EP 16 | Jason Herterich : "The Invisible Fight" Living with Chronic Illness

Can you imagine going from a university athlete to a bedridden chronic illness patient in the span of a year? That's precisely the journey our guest, Jason Herterich, had to navigate when he was diagnosed with fibromyalgia and POTS. Jason talks about his life-altering experiences, the challenges of living with an invisible illness, and the importance of joy and community support. Get an intimate glimpse into his story, that's sure to pull at your heartstrings and inspire you.

Ever wondered what living with chronic pain is like? Jason gives us a candid picture of life with fibromyalgia, the physical and mental toll it takes, and the various treatments he tried to manage symptoms. We also discuss the mental health struggles he had to grapple with, and the significance of seeking support in such times. This episode takes you into the world of those living with chronic pain - their battles, their trials, and their triumphs. You'll walk away with a greater understanding and empathy for those living with invisible illnesses.

Jason's journey, filled with challenges, was also marked by a significant turning point. He regained his health and independence through integrated care and a mindful approach towards life. Beyond speaking about his health, Jason shares his journey as a disability advocate and his life post-diagnosis, emphasizing the power of active decision-making and connecting with joy and purpose. This episode isn't just about a life-altering diagnosis; it's about finding purpose amidst pain, and the undying spirit of resilience.

Listen to Jasons Story on CBC Listen: https://www.cbc.ca/listen/live-radio/1-115-storylines/clip/15893444-the-belief-score

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Transcript

Speaker 2: 0:09

Welcome to the Pivot Point stories of courage, resilience and reinvention. I'm your host, jessica McGahn, coach, producer and creative, whose mission is to normalize the human experience, ignite the soul and move you from feeling limited to limitless. Please connect us, and my hope is that within this series, you will find at least one story that resonates with you on a deeply personal level, one that speaks to your soul or your current situation, that will motivate you to keep moving forward, inspire you to make bold, brave choices in your own life and help you feel less alone in the process. Now I have a question for you have you ever experienced debilitating pain and had no one believe you? Have you ever heard of the invisible illness?

Speaker 2: 0:59

My guest today is Jason Herterick, whose life was changed forever after developing fibromyalgia and postural orthostatic tachycardia syndrome, also known as POTS, following a sports injury during his final year at university. Over the span of five years, he went from being a university student athlete with an active social life to a mostly bedridden chronic illness patient. Today's episode is all about Jason's journey navigating this life-altering diagnosis at such a young age, what it's like living with a chronic, invisible illness, the lessons he has learned and the power of joy and community support. Today, following a partial recovery, jason has launched his own podcast, discomfort Zone, and co-hosted another show, invisible Not Broken, with the aim of helping to promote awareness and understanding of what it means to be chronically ill and disabled, and to help create community. He has served as an advisor for the Center of Independent Living in Toronto and D-NEX Accessible Media Lab, a lab dedicated to training and supporting storytellers with disabilities to produce authentic stories on disability. He is the former 2021 TD Fellow on Disability and Inclusion at the Walrus and has also reported on disability for CBC and the local.

Speaker 2: 2:20

Jason graduated from Queen's University with a Bachelor's of Applied Science in Engineering and Physics. He currently works as an energy consultant for brightly, software sustainability and energy analytics. In his spare time, he enjoys playing with his six nieces and nephews, training for triathlons, exploring new hiking trails and playing guitar. Jason has a wildly powerful, inspirational and educational story to share with you today, so, without further ado, let's dive in. Jason hi, welcome to the PivotPoint podcast. It is so nice to have you here with me today.

Speaker 1: 3:00

Thanks, jess. I'm really really excited for this conversation.

Speaker 2: 3:04

So anyone who is listening, jason is actually a friend of mine. We met a few years ago. We used to go to some cottages together, but it's been quite like you said before this turned on. We have not connected since the global pandemic, really.

Speaker 1: 3:18

I know, yeah, just like a minor world event that happened a couple of years ago that kind of disrupted everything. Yeah, it's kind of crazy how much time has passed.

Speaker 2: 3:28

And I think you might be one of my inspirations in creating my own podcast, because throughout our friendship I remember you being at the cottage and telling me about your podcast and the things that you were doing. Can you tell us a little bit about your podcast and what it's about and what you look to achieve with it?

Speaker 1: 3:46

Sure, yeah. So my podcast. I really started it about six years ago and, to be honest, I didn't really have a heck of a lot of aim when I started it. I was like I'm going to go and tell stories, and it ended up evolving over time. But it is really about what it's like being chronically ill and disabled. I live with fibromyalgia and another condition called POTS or postural orthostatic tachycardia syndrome, which is a total mouthful. But yeah, it's really. I started it telling personal stories about my life, trying to give insights into what it's like. What are the challenges, what are the triumphs, how do you adapt when you're living with an illness and you're trying to get out there, trying to get into dating, manage relationships, everything like that. And from there it kind of evolved into interviewing and featuring stories on other chronically ill advocates and disability advocates as well. So it's been a really amazing experience.

Speaker 2: 4:49

Wow. Well, thank you for the work that you do and the stories that you share. I knew nothing about chronic illnesses before I met you Like. I remember meeting you two and being like I don't understand, because to me you looked healthy, you seemed fit, you were at the cottage having a good like it was really hard to understand the scope of what it was like to be in your body. And even still I don't think I fully understand, because I don't know if I could ever understand how severe your illnesses.

