’s okay actually. It means I don’t have 10 side effects. [Well, yeah that’s true.] And every drug has got side effects. But it does mean that you know, I want to put more into my life so that it’s worth living, otherwise I’m just going to be boxed in by this thing. And really, for some health professionals, the feeling that they can’t offer you something, feels difficult. It’s really hard for for them because if we think about… So I teach fifth year medical students, they’re in their last year of full time lecturing and stuff and started to enter clinical world. So in another two years, they’ll be graduated and they’ll be starting working in hospitals and things, getting their skills. And they heavily, throughout their training, they’ve got to be right. They’ve got to have an answer and it’s got to be the right one. And, frankly, there isn’t one for living with pain. There are a whole bunch of different answers. There are also different people at different times. So I call it finding wiggle room. I’m trying to see if I’ve got a Chinese finger trap somewhere around. Probably not. But so I have these finger traps and I say, “let’s put your fingers in the finger trap and try and pull it out a bit” and we can’t do it. So that’s what most of us want to do when we’re sore. We want to get out, break free. I want to break free. Don’t get me singing.

Dr. Bronnie (00:32:27):

[It’s Okay. I’m Always Singing, You Can Ask My Husband. Yes.] But so what works to get out of a finger trap? There’s a whole bunch of little wiggles, little movements, and everybody does it in a different way. It might work for me, but not work for you. But I’ll find a combination that helps me. And I might not actually get out of my pain, but I might find ways to live despite the fact that I’ve got this happening, which is what I think I’ve done.

Cheryl Crow (00:32:59):

Right. Right. And another thing that that reminds me of it is at least the way I remember it is when you pull it away, it doesn’t work. But when you push in, it does work and does start loosening. So it is almost that not leaning into the pain, like, “oh, I’m going to feel more pain ’cause I need to be like hardcore,” but being willing to experience… Yeah, like being, I think for me, it took a long time in my therapy process of really realizing how my entire life, even though I consider myself somebody who lives a very full life, you know, despite my condition, I really had conditioned to myself to orient away from pain constantly. It seemed like so many little tiny decisions every day. I don’t want to do that because of this. It’s not just physical pain, it’s psychological. I’ll be too anxious if I do that. You just don’t realize. And I think what Russ Harris has done so beautifully with the happiness trap. Anyway, this is just me rambling. But is that he’s described how the paradox, that the more you try to seek happiness and positive feelings, the more you’re set up for failure, you know, and to just accept, it’s actually alleviated a burden for me, to accept. I know the word acceptance is tricky, but to be willing to accept the concept that my life will include pain and it will include negative emotions or bad emotions like anger and frustrations. They’re not failures on my part. They’re just part of life. You know, they’re just waves I can ride.

Dr. Bronnie (00:34:35):

When I think those things, I am not able to appreciate the other things. So I use that with pain, but when I move with freedom, I can feel really free. Like this is my body and yes, I know where all my body parts are even though they’re sore. Actually that shows that I know where my body is. Lots of people don’t even notice where their body is, how the body’s moving or sitting or whatever. And I have ability to. But I also think with pain, one of the things that people want to do is to give you like this recipe and exercise is their thing.

Dr. Bronnie (00:35:16):

In fact, it’s not unknown for people attending a pain management program to all be given, “now, go to the gym, go to the gym and do your exercise,” even if this person has never exercised in their life and doesn’t like the gym like me. I do not like the gym. It is full of sweaty, hairy, loud men and mirrors and loud music. And I hate it. [For a sensory hypersensitive person that is like a nightmare.] Yup. So what do I do? And what do I do with people that I work with? Let’s find out what you love to do. And let’s find some movement opportunities, not exercise, but movement opportunities that you can build into your everyday life. Like I go walk my dog, doing my housework, which I’m not a good housekeeper at all. But doing that as an opportunity for me to feel my body do some movements. Gardening, that’s a fabulous whole body movement.

Dr. Bronnie (00:36:21):

[Yes. Dancing.] I dance. I belly dance, and like lots of types of dance. And each of these things are things that I can choose today or I could choose something else tomorrow. I can have as much flexibility. All I need to do is to give myself some opportunities through the day. And that idea that there is one special set of exercises that will do it for everybody, or that exercise is determined by somebody else, because so often it’s thought to be well you do three sets of 10 of whatever exercise given, that doesn’t work for everybody. Movement is fabulous. It’s really good for our bodies, especially with inflammatory problems because it reduces swelling and actually reduces inflammation. It increases your mobility. It hurts a bit at the time because that’s what happens. But at the end of it, you’re left with us toned really good body. It doesn’t have to be this rigid. You will do this almost like a military camp.

Cheryl Crow (00:37:36):

It’s another kind of setting you up for failure because then if you’re given this expectation that if you do XYZ, you’ll feel better. And then you do it and you don’t feel better, then you’re like, well, what’s wrong. I did it. [That’s not fair.] Yeah. And it’s hard. So in your work, you work with people who have been able-bodied. Some of the people you work with as an occupational therapist have been able-bodied and then they experienced an injury. Right. And then other people have already experienced chronic pain. Is that right? So do you notice sometimes that the people who I would assume that the people who are only recently injured may have that idea of, “okay, just tell me what I need to do and I’ll just do it and feel better.” Or maybe I don’t want to be over general, but yeah.

