Ep 126 "When I look fine on the outside, but feel horrible on the inside" Christin Veasley

What does resilience look like when you're living with chronic pain? Our special guest for this episode, Christin Veasley, can certainly give you an idea. Having battled chronic pain for over three decades, Kristen carries a wealth of insights on the physical and emotional toll it takes and the challenges faced while navigating the healthcare system. Despite the odds, she discovered a creative outlet that brought solace - photography - and co-founded the Chronic Pain Research Alliance, proving that joy can be found even in the most challenging circumstances

The second part of this episode is a candid conversation about the unseen effects of chronic pain on daily life and the concept of 'masking.' We dive into the constant decision-making, trade-offs, and careful balancing acts necessary for those battling this condition. We wrap up with a shift in gears, talking about photography. A journey that started as a creative outlet for Christin might also inspire some of you to pick up a camera. Whether you're a novice or a seasoned shooter, we offer tips and recommendations on starting in photography, selecting the right gear, and more. Listen in, as this episode is a blend of inspiration, empathy, and creativity, especially for those grappling with chronic pain.

The fibromyalgia starter pack  categorizes the episodes in a way that is more accessible for those new to fibromyalgia.

Transcript

Michael: 0:49

I came across Kristen Beasley's story through Dr Afton Hassett's book Chronic Pain Reset, on page 49. She wrote On the one hand, I gained a new perspective, a sense of purpose and an appreciation for life that most don't understand. On the other hand, my mind, body and soul experienced severe trauma, leaving me with a new daily companion Chronic Pain. Thirty years later, that cruel companion remains. Remember that while I am a doctor, I am not your doctor. All of your signs and symptoms should be discussed with your own individual physician. And now on to this week's episode. I am excited to have a special guest on her podcast Today. Her name is Kristen Beasley and she is here to share her story and also talk about how she's been trying to find ways to help her and how she has found a tool that many doctors don't prescribe the camera to be both therapeutic and also giving her creativity to help others in so many different ways. She wrote. Due to insufficient awareness of and research on chronic pain, I, like millions of others, have struggled to find knowledgeable healthcare professionals, as well as safe and effective treatments. I spent almost a decade experimenting with different drug and non-drug pain treatments to find a combination that helps reduce the severity of my pain without intolerable side effects. The day-to-day grind of trying to function when I look fine on the outside, I feel constant pain on the inside has taken a toll not just on me, but on those with whom I'm closest. Kristen Beasley is a co-founder and director of Chronic Pain Research Alliance. Learn more at chronicpainresearchorg and see her photography at resiliencephotographycom. So welcome to the podcast.

Christin: 2:54

Thank you.

Michael: 2:56

So can you tell us your story?

Christin: 3:00

Well, I've been diagnosed with a bajillion different pain conditions, but essentially I have fibromyalgia-like condition but I only have chronic pain on the left side of my body. I was hit by a car while I was riding a bike when I was 15 years old. It was an accident. I was not supposed to survive. They told my parents I wouldn't make it through the night. I broke all my ribs. I had a collapsed lung. I had so much bleeding in my belly that when I got to the emergency room I thought I was eight months pregnant. They were able to remove a third of my liver, my gallbladder. I had a crushed leg, compound fracture in my leg. So obviously I did survive and spent a month in the hospital and then had many surgeries throughout the next year during recovery, rehabilitation. So obviously during that time I experienced acute pain, trauma-related pain, surgical pain, post-surgical pain all these different types of pain labels that we have. And then, honestly, I remember praying one night that I would never have to suffer with pain again and a couple years later I started developing. First started kind of with neck and upper back pain on my left side and that kind of made sense to the docs because I'd broken all of my ribs and your ribs don't fuse back together in a neat pattern, so you know a butt to your thoracic spine. So it kind of makes sense that I would have pain in my trapezius and neck. And then, to make a very long story short, over the last 25, 30 years I've developed numerous different types of pain, mainly neuropathic and musculoskeletal pain conditions, but only on the left side of my body. So I've kind of gone to a widespread pain syndrome. Imaging in 1991 when this accident happened, is not like it was today. So I was never told that I had a brain injury at the time. But specialists that I've seen over the years, the best they can put together is that I likely had a mild brain injury on the right side, which you know controls the left side of your body. So yeah, that's pretty much how I've gotten to where I am now.