Speaker 1: 5:24

Totally, and I mean that's the nature of invisible illnesses. You know you can. On the surface you look well and a lot of the time it's also like you're hiding your symptoms. You don't want to be the center of attention and everybody being like, oh no, you're feeling really bad. So you end up like, as a result, over time I've just kind of adapted to like I'm just going to hide it and I'm feeling kind of shit, but I'm just going to put on a smile anyways, and you know, power on through.

Speaker 2: 5:49

That's a lot of work too, like having to emotionally and mentally manage those things when you're just trying to enjoy yourself. Having to suppress what's actually going on like that sucks too, oh absolutely yeah. Well, I'm excited to hear your journey, because you did not grow up with Fibromyalgia. This was something that occurred later on in your life, from my understanding. So before we get into your diagnosis, perhaps you could tell us a little bit about who you were and what life was like for you before your illness.

Speaker 1: 6:23

Sure. So I developed an illness around a university. So in my very in my fourth and final year at Queens University, when I was studying engineering so at the time I was very much a type A personality I was. I was like never, ever resting. You can ask my host mates. I was, either, you know, out partying, I was out studying. I was at the gym. I was on one year in university I was on the rowing team and then I was on the triathlon team. So I was like a very, very active person. I was somebody that really thrived on it, though Like I didn't, there were times when I felt really tired, but at the same time I just like thrived on being around other people, you know, working, studying with people, like going out and yeah, I think I had an inability to rest. It was like I just I didn't even know how to do it it was I was just always out there, being active, studying and everything else.

Speaker 2: 7:26

So from the sounds of it, you were very physically healthy, happy, a normal, normal college university kid.

Speaker 1: 7:36

Exactly yeah.

Speaker 2: 7:38

When did things start to shift? Was it a sudden shift or a very slow, slow? What?

Speaker 1: 7:46

am I trying to?

Speaker 2: 7:47

say Like a slow, slow burn, slow rise of symptoms.

Speaker 1: 7:52

It was. So there was a very like particular instance that triggered everything. There was an acute injury that I had and that later triggered a gradual onset of like chronic symptoms, so I can get into that. So the day where everything kind of changed for me was I was on a recreational basketball team and it was on like a Sunday night. I had caught a rebound and I caught it. I twisted past the ball to my point guard and right away I just felt this really, really sharp stabbing pain in my rib cage and I knew like right away I was like something doesn't feel right here and I tried like jogging, I took like two steps and then I was like I can't even like it hurts to breathe right now. It just felt like I'd been stabbed in between the ribs and so I like when I lie down on the on the sidelines I couldn't get up after the game.

Speaker 1: 8:44

So I got there, was an ambulance that kind of came and took me to the hospital and at the time, like the I don't know the, the doctor in the ER was kind of not, he didn't seem to think it was all that serious. He was like oh yeah, it's an intercostal muscle strain. So those are the muscles in between your ribs that you need, that you use for breathing. So really, in there's a very big difference between having one of those injuries versus like breaking an arm or breaking a leg or something like that. If you break an arm, you can put it in a sling, you can like immobilize it. You're not using it at all. When you injure your intercostal muscles, like, you can't take a break from breathing. You have to breathe 24 seven. So it was like excruciatingly painful.

Speaker 1: 9:31

I basically spent the next like week in bed and just trying to recover. After that I just kind of had to push through everything and get myself back to school. I was still experiencing like pretty severe pain for a while but worst of all, I had to play catch up because I just took a week off of school. I was also working two jobs as like a TA and as a as a marker for another course. It was also like in my fourth year of university I was trying to find a job for when I graduated. So you know, at the time I was going to Toronto, I was going up to Calgary like for job interviews and everything, and it was like I went from being in bed, recovering, unable to do anything to all right, like let's go, let's push. You know working until 4am to try and get caught up in all my classes.

Speaker 1: 10:20

And what I what I believe caused my illness and what other doctors have you know, affirmed as well is that it was a combination of the physical injury and severe burnout that ended up causing a lot of my symptoms. So the way that it works, it's like pain is this alarm going off in your brain and it's trying to protect your body from causing further tissue damage by saying, hey, this cause, you know, this is not good, stop doing this. And I was very much like, well, no, I kind of have to. I got to graduate, I got to do all these things, so I pushed through it. As a result, your stress level gets higher. That makes your pain even worse, and then, when you're in a lot of pain, that just makes you even more stressed. So, months and months later, doctors believe that my injury actually healed, but my brain had evolved to experience heightened levels of pain even after the injury was gone. Just it's, though, it's um. Have you ever heard of neuroplasticity before?

Speaker 2: 11:27

Yes, I have yeah.

Speaker 1: 11:29

Yeah. So it's basically like the brain's ability to adapt and to respond, and in my case, my brain was like oh, I'm trying to help you here. I'm going to like send this stronger pain signal. It was trying to protect me, but at the same time, it was really ended up causing me harm and a lot. Basically, that entire series of events ended up causing my chronic illness.

Speaker 2: 11:52

Wow, I am shocked. I had no way I thought fibromyalgia and chronic illness was for some reason in my mind. It was something that you were like born with, that just like comes out later in life. Like I don't know why I thought that like, but I thought it was just something that's like genetic that will come out later. I didn't. I had no idea that that was caused from how you explained it.