Dr. Bronnie (00:38:30):

I think by the time people get to see me, ’cause I see people at the sort of end of their journey very often so fairly far down the track they get to realize for themselves that everything they’ve tried has a had cost. And some of the costs, indirect: just the fact that you’ve got to wait between appointments, you have a scan or something and then you end up having to wait for the results, and then wait while somebody decides what they’re going to do, and then wait for the treatment to have an effect. All this waiting, it’s in the way because we kind of (have this), “I’ll start life once I’ve done this or if I’ve got better.” Well, what happens when you don’t get better? And I find lots of people are waiting and waiting and waiting. And 10 years later, they’re still waiting for something to happen, to take it away. And it’s fostered by some of our health professionals. Particularly, our medical students who are taught that I’ve got to have the answer and they don’t know what to do. They are sort of flailing about trying to find something that nobody else has offered, and say, “actually, this is as good as it gets, but I can help you get a better quality to your life.” It’s scary to say that as a health professional, that I don’t have anything to offer you. I heard that I was 22, 21, 22 and I had chronic pain for two years by that stage, chronic back pain at the time. And the doctor I’ll never forget him and I owe so much to him — the rheumatologist Mike Butler — and he said “I’m sorry, but there’s no medication. Nothing that’s going to take this pain away.” And I was gutted, you know, I was young. But I thought to myself, I’m going to have to live like this forever. But what he gave me, was he said, “read this book.”

Dr. Bronnie (00:40:42):

It was called the “Challenge of Pain” and it was written by Melzack and Wall. And it kind of obviously cued into the fact that I’m a bit of a geek and I like read. So it is all about the gate control theory of pain. And it helped me realize that, yes, I hurt, but this is not about doing harm to myself. Hey, it’s just pain. It’s still pain. I don’t have to like it ’cause I don’t like my pain, but it’s just pain. It’s just noise. It’s like hearing the wind blow or knowing that my eye color is brown and I’m short. It’s just part of being a human for me. And I learned that I couldn’t do stuff anyway. So that part was really good. And I would hope that more health professionals would say, “I don’t know what to do next, but I’ll be with you,” as he was, “to work out what to do.” So he gave me the book, I went away. What he didn’t do at the time was help me learn how to live well with pain. That’s my lifelong journey. I’m still learning. Every time I run a group with a bunch of different people, who’ve got pain, I learn something new, which is cool. And no, I don’t like pacing myself. I hate it. I’m a terrible pacer, which, you know, pacing was one of those things we’re supposed to do. It’s really good for you and you got to live your life by chunking everything down into little bits, but actually it’s really awful.

Cheryl Crow (00:42:21):

Well, yeah, I think it just depends on your own patterns. Like if I tried to pace myself perfectly throughout an entire day, I actually wouldn’t be able to get as much done as if I take advantage of my body’s natural rhythm, which is I’m a morning person, and I get really tired in the afternoon. Pretty much whatever I do, I’m still going to have that afternoon crash. So I kind of, you know, I pace myself within the morning, but with the expectation that I’m going to run out of steam at around two in the afternoon, and then I make bank on resting and recharging. You know, so if I pace myself all day, like steadily just for the concept of pacing, it wouldn’t really make sense. But actually I wanted to ask you more about the program itself. Um can you walk me through a little bit of like, maybe either like the day in the life of you as an OT or maybe the program itself, whatever.

Dr. Bronnie (00:43:18):

So the group program that I run is based on acceptance and commitment therapy. It’s six weeks and it’s a bit constrained by our funding models. And the last group was run half face-to-face and half online, and it worked really well. So I’m pleased with it. [So the face-to-face was prior to the coronavirus.] Yeah. We’ve got about three sessions. And so the first session is really a chance to get to know one another and to realize just what a journey we’ve all been on. So we talk about pain. We try to get some kind of understanding between us as to what’s going on with pain. Why do things like my emotions affect my pain. Why does stress affect my pain? Why do these drugs not work for me? You know, what’s going on there and what it’s like to have this invisible illness that nobody looking at you can tell.

Cheryl Crow (00:44:26):

Yeah, that’s huge. Just acknowledging that. I didn’t hear of the phrase invisible illness ’till I’d had rheumatoid arthritis for like over five years. And I was like, “oh, I love that.” How many people are in the group, by the way, just for the OTs?

Dr. Bronnie (00:44:42):

Up to eight because the group,I’ve done groups for a long time, I’ve found that splitting groups up into smaller chunks when they get too big [inaudible…] I’m in that group and not that group. So I stick with eight. Um,it means I can give time to those people as well. So the first few stations really saying, “So we have tried all of these things and it’s not working, what can we do? What else can we do? What’s going on here?” So it’s kind of getting ourselves aligned as to what the pain is like and what we understand about pain and that’s something we do together. So we’ve all got enough experience. We’ve all been told lots of different things about pain. And I want to help people make sense of the stuff that they’ve been told for themselves. It’s not my job to explain somebody else’s pain because everybody’s pain is quite unique to me. [That’s so validating. I imagine that they’re like, oH.] Yeah. And to realize that they’re in a group of eight people or nine, because I’m in there as well, that every one of us has probably gone through really similar stuff, like trying drugs that don’t do a thing, or getting the brush off from a clinician who really doesn’t know what to do next, or having family members who look at you as if, “oh what’s wrong with you.”

Dr. Bronnie (00:46:19):

You know, you just want to be lazy. [You want to just get attention.] Yeah. You’re just milking it. And realizing too that things like sleep are a problem, that everyday frustrations of things like getting clothing on cooking a meal — these are just everyday life hassle.

Dr. Bronnie (00:46:43):

And that is often not ever acknowledged. People don’t ask about how do you prepare a meal when you’ve got achy and sore shoulders and you’re tired at the day and somebody asks you, “what’s for dinner,” and you roll your eyes and go, “oh I don’t know.” So at the end of the session, we go away with the thought that, so if pain’s going to be a thing, if this is as good as it gets in terms of changing pain intensity, but it was less of a problem for you, what would you do? If pain isn’t such a problem, but you still have it, but it’s not such a problem, what would you be doing? So I’m inviting people to dream a little. And this is weird. It’s magic because you see people come back the next week and you ask them, “what would you be doing if pain wasn’t such a problem?” And they get this light in their eyes and this, “wow, I’d be,” and they’d say, I’d be playing football with my kids, I’d be cooking. I’d be out at work, I’d be cycling. I’d be doing all these things that are wonderful and fabulous.

