Ep: 014 - Successful WITH My Diagnoses - Katherine McCord
Katherine McCord - Bio
From being the little girl who played HR (even firing her own mother!) to the travelling People Operations entrepreneur and international speaker that she is now, Katherine has had quite a journey!
She has multiple physical and neuro diversities, ranging from MCAS and seizures to Bipolar and OCD, and says, “I am successful WITH my diagnoses, not in spite of them”. And boy is she!
Katherine is the Founder and President of the People Operations Consulting firm Titan Management, the Chief of Staff for Previewed, an innovative job board that fires the resume, an international speaker, and the Founder of The Neuroverse, a not-for-profit organization dedicated to neurodiversity.
She loves to stay busy and further her three missions: integrity, inclusion, and innovation.
Contact Link:
Summary:
In this conversation, Katherine McCord discusses the power of vulnerability and the impact of sharing your story. She emphasizes the importance of creating a safe space for vulnerability in the workplace and the need for accommodations to be standard options. Katherine also highlights the challenges of dealing with nosy questions and unsolicited advice. She shares her personal experiences with invisible conditions and the frustration of body changes. Finally, she discusses the unique perspective of individuals with chronic conditions in navigating the medical system. In this conversation, Katherine shares her experiences living with multiple chronic conditions, including Mast Cell Activation Syndrome (MCAS) and anaphylaxis. She emphasizes the importance of finding the right doctor and building a strong relationship with them. Katherine also discusses the challenges of living with MCAS and the unpredictable nature of triggers. The conversation concludes with a discussion on ending the stigma surrounding invisible conditions and embracing vulnerability and curiosity.
In this episode, Katherine talks about her life living with:
Obsessive Compulsive Disorder (OCD)
Bipolar Disorder
Misophonia: A condition where certain sounds can trigger emotional or physiological responses.
A Neurological Condition: a condition where her neurons don't function well, leading to drum solo heartbeats and seizure activities that are like mini-strokes or Transient Ischemic Attacks (TIAs).
Mast Cell Activation Syndrome (MCAS): an anaphylactic response to various triggers.
Bladder Disorder: limiting the size of the bladder
COPD (Chronic Obstructive Pulmonary Disease): developed COPD after having COVID-19 twice.
Takeaways
Vulnerability can lead to personal growth, improved relationships, and psychological safety.
Creating a safe space for vulnerability in the workplace can lead to better communication, understanding, and support.
Respect boundaries and avoid asking nosy questions or giving unsolicited advice about someone's invisible condition.
Living with invisible conditions can be challenging and may involve body changes and navigating the medical system.
Accommodations for individuals with invisible conditions should be standard options to promote inclusivity and accessibility. Finding the right doctor is crucial for managing chronic conditions effectively.
Living with MCAS can be challenging due to the unpredictable nature of triggers.
Ending the stigma surrounding invisible conditions requires universal design, flexibility, and responding with curiosity instead of ego.
Embracing vulnerability and sharing our stories can help break down barriers and create understanding.
Chapters:
00:00 Introduction and Gratitude
03:03 Being Open and Vulnerable
08:03 The Power of Vulnerability
11:17 The Impact of Sharing Your Story
15:11 Creating a Safe Space for Vulnerability
20:21 The Importance of Vulnerability in the Workplace
25:31 Dealing with Nosy Questions and Unsolicited Advice
28:20 The Challenges of Invisible Conditions
32:17 The Frustration of Body Changes
37:26 Navigating the Medical System
41:51 The Importance of Finding the Right Doctor
45:02 Living with MCAS and Anaphylaxis
48:21 The Challenges of MCAS and Triggers
51:31 Ending the Stigma of Invisible Conditions
53:25 Embracing Vulnerability and Curiosity
54:23 Closing Remarks and Call to Action
Transcript
Tim Reitsma
Katherine, we should have hit record about five minutes ago because my belly already hurts from laughing. So thank you for joining the Invisible Condition podcast.
Katherine
Yeah.
Katherine
I'm so excited to be here with you, Tim. This is one of the talks I've really been looking forward to.
Tim Reitsma
Yeah, you know, you have introduced me to a few people, one being Miles and his episode, by the time we're recording this, it's already dropped and he is such a huge supporter, huge fan. We've connected multiple times and I just wanna say thank you. I mean, you've connected me with a number of people and so thank you for that. Here I'm gushing over you and your network and.
Katherine
Thanks for watching!
Katherine
You're welcome. It's my pleasure. I tell people like, if you know the cool people, why not share the cool people? You know what I mean? Like why, why would you keep them all to yourselves? You know, I kind of, they're my secret collection. I collect super awesome human beings and I just love to share them with the world. That's kind of one of my, my favorite joys. And by the way, I do want to tell your audience that they may get to see one of my invisible disabilities become not so invisible here in a moment. I am feeling a little bit of seizure activity. I'm going to be okay.
Tim Reitsma
Yeah.
Katherine
There's no need to stop, but you might get to see some ticks in activity. So if anybody sees that, I'm not winking at him trying to get a date for him. We're both happily married humans, but you might see a few ticks. A few of what my friend Stacey calls my dance moves. Do not worry. I am OK.
Tim Reitsma
Well, thanks for that. If you start doing some dance moves, I'll tee up some music and we're gonna have a good time. Okay. Okay, I love it. And when we're recording this, you're in Florida and you had said that there's a storm. So we might hear some thunder, we might hear some noise in the background and we're just gonna go with it.
Katherine
I like it. Thriller, thriller, please. It tends to kind of go with the beat. Yeah.
Katherine
Yeah. Yeah!
Yep. Part of it. Human experience. What are you going to do?
Tim Reitsma
Yeah, and if you're tuning in, Katherine's in Florida, we may hear some thunder. There's a storm going on in Florida right now. And so we're just gonna roll with it, kind of like our invisible conditions, right? We just kind of roll with it, right? You shared that you might, you feel some seizure activity, we're going to maybe experience some technical issues, we're gonna experience some storms, and it just is what it is.