Speaker 1: 12:20

That's I'm lying down right now it can. So I mean, like as you described it, a lot of chronic illnesses can be genetic and you know they're like you get. You have it at birth. There's lots of genetic illnesses and stuff like that and I like there's been research done that shows like there is some genetic component of fibromyalgia as well.

Speaker 2: 12:39

Okay, so I'm not totally wrong, no, no, yeah, you're not Just different than what your face is. Got it okay.

Speaker 1: 12:45

Yeah, and like it can be caused in many different ways. Like some people get a viral infection and then they end up with fibromyalgia. They like just don't fully recover afterwards. Sometimes it can be by, you know, people experience some emotionally traumatic event and they develop fibromyalgia afterwards. So there can be like a combination of many factors.

Speaker 2: 13:07

What's the definition of fibromyalgia?

Speaker 1: 13:11

Yeah, that's a good question. I mean in terms of, like medical definition I'm certainly no expert on anything like that. My way of describing it is basically like your brain, there's an alarm system going off in your brain. It basically it's a malfunctioning alarm alarm system. So pain is an alarm system. It's trying to protect you. You know, if you stub your toe really badly, you're going to get a pain response that's going to say hey, don't do that again, because that's that's going to injure my toe. Whereas if somebody with fibromyalgia, they're having that alarm system go off even when they're not stubbing their toe or when they're not doing something painful. It's just their brain is adapted in such a way where, yeah, the pain system is going off all the time.

Speaker 2: 14:02

I've got two questions. I've got two big questions. The first one is so, knowing that it's this alarm system in your head that is causing physical pain in the body as a way to protect you from hurting yourself further because yours stemmed from those intercostal muscles Is that where you experience a lot of your pain, or do you experience it differently now?

Speaker 1: 14:28

Yeah, so at the beginning I did experience it more severely in my rib cage. Over time it spread. So in my final year of university, for the first couple months I'd really severe, sharp stabbing pain in my rib cage. That was probably when there was still an acute injury going on there. But even after that healed, it ended up spreading to the other side. I had the exact same pain in my left rib cage. It went up and down my back, it went down to my legs, up to my head, basically body wide. So like even nowadays like now it's more of I just have this deep, dull ache all over my body from head to toe. It's less severe now than it was in my worst days, but I still feel it everywhere.

Speaker 2: 15:14

Yeah, well, that kind of goes into. My next question is is there a way to retrain your brain for safety? Is there a way to heal from this completely? Is there a way through any kind of therapies physical or mental therapies to correct this?

Speaker 1: 15:33

Yeah, yeah, that's a good question. There certainly are. I mean, there's no. So there's no cure to fibromyalgia. There's no magic pill Like you take this and you're better, and there's also no one treatment plan that will say cure every single patient or even like any individual patient. Like I don't know if I'll ever be fully cured from fibromyalgia. I've improved significantly. I'd say I've had like a 70 to 80% recovery to where I was at my very worst, but it's possible that I'll have it for the rest of my life.

Speaker 1: 16:09

But there are like things like I do a lot of mindfulness, I do meditation, spending time in nature, just things that really like relax your brain, like bring it to a sense of peace and safety. And then also like reintegrating exercises, like very slowly. Like you know, exercise it's controversial in like the fibromyalgia community. For some people it seems to work well, for others it seems to make their symptoms way worse and they'll have like a very big crash after they try exercising. So I can really only fully speak on my own experience. But like doing yoga, tai Chi, lots of water therapy. For like a long time I was doing that and since then I've like added in a lot more things like swimming, biking, running. I did a triathlon this past summer so I got like fullback kind of into exercise mode like weightlifting, rock climbing, like all that stuff, kayaking that's awesome yeah.

Speaker 1: 17:10

It's been really nice to kind of rediscover that I got completely away from that when I was like really, really sick, where like there's no kind of movement, felt safe. Now it's been nice to re-like experience all that.

Speaker 2: 17:24

Yeah, I would love to hear because clearly this was the pivotal moment you getting this diagnosis, this injury, more specifically, that moment of injury and this diagnosis. Do you remember the day they told you it was fibromyalgia?

Speaker 1: 17:43

I do. Yeah, I would say it was in around December 2013. So then I was still at that point. I like I was getting to the point where I was working reduced hours at work. I was at an engineering firm and I was getting like weaker and sicker and in more pain by the month and just way less energy, and I found it even like very hard to concentrate. I found it hard to sleep at night. My whole body just felt like totally dysregulated from the pain and everything I was experiencing. I was still holding out hope.

Speaker 1: 18:19

At that point I was like maybe this is still like some kind of muscle tear that just didn't heal properly and it's like or some kind of like nerve injury that's easy, like easily fixable.

Speaker 1: 18:32

And I remember a doctor came in and said, like you've got fibromyalgia or we think you've got fibromyalgia, and at the time it felt like a life sentence, just fibromyalgia. Patients don't have significant recoveries. And you know I had had a doctor who previously told me like I don't think you're ever gonna like get better from this, which really like heart crushing thing to hear where it's like okay, yeah, give up all hope of like having a meaningful and enjoyable life, like that was kind of the way I you know that was how I received the message back then and it, yeah, it took me. It took me quite a long time, you know. Before I don't know, I developed like some kind of hope again, but for because for years after that too, like I was at the very beginning of like a decline that was like maybe two years into my chronic illness experience, but I like continued to get worse basically for the next three to four years until like 2017.