Dr. Bronnie (00:47:56):

So the second session we start with it, “what would you be doing?” And then we talk about activity schedules because although I don’t like pacing, I do know that sometimes knowing your good times in your not so good times allows you to schedule accordingly. If you can avoid over exertion yourself, you’ll probably have a little bit more left over, left in the tank for those times when you do feel like your pain is overwhelming and it’s a bit much. So just talk about what happens if you completely avoid and you do nothing. And most people will agree that actually it feels terrible. I’m just doing it and I’m still sore. And then we talk about the booming and the busting, which is a favorite of mine.

Dr. Bronnie (00:48:45):

I do it. You push yourself really hard and then you crash and then you push yourself and then you crash. And so we talk about what that’s like, and you might do that because if you talk to anybody in the States in the week before Thanksgiving, you can bet everybody’s rushing around like madness. We do that because we rush around to do stuff and then we crash, whether we’ve got a chronic illness or not. So to speak people with chronic pain to live that rigid, structured life where you never flex it up and down is ridiculous. And I’ve heard people get told off because they don’t pace as if it’s this terrible thing. [As if Pace is going to completely solve the problem. Like if it could completely solve the problem, then of course we would do it.] Precisely. And sometimes other things are more important. Like, I’d want to be able to have this fantastic meal with my family.

Dr. Bronnie (00:49:48):

So I will rush around like a headless chalk and do that. So and then we talk about what about these people who are constantly going at the really high level and they hit the bag and just crash. So it’s people who really overcompensate and then all of a sudden reached that tipping point and then my crash and it’s really hard to get back up again. Not that I’m trying to say anyways they’re better than any other, but to help people reflect on what their choices might be — the good and also the not so good about each of these options. And then we talk about how might you, if you’re in one pattern, how might you change that pattern? Because, you know, if you go from doing nothing to doing a lot, you’re going to get payback really bad.

Dr. Bronnie (00:50:41):

Yeah. What can you do to increase what you do? And most people will be sensible and they’ll say, “well, we’ll just do a little bit more each day or we’ll stick it to level until it feels okay and then we’ll nudge it up a wee bit.” So I’m trying to use what people tell me and the way that the group feels to come up with solutions that work inside people’s lives. So at the end of that session, we set a mission because we don’t do homework. [Oh, I Like that. Mission.] We have mission. Should you choose to accept it? Which is why my [inaudible…].

Dr. Bronnie (00:51:18):

So what’s your mission. And it could be around, “Well, I’ve decided that pain was less of a problem. How could I start doing something that makes me feel more like me? Or what could I do to play with, to experiment with different ways of structuring my activities.” So off they go, and then we begin the third session reviewing, “How did it go? What happened?” No, there’s no failure. There’s just a chance to learn. What would I do differently? What worked well? What doesn’t work? And how would I play it up again next time? The third session is looking at the choice point. So I use choice point as my key way of helping people make decisions on the fly for a life that looks more like them, more like who they are, helps people make decisions about what matters in the moment. So for those of you that don’t know, the choice point is stopping to notice what’s happening at this very moment.

Dr. Bronnie (00:52:25):

In my next step, am I going to do something that’s going to take me closer to being the kind of person and living the kind of life that I want to have, or is it going to take me further away. In that moment, I’m also going to hear some hooks, some things that will hook me in and make me think “oh, I have to do it that way because that’s what everybody expects or I’m going to do the thing that takes me away from being who I want to be because of something.” Some expectation or something like that. And then we’ve got helpers as well. What could help me make a choice that takes me in the way that I want to go? And so we use that as a really simple tool to help people make decisions throughout the day. It means noticing. It means mindfulness in noticing. And so we do lots of that. I introduced that in the first session, just the noticing, noticing your breath, noticing some sounds, noticing what your body feels like, because lots of people with pain actually don’t want to feel what the body feels like.

Cheryl Crow (00:53:34):

Yeah. Yeah. Guilty. I had, when I first started doing mindfulness, I was like, “I don’t like this. ‘Cause I am, I’m noticing my pain. Thanks.” [And it’s really bothering me.] I’m like “uh no,” but then yeah, it’s a process.

Dr. Bronnie (00:53:51):

Yeah. And sometimes people, instead of not wanting to go there, are actually obsessed over it. I’m just going to notice this really sore part and I’m not going to notice the rest of my body is actually. So we talk about giving your left ear lobes some love. When was your left ear lobe given some love? When was your belly button given some love? You know, when do you notice those parts of your body that feel great? So we do that quite a lot. But noticing is that part in the choice point of just noticing, so say I’m trying to eat better because you know, COVID means you eat lots of chocolate and drink far too much alcohol.

Dr. Bronnie (00:54:37):

So in this moment, what do I really want? Do I wanna lose weight? I’ve got type two diabetes. Pre-Diabetes. Well, I think I’ve not got it anymore because I’ve lost a lot of weight because I’ve been able to say in this moment, what matters. Like grabbing for that chocolate, or actually working towards not having diabetes, which one matters more to me in this moment. So sometimes I can say, “yes, I’m going to have some chocolate because actually it feels good.” Or at times I can say, “oh I don’t have to, I can choose not to.” So I just try to teach people that process of stopping and noticing. So as my hand reaches towards the chocolates, I can stop in that moment and think, “right, what’s my next best step?” A toward move or an away move.