Michael: 5:12

I asked Kristin to share what her recovery process was like.

Christin: 5:16

I would say in the beginning I was unconscious for four days. So I don't remember, obviously, that part of it, but the initial focus for me I woke up in the ICU so you know the focus for me was on saving my life. There was quite a lot of pain involved in that one month when I was in the hospital. Obviously I was asked about my pain and it was mainly managed with narcotics at that point because of the severity of it. But you know, I distinctly remember an instance where I had a chest tube in which is extremely painful and I had a nurse who walked in the room and she was going to change the dressing or something like that and she took my arm on that side and I thought kind of forcefully you know, slung it backwards and I cried out in pain and there just wasn't. It wasn't like there was a lot of acknowledgement on pain management or that being a real priority at that point of time and I wouldn't say there was a whole lot of empathy either. But I honestly, you know and this was a long time ago, so I'm 48 now this happened when I was 15, so I'm sure there's a lot of things and I was on very high doses of narcotics. I'm sure there's a lot of things that I really don't remember, but to be honest, I don't really feel like pain management was really a priority. For the majority of the clinicians that I saw, it was really about putting my body back together, saving my life. In the beginning, obviously, as I went through different surgeries, I had hardware in my legs. I had to have that removed. There was a lot of instances where I mainly was given opioids to manage the surgical pain and it helped, but it wasn't 100%. Then it just went on from there. There really wasn't a whole lot of discussion in my care around adequate pain management. I wouldn't say it was. I think it was assumed that I was suffering from acute pain, I was suffering from trauma-related pain, surgical pain, post-surgical pain, and that I would take a course of opioids for that period of time and then things would be fine For the most part. That is what happened until a few years later, right, the chronic pain issues didn't start right away.

Michael: 7:30

And how long did it take for you where you could be walking?

Christin: 7:34

I don't remember exactly how many months, but while I was still in the hospital I started doing occupational therapy, rehabilitation therapy, physical therapy, and I do remember having to learn how to walk again, especially because I had a compound fracture in my leg so the bone actually came out of the skin so I had to have a rod and screws and all that in my leg. But once I left the hospital I was in a position where I could walk with a cast and so it wasn't many months. I was able to regain mobility pretty quickly.

Michael: 8:07

So did you ever have a point where the pain went away?

Christin: 8:12

No, the pain did go away and I wasn't on any type of pain management medications or anything else. After about a year, after I'd had follow-up surgeries and hardware removed out of my leg, I did have a period where I was pain-free before, kind of, the chronic pain issues started.

Michael: 8:31

Was there any looking back potential triggers that gave the second round of chronic pain?

Christin: 8:40

I don't know if I could say there are triggers, knowing what we know about pain now, the genetic predisposition that some people have. I can look at my family history my mom has fibromyalgia, she has arthritis, my grandma has rheumatoid arthritis and polymyalgia, my brother has chronic back pain. So in my mind, knowing the genetics of pain, what we know about the genetics of pain, at this point in time to me it seems like I came from a genetically susceptible family. I don't know if I would have developed chronic pain if I hadn't been in the accident, you know, if something else that happened later on in my life would have triggered it, or if the accident was a triggering event. I don't know. I mean, like I said, I did have a couple of years in between, when I recovered from my accident, before kind of the chronic pain symptoms started. The only trigger that I can think of as, like I said, it kind of started in my neck, upper back area, which, again, if you break all of your ribs, you can't set a rib back in place. It's constantly moving as you're breathing, right, so it's not gonna set like a long bone does, and so when you look at X-rays you can see that. You know it's not completely fused together in a perfect line right, so my ribs are probably not aligning correctly with my thoracic spine. So it would make sense why, you know, if you have some muscular issues on my left side. You know I've I'll tons of trigger points on the left side of my trapezius and thoracic muscles always have even have hypertrophy on that side compared to the right side. So I don't know if that's a trigger, but I don't. If you're asking about, like any, any events that happened in my life or anything like that, there wasn't, you know, there wasn't anything that happened a couple of years later that I can distinctly point my finger at and say, okay, that's what started it all, you know.