Speaker 2: 19:35

That was kind of when my symptoms hit their peak and and yeah, I can't even imagine how difficult this moment must have been to navigate, because not only were you a very active person before all this, but you're also like in your twenties and a moment in life where everyone is like stepping out on their own and they're going for what they want and they're in school and they're going for jobs and you have this setback that you have to move back home correct Like you have to go home to care. You're in pain all the time. You can no longer be active. I'm sure your social life suffered dramatically from this Like. At such a pivotal moment in any person's life, really for you to be experiencing this Like that's that would be really hard. Do you remember the mental health struggles that you experienced during this time?

Speaker 1: 20:28

Yeah, the mental health struggles were quite severe, like as you were talking about, there's this loss of everything, being like a 23 year old and you know I had ambitions of like traveling the world. You know advancing in my career, starting a family, like just going out and meeting new people and you know, doing whatever activities that brought me joy, like going on doing triathlons, joining sports teams and all this and then to suddenly like, not only am I unable to do those things, but I'm unable to even like work and you know provide for myself. And you know becoming over over years, over the span of like multiple years, I became more and more like dependent on my parents. You know cooking for me, cleaning for me, you know, for so I can. Yeah, I'll get into like the mental health struggles of it.

Speaker 1: 21:20

Around that time I was internalizing a lot of it. I really didn't know how to communicate to my loved ones about, you know the mental health struggles associated with it. I think I fell into, I don't know. There's, I think, a lot of young men especially to. There's this kind of like you want to appear tough, stoic, independent, strong. So there's, I know, around that age for me, I wasn't really used to embracing vulnerability at all. I didn't introduce a lot of that into my experiences. So people would ask me, like how I'm doing, and my responses would usually be like, oh yeah, like you know, I'm having body pain but like, oh, it's going to be getting better, like soon, and I'm on the upswing. It was really like minimizing it, trying to like I don't know, brush it aside and not really not really talk about it, which it, like it just kind of made it more isolating, feeling like I couldn't open up to other people about it. So you end up internalizing so much of it and it just kind of breaks you down over time.

Speaker 2: 22:30

It must feel like some sort of jail, like a trapped in your body type, because your mind is working Like you're able to think and feel these emotions, but what I'm hearing is like it was really hard for you to communicate them, while also simultaneously not being able to do all the things that you want to do.

Speaker 1: 22:48

Yeah, yeah, absolutely. And it was like it was a couple years before. Basically, things got really really bad. So I went from, like you know, I was able to still go out on some walks, maybe for an hour, and then I'd have to rest for a while. You know, I do like some form of exercise, but very minimal. Over the next few years, I fell into a downward spiral to the point where I couldn't walk up and down the stairs. I spent like 23 hours a day in bed, like I'd get up every like 15 to 20 minutes for like just to walk to the end of the hall and back, but I lost the ability to do anything. I wasn't even like feeding myself. My parents would be spoon feeding me every meal. So just all of that.

Speaker 1: 23:36

It got to the point I believe it was in like 2016 when I just started reaching out to friends and just being like hey guys, like this is like really really bad and I'm in a really tough place right now and I just could like use all the support that I could get. And from there, like people responded way better than I could have possibly imagined, like that was really a moment where a lot shifted, like a lot of people just rallied and I had like never really went, even like two days, without a visitor coming to spend like several hours sitting by my bedside and hanging out with me, and it made all the difference in the world. It just kind of I don't know. For me there was a realization there like resilience it really takes a village. There's that like phrase it takes a village to like raise a kid. It takes a village when it comes to a chronically ill person like you need support. You can't do it on your own and you're way stronger when you have support from other people.

Speaker 2: 24:38

Yeah, and good for you for reaching out and being like. I gotta be honest about this, because it sounds like your community really loves you from the sounds of it and how people rallied and showed up but they needed almost like that permission from you or to hear it from you. That A it was that bad. Or a lot of the times I, like it, can feel like, oh, I don't want to bug that person, to like not knowing whether or not they even want to see you, like as the friends, like do I go over? Or like do they want to be alone right now? Like those questions, it seems like you open the floodgates by by reaching out, and I'm so glad that you did. Did you ever reach out to a therapist? Or or were you working with a physical therapist, mental therapist, to help progress in your healing?

Speaker 1: 25:29

Yeah, there were I. There were definitely times when I saw therapists over the years I'm trying to remember exactly when that would have been, but there were in, like I think around 2016, around 2017. I was seeing one as well, kind of like on an ongoing basis every couple months, and I remember like I, they, like one of my therapists just really recognized. She was like you know, you're really hard on yourself and I think, like I don't know, through that like very type A personality, like very driven student athlete and everything.

Speaker 1: 26:07

I just this tendency to like put extra pressure on myself, to and like, if I failed, then to be like, okay, that's on me, I'm just not trying hard enough. But that also, translated to when you become chronically ill, like that kind of mindset is no longer helpful. It's like then I was feeling like, oh, I'm at fault here, like I must be doing something wrong and that's why I'm sick, rather than like this is just a really complex illness that is, like you know, very, very, very hard to manage and treat. So, yeah, therapists were definitely really helpful, at least like helping me recognize my own thought patterns, like helping giving me suggestions on ways to manage my own mental health. Yeah, just really being in here as well, because I think everybody needs that sometimes.