Dr. Bronnie (00:55:37):

And at the end of that session, we go through, “What do you want to use as your choice point? How many times are you going to use choice points throughout?” And maybe you use choice points for… Some of the people that I work with, find it really hard to stop. They don’t like sitting and doing nothing. It’s not what we hear much about. We hear so much more about people who avoid movement, but there are just as many people I think who push themselves really, really hard and feel guilty and uncomfortable just stopping. [Hmm. Interesting.] They keep busy all the time and [inaudible…] can feel really uncomfortable. So maybe we can practice that. Lots of people seek their own mission to integrate using choice points sometime at some place in their lives during the coming week. Then, fourth session. We talk about ah, this one’s the sleep session, sleep and sex session, but we do talk about sleep because most people with persistent pain find that their sleep is rotten at least for awhile. And we can blame that on our pain.

Dr. Bronnie (00:57:04):

But it seems that it’s possibly less the pain that wakes us, more that when we wake up and our normal fluctuations of alertness is over the course of the night. When we have pain, we wait fully instead of just [inaudible…]. And then we find out how to fall asleep because it’s how to wind body down a bit. So we just talk about some sleep practice that we can use. Some people will have tried a lot of this stuff before. Some will use the mindfulness approach. And we also talk about  you know, sleep hygiene can be quite rigid. It says, you will have a dark bedroom, it will be cold, it will be very quiet, and you will stay in bed for 20 minutes. If you’re not asleep, you will get out of bed and you will go and fight.

Speaker 2 (00:57:51):

So it’s very ruley and it’s not always… Well, there can be some funny consequences if somebody’s learned they’ve got to fall asleep and the room’s gotta be absolutely quiet. And then you stay in a hotel with air conditioning or you stay at a friend’s place who has a train running by, you find it hard to fall asleep. So I teach a more mindful approach, which is, let’s just notice that yes, it’s going on, but I’m resting my body rather than fighting with and struggling to fall asleep, which does not work. Let’s just notice. Let’s just notice that I’m resting in bed and I’ll notice my breath. And actually I fall asleep much faster that way anyway. [Yeah. Yeah. I found that too.] Yeah. I mean, it’s at the end of that session when you talk about what might you try out of all the different things that we cover on the sleep session or something else that’s part of you living more like yourself.

Dr. Bronnie (00:59:00):

And then we go to who’s on your team… [But what about the sex part? We don’t Want to miss that.] Oh yeah. Well it can either come in there or come in the who’s on your team. It can be one, or it can be one or other, but let’s put it into the who’s on your team. Who’s on your team is going through all the people you’ve had to tell your story to. And not everybody that you tell your story to is going to be a person that’s going to get it. And the fact that we do disclose a lot to other people about what’s going on inside us, but it’s really reciprocated. So we don’t know as much about our health professionals as they know about us, which makes the power difference between us. And yet we are two people coming together to try and sort something out, trying to work out how I’m going to live the life that I want.

Dr. Bronnie (00:59:58):

So surely we should be on an equal footing. I’m an expert in my life. And the health professional might be an expert in drags or something else. Exercise, for example. But ultimately I want to ask to learn how to collaborate, which means coming together. So we go through all the different people and we talk about family and we talk about how we might express how we’re feeling. I haven’t used a code word yet, but I was listening to Linda Crawford, OT, talk about code words. So when you, at that point, we you’ve had enough, you might say “asparagus” to your family member and they will know I just reached one limit right now. I need to go find somewhere quiet to be. And just in a non-confrontational and agreed way, signal I’m just going to take some time out or I’m just going to do something to look after myself.

Dr. Bronnie (01:01:01):

We talked about that. We haven’t used the code word, but we will. We talked about just pushing those boundaries, realizing that my pain is my problem, that somebody looking at me can’t tell that I’m sore. So expecting them to anticipate that they know what to do and when to do it is probably a bit silly. So I need to be able to tell them and take ownership of how I want other people to respond to me. To make things being straight up. So we talk about clobbering, which is where you clobber somebody with the hammer and say, “You’re wrong. I’m right. Go away.” [You’ll never understand.] Yeah. And it’s not fair. And you should be doing it this way and you should anticipate my every need. Or we have pussyfooting, which is the opposite. “Oh Yes, dear. Well, if you want, if you really like,” but actually you’re seething underneath.

Dr. Bronnie (01:01:57):

But that’s sort of not being… That’s being passive so we have aggression. And then what I hope that we get is this straight up adult-to-adult, person-to-person, and I’m being honest, you’re being honest and we’re owning our own feelings. So we talk about that and we practice some statements. And it’s key that we often talk about intimacy and what it’s like for the family member who doesn’t know whether it’s okay to touch because we’re sore. It feels guilty when they want to have sex and we’re saying, “oh, not tonight, darling, I have a headache.” What’s it like when we have needs and they feel too scared to reciprocate because they’re scared they’re going to hurt us? What’s it like when you feel like you’re all touched out and you actually want to say no? So we just talk about that. What else can we do to feel close and loved? What are the easy practical strategies that we can use? Lube is a thing and toys.

Cheryl Crow (01:03:07):

Right. No, and I think the thing that you were saying earlier about the power dynamic with a practitioner and a patient, it can also come into play when one person in the relationship is more in the caregiver role. And so then the person who’s having more pain or needing more help, feels less comfortable saying no, ’cause they’re like, “oh, this person, you know,” so I’ve kind of had that just a few times where I’ve had to stop myself from thinking that way. You know, because it’s like, you still always have that autonomy and the right to, of course, you know. [And That’s the difficult thing because we do have the sort of balancing set of scales that are here.]

Dr. Bronnie (01:03:49):

He’s done this. He’s done that. [Yeah. Oh yeah. I’m a middle child. So that’s bad.] Yeah. Well we do that. We talk about different aspects of intimacy. We talk about how you might communicate. We talk about the power differential. We talk really about how people can take this as my life, my body, my experience. And I need to own it and not expect other people to mind read me. Likewise, I’m not going to mind read them because there’s a real thing where initially when somebody gets pain, their family’s sort of “oh poor, you.” They wreck them up and cause a wall. And then families that feel a bit resentful are like, you know, “why not?” and then they start to get angry and then they sort of have an explosion and then they feel guilty and then they start doing all that and going to mollycoddle you again.