Katherine
Yeah, just is what it is.
Katherine
Just part of life. It's okay.
Tim Reitsma
It's just, yeah, I love it. Why don't you take a moment and introduce yourself to our audience and a little bit about yourself, what you're up to and the invisible conditions you live with.
Katherine
Oh my goodness. So I am Katherine McCord. I am a people operations consultant and now an HR tech consultants, because why not? I also founded a nonprofit surrounding neurodiversity, which for anybody who listening who doesn't know, neurodiversity is just a medically visible and or diagnosable difference in how the neuro system works. So think everything from cerebral palsy, all the way over to autism, dyslexia, and ADHD, all the way over to OCD and bipolar. So it's kind of a huge spectrum that kind of covers both mental and physical conditions. So I do that as well, and I'm also an international speaker and teacher. And I focus very much on accessibility, neurodiversity, and innovating HR. So there you go. That's the basics. Oh, and my conditions. Oh my god, so many. So I have...
Tim Reitsma
Mm-hmm.
Katherine
I have six current invisible diagnoses that are disabilities. So I have, and I had more, but I got rid of the problems. So I have currently on the neurodiversity spectrum, I have obsessive compulsive disorder. I have bipolar one and I have mesophonia. Mesophonia is basically that there are certain cells that actually make my neuro system malfunction.
So it's the whole thing. It's not just I don't like the sound. I actually will have neuro responses to them. And then on the medical side, I have one kind of all encompassing condition that doesn't have a name, but basically my neurons don't function well. So sometimes my heart puts on a little drum solo and I get seizure activities, which are actually TIAs or mini strokes that have morphed into seizures. So that's super fun.
So whatever that is, I have that. I have a condition called MCAS, mass cell activation syndrome, which is very, basically my body creates an anaphylactic response to unnecessary things. I'm not actually allergic to it, it just kind of releases too many mass cells and then I have a reaction and it's unpleasant. And then I also have a bladder disorder that's super fun. So basically my bladder just doesn't grow.
So that's the basic rundown of my very 80 year old body.
Tim Reitsma
Well, I appreciate you trusting me. And while our audience, our listeners with that, even from our first interaction, you are an open book. And even before we hit record, you said, just ask me anything. What has made you decide that, hey, I'm just gonna be open about this?
Katherine
Literally, yeah.
Katherine
I realized how much it helped other people. There was a situation where I was in Portugal to pitch a product that I designed and I was going to get up on stage and give a speech about it in front of this huge conference that had like 40,000 people at it. And not the whole conference obviously, but you know, a portion of it. And that morning I had two seizures and my speech left my brain.
And we were timed and we were not supposed to use notes. I was like, dang it, oh my God, what's gonna happen, right? So I contacted everybody at the event. They were beautifully accommodating. Yay, Web Summit people. Beautifully accommodating to me. We got up there and when I got up there to give my speech, I obviously had my phone, so I addressed it and I told everybody.
I walked out on stage, I said, you're going to notice that I have my phone and that I'm reading my speech today. That's because I had two seizures this morning, but it's okay because I'm here to talk to you about diversity and inclusion. And then I dove right into it. And then what was interesting was people came up and responded to that and they connected with me and they shared some stories of their own and they shared some of their fears and we got to talk about things and hash some things out. And it was really interesting. And then I started doing this more and more and more with my speaking and teaching, and the more vulnerable I got, the more impactful my messages became and the more comfortable people were because what it does is it creates psychological safety. And so if I want to help others, I have to be vulnerable too. And I have to show them that it's a safe place to be vulnerable. I also have to respond in curiosity and not ego. And so the vulnerability and the curiosity responses have just been paramount.
Tim Reitsma
Mm-hmm.
Tim Reitsma
I'm really curious about that because there's been a theme over the last couple of weeks where people have reached out and to learn more about Invisible Condition, which I'm so grateful for. I don't know how people are landing on the podcast or website, whether it's through LinkedIn or social, but I'm super grateful for it. And there's a bit of a theme emerging where, when I ask, hey, do you wanna tell your story? I could just see a physical change in people. And it's, wow, I don't...
Katherine
Yeah.
Tim Reitsma
know if I can be that vulnerable. I had somebody reach out to me and said, Tim, I wish I could be as vulnerable as you. And then that got in my head of like, oh, no, am I being too vulnerable? And so, yeah, is there something like, uh-oh, should I tone it down and not share what makes me me? And then I decided, no, of course, I'm not going to do that. But as people use.
Katherine
Yeah.
Katherine
I think weird. Ha ha ha.
Tim Reitsma
think about their invisible condition and think about, hey, I feel like I want to share. I feel like there's power in my story, just like your story. What would you say to someone who is kind of on that fence, dancing that line?
Katherine
You know, first of all, it's going to change your life, not just one instance or anything like that. It's going to literally change your life. And when you start communicating in a more honest way, because that's really what vulnerability is, it's uncensored honesty. And so when you start being that honest, and when you start responding in curiosity, not ego, and when you start being vulnerable, it's going to expand your life in a way that you never thought possible and it improves your confidence. It ultimately improves your health because you start getting the things that you actually need instead of masking, instead of just dealing with it, you start actually getting what you need and what you realize is it's really not that difficult to get the things that you need when you are just honest and just put it out there in a confident way and just say, well, this is what I need. No big deal, here we go. You know, it just kind of put it out there. There is a lot of justifiable fear because there is so much discrimination but the more that you practice the more that you speak honestly and assertively about everything the easier everything becomes in your world and you make the world better for everybody else.