Speaker 2: 26:58

What is the belief score? Mm. So yeah that was.

Speaker 1: 27:03

This was a story that goes back to 2018. I was attending a film screening for a chronic pain documentary called pain warriors, which you can watch on Amazon Prime. It's a really great documentary by a friend of mine, tina Petrova, who's a Toronto filmmaker. But there there's a film screening in downtown Toronto and I went down to that and it was entirely for chronic pain patients to go and like, give feedback, to watch it, just to like I don't know. It brought everybody in the chronic pain community together. So I went down there and at that time I had hardly connected with others in the chronic pain community, at least like in person. I had some chronic pain friends online, but I still felt quite isolated and I didn't feel that sense of community.

Speaker 1: 28:00

I was sitting at the bar before the film screening started and some guy just turns to me and you know, we, we like, we're chatting, and he's like I, you know, we both talked about how we both had chronic pain and he was like so what's your belief score? And I was like what, what's a belief score? He's like Well, your friends, your family, your doctors, like which ones believe you? And I was like Well, right now, technically all of them believe me, so I guess my score is three. And he was just like, oh my God, you've got a hat trick. Like that's incredible. He was like blown away that I had a score of three out of three. For him his score was zero.

Speaker 1: 28:41

Like many of his friends didn't believe that his pain was real. His family, his doctors, like he had lost a lot of people in his life to that. And it's such a like, it's such a painful thing when you're going through something in life that's incredibly, incredibly hard and these people who you would hope would be there to support you are just thinking that you're making it all up. Like fabricating the entire thing is some kind of like ploy to get attention or for whatever reason. He was in his fifties and you know he had chronic pain for like 30 years, so he had experienced this for a really long time. And I just think this idea that the guy made up something called the belief score like he came up with that concept Clearly, clearly, like it speaks to I don't know the volume of like and like how common it is to be disbelieved as a chronically ill patient.

Speaker 2: 29:38

Yeah, I mean what you called it earlier. It's the invisible illness and, like I said, like I, when I met you, I was like I don't understand. Like he's he's held, like I believed you, but I couldn't understand it, Like I couldn't, I couldn't understand it, but so I I. It hurts to think that so many people go through life not being believed for for such a serious, painful struggle, especially by his doctor, like his doctor, not even his doctor believed him.

Speaker 1: 30:09

So that's, that's really, really common. Yeah, doctors, you know there's a lot of people out there who I've who I've spoken with, who have said, like their doctors don't believe them. You know people can be basically blamed, saying, oh, you're just seeking like drugs, you're seeking opioids to like so that you can go and get high. There's like all sorts of you know, there's all sorts of reasons why I don't know people will disbelieve other people. Or just simply looking like. If you looked at him again, he didn't look like he had a painful he wasn't grimacing.

Speaker 1: 30:45

He wasn't, you know, like really hunched over, like grabbing himself or anything. It's. Chronic pain looks very different from acute pain. It's like you got an injury. You stub your toe like you know you're going to visibly show it Chronic pain. It's like when you've been living with something like that for years. It's like it becomes your normal. So you like you adapt to it. Like you, I don't know. Yeah, you're not going to show the same visible signs as if you know you had an acute injury.

Speaker 2: 31:16

It makes so much sense. It becomes your baseline, it becomes something that you are used to. I'm the best. Please forgive me for this comparison, but the best thing I can compare it to is like period cramps, like be as women, like I specifically go through period cramps every month. So like how I manage that pain and how I navigate that pain is better than when I was a teenager. I'm still experiencing similar symptoms, but how I carry myself throughout them is different. So I that's my best comparison to understanding- I think that's a great analogy.

Speaker 1: 31:50

I mean, I've never experienced period cramps.

Speaker 2: 31:54

We think we're aligned here.

Speaker 1: 31:55

Yeah, I think so so is there no test.

Speaker 2: 31:58

There's nothing that a doctor like. There's nothing that's going to show up on an MRI or a body scan that is going to show fibromyalgia.

Speaker 1: 32:10

No, it's like for a while it was diagnosis by exclusion, meaning that if you tested negative for rheumatoid arthritis, like neuropathy, all these different chronic illnesses that have chronic pain associated with them, then basically if you rule everything out, then you would get the diagnosis of fibromyalgia.

Speaker 1: 32:30

Now it has kind of shifted a little bit where it's now based, like if you have all those symptoms of fibromyalgia, then you can get the diagnosis, because it often like coexists with other comorbidities. You know, if you've got other illnesses, you're very likely like fibromyalgia and POTS, the two illnesses that I have those go often go hand in hand. So, yeah, there's often like now I think there's. I'm not like super up to date with all the research on this, but last time I checked it was like if you have what are called trigger points, which are like painful points that are at like very specific points across your body, then you can get diagnosed with it so there can be like a kind of physical exam for that. But there's no as of right now. There's no. Like you know, if you get this MRI then and it shows something that you're going to get the diagnosis like medicine just hasn't advanced to that point right now.

Speaker 2: 33:31

What is POTS?

Speaker 1: 33:33

POTS is Postural Orthostatic Tachycardia Syndrome and what it basically means. When I go from sitting to standing or lying down to standing, my heart rate will jump up by about 40 beats per minute. So it's like you know, when you stand up really, really quickly and you get that head rush for a second.