Dr. Bronnie (01:04:47):

And that becomes this really unhelpful cycle of, you know, guilt, resentment, lots of love and TLC, and then feeling resentful and then guilty. It just gets nasty. So we would just talk about that, especially when it comes to intimacy that, you know, connecting with a partner, doesn’t have to be rip, roar and sex all the time. Sometimes it’s really fun, but it can feel as close to and loved by holding hands and watching a movie. You know, there are lots of different ways of expressing love. And so I leave people to go away and have a little conversation with their families [Mission.] And it might be because we talk about lots of other things that they actually go and make another appointment with the doctor that they’re saying, “Hold on. I don’t feel like we’re having a good conversation. I want to try and make our healthcare relationship better.”

Dr. Bronnie (01:05:51):

Um it might be that they decide to not to see some doctors or some health individuals who haven’t understood. Out of that, there can be lots of different options that come up for people that become the mission. And then the last session, the other mission that they do in this last week is we have a self-management plan. It is a list of all the things that we’ve talked about and because at each session, we talk a lot about different strategies that might be useful. As we deconstruct each mission, we talk about lots of different options for people. The group come up with them and I come up with them and we just kind of swapped notes. So on that final day, they have a two page self-management plan that is basically their documentation of the things that help them in detail that they can take with them where ever they go to any health professional to say, “Look, I’ve tried these things. These things helped me. These things don’t. I’m not gonna do that.”

Dr. Bronnie (01:07:05):

So we don’t go around and around that “oh, have you tried you know?” [Yes.] So I have people say to me, “Well, have you tried,” you know, it’ll be goji berries, or it’ll be… [Yoga.] Which I don’t mind. [Actually. I like it.] But actually, yes, I have already tried that. “And Have you tried this?” Yes. I’ve tried that drug. No, it doesn’t. And no cannabis doesn’t help me either. It’s just, you know. So it’s being able to put people back in the driver’s seat of their own pain management of being in charge of your own healthcare team or choosing who to be on your team that are not on their team or being able to make deliberate choices about what they do, how they do it, when, and why. Instead of having to feel like your pain is pushing you around or other people are pushing you around that you say, “well, I’m making the decisions”

Dr. Bronnie (01:08:06):

And that means I’ll wear the side effects. So I do nothing and get a flare up, but I know how I can handle it because I do. And in that session, we also talk about flare ups. We talk about setbacks. What are your early warning signs? When do you know that you’re in a high risk situation? Which for me is travel. So when I’m traveling, when I’m not sleeping enough, when I’m out at conferences and I have to do a lot of talking those are times when I’m really pushing myself and I know that I’m going to get sore and tired and probably cranky. So I probably need to look after myself. So we look at those high risk situations and we work out what to do ahead of time and we develop a can cope card. A can cope card is… [Let me see.] It’s basically a business card like that. There’s two of them, back-to-back. I’ve got one handy, but it’s like this. So it’s back-to-back like that.

Dr. Bronnie (01:09:16):

[Nice.] And it goes into your wallet. And in the inside you list 10 things that you can do when you’re having a flare up. And so the first of that is always stop and breathe out because you know, when we get stressed, the first thing we do is probably hold our breath. So we stop, we breathe out, and then there’ll be some kind of statement about, “okay, now take a chill pill, next step, what am I going to do?” And it could include the phone number of somebody that you can call. It could include I’m going to go for a brief walk around the block. I’m going to go off to the toilet and do a stretch and just have a bit of time on my own. I’m going to just stand up and walk around my chair. Just little, little things that can tie us through until we get back to home at the end of the day. So it just helps people in the moment to have something that does the thinking for them, because in the middle of it, your thinking can often just fall over.

Cheryl Crow (01:10:30):

That’s so true for me. I had that for claustrophobia, you know, I would go through all the strategies. I would practice it, but then when it would happen, I’d be like, “Wait, what are I strategies again? I forget. Like I’m in the MRI machine. What was I going to do?” [Oh, that would be scary.] That’s a hard one. So the exposure therapy coupled with ACT really was the transformation for me because I just kind of learned that I could tolerate my own discomfort rather than trying to run away from it or desperately trying to figure out how to make it… The goal isn’t to make me feel good in the MRI. Right. It’s to just be able to tolerate the MRI without a massive panic attack. So kind of like what Russ Harris about like public speaking, you know, like a realistic goal for a lot of people wouldn’t be to feel a hundred percent calm and peaceful as we public speak.

Cheryl Crow (01:11:21):

Even though I love public speaking, but most people don’t, you know. But to say, yeah, I can recognize and sit with and make space for the anxious thoughts. And it just took me a lot of practice. I’ve seen a lot of people who say, oh, ACT makes so much sense. And to me, I’m like, it didn’t make sense to me at first because I was so attached or fused with the idea of “I’m a problem solver. Pain and anxiety are a problem. I’m just going to fix them and make them go.” [Yeah, exactly. I know.]

Speaker 2 (01:11:56):

That’s a bit of what we are. Our minds are made to solve problems, but life’s not a problem. And pain can be problematic, but the problems that pain pose is less often than the solutions that we’ve put in place, they can be more problematic. [Yeah.] So if you have to, if you feel like you have to do, you know, your three sets of 10 exercises and you have no other choice, then that’s equally rigid as saying, “My pain’s in the way. I can’t do it.” What we need is that flexibility to be able to choose in the moment what is going to work to take me closer to being me. [Right.] That’s really important. So the can cope card is a way for people to carry their thoughts with them, to not have to do the thinking, to be prepared ahead of time. And then we talk about secret planning. So you prepared say under COVID, we’ve been in lockdown and your usual way of maintaining wellbeing is going to the pools and swimming and you can’t do that. What can you do? So trying to have some variability and some choice about what you do is part of that sort of process. And there is this whole six weeks of springboard where I know it’s only a springboard. It’s only a starting point. It’s where people start and then I’m hoping they can go off and do life. [A springboard into their life. I love it.]