Tim Reitsma
I love that. That's gonna be one of my new favorites sayings is uncensored honesty. Cause I actually went down the rabbit hole recently of what does Google say about the definition of vulnerability? And it was basically a reaction to try and protect yourself. Or there's like the opposite, which is, hey, if I'm being vulnerable, I'm afraid of being attacked, whether it's physically or mentally or whatnot. But I love that.
Katherine
Right.
Tim Reitsma
uncensored honesty. And it's so hard. It's so hard. And, and here you are publicly saying even on your website, your personal website, which we'll link into the show notes that you say, Hey, this is who I am. And you're launching, launching this event in the neurodiversity space, and you're embracing it, which is not common. It's just not. And so, again, you've you're devoting your life to this. And when did you
Katherine
Okay.
Katherine
Yeah. Well, I had a weird childhood. I've cut it in a sad way because my childhood, I realized when I got older was unique. You and your kid, you think everybody has the same experience you do. You know, you don't realize.
Tim Reitsma
Mm-hmm.
Katherine
As I've gotten older, I've come to realize that most people do not have the experience that I do, that I did. And so we need to change that because my parents realized when I was very young that I was very different. And I remember my mom telling me, she walked in, I was about three years old and I was playing with some toys and she walked in and thought, well, that's different a unique thing that she's doing over there. And she figured out very quickly that I had the OCD and they didn't know the term for it but the misophonia as well. And my parents just steered into it. They just were like, okay, this is who you are, no big deal. And they taught me to use it in a way that benefited me. They taught me how to accommodate myself in a very smooth and natural way, how to, you know, ask for the things I needed and and all this and I was always given a lot of autonomy. I was always my own person, even from the time I was a little itty bitty, tiny toddler. And then I got older, I started having all the medical stuff, right? And they started working with me through all of that. And again, how to work with it, not against it, how to work with it. This is what your body's doing. Okay, how do we accomplish your goals with this? I had the bipolar kick in. That was the hardest one.
It was, I knew it had to have been, in fact I know because I've asked them, very scary for them because bipolar ran on both sides of my family. There had been some scary situations surrounding it and they still just steered into it like, okay, this is who you are. Let's do it. Let's figure this out. And they even supported me and not wanting to medicate at that time because the drugs that were available were awful and my body was already so unique, so I was like, all right, let's keep this as easy as possible. But we still needed to treat it, right? And we still needed to work with it. So we got a wonderful psychologist on board. We all kind of started this self-mapping thing and really working together. And it was extraordinary. It was an extraordinary way to be brought up and to learn that this is just who I am and I'm not broken, I'm not defective. I have these things that are a little frustrating. Now some of my just straight up health conditions are not the most fun thing. But the neurodiversity side of me has such wonderful benefits and now science has caught up to that, right? You know, Johns Hopkins National Institute of Health, Harvard, the list goes on and on, have all released studies about the benefits of neurodiversity and the evolutionary advantages. And so I think it's so important to teach the world that
You know, we're designed to balance out. We're designed to do that. So however you are as a human, that is how you're supposed to be. So let's just steer into it. And yes, the physical stuff can suck. Trust me, nobody likes seizures. Nobody likes having anaphylaxis for no apparent reason. You know, just step outside and, ooh, some anaphylaxis for you. You know, nobody likes that. But...
Tim Reitsma
Hmm
Katherine
But there's so many other benefits and learning to work with your body and to work with your mind and your emotions and all of this is just such a better way to be. So for me, choosing to do this is about making sure that more little children have the kind of love and acceptance and guidance that I had, making sure that more adults feel that as well, whether it's at work, whether it's in their relationships, whatever and just really pivoting how society views diversity and starting to embrace the benefits of neurodiversity.
Tim Reitsma
embrace the benefits. I've been telling people recently, when people have asked me a little bit about invisible condition, and, and I just ask people to dream with me for a moment, where if we have kids, or we maybe plan on having kids, or we know somebody who have kids, and they live with something that is not apparent, that's invisible. Imagine a world where they grow up and they don't feel any shame and fear about sharing with their friends, their family their colleagues and in turn, their friends and family and colleagues and workplaces just say, thanks for trusting me with this, tell me more. I wanna get curious and workplaces especially say, okay, great, thanks for telling me, what do you need to do your best work? And I said to a few people, I'm like, yeah, if my son enters the workforce or my daughter enters the workforce and they need counseling, I want them to be able to go to their boss and say, hey, can I get...
Katherine
Yeah.
Tim Reitsma
I have an hour long counseling appointment every other Thursday at four o'clock. Don't worry, it's at the end of the day, it won't disrupt. And I want their leader, their boss to then say, thanks for telling me, mine's actually on Wednesday, who do you go see? And just be able to have that honest conversation and not feel that shame and not experience that fear. That is, and you're setting a great example. So thank you for that.
Katherine
Right.
Katherine
Yes.
Katherine
here. I thank you. I it's everything to me. And I think having that kind of strength and I and part of this. So one of the things I'm really big in, you know, is making accommodations into standard options. So just get rid of this whole accommodation process. It's idiotic. This is what people need to work in a more effective and healthy manner. 54% of accommodations are free according to the Department of Labor. So why are they not just what we do, you know, just
Hey, what do you need? Just as people are being onboarded, hey, what do you need? Cool, let us know, you know? And just have an accessible form so that if they get in the job and realize something later, they make an adjustment, no problem, on we go. And not just with tech and seating types and all this, but even in terms of interactions with your fellow coworkers. If you don't wanna be touched, what's the problem with that? You know, or if you don't wanna, if you need camera off occasionally for your meetings or you, whatever, great.