Speaker 1: 33:56

I hate that feeling yeah that's happens to me all the time, so when my POTS was really, really bad, I would get that feeling, but it would last for like five to 10 minutes, like just straight until I like you just see stars and it would be black and you just be like.

Speaker 1: 34:12

Yeah, I'd be like holding onto the walls. They were like a few times where I fainted and basically like my under. So my understanding of POTS again, I'm no like medical practitioner or expert on it, but my understanding is basically, when you've got it comes down to that whole like central nervous system dysregulation. When you're in pain, a lot of your secondary body systems and like the way that your brain controls them gets dysregulated. So you can think about it.

Speaker 1: 34:44

If we go back to you know, back when we were hunter-gatherers, like living out in the woods and there was a bear that was chasing you, you would have adrenaline flowing through your body, there would be the stress response and it would basically be like all your muscles you want to be able to run as fast as you can, like to be able to fight if you need to, to do whatever, all those secondary systems in your body, like digestion, sleep, a whole bunch of like cognitive being able to like think very clearly all those are going to go out the window because they're not as necessary for survival as being able to run as fast as you can in that moment. The same sort of concept applies to fibromyalgia patients as well. Like you know, we have pain that's constantly going off. There's an alarm bell in our brain that's being like there's an issue here like go and deal with it, except you can't because it's fibromyalgia and it's a chronic illness. That's kind of there 24 seven.

Speaker 1: 35:47

So there with it comes all sorts of like other types of dysregulation with sleep, with memory, with man, like trying to regulate emotions, with fatigue, everything like that digestion. And one of it is like my brain, basically the brain signal that goes from my brain down to my heart. That's kind of telling it like how do you regulate your heart rate to get blood to all the different parts of your body and to get oxygen to all the different parts of your body? Like it just becomes a little bit dysregulated. So when I go from sitting up to standing up or lying down to standing up, my heart just kind of doesn't know exactly how to respond.

Speaker 2: 36:30

Great. So it basically activates your heart to pump even faster because it thinks that you're under duress. You're not, which causes that so do. They commonly come together because they're both kind of like these the signals in your brain for stress or danger are kind of tangled or fried. I don't know what the medical term would be, but like that they're misfiring.

Speaker 1: 36:56

Yeah, exactly, that's totally like a lot of these kind of misfiring types of illnesses kind of go hand in hand.

Speaker 2: 37:05

So we've learned a lot about what this is and how hard it was for you to go through navigating this at such an early age, when things start to feel like they were getting better for you.

Speaker 1: 37:23

Midway through 2017, that's when things really started to shift for me. I got into an inpatient program at Toronto Rehab in Toronto and their medical team was just incredible. For the longest time, navigating the medical system was just an absolute nightmare. You're like said, from specialist to specialist, you often have to wait four or five months to get in to see a doctor for 15 minutes, only for them to say I don't really know what the answer is. You go back to your family doctor and they're like, okay, well, we tried the stomach doctor, we're going to try the nerve doctor, whatever the endocrine specialist.

Speaker 1: 38:04

Really, I just felt lost throughout that entire period until I got into Toronto Rehab and they just had this approach. First off, they made a big change to my medication right away, which had a really really significant impact. I started medication I was on had helped me sleep, but it caused all sorts of other side effects that I didn't realize it was causing. I thought it was just my illness that was causing those. It becomes really complicated, so they helped me find that change. It really was the first time I had met a doctor who was like hey, I can help you and we're going to find a way to get this better. I know this is really hard. They had the best bedside manner that you can possibly have and it's so underrated.

Speaker 2: 38:52

I just want to stop right now, because I cannot even believe. I cannot, no, I cannot even imagine the profound relief that you must have experienced the moment someone said I can help you, I know what this is, and I can help you After all of that that you had to endure from the onset to the navigating the medical system like. Do you remember how that felt to hear that?

Speaker 1: 39:15

So there was part of my brain which was like, well, I've got like the odd person who was like, oh, I can help, you Just pay me $500 and I will, like you know, find you a cure. And you know, you end up. I went through all sorts of rabbit holes, you know, with trying to find ways of healing before, and some of them went nowhere. But they also had a confidence in themselves. It was an integrated team where, you know, they had a chiropractor what's the name? Physiatrist, like a nerve doctor, neuralal sorry, my brain fog is kicking in right now, so finding these words is a little bit harder Neurologist, then, like psychiatrist as well, and basically they were like all working together, an occupational therapist, so they were able to really help me in all facets of my life and working together as a team, to be like, how do we problem solve here?

Speaker 1: 40:08

How do we get you to like set achievable goals and basically set a road path for getting you to a better place? And yeah and so, yeah, there was a really profound relief with all of that.

Speaker 2: 40:23

What ended up really helping you, what has been some key things that have worked to shifting you into the place that you are in now.

Speaker 1: 40:33

So lots of mindfulness, lots of active decision making yeah, what other things? Basically, yeah, when I'm trying to set goals, setting them out in tiny increments, writing about it a lot. So I'll just give you one example. One thing was okay. So years ago this would have been in like 2019. I was going through a setback.