Speaker 2 (01:13:40):

They have some more flexibility to think about what do I really want? They have that time. And it’s funny often at the end of the program, people will say that they don’t think of their pain as something they could gain from. Well then they say, “But hold on. When I go to a job, I am better at stress management than most people.” [Oh, yes. Yes.] Because I have to do it. I know how to look and to carry in the safest way possible because my body will tell me if I don’t. So they start to look on what we learn as a result of living with pain as some something that we can take advantage of. I know I’m tough. And I know that they’re tough. We are the toughest beasts around because we have to be, and that’s something to really celebrate.

Cheryl Crow (01:14:34):

I’ve really been thinking about that a lot in the coronavirus situation. For me personally, I really doubt that I would have coped in the same way that’s kind of been pretty… I don’t want to say I’m coping really great, I’m amazing. But like, I feel like my experiences with ACT, that acceptance, ’cause I keep hearing people say things like, there’s all these unknowns. There’s always unknowns. As if it’s like, that’s the problem rather than like, we always don’t know. Obviously we don’t always have deadly things that are this contagious that we don’t know. But like the idea of like… My psychiatrist, I’ve had a psychologist therapist and a psychiatrist therapist. Uand one’s female ones male. But anyway, I keep referring to them as my therapists. So it’s like, which one is like… What is happening? He and a she like, what is going on?

Cheryl Crow (01:15:24):

But he has said so many times to me, like, can you sit with the uncertainty? ‘Cause I kept being like, “Well, I can’t deal with the uncertainty. Like how am I going to fix it?” He’s like, “You’re not.” I’m like, “You’re the downer dude,” like at first. And then I was like, “Okay, I get you. I get you now because there literally is just no other way.”

Dr. Bronnie (01:15:46):

Yeah. Life is totally uncertain and random. And I think that’s something I learned after the earthquakes in Christchurch. The people in Christchurch, the ones who can’t beat it, the ones who realized that sh*t actually happens everywhere anywhere. And it doesn’t respect whether you been a good person or a bad person. It just happens. So let’s go with it. And yes, the next earthquake might be really nasty and life will be in shambles again, but we’ve got through this. We can get through this, we just have to do it day by day. You don’t have to go plan the whole rest of my life out, we just have to go day by day.

Cheryl Crow (01:16:30):

I can’t remember if you have kids or not, but when you have a baby… [I do.] Yeah. Okay. I thought you did. I just didn’t want to be presumptuous. But you know, I think a baby is a good analogy for that. Right. If you have a baby and you think you’re going to be able to control everything in the baby’s life, you are closed very quickly to the reality that that’s not.

Dr. Bronnie (01:16:48):

The thought of actually a child sleeping through the night… So my children are adults now. My son is 29 and he’s moved back home. Yeah. He’s moved back over the weekend because the flat, there was this woman. As soon as we got to level two, which means we’ve got a bit more flexibility, she said, “off you go.” Apparently she’s vegan and she didn’t like the fact that he wanted to have a stereo in the lounge beside the plants and the plants did not like the electronics and she wouldn’t let him put any food in the fridge because he wasn’t vegan. [Oh, wow. That’s pretty committed.] Yeah. So he’s come home. He’s got a lovely girlfriend, who’s got two really lovely boys. And they came over last night was just fantastic. And then my daughter’s 26 and she’s just moved from Christchurch to move to Auckland. Big move for her to be completely independent.

Dr. Bronnie (01:17:45):

[Wow.] And her job is in social media. So she’s a social media marketing person and of course everything dried up. And so she was really, really worried because you know, all the marketing was supposed to happen now and it didn’t. But it’s coming back really quickly now and she’s just rolling in it. While she’s having to do a lot of work to get everything out there, but you knowI’d always thought one of my children would go to university and be, you know, this bookish person like me. Well, no. My son’s a diesel mechanic. He happens to like philosophy as well, but he’s a diesel mechanic. And Michelle is a social media queen and the Insta-queen. [Yeah. I’ll talk to her, I’m thinking, “okay, she’s the next interview.” No. And I’m having fun with social media, but yeah, there’s a lot of strategy to it. I’m sure, especially right now.]

Dr. Bronnie (01:18:44):

I think we do better in life if we look to what we want to have as important and we find ways to express what’s important to us in different forms. There are lots of separate ways to be who you are like be a good dad. There are loads of different ways to be a really good father. There’s also loads of different ways of being a good OT. You don’t have to just dish out equipment. You can do lots of stuff and that’s great. It gives us opportunities to express who we are. And that’s what I think what life has to be about really.

Cheryl Crow (01:19:25):

Oh, that’s such a wonderful point almost to end on. I just, I have one more question though. I think first of all, I’ve said this already before I started recording I think, but thank you so much for your time because you really are like a guru of the pain world. But for OT, especially, and I know we’ve had this talk already, but I guess now that we’re recording it. I’m hopeful that in the next decade or so more occupational therapists will pursue pain program, you know, working in the field of pain like you have. Oh really quick. This is not my final question, but do you do the same? So you have the six week program for the groups of eight. When you work individually or when you worked in the past individually, were your sessions pretty similar in terms of like that kind of back and forth problem solving? [Pretty much.] Okay.