You know, that's just how we function. And part of this too comes from a failure I had as a leader where I missed, I didn't entirely miss it. I knew something was off, but I missed something, a sense of a point of pain for an employee of mine. And I missed the opportunity, and I had what I thought were my reasons at the time to not deal with it, I was incorrect. And it ended up resulting in us losing that employee. And it was so painful for me because I could have stopped it by being a better leader and by being more curious and by being more open and by being more vulnerable. And I didn't do it. And that's always stuck with me, that failure that I had and when I found out the awful trauma that this person had suffered and how we were completely accidentally triggering it, but still triggering it, and how we could have easily avoided the whole thing, that was a real pain point. So making sure that we don't repeat that kind of action, because like you said, what's wrong with the world where we can just say what we need and it's okay? Or we can just say what's wrong with us? Everybody that knows me knows what's wrong with us.
Tim Reitsma
Yeah.
Katherine
Like, if you were in my life, you know what's up. And the reason is, A, my safety, because it is safer for me if everyone knows what's going on with me. And there's that thunder in case you didn't hear it. And then also because it makes for a more effective working relationship, because then I can just say to somebody, hey, I'm gonna have a seizure. I'm gonna be a little bit late to that meeting and I'm only gonna be camera off, but I will be there. Just give me a moment.
And then they understand too that for the rest of the day, what that means for my interactions and things like that. So it's just more effective, just makes more sense.
Tim Reitsma
It does. And as a leader, I know we kind of took a turn into the workplace and, you know, if you're listening to this and you're a leader or, you know, you work in a workplace with a leader, you gotta start being vulnerable. There's so much data, so many books, so much insight on this and they talk about the power of vulnerability. And I don't necessarily like that term in the sense of, well, if I lead with vulnerability, I can get people to do more things.
Katherine
Yeah.
Tim Reitsma
I can elevate my team. And when I think about that from a performance perspective, it kind of just gives me a little, you know, it doesn't make me feel real good. But I think from the power of vulnerability, from the sense of, hey, this is what I'm living with. I'm human, we're all human. We are perfectly imperfect. We all have things going on, whether it's physical, mental or spiritual, whatever you're battling, there's things going on. And sure, you don't need to...
Katherine
I'm sorry.
Tim Reitsma
go into the details, we don't need to go there. But think about if we're able to even just give a glimpse of what's happening. Why are you, you know, for me it was, hey boss, thanks for hiring me on this contract. I'm gonna be running the washroom a lot because my bowels work very fast because I live with Crohn's disease. I have to disclose that, I'm gonna start a new contract soon. And it's like, that's already come up. It's like, hey, this is just, where's the washroom? I need to know, I don't.
I don't care about anything else, but this is what I need.
Katherine
Yeah, I get that. I feel that, because I have to be constantly by a bathroom. So I completely feel you on that. Ha ha ha.
Tim Reitsma
Yeah. And see if you didn't, if we were working together and we, we were hiding this from each other and we're working on a project and each one of us kept disappearing frequently at different times. Where does our brain go? Our brain goes, they're not pulling their weight. They're not doing their work instead of it should be, Hey, what's going on? Let's get curious.
Katherine
Yeah, exactly. And I love the curiosity aspect. So that actually ties into me what real vulnerability is, which is it's not just sharing, right, which is important. And it's vital to the whole process, right. And it's part of self care. But it's also the most vulnerable thing that you can do is opening up and listening to other people. And the reason that I say that is when you are responding to curiosity and you actually focus with the intent to learn from another human. The most amazing thing happens and in your brain your neuropathways actually change. There's physical change in your brain that happens from what you've just learned from this other human. And what could ever be more intimate and more incredible than having, like allowing somebody else to come in and change your own neuropath?
I can't think of anything more intimate and vulnerable than that, right? And just leaving yourself open to that. But it's incredible. And you start to really learn and grow and you start to think completely differently and you start to interact completely differently and to express your needs completely differently. So yeah, that vulnerability on both sides, accepting it from other people, listening to other people, learning from them, understanding them that's vital and then also communicating your own needs and also just like you said to the practical element. I mean I've got to pee constantly. Why you know why hide that from people? Like I'll let people go do you want to go to a movie? I'm like okay look I like going to a movie but you need to understand something that's going to happen. I am going to factually get up a minimum of two times and that's if I've dehydrated myself before we go.
Tim Reitsma
So for those who are listening, if we put in some interlude music, we know, you know, it's like, we'll just leave it there. We're not going to edit it out. It's like, Katherine's just got to go and we're going to embrace it and listen to the thunder in the background.
Katherine
Yeah, it's just gonna happen. I'm having a good day though today. So I think we might actually make it all the way through the recording. But it is, it's funny. And then the other thing too is sometimes you have to, with your invisible disability, you know, there's also the trauma aspects that can happen. So one of the disabilities, I alluded to it at the beginning that I got rid of some of the problems. Part of this, I had a hysterectomy a few years ago.
And so that was a whole other process in and of itself. Before that, I had six miscarriages. And having to explain that to people at work and having to explain that to other people, because people always wanna know why don't you have kids? Why are you going through this? It's just.
People are so nosy, so first of all, don't be nosy with people, please. Curious, yes, nosy, no, there is a difference. Know your boundaries. It's an accept when people put up a boundary, too. That's another thing. But the trauma, people don't think sometimes about the trauma that can come with disability. And there are other, that's just one example. But it's.
It's a lot. So somebody may not want to talk about all the details. They may just need to tell you, I have a disability associated with this and sometimes I'm going to have certain needs. The end. And then we just let that sit and we accept what they've told us because sometimes they don't want to have to explain all the rest of that nonsense to you. You know.
Tim Reitsma
Yes, it's just knowing when to just close your mouth. Just keep your brain going, but shut your mouth a little bit. And we may want to get, and then we ask ourselves, and I blogged about this a few times, which is, are we authentically curious? Like is it curiosity coming from a place of, I really wanna know more. Because by knowing more, as you said, it's a layer of vulnerability.
Katherine
Yeah.