Speaker 1: 41:03

There's oftentimes, when you've got chronic pain, where you will try and like exercise and then your pain will get worse and then your fatigue will get worse and then you try an exercise to get out of it. But for me, I was like stuck in this path where every time I exercised, I crashed afterwards and I felt like shit and I felt like demotivated. I was like nothing is working right now. And my occupational therapist really they helped put me in charge of my own treatment plan and he was like okay, well, tell me, what are you doing when you're going and exercising every day? I was like, oh, I'm like going, I'm walking in a pool, I go back and forth, I like go side to side, I'm using my hands and everything. And he was like okay, what is your mindset when you're doing that? And I was like okay, well, often I'll be like, you know, just counting reps and then I'll like look at the clock, see how much time is left in my workout, and you know, then I'll like keep doing it. Look up at the clock and he was like okay, that sounds like you're not super present during this period. It sounds like you're looking for it to be done. And he was like what how can you adjust this activity so that you are not waiting for the activity to be done and you're not constantly watching the clock around that time? I was always exercising for like 20 minutes, 25 minutes, and I'd feel a massive crash afterwards.

Speaker 1: 42:26

The next time I went in the pool, I went with my nephew, who is two years old at the time, and it was like it's the cutest thing, like seeing a two year old. He's in a life jacket, he's just having the time of his life. It's like they're splashing and they're just laughing constantly. And I spent the entire time. I was like chasing him around, making noises, pretending I was like a sea monster going after him and he would have to like swim away to get free.

Speaker 1: 42:56

And at the end of the time I looked up and it had been 50 minutes and I had been working hard and I didn't feel fully depleted of energy and that in itself, kind of the lesson I took away from that and what I talked with them afterwards is like when you've got connection while you're, and you're feeling purpose, like connected to others, when you're doing this sort of thing keeps you grounded in the moment, that in itself will energize you and that in itself can make such a massive difference. So you're not just like living to rehab so that you can get better, like you're actually living. You can still have a meaningful life.

Speaker 2: 43:35

Yeah, wow, that is so profound that story, honestly. It's just a beautiful depiction of how our connection to joy and purpose can be this beautiful fuel and fire that lights us up in this world, that keeps us moving. In your case, it kept you healthy in that way. It helped you be grounded in that moment. Jason, what does your life look like today? How are you feeling and what are you achieving today?

Speaker 1: 44:10

Yeah, so, yeah, I'll start with what I'm doing. So nowadays I'm working in engineering. About a year ago, I decided to make the transition from working in journalism and podcasting. I went back to work in engineering at the same firm that I worked at after I graduated university. So just a nine-year sabbatical from engineering. Yeah, it's been so wonderful, like there's so many of the same faces that are still at the company from nine years ago. It's been a lot of fun and, again, it's all related to sustainability, which is something I'm really passionate about as well. So, yeah, professionally, that's what I'm doing nowadays.

Speaker 1: 44:50

Physically, I'm doing a lot better. I still have some symptoms that come up on a daily basis. I still have all of them, like pain, fatigue, dizziness, brain fog, but over time it's first off. My symptoms have gotten way better and I've developed a lot better strategies on how to manage the symptoms when they do pop up and when they are really, really bad. So that's been really helpful. And I've still yeah, I've just been able to add a lot of hobbies.

Speaker 1: 45:20

I'm doing lots of stuff outdoors. I did a triathlon this past summer, which was really great. I never thought I was going to ever get back into that, so that was really, really wonderful. I'm doing lots of cottage trips, hiking trips, all sorts of stuff like that, getting out traveling again. And then recently I've gotten back into some volunteer opportunities.

Speaker 1: 45:45

So one of them is Trailblazers Cycling Club. So it's a tandem cycling club that pairs a sighted cyclist with a blind or visually impaired cyclist, so the sighted cyclist will be at the very front of the bike and then you'll have a blind or visually impaired cyclist at the very back. It's been really, really cool and it's really been an amazing opportunity. Like I just recently joined that, so I've really only just been on one ride, but it was so interesting and it was such an exercise in mindfulness because there's so much communication between the person at the front of the bike and the person at the back. So, yeah, that's one of the volunteer opportunities. And then, as well, I recently joined the board of directors for the Center for Independent Living in Toronto. They are a community-based resource organization run by people with disabilities for people with disabilities, so they develop and implement services, programs and activities that empower individuals with disabilities to basically take control of their own lives. So there's a few different programs that I can just speak to very, very very quickly.

Speaker 1: 47:08

But one of them being the direct funding program. So a lot of people with disabilities like to basically to go about their day. They require attendant care. So it can be people who help them with going from their bed to their wheelchair. You know, making food, showering, bathing, like all sorts of different activities, but often it's the way that people often receive attendant care. It's basically an agency will be like here are the hours that you're getting care for.

Speaker 1: 47:44

These are the things that they can help you with. With the direct funding program, it really is like, okay, you're the person with a disability, you are able to hire whichever attendants you would like, you can make your own schedule, you can help determine basically what types of activities of daily living are they helping you with, and it really just gives you agency and it really empowers people with disabilities to kind of take control of their own lives. So that's one of the main programs that SILT runs. And then also there was one that I was involved with previously, which was Dnext Accessible Media Lab, and they are a media lab that would help train and support emerging storytellers with disabilities to produce stories on disability. So it was a really, really amazing experience to kind of be a part of that, see storytellers go through the program, gain confidence, really produce incredible stories as a result as well.