Dr. Bronnie (01:20:19):

The main differences that for the program we do have this week, we’ll do this topic structure. But working with individuals, it’s much more fluid, but I still do. It’s not about me telling people stuff. My job is to help people connect dots that they maybe hadn’t thought were connected before and to help come up with, “oh, that’s, what’s going on.” The realization for themselves. And then to experiment with different ways of trying to do things so that ultimately they are the judge of, well, they’re the judge of what works, but better than that, they’re learning some ways to play with an experiment. So the learning some ways to problem solve for themselves or ways of being with experiences so that the processes is important and in result.

Cheryl Crow (01:21:13):

That’s so different than how I think a lot of people, or maybe I shouldn’t say that, but that’s a little different than that kind of Sage on the stage mentality of, okay, you come into my office, I tell you how to move your body. I tell you what to do. And it’s more collaborative, you know.

Dr. Bronnie (01:21:29):

And I think we deserve it because with pain, we are the experts in what it feels like. We’re also the experts of what our life is going to be, what we want our life to be, and what we come into somebody for is that help to get that life. Not necessarily to get rid of the pain, but to have the life you want. So if that person doesn’t want to work with me to help me get my life then it’s not really working. I’ve never had an OT, except when I had my concussion, when she reminded me that actually I probably do need a break in between seeing people. It was wonderful. And for my pain, I’ve not had any kind of any successful treatments, I suppose. I’ve figured it out myself over the years by reading and experimenting. But how I wish that I’d been told that it’s okay to feel the pain and to do what matters. It’s okay to be willing to experience flare ups if you’re doing what’s important. I wouldn’t have spent half my life trying to move properly and lift properly and sit and live a life that wasn’t me.

Cheryl Crow (01:22:50):

Wow. That’s really powerful. And well, my last question was going to be, you know, if you wanted to leave people with any message about pain, but you kind of just answered that like that you don’t have to wait, or if I paraphrase it, you don’t have to wait ’till the pain’s gone to live.

Dr. Bronnie (01:23:10):

Well, no, because life is still happening. And if you wait for it to be gone, for some of us, we won’t have a pain reduction. It may just not even happen. And that’s a whole life that you’ve spent waiting for it to do the thing that was so important to you. And even if we can’t do that thing in the way that we thought we were going to do it, at least we’ll begin to do some of the things that take us closer towards that thing that we want to do, because it’s the quality of how we live our life and the qualities of how we do things that measure. And I can be patient. And I can be exuberant. Then I can have a stupid sense of humor. Then I can get a different lift for your way.

Cheryl Crow (01:24:02):

Right. But for some reason, ’cause I’m a dork too, in terms of like, you know, loving science. I don’t have a PhD, but that’s like next level. Oh God, I don’t know. But the thing I was thinking about is the null hypothesis. The null hypothesis is that things, at least my remembrance of it, is that things won’t change. So it’s almost like approaching your pain as if, “okay, so this is where you are now like today, you know, March or whatever the month this is. May 17th, this is where my pain is at.” The null hypothesis is that it’s not gonna change. I think that some people get confused as I think, well, if you accept or are willing to tolerate your pain, that means that you don’t want it to ever get better. But to me, those that can be held at the same time. I hope like for arthritis, I hope there’s a cure. I hope that there’s a cure for arthritis. Of course I do, you know, in my lifetime, but the null hypothesis is that there isn’t, ’cause there’s not a cure right now, you know.

Cheryl Crow (01:25:02):

And the null hypothesis is that maybe this is as good as it gets, you know, maybe it actually gets worse from now on. And so it’s kinda like you looking in the mirror when you’re a teenager and thinking, “oh, like my thighs are too big.” And then you look back at that picture 30 years later and you’re like, I was so beautiful. I didn’t even know it. Like you don’t know, you know. I had that experience when I got my car accident because I had never had neck pain before and suddenly I was like jealous of my former self who only had rheumatoid arthritis pain and didn’t ever had C-section pain, and I had pineal cyst pain, but I didn’t have neck pain. And now I’m sitting here thinking, “geez, that girl had it really good, you know.”

Cheryl Crow (01:25:44):

[Same sort of thing. It’s really weird.] But I think I’m just, I mean, you know, we can talk about this for nine hours, but I’m imagining that it must be a hard pill to swallow, I think for sure for some people. It’s almost like, and again, most of my OT work has been in pediatrics, but there’s a little bit of an analogy. It’s not a perfect analogy, but like there’s been kind of a sea change in the autism world where instead of saying you have neuro-typical people and then you have people with autism and you need to just make the people who have autism more similar to the neurotypicals. Now it’s like, no, no, no. We have a spectrum of human beings and neurodiversity. I know I’m kind of preaching to the choir, but so it’s teaching someone to function in a world that just happens to be predominantly, you know, typical. And so, okay. We’re going to have to be able to function in this world just to be able to just take care of ourselves. But to say that we can accept that someone flapping their hands. Can we just accept that? Instead of just saying that’s a problem to be solved ’cause it doesn’t look normal. It doesn’t look neuro-typical.

Dr. Bronnie (01:26:48):

So it’s not the problem. It’s the question I ask. Often, that’s not the person who’s doing that. It’s looking at them feeling uncomfortable. Isn’t that something that that person needs to deal with, not the person who’s doing what you don’t like. It’s a bit like, with the pain, if I’m unhappy because somebody is not doing what I want them to do because of my pain, did I bother communicating to them? Did I? And if I did and they didn’t follow through, well, isn’t that my preference that I’m wanting to push onto them. There are things that I can adjust in order to be more adaptable and cope better. We can be flexible.

Cheryl Crow (01:27:42):

Yeah. And I think actually in… Okay, now I’m just going on another topic. But social media for me has become such a, it’s a wonderful resource of support of course with especially if you have a really specific disease or disability. Like I have a friend who has a child with a very rare genetic disability where there’s just no one else that she knows who has it. Right. But with rheumatoid it’s a little more common. But but still I see this, sometimes it can become an echo chamber, right. Where one is like, “well my husband doesn’t understand.” “Neither does mine.” “Yeah. Mine doesn’t neither.” Nobody understands and then it kind of escalates. And then you forget to kind of say, well, like you just said, you have to be accountable. Did you ask for what you want before you, you know?