Tim Reitsma
Do we really wanna know more to educate ourselves in order to support maybe the person we're talking to or using that newfound knowledge to support others? Or is it self-serving curiosity? Ooh, I'm nosy now. I want to use this and maybe serve myself. I want to use this against someone. I just wanna know for the sake of knowing and I don't care what else, but I just wanna push as far as I can.
Katherine
Yes. That's the thing.
Katherine
And that's where I have the problem with it. I never mind actual curiosity, ever. But it's the nosiness, you know, and the, well, why didn't, because this is an actual conversation that I have had so many times I can't even count. Well, why don't you have kids? My body didn't wanna cooperate. What does that mean? I explain it. Well, did you ever really try? Yes, we had several miscarriages. Did you ever try IVF?
Oh my God, back off. Like, what the heck? This is gonna, and what they're trying to get to is, because then this is how it always ends, inevitably. Well, you really should try again, because everyone needs children. You need children. You won't be fulfilled in your life without children. That's where it always ends, every single time. And my response to that is, actually, no, I'm extremely happy.
Thank you very much. I have multiple people in my family that don't have kids. They're all very happy. I am very fulfilled in my life. I'm happy that you're fulfilled with children. I am happy and fulfilled without them. Thank you. And then we just kind of go on. But it's that kind of like jabby, you know? And I know other people that get the same kind of thing with other invisible disabilities as well. The other one is the questioning of it. Do you really have a thing? Like, are you really sick? You don't look sick. You know, that's always what I think favorite things. I'm like, thanks. I guess that means I look okay. But it's so real. I don't know why you're saying that. I never know how to take that. Like, are they just trying to be nice? Or are they trying to like insinuate that it's not real?
Tim Reitsma
Yeah.
Tim Reitsma
Yeah, I've heard that so many times. Like, well, you don't look sick. Are you, my favorite was, are you sure you need surgery? And this was a week before I needed surgery. It's like, well, yeah, actually, I've actually gone a whole week without massive internal blood loss. So I'm good, I'm good for surgery. And are you sure? Hey, maybe you should just try this diet. Somebody recommended once, you know, my intestine was almost closed off and you get all these Facebook and Instagram, social media messages. Hey, you should try this all vegetable diet.
Katherine
Oh, yeah.
Tim Reitsma
It's like, well, that would actually kill me. Oh, you should go full meat diet, go full carnivore. I'm like, well, actually my body can't digest that. So I would die, but thank you. Thanks for trying to kill me. Yeah.
Katherine
Yeah.
Katherine
Yeah. But thank you. Thank you so much. Yeah. Thanks for your things for the death wish. Yeah, I just I've had the same thing with the MCAS. My diet is so bizarre. It's the weirdest little holes that things that I cannot have. And the things that I can't like it's so weird. So I can eat pecans and coconuts. And of all things, walnuts, but not the rest of the occasional peanuts, but I have to be careful with that, but like not cashews, not almonds, not anything like that. Fruits, like half of them are a no-go for me. It's really bizarre, and so there's just all these little things, and so people will say things to me like, oh well you need to go vegetarian. Yeah, there's like six things I would be able to eat. I don't think so. You know, you just, you just kind of have to like explain to people like just because something worked for you doesn't mean that it would work for everyone else.
You know, that's not how that works. Human bodies are all different, you know, calmed down. And I don't mind the discussion, but it's when people start to like push at it and really push. And it is funny because I've had the people to get aggressive with me about things, you know, and they really try to push their way. And so I always like my own little Katherine way of dealing with it is I'll look at them and say, okay, if you want to go down this path, I will go down it with you.
But please understand that I've done all my education and I have all of my reasons and I have all of my research. And so if you're not ready to match that with something equally as on point, you might wanna stop the conversation here. And like nine times out of 10, that shuts them down. But every once in a while we have someone that still wants to keep going with it. But it also sends the message of you're hitting a nerve. You know what I mean? It's that like.
Tim Reitsma
Mm-hmm.
Katherine
stop, stop. But yeah, it's, it is, it's interesting and, and I have friends with visible disabilities, we've talked about the differences and, and all that. It's, everybody's got their unique challenges, right? Like it's just this whole, and then when your invisible ones become visible is super annoying. I'm not a fan of that either. I would just like to share that. I finally have started having permanent facial
Tim Reitsma
Mm-hmm.
Katherine
And you can't really tell in this lighting, but I have like creases and stuff over my eye that go like the wrong way. They're like not like normal creases. They're like a bizarre like diagonal crease. And so my invisible disability is becoming less invisible. And I have very sour feelings about that. I get super like grumpy cat about it. And I think that's something too that not a lot of people talk about is how your body starts to change and not just invisible ways when your body starts to change in ways that are not what you expected and it's frustrating. And maybe you don't look how you used to look. Maybe you don't walk how you used to walk. Maybe you don't eat how you used to eat. And it's more that you feel like you're losing you. Do you ever go through that? It's not so much about the thing that's gone. It's that you don't get to be you.
Tim Reitsma
Yeah, as you were mentioning that, it's really resonated with me and I'm kind of squirming in my chair a little bit because I'm battling that right now is, and I had surgery April of 2023 and my body is not functioning how it was before my Crohn's came out of remission about two and a half years ago. Two and a half years ago, I was very active, functioning, had lots of energy. Now, I have a hard time making it through a day. If I go two days without a nap, that's good for me. We were talking off before I hit record, it's like, I can nap on command. My body just tells me, Tim, lay down, shut your eyes. And yeah, it's one of my, I don't know how to turn that into a superpower. It just, I don't know. But, and so lacking that energy, but also the frequency of running the washroom, I guess, missing.
Katherine
super jealous about that.
Katherine
Thanks for watching!
Tim Reitsma
parts of my intestine, you know, it's, I have to plan out how I leave the house, when I leave the house. You know, we went for a big hike recently with me and my kids and I was just battling anxiety. I didn't tell them, but inside I'm like, okay, I better take some meds the day before, the morning of, I better watch what I eat. And just to make sure that I don't have an accident along the way. Years ago, like three years ago,
Katherine
Thank you.