Speaker 2: 48:47

So, yeah, Wow, jason, I'm hearing such a fullness to your life as it currently is. Not only are you in the career that you had been dreaming of before all of this happened and literally had been working at when this happened which is wild but how you have healed and then taken your healing to give back to that community of people with disabilities whether it be fibromyalgia disabilities or people who are visually impaired and now you're helping them bike ride. Like you have such a love for this community and a level of empathy that probably a lot of us can't give because we don't know. We don't know what it's like to be in that place, like you do, and I'm so grateful to the work that you're doing and I'm inspired by the work that you're doing and I am just really grateful that you came here to take the time to share your story with me and the pivot point listeners, on what your experience has been in this world, in this life, during this chapter. What do you hope our listeners take away from this conversation today?

Speaker 1: 49:56

I think that, yeah, a few things. So one is I mean, fibromyalgia has been something that has created a lot of hardship for me and my whole family, but it's also been something that's brought me purpose. All those things that I've talked about journalism, podcasting, volunteering with the disability community these are things that I never would have done had I not gotten fibromyalgia. So in some ways, the worst things in our lives, I think, can also lead us to things that bring us a lot of purpose. It can involve taking steps but basically connecting with others who are in similar situations, how that in itself can be a huge way to kind of get support and to find purpose, to find meaning, to put meaning into your experiences. So that's kind of a big one. Just keep looking for ways to connect with others and you never know what opportunities will come out from it. And, yeah, I guess one more thing is believe people if they've got pain, and you kind of almost believe them when they tell you.

Speaker 2: 51:14

Yeah, be in their belief score. As someone who actually believes, be that one Be the one, be the one. Wow, jason, thank you so much for coming here, joining and sharing your story today.

Speaker 1: 51:25

Yeah, thank you for bringing me on the show as well, jess. Really appreciate it, and next time you're in Toronto, let's grab a beer together.

Speaker 2: 51:38

If you enjoyed today's episode, please consider liking, subscribing and letting us know your thoughts in the comments below. It truly means the world to me to hear from you. New episodes will be available every Saturday, both on YouTube and wherever you get your podcasts, and if you would like to learn more about my work as a coach today's guest or have a story that you would like to share on the pivot point, check out the episode description for more information. Now time for the legal stuff. This podcast is presented to you solely for educational and entertainment purposes. I may be a professionally certified coach myself, but hosting a podcast is not coaching. This podcast should not be used in substitution of working with a licensed therapist, doctor, coach or other qualified professionals. Copy that Amazing. See you on the next episode. Nothing but love, jess, let's see. Now I have a question for you. Now I have a question for you. Have you ever experienced debilitating pain and had no one believe you? Have you ever heard of the invisible illness? My guest today is Jason Herteros. Jason Herteros, he's a great coach. He's a great coach. He's a great coach. He's a great coach. He's a great coach. He's a great coach. He's a good coach.

Speaker 2: 53:30

Visible illness my guest today is Jason Herderick, whose life was changed forever after developing fibromyalgia and postural orthostatic tachycardia syndrome, also known as POTS, following a sports injury during his final year at university. Over the span of five years, he went from being a university student athlete with an active social life to a mostly bedridden chronic illness patient. Today's episode is all about Jason's journey, navigating this life-altering diagnosis. And oh, all, right, let's start this again and he'va ready you. Now. I have a question for you. Have you ever experienced debilitating pain and had no one believe you? Have you ever heard of the invisible illness? My guest today is Jason Herteric, whose life was changed forever after developing fibromyalgia and postural orthostatic tachycardia syndrome, also known as POTS, following a sports injury during his final year at university. Over the span of five years, he went from being a university student athlete with an active social life to a mostly bedridden chronic illness patient. Today's episode is all about Jason's journey navigating this life-altering diagnosis at such a young age. What it's like living with chronic illness. What it's like living with chronic illness. What it's like living with a chronic, invisible illness, the lessons he has learned and the power of joy and community support.

Speaker 2: 55:51

Today, following a partial recovery, jason has launched his own podcast, discomfort Zone, and co-hosted another show, invisible Not Broken, with the aim of helping to promote awareness. And Today, following a partial recovery, jason has launched his own podcast, discomfort Zone, and co-hosted another show, invisible Not Broken, with the aim of helping to promote awareness and understanding of what it means to be chronically ill and disabled. Today, following a partial recovery, jason has launched his own podcast, discomfort Zone, and co-hosted another show, invisible Not Broken, with the aim of helping to promote awareness and understanding of what it means to be chronically ill and disabled and to help create community. He has served as an advisor for the Center of Independent Living in Toronto and D-NEX Accessible Media Lab, a lab dedicated to training and supporting storytellers with disabilities to produce authentic stories on disability. He is the former 2021 TD Fellow on Disability and Inclusion and the Walrus. He is the former 2021 TD Fellow on Disability and Inclusion at the Walrus and has also reported on disability for CBC and the local.

Speaker 2: 57:30

Jason graduated from Queen's University with a Bachelor's of Applied Science in Engineering Physics. He currently works as an energy consultant for Brightly Software Sustainability and Energy Analytics and serves on the board of directors for CILT. In his spare time, he enjoys playing with his six nieces and nephews, training for triathlons, exploring new hiking trails and playing guitar. Jason has a wildly powerful, inspirational and educational story to share with you today. So, without further ado, let's dive in. That was painful, but let's try it.