Michael: 10:35

How active were you before your accident?

Christin: 10:40

Very active. Actually I was biking home from basketball camp. So, ironically, when when I was hit by the car so I'd always played sports since junior high school was an athlete went back to playing sports after I recovered from the accident and my degree is actually in kinesiology, exercise physiology, and I was a trainer for a period of time after I graduated from college, but before the accident very, very active, and I still to this day remain active. That that's been one part of my chronic pain journey that was probably impacted me the most. There was a period of time when things were so bad that any level of walking, any type of exercise, really exacerbated pain that I was in and that was probably one of the most challenging times in my life because it's always been. You know, activity and exercise has always just been part of who I am and part of how I cope. And so when you take drug trials with side effects combined with not being able to be active, the mental impact of that, the weight gain, you know all of it, that goes together just as kind of a vicious cycle. So I'm really grateful that at some point in time in my journey, even though it took many different drug trials, I was able to find one. That's really been helpful, along with a combination of other non-pharmacologic tools that I used where I was able to be, you know, exercise again and be active and remain that way to today.

Michael: 12:09

This is a quote from your website. You said that the day-to-day grind of trying to function as normal as possible when I look fine on the outside but feel horrible on the inside has taken a toll not just on me but those with whom I'm closest. Can you tell us about that?

Christin: 12:33

Yeah, I mean, that's one of the hardest parts about chronic pain, right? Is that, unless you have some sort of a traumatic injury, like a shrapnel injury or a condition like you know, reflex sympathetic dystrophy where people with chronic pain look normal, right, they don't have any scars or deformities or you know anything going on, and people would always say, oh well, you're hurting that bad, you look great, you know. So it's hard because it really is an invisible, you know it's an invisible illness. So you're trying to. And there's also a lot of stigma and bias still around chronic pain, right? Because there's no objective test or marker for chronic pain like there is for, let's say, diabetes or some other condition. It is what you say it is. So you know, if I'm talking to somebody and they say my pain is, you know, off the charts, right now it's a 10 out of 10, I can't say to them no, it's not, you know, it is what you say, that it is right. So the stigma and bias around pain being a subjective condition without objective markers is challenging. And then nobody wants to. You don't wanna feel, you don't wanna seem like you're less than you know when you're functioning in your career, your family, your friends. You know you people really don't unless you've been through it and or a super empathic person, you know a lot of people just don't understand chronic pain and so you know you try to get on as best as you can and not, you know, not be constantly complaining or looking down or you know whatever. It's just you kind of put on a face and then when you get home is when you crash my family. They're the ones that have seen what I look like when I get back from a two or three day business trip and I was on the couch for two or three days to recover. Or I went to my daughter's basketball games and the flashing lights and the whistle and the bouncing balls, you know, set off my head pain and I'd be at home with an ice pack, you know afterwards. So you know obviously those who you are closest with, who you live with, the ones that see you know what you're really like. You know when you're not in the public eye or trying to function day to day. It's not that you're trying to fake it, I don't want to say like it's a faking. It's just at some point in time you know you have to kind of get on with life and do the best that you can to live well with chronic illness and, depending on how severe your pain is or what you may be going through at that point in time, that can either be relatively easy if you're having a great day and or it could be extremely difficult. If you're in a flare, having a bad day, obviously it impacts your marriage, your spouse, people around you who love and care about you. They don't want to see you suffering. They want to do something to help you, but there's not a whole lot they can do really to help you. So it's just there's so many complexities involved in living with chronic illness and the impact that it has on people who are closest to you.