Tim Reitsma
I didn't have to worry about that. And so my body is changing, but I also have found my voice in terms of self-advocacy. And I phoned up my doctor and said, I don't like this, what can we do about it? And they're like, oh, okay, let's figure out what we need to do about it. Like, I like, you know, just take it all if that's what's gonna give me some quality of life. Like take all my intestines, if that's gonna give me a better quality of life. But you know, I can't, you know, I can't struggle with
Katherine
I'm sorry.
Tim Reitsma
every hour, every two hours, and it could be in the middle of a podcast, I don't know, like I really watch what I eat before I record a podcast, because, yeah, so it really resonates with me when it's not necessarily visible, but it has an effect on me mentally.
Katherine
Right, yeah.
Katherine
Yeah, yeah, when it changes your life how you wanted it to be. So I also, this is a good lead in, thank you COVID, got COPD because I had COVID twice. Yes, I do vaccinate. One happened before, one happened right, it's a whole thing. Anyway, but I got COVID twice and it left me with COPD. And now I have smoker lungs. I'm a nonsmoker, by the way, and I have smoker lungs and it's very annoying. And I don't like it. And it changes my ability to do things and it makes me tired. And if you ask anyone, the one thing I cannot stand, my number one pet peeve in all of life is not having the energy to do the things that I need to do or something slowing me down. Can't stand it. And so it's been really hard to have to go, okay, I have to sit and just breathe. You know, I have to stop and get some of my oxygen out and take that or whatever it is. And it's super annoying. And I don't like it. That and the bladder condition are just like the least favorite of all the things that are wrong with me. I just don't like them. I do, I do.
Tim Reitsma
Do you have a ranking chart of your conditions? It's like, favorite to, it's like, you know, if I could get rid of at least two, what would they be? Yeah.
Katherine
I mean, yeah, there's things like I love, like way at the top of like would never trade them for anything are my bipolar by OCD. I love both of them. And yes, they have some drawbacks to trust me. I think the compulsion sometimes get, you know, but I love both of them. They're part of what made me I wouldn't trade them for anything. And then like, then it kind of goes just downhill from there and down into this. And I have more health conditions even when I listed but those are the ones I actually consider to be disabilities like the actual like problems. You might hear something popping occasionally in the background, that is actually my joints. It's a fun new thing that my joints are doing. I crack and pop like I'm popcorn. But it's, it is, it's like you do kind of get to the point that's like, I don't like this thing. I'm with you, like I'll just call my doctor and go, okay, this ain't gonna cut it. We gotta figure this one out. This is the thing. This is the thing that's gotta go. So for me, the main things that we control are.
Tim Reitsma
Mm-hmm.
Katherine
Seizures to make sure that they're not constant that they're just little activity can like I've had today and then occasional, you know big ones Then it's the itchiness for the MCAS because man I can take a lot of things I cannot take just being itchy all over my body. I can't do it. It's it's horrible. Can't do it So that's the one that we control there and then with the COPD being able to breathe You can kind of all need to breathe, you know, it's kind of a thing with the human existence this whole breathing thing
Tim Reitsma
It's just something we have to do. It's something most of us have in common. I would say, I guess all of us have in common. Yeah.
Katherine
Yeah, all of us, yeah, we got to, I keep trying to photosynthesize and it's not working, like at all. I'm not doing no experiment there and it won't work. But I do like my respiratory therapy. I have my inhalers. That's the main one that I medicate for, that and the MCAS, like you just have to. They just, there's just no, I'm not a huge like medication person, but you just have to, right? Or you're just gonna be in misery. But yeah, it is funny you brought up like least favorites because yes, I definitely have least favorites.
Tim Reitsma
Yeah.
Katherine
then I just, I'm like, no, no thank you to this. If I could fire this, I would. Like this would just be gone with you.
Tim Reitsma
If it's somebody I was talking to recently, it's like, I don't live with it, it lives with me and I would evict it at any point in time. It's just a stubborn roommate. It's a stubborn person who's just something that's taken up residence and it's like, you know, if I can write that eviction notice two weeks, I just want you out of my body, you're gone.
Katherine
Yeah. And it won't. It won't leave. Yeah, just don't care for this very much. No, thank you. Goodbye. That's exactly it. Yeah. You know, the other thing too, and I'm going to get your opinion on this, I've been talking to people recently about this, is like the perspective that...
Tim Reitsma
Yeah.
Katherine
people with chronic conditions, especially the, in the fall into like the disability field. Our perspective on the medical system is so different from everybody else because it's just like, you're just perpetually having to deal with this nonsense, just like over and over and over and over. And I don't wanna get into like politics, but I'm just curious, like what your experience is in terms of your mental, does it exhaust you to think, I'm like, oh my God, I've got to go through another diagnosis, or oh my God, I've got to go through this whole other process? Is that something that's exhausting, exciting? What is your response to that?
Tim Reitsma
I would say years ago before I found my specialist, yeah, it's exhausting, it's daunting. I live in Vancouver, British Columbia, Canada. So our healthcare system is very different than in the US. And I have found through, from, I guess, my family doctor years ago found this center here in Vancouver. It's now called the IBD Center of BC. And so I have access through that gastroenterologist through my doctor, I have access to his nurse, I have access to a dietitian, I have access to counseling, and I'm utilizing it all. I just have to phone up, phone their number, their front desk and talk to the receptionist and say, hey, I need to see the dietitian. And within a day, I'm talking to the dietitian. We also have a great family doctor. And so,
Katherine
I love that.
Katherine
Okay. This is not a scene.