Dr. Bronnie (01:28:25):

I know not to go on to Facebook groups of people with pain to say, “actually, no medication works for me.” And I live really well because I get absolutely slaughtered because it’s really funny how people can assume that because I’m living well, my pain is obviously not as painful as theirs and in the same breath they say, “and other people think that my pain is obviously less than this and how do they know?” Well, you know, pot called kettle black. My pain is my pain. And it gets in the way, but I’ve found ways around it. And no, there isn’t a drug that works. I wish there was, but I don’t know that I’d want to try that the side effects. I probably will ’cause I’ve tried everything, everything offered. [Curiosities. Yeah.] I just feel like, you know, in the end, I would like people with pain to also remember other people with pain have their own experience. And what works for them might not necessarily work for you and vice versa. And it doesn’t mean that because somebody is coping well, it doesn’t mean that you’ve got less pain. It’s simply just a different way of living.

Cheryl Crow (01:29:46):

Yeah. And this is a slightly different context, but just the other day, someone emailed or DM’ed me on Instagram and they were like, “How did you get into remission? Or how long have you been in remission?” I’m like, “Oh, I’m not in remission at all. Like I have mild pain most days. And sometimes it goes into moderate and sometimes it goes down to sub mild.” It’s never gone though, you know. And they’re like, oh, I just, I know in that case they weren’t trying to minimize my situation. They just literally just assumed that because I’m kind of out there making videos and dancing and you know, I mean, of course there’s a difference. Obviously if I was in the most severe pain I could possibly imagine, I wouldn’t probably be able to dance. But you just don’t know looking at someone, whether they’re…

Dr. Bronnie (01:30:34):

You can’t tell whether I’m having a good day or a bad day really because that’a internal. And I can put on a brave face as most of us learn how to do. And sometimes we do that and sometimes it’s important to do it. Other times, it’s not. And we want that. It’s the Serenity Prayer. Give me the wisdom to know what I can change, the wisdom to know what I can’t change, and the wisdom to know which one is right in front of me right now.

Cheryl Crow (01:31:06):

Oh, that’s the hardest. I just made this funny TikTok video about like, it’s like in that expectation versus reality where, you know, you have the higher, the expectation, the less likely reality is to meet that. Right. I think it’s when you first get diagnosed with something you’re like, “okay, well, my coping strategy is just to be a problem solver and I’m going to go figure out what the solutions are and I’m going to do them.” And then the doctor’s like there’s medicine to try and you’re like, “great, okay.” You know, point A to B relationship: get diagnosis, try medicine, feel better.

Cheryl Crow (01:31:41):

And then you realize it’s actually like this super long iterative process. [Yeah. And finding useful ways to really find new stuff.] But it’s funny that you mentioned the thing of the comparison trap because I just saw someone else mentioned that on social media too. So people try to get that message out that, you know, don’t compare even within groups. And actually speaking to autism again ’cause that was just where my heart was for a long while in the OT world is there’s a lot of parents that, that fall into that too. “Well, My kid, you don’t understand ’cause your kid only has mild autism.” Or, you know, it’s the same with RA, well, your RA is only moderate. It’s like, we’re all having our own experience and you know, it’s all valid. So do you want people to find you to follow your blog maybe? Or is there anywhere you would want me to direct people to?

Dr. Bronnie (01:32:31):

Yeah. So health skills blog, which is www.healthskills.co.nz. It’s just a WordPress blog, but that’s where I’ve been writing for a long time. [Great. She has some amazing stuff on there about pain and OT and other disciplines. It’s just wonderful.] And I’m on Facebook, under health skills as well and I post into the air. I’m a little bit on Twitter. Not very much. Just a wee bit. But under @adiemusfree. I’m one I’m going to change that name. That was way back in the day when it was thought to separate my professionals. I’ve decided actually I’m me and you take me as me or not. So if you find me on Instagram, it’s Bronnie Lennox Thompson (@bronniethompson) and there’s not very much pain stuff on there. There’s an awful lot of silver smithing and places that we’ve gone and beer.

Cheryl Crow (01:33:35):

Hey, full person, holistic view of who you are. And also I’ll post for the… Because I know that in the exploring pain research and meaning group is really active patients and providers and then the OT activating OTs for ACT and OT. And I’m really hoping there’s going to be more OTs who learn about ACT ’cause it’s just, it’s such… [A fabulous way of working.] It really affects. I mean, for me again, I learned it in the context of anxiety and panic attacks with claustrophobia and it’s ended up becoming so relevant to chronic illness and it’s relevant to any challenge, any challenge, really.

Dr. Bronnie (01:34:10):

Like not just challenge. And you don’t have to have a diagnosis, but you can have a situation like COVID in lockdown and learn to respond to it. And even little things like, you know, just living, just everyday because there are days when you feel cranky and you don’t want to do something and you need to just stop for a moment and think, “What’s my value? How do I want to be in this situation to be a better person, to be a person that I want to be?”

Cheryl Crow (01:34:47):

Right. Right. Well, that’s awesome. Thank you so much.

Cheryl Crow (01:34:51):

Thank you so much for listening to today’s episode. Don’t forget to check out my latest courses and resources on myarthritislife.net. This podcast is brought to you by the beginner’s guide to life with rheumatoid arthritis, a four week online education and support program that I created from scratch to help people with inflammatory arthritis learn everything they need to know to navigate the social, emotional, physical, and logistical challenges of rheumatoid arthritis and related diseases. The next group is going to start in August, 2020. Learn more at myarthritislife.net or bit.ly/arthritiscourse. All in lower case. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.