Michael: 16:01

One of the terms that we often use is the term masking, I think when you are trying to fit in or not ruin everybody's party Now to throw maybe a little levity in a serious topic, but if somebody was going to try to on two ends of the spectrum one, make your life extra miserable or challenging, and then the flip side, the types of supports that make it less challenging. So you mentioned I'm big into sports, kids have played sports, I've coached, talked about basketball and I'm thinking hypothetically in the past, going to a gymnasium with fans, cheerleaders, coaches screaming, yelling, a lot of sensory what impact would that situation or maybe another situation on your brain and body?

Christin: 17:02

Yeah, I mean at that point in time my headache disorder was in a pretty bad shape and I really wasn't on anything that was managing it very well. I would say that again, it's a complex response because part of me was distracted. So part of pain management for me has been distracting myself from the actual physical experience of pain and the mental part of pain. So when I'm really engaged in something I'm not thinking about how much pain I'm in. So obviously watching my kids play sports would distract me and for a short period of time I really wouldn't feel it. But then when I really would feel it is after I left or if I was having a flair and going into a gym with the whistles and the balls bouncing and people screaming and the lights and so on and so forth. It was torture, torture, and afterwards you know the sensory overload was just yeah and I would be at home with an ice pack and medication. A lot of people with chronic pain, and I fully attest to this. Everything is a trade-off right. You have to keep living your life as well as you possibly can, but you know there are activities that you may really enjoy but you're going to pay a price for it afterwards. So everything has to be weighed. If, for example, I had to leave for an important work trip the next day and I knew that getting to the airport and flying on an uncomfortable plane, getting to the hotel and being in a meeting room and all these things were going to be taxing, I may skip the game right. And that comes with checks and balances or weighing the options, because now I'm not there for my child because I know, if I do that and try to do this work trip on the same back to back, that that's going to be way too much. Everything just comes at a cost and every decision that you make has to be carefully weighed, depending on what you have going on that day or that week and what you feel like you can physically and mentally do. You know a lot of this is also about keeping your mind in a healthy place. I sit on a grant review panel for a federal agency and one of the researchers that leads the grant panel we were on a break and he came up to me and he said how do you do this? You know how do you live like this and it's not easy, but a lot of it has to do with, you know, doing the things that keep your mind in the healthiest place possible. Because I describe like pain. You know people say well, what's it like when you first start experiencing it? And I have one of the slides that I use in presentation a picture on the left of a person with a ball and chain on their foot, but the ball is small right and they're like running up steps. And then the image next to it, the ball is 10 times bigger and the person is stationary. And that's how I describe the journey. You know, when you're in the beginning of it, you're kind of motivated. You're like oh, you know, I just need to find the right specialist and I'm gonna find a treatment that's gonna work for me. And even though you're carrying around the weight of the pain and the suffering that goes along with having chronic pain, you know you're still pushing forward and you're pulling that ball and chain with you. But as time goes on and you try this treatment and try another treatment and you realize this is not gonna be a cure, right, this is gonna be a lifelong chronic illness that I have to learn how to manage. The weight just gets bigger and bigger and bigger and it's a lot harder to motivate yourself to kind of run up the stairs with this huge ball behind you, weight behind you. So I think one of the biggest challenges is, in addition to the physical suffering and knowing that you're dealing with something that can't be quote unquote cured is okay. Well, I have to live the rest of my life like this. I've found treatments that have reduced the severity of my pain and helped me lead a more, have improved quality of life, but the pain is not gone right. So there's a definite mental and emotional component to all. Right, I'm gonna live like this the rest of my life. How do I do it? And do it well, right On the good days, the bad days and everything in between. So it's definitely challenging.