Tim Reitsma
I'm a little biased in this because we have a family doctor but I also know up here, and I don't know what it is like in the US but here in Canada, it's extremely hard to find a family doctor. It's so hard to find someone who can give you that continuous care. Like I've gone to walk-in clinics and it's like I had a hearing problem. No, years ago, a couple of years ago, I woke up with this pounding pressure in my ear. And...
I went to a walk-in clinic. I'm like, it wasn't there yesterday, it's here today. He's like, well, it's tinnitus, you're gonna live with it for the rest of your life. I'm like, are you kidding me? Like what? And so then I went to an urgent care center and they're like, yeah, we don't know what it is, but here's some medication. And then I went to my family doctor and he's like, it's not tinnitus, there's something else going on. And long story short, that was frustrating.
Katherine
So, I'm going to go ahead and start the presentation. So, I'm going to start with the presentation.
Tim Reitsma
I had went to hearing clinics, I saw specialists, I was supposed to go on a trip, a work trip to Mexico. And my family doctor was like, there's absolutely no way you can fly. Like if something bursts in your ear, you're not gonna make it home. Like you're gonna be in such excruciating pain. And so I've had frustrations with the system, but I've also had a good experience. And to sum up my long winded responses,
Katherine
Right.
Tim Reitsma
I've learned self-advocacy. I actually wrote an article. It's going to go live on the website. If by the time you're listening to this, it'll be up on the website is how to advocate for yourself and how to develop your voice, how to be firm and how to check in your emotion when you're talking with your doctor and walk through. And I even came up with a model on how to walk through this. So you got to check out the article on like, yeah.
Katherine
Yes.
Katherine
I will have to read that. I love that. And by the way, I finally found it. It is very tough in the US to find a good primary care physician. That's what we call them here, like a good primary care physician. And I found an amazing one, and it's through a system called Direct Primary Care. And she has access to all of these specialists, so we can just kind of get everything done very quickly, very inexpensively.
A lot of times I don't have to have multiple appointments. She could just send stuff off. It's very easy. And that to me made all the difference in the world. Like just having that one doctor and the doctor that actually knows me. And I get an hour with her every single time I go, uninterrupted, that is my time. There's not like, because a lot of times here in the States, it's like they come in and they go off to see the other patient, then they come back to you. Then they go back over here to this person and it's very chaotic and frustrating. You have to wait these long ass lines. No.
Tim Reitsma
Mm-hmm.
Katherine
I just go in, I see her, I leave, I can text her, I can email her, and it makes such a difference. So I really have a lot of appreciation for having that strong relationship with a primary care physician, and then finding the right specialist, to your point, the right specialist, things like that as well. Finding the right doctor matters, so interview them. Just because somebody has, you know, PhD, or has the MD, or whatever it is after their name, should be MD for this doesn't mean that they're actually good at what they do, or it doesn't mean that they're good for you. Maybe they're just not the right fit for you. So interview your doctors.
Tim Reitsma
Mm-hmm. My wife lives with arthritis and closing spondylitis. Okay.
Katherine
Real quick, so sorry, gotta go bathroom. We talked about this. Gotta go to the bathroom, please.
Tim Reitsma
And we're back. I love it. Yeah.
Katherine
I was like, you know what, this is the show for it. Just don't kill yourself. Just go.
Tim Reitsma
Just go, absolutely. Yeah, I was gonna say that, you know, my wife lives with enclosing spondylitis and has said, you know, she's gone through multiple specialists and she had a great specialist, but she found she wasn't getting the, it wasn't working for her. And so she heard another specialist talk at an event and then she emailed that specialist and now she's with that specialist and you know, no hard feelings, right? You don't have to worry about hurting the feelings of your previous specialist. It's, you know, you need to find that care for, that you need. And yeah. And, you know, I'm looking at, just checking the time and I can't believe almost an hour's gone already. I've learned so much and I've got so many questions about just the conditions you live with. And I'm really curious just about
Katherine
Right.
Katherine
For you. That's the way. Yeah.
Tim Reitsma
MCAS like an anaphylaxis. And, and so when I hear that, it's like, okay, so we typically hear it's like, as I understand, it's an allergic reaction to something. So do you know, like, if you eat something today, and it's fine, and then you eat the same thing tomorrow, would you have a reaction to it? Like, how do you how do you
Katherine
So this is what's so crazy about this condition is the slightest variance can cause the reaction because what's happening is my body is misunderstanding signals and it so then it will release the mast cells and that's what creates the anaphylaxis, which is like trouble breathing rashes gastrointestinal problems all kinds of things and it so it's really interesting because I'll eat now typically like an isolated food, it's going to always produce the same result to like a pecan or a glass of milk or whatever. That will kind of be the same. But if it's, let's say a cherry pie, this cherry pie might be okay. This cherry pie may make me sick. You know what I mean? So it's just, you have to be so specific. Like this pizza is fine. This pizza is not. And that actually is a thing for me, by the way. There are pizzas that set me off and there are pizzas that don't. It's completely bizarre.
And I'm sure that there's some little ingredient in there, you know, but I don't want to call each place and be like, what are you putting your pizza so that I can chart my health? You know, I think that's that seems obnoxious to them. So it's really unusual. But the other thing that's frustrating is I can go to hug somebody and they can have been walking out somewhere, picked up some allergen just somewhere on their skin or clothes. I hug them and then I have a response. And so it's just completely frustrating.
Oh, and cigarette smoke, if you smoke outside, come back in. You cannot be anywhere near me or sit on anything that I am going to sit on, because it will be horrible. So I tell people, I'm like, OK, you can have an outside smoking shirt, and then you take it off, and then you put it back on your head, and then as soon as you come to the door, you can put on your inside shirt. And then that's the process. And it's so funny. And people are so sweet. People of my life are so sweet about it. And if it's like a client or something like that or walking along and they want to smoke, I say, OK, I'm going to walk X number of feet away from you. Don't take offense. You know, I'm just going to be over here. And we just kind of go on about it. Alcohol is an interesting one. I cannot drink at all anymore. And sometimes even people's breath will kind of get me like, you know, like, it doesn't feel too good. You know, like if it's too strong, you know, my body will start kind of freaking out a little bit. So it's weird. It's a weird condition because you just kind of like.