Michael: 21:21

So, on the positive side, what have you found for yourself to be helpful coping strategies or tools?

Christin: 21:31

Yeah, so I mentioned one already. So exercise activity for me is a big one. Just being able to engage in healthy physical activity, even if it's just walking. I modify every day what I do based upon how I feel and what's going on in my body, but try to be active on some level every day that's a big one For me. Getting outside and I grew up on a lake in Wisconsin and I live near the ocean. Now I've always loved the ocean, so being out on the boat, being on the beach, anything that's nature related, like that, for me, is a big one. It's just about removing yourself from your living room, your couch, your house, because when you're not well, those four walls can close in on you really quickly. And for me, just getting outside gives me a different perspective. And then I've also taught myself photography in the last six years, so for me that serves. In the beginning it was like I was challenging myself to learn something new, do something different, and it was actually during one of the worst periods of physical pain and depression that I had had been in my life. But at some point it's that I just get up for 30 minutes and go being in Rhode Island, where I'm right now. We just are surrounded. We have 400 miles of coast here, surrounded by beautiful beaches, cliffs, lighthouses, anything. Just go for, you know, say to myself just go for 30 minutes and challenge yourself to take a picture of something you haven't taken before, or see something in a different way than you have before. And then eventually I started teaching myself photography, which served to distract me because I was engaged in something new that I was learning. So it did distract me from the physical pain for a period of time while I'm doing that, but it also gave me a different perspective, right? So I started seeing things in different ways, and I've also tried to use my art and photography and way to inspire other people and give them hope that there can be beauty in suffering. There can be positive things that come out of periods of difficulty in your life, and when I do share my photography and art with other people, it's amazing the kind of stories that I hear from others about how they've used painting or sculpture or whatever it is to cope with their illness. I would say those are a few of them. I also just give myself permission to not be perfect every day. If I'm having a really bad day. I am definitely a perfectionist and type A person, right, so I feel like I should be accomplishing something every day, and I should be. I've given myself permission on bad days to just have a bad day and to take care of myself. That's definitely been another learning lesson in terms of prioritizing myself and not feeling bad about self care, taking time to do those things for yourself, because if you don't keep your own mental and emotional state well, it's hard to do that for anybody else in your life, right?

Michael: 24:35

For people who want to see some of your photography and get connected with you. How can they do that?

Christin: 24:44

So the name of my photography is Resilience Photography. So I have a website it's ResiliencePhotographycom and then I also have a Facebook and Instagram page, which is ResiliencePhotographyRI.

Michael: 24:58

Great, We'll have links for that in the show. Any thoughts for other people out there who maybe are looking for a creative way and maybe considering starting in photography. Any suggestions for them, especially if they have some struggles with pain and some basic ways to get started?

Christin: 25:21

Yeah, I mean. I think that if you want to learn a new art, of course there's lots of classes that you can take. Both locally you can look for classes, and there's lots of stuff you can do online to teach yourself. People with phones these days can take some incredible pictures as well. I would just say challenge yourself to go somewhere, take a walk and see things differently. Try to see things differently than you've seen it before. Focus on a flower or a building or some perspective. Challenge yourself to look at a perspective that maybe you haven't seen before. I actually had this experience recently. I'm not an avid bird lover. I do mainly photography of marine mammals seals, whales and dolphins but I have a friend of mine who's a photographer and he mainly does birds, and I couldn't understand the fascination. But one day I just sat on the beach and the seals were nowhere to be found, and so the only thing that was there were birds right, and so I just challenged myself to sit there for an hour and just watch them. Right, and it happened to be during a time after some of the local seabirds here had just had their chicks, and there were hundreds of them just sitting on the shore and the moms were going to dive in the ocean to get the fish and then bring it back to the chicks that were sitting on the beach. And I just watched them do this process for like 45 minutes to an hour and one bird would dive and get a fish and then four or five other birds would chase that bird before it was trying to get back to the chick on the beach, texted him afterwards and I said I get it. Now I get it, like there's a story here, there's a relationship, there's an interconnection, right, and I had never really stopped to look at birds before because I've just never really been interested in it, you know, it just hasn't been an interest to me. But challenging myself that day, mainly because the stuff that I went there to photograph wasn't available, that's just one example of just stopping for a second and just taking it all in. So a lot of times we're always in a rush to do something right, we're trying to get here, trying to get there whatever, but just taking a walk and listening to the sounds that you hear, looking around at different things that you haven't seen before, challenging yourself to observe something like that day I did with the birds that I never probably would have you learn to see things in a different perspective, and it opens your eyes to things that you haven't seen before, and in a way, it's really interesting because it does give you a sense of hope as well.

Michael: 27:56

A couple of thoughts. One for many people that I work with with chronic pain syndromes. They are often naturally more curious. Along with that creativity, and when you look at this camera as a tool to discover and look at the world around us in ways that we may not have paused to consider, and you can discover unique things and beauty and creation are really incredible when you look at the ability for birds to fly and all the different colors and wings and baby birds and the interactions with their parents. About your camera, iPhones are nice and I think the majority of pictures now are taken on iPhones or Ion's iPhones. But what are your two favorite camera photography cameras and lenses that you like to use?

Christin: 28:53

It depends on what I'm doing. So I shoot with a Nikon the D850 and I do everything from landscape photography to marine mammals, like I said whales, seals, dolphins so I have everything from like a 24 millimeter wide angle lens to a 500 millimeter zoom lens. So it really just depends on what I'm photographing.

Michael: 29:15

How many lenses do you have that are?

Christin: 29:18

I think I have eight.

Michael: 29:20

So that gives a good variety. I'm an amateur photographer and all I have is two lenses, kind of a semi-telafoto and then a mirror one. But I do think when you're trying to be more creative, there's a lot more you can do with those types of lenses that you can never do with a phone type.

Christin: 29:38

Oh, absolutely.

Michael: 29:39

Yeah, you know, you can play around, and that brings out the creativity.

Christin: 29:43

Not that.

Michael: 29:43

If you don't have that, I don't know how much recommendations for a camera. But if somebody wants to take the step beyond an iPhone, what would you recommend as a reasonable starting package? And I guess everybody's price point is different, but do you have any thoughts on where they might start?

Christin: 30:00

Yeah, I would say, actually go to a photography store and discuss the options or read some reviews online, because every single brand of cameras has a range, and that's a question I get asked a lot and I'm always like it just depends on what you want to do. I started with my phone and then what I wanted to capture wasn't, you know, I couldn't do it, you know, with a phone, so I started with a, I think a Nikon 7100 or something like that, with one lens, right. But there's just so many options from all the different brands it's hard for me to make one recommendation, but there's a lot of great reviews online. If you go, that will compare different brands, different price points and then also kind of what you want to do with it, right? So do you want like an everyday camera that you can use pretty much anything, whether it's landscapes or birds or whatever? It's hard for me to make one recommendation, like I said, but definitely check out some photography reviews online or go to a store and talk to people that have a lot of experience with different brands and let them know kind of what you want to do, where you're starting, and they'll have great recommendations for you for sure.

Michael: 31:12

Awesome. Well, thanks so much for your time. It took a little while to finally catch up and finally get a chance to do the interview and get a chance to share this with others, offering validation that people who are going through this are not the only ones, going to offer some other ways of coping and think of the camera as a tool.

Christin: 31:32

Yeah, absolutely, thank you.

Michael: 31:35

Thanks for listening. Fibro Nation. I hope that hearing Kristen's story both can validate what you may have gone through at some level, as well as looking at some tools to help live better, maybe even consider using photography or some other creative art. I'd love to hear from you as well. You can email me with any feedback doctormichaellenz@gmail. com thoughts or suggestions at . Until next week go, team Fibro.