Katherine
never know, certain textures will cause it. It's very weird.
Tim Reitsma
it's invisible until it's not. And then it shows up and wow. And I'm curious, do you carry around an EpiPen? Like is it goes to, okay.
Katherine
Yeah, and it's super nice.
Yes, and my husband is way too excited about getting to stab me with it. Like he is just waiting for the day. In fact, it was really hilarious because we let my mom know that we got it, that we actually got it in. And she goes, no, I want to be the first one to stab her. I had to raise her. I want to stab her. I'm like, why is everyone wanting to stab me? Wait, hold on. Pause. None of you get to do it. None of you are allowed.
Tim Reitsma
Hahaha
Katherine
But yes, I do carry an Epiphen. I have to carry special inhalers also for that, not just the COPD. And I take this weird liquid called chromalin, and it comes in these little things, and I squeeze it into water and down it right before I eat. And that helps to coat my stomach, and that's where your mast cells are, is in your tummy. And so that helps to kind of soothe that and quiet them down and be like, no, thank you. You are not needed. But yeah, it's kind of weird.
Tim Reitsma
That's just wow. Okay. I learned something new. I'm sure our listeners learn something new if somebody's like hey
Katherine
Yeah. And it's different for everybody, by the way. Like I've talked to other people with it and the stuff that sets them off is completely different.
Tim Reitsma
Yeah, you can't prescribe a diet for you. And so it's like, hey, Katherine, have you tried just eating all pecans, nuts, and just drink milk? Maybe just stick with that and I'm sure you'll be fine. Yeah, I know. Yeah. I'll go ask my kids after, I'll let you know. Yeah.
Katherine
New.
Katherine
Hehe
Katherine
And milk is not good either, it's terrible. I love milk. I have to drink oat milk now. Like what even is that? How do you milk an oat? That's what I want to know. How do you do that? But no, like you do. Yeah, we're ready to just go out. But it's so, it's so bizarre. And so I do, I have certain things I do avoid, just cannot touch. And then other things, like, you know, citrus is really hard for me. Like I said, certain nuts you know, et cetera, but spicy foods can be very bad, very bad very quickly. But yeah, it's the most bizarre condition.
Tim Reitsma
It is, wow, okay. I've learned something. I'm gonna go do some research. Whatever I found, I'll put the links in the show notes as well. And as I look to wrap up here, a couple of things. First, I want to thank you for sharing so openly, vulnerably for sharing some laughs, for sharing the very personal story of miscarriage. I know that is a very personal one. And for people who are wanting to embrace their story, to tell their story about living with an invisible condition.
Um, in order to, because I believe that when we share our story, we will end the stigma, we will start to end the stigma. And I've already seen it happen. We released an episode on OCD and I had someone reach out to the guest who's now connected me with just a powerful story. And now they're saying, I want to tell my story. It's time. When you hear that, how are we going to end the stigma? How are we going to continue to, um, to end this thing that surrounds invisible conditions?
Katherine
A lot of conversation and changing from making accommodations things that we have to quote deal with after the fact and changing it to everything, everything from policies and procedures to the physical design of different things to just the way that we function as a society, changing to a universal design. That's it. Just this is how it's, and it's got to be flexible because like we said earlier, we're all unique.
My experience with OCD is, I'm sure, very different from Glasgow's that you have. And my experience with MCAS is very different from that, from other people, and so on and so forth. So being flexible with things, that's the key. So I think talking about it, universal design and flexibility, and then responding in curiosity, not ego. That's it.
Tim Reitsma
Powerful, responding a curiosity, not ego, flexibility, learning that the word normal just doesn't exist. And if we are able to embrace that and truly embrace that, okay, there's some thunder there. The word norm, I love it. I'm gonna give a profound thought here and it's like the world is opening up as I'm ready to speak, I love it. Yeah.
Katherine
Yeah. Sorry. It's very ominous. Yeah, it's just a very ominous sound coming from Katherine's end.
Tim Reitsma
I love it. Yeah, it's, you know, if we keep talking about this and we keep seeing a little bit of change and we're gonna see a change en masse, curiosity, not ego, embrace vulnerability, uncensored honesty, if we give a bit about ourselves we choose what, how much to give, how much to share. And for those who are listening as Katherine says, respond vulnerably, and just get curious and ask questions. So I really enjoyed our conversation. I think we could go on for a couple hours. And so I'm sure we're gonna record again because I think, you know, just even a couple, we could record six episodes just on each specific condition and away you go.
Katherine
Oh, that was not easy.
Katherine
easily. There you go. The things wrong with Katherine. That would be a great series.
Tim Reitsma
I think we'll have a little series coming up later this spring.
Katherine
That'd be hilarious. I love it.
Tim Reitsma
Oh, it's so fun. Katherine, thanks for coming on. And for those who are listening, I truly appreciate you. I know we've accepted, we've taken a couple of donations now through visiblecondition.com on the website, which is phenomenal. And people are subscribing to the newsletter and people are leaving comments there. So I hope you feel like you're missing out. You need to subscribe to that newsletter. There's some good stuff in there. And so that's my little selfish plea at the end to just continue to support Invisible Condition, join this movement that we're creating. And also we'll put all the links on how to get ahold of Katherine in the show notes. You need to connect with her. She is phenomenal and reach out. Yeah, she literally does. I've reached out a few times and she's like, she's on it. So with that again, thank you Katherine for coming on. And I hope everyone has an amazing day.
Katherine
Retail anytime about anything I've got you.
Katherine
I gotcha.
Katherine
Thank you.
