Ep: 001 - The Intro with Tim and Tania
Tania Reitsma - Bio
Tania Reitsma was born and raised in Vancouver, BC, Canada. She looks pretty happy and healthy standing beside her handsome husband Tim Reitsma in this photo. So what’s her deal?
Not only does Tania live with an invisible condition—Ankylosing Spondylitis autoimmune arthritis—she has also played a significant role as a caregiver during Tim’s journey with Crohn’s disease.
As Tim’s wife and mother of their two young kids, Tania’s got a lot on her mind about the topic of invisible condition. She believes in the importance of self-advocacy when it comes to the effective management of personal health. She also believes that every individual has the ability to help someone else, by sharing their story, lending a helping hand, or providing a soft shoulder to cry on.
What does Tania do when she’s not busy wiggling around in her chair because of her sore back? As a freelance copywriter and blog writer, Tania helps small businesses communicate their unique brand stories and values—in ways that resonate with their target customers.
Outside of work, Tania likes to lift up her community and local merchants in her neighbourhood through her Steveston People Blog and Podcast.
Show Notes
Introduction and Mission: In the inaugural episode of the Invisible Condition podcast, hosts Tim and Tania Reitsma set the stage for a series of deeply personal and insightful discussions. The podcast aims to shed light on the challenges and experiences of individuals living with invisible conditions, such as Crohn's disease and ankylosing spondylitis, which both hosts personally battle. The mission of the show is not just to inspire but to foster real change in how society perceives and interacts with those who have invisible illnesses.
Personal Struggles and Transparency: Tim shares his journey with Crohn's disease, discussing the physical and mental toll of managing numerous medical appointments, procedures like colonoscopies, and the impact of various treatments. He speaks candidly about the emotional burden of hiding his condition to make others comfortable and how he shifted towards openness about his struggles. This transition to transparency, including sharing on platforms like LinkedIn, led to connections with others in similar situations, revealing a widespread yet often silent struggle within the community.
Family Dynamics and Caregiving: Tania, Tim's wife, also deals with an invisible condition, ankylosing spondylitis, which affects her mobility and energy levels. She shares her experiences, including the misconceptions and dismissive attitudes she's faced due to her illness. The podcast delves into the dynamics of caregiving within their family, highlighting the challenges and emotional impacts on both the person with the condition and their loved ones. They discuss the importance of support systems and the need for more resources and guidance for families navigating these difficult journeys.
Community Engagement and Future Goals: The podcast emphasizes the importance of community support and understanding, inviting listeners who are caregivers, medical professionals, or those living with an invisible condition to share their stories. The hosts aim to explore various aspects of living with such conditions, including the impact on careers, financial planning, and the need for flexibility in the workplace. They express a desire to hear from children of those affected, as well as experts in storytelling and medical fields, to broaden the conversation and support network for those dealing with invisible conditions.
Overall, the Invisible Condition podcast seeks to create a supportive community where the challenges of invisible illnesses are openly discussed and understood, helping to reduce stigma and provide practical support.
Transcript
Tim Reitsma:
Hey Tim here, host of the Invisible Condition podcast, a show where we talk about unusually normal things. So before we get into all the episodes that are coming, I wanted to take a moment and share this space with my wife, Tania.
We want to talk about the point and the purpose of the show. And well, what you're going to get out of this. You know, we want to do more than inspire. We want to change the world. And how are we going to do that? We're going to tell stories from people who live with an invisible condition, and hear from caregivers, professionals, and those who have an idea about how we can kill the stigma that surrounds sharing. about our normal.
The past few years were a rollercoaster. In addition to being severely sick physically, I was sick and tired of holding it all in. All the fear of judgment by others who lack understanding or awareness about my condition. With all my appointments, I had to manage and endure, constantly having to get a camera up my, well, let's just call it a colonoscopy. Getting syringes in my bloated knee to drain the excess fluid, and being hooked up to IVs to get new medication, new blood, and new iron.
With all that real stuff I had to deal with, I was done trying to come up with creative ways to avoid talking about my condition, and all my medical appointments in order to make other people feel more comfortable. So I started to be more open and candid with friends, coworkers, and relatives about what I was going through physically and mentally.
I started posting on LinkedIn about what I was going through and my frustrations with society when it comes to invisible conditions. It was scary and, oh man, it was hard. Yes, I did face judgment and discrimination. But I also found connections with so many people who responded by telling me that they too have an invisible condition but are too afraid to share.
Fear that they'd lose their job, lose relationships, fear judgment, or be treated differently. Last winter, I literally could have died if I didn't get the proper medical intervention in time. And now after surgery and being on a new medication, I have some quality of life back. And I don't want to waste it. There's no cure for Crohn's disease, but hey, I've got to at least make it count for something good in this world.
That is really the inspiration and why the Invisible Condition project is off the ground. And as I said, I wanna introduce Tania. So welcome Tania.
Tania Reitsma:
Thanks for having me.
Tim Reitsma:
So we've been married for many, many years and before getting married, like you knew that I had Crohn's and but we also share something else in common. We also have, you have an invisible condition as well. Why don't you tell us a little bit about that?
Tania Reitsma:
Yeah, I have arthritis and it's called, some may know it as ankylosing spondylitis, which is autoimmune. So for me, you can't really see it. So it's definitely an invisible condition. But it just affects a lot of things. It affects my back, my neck.
affects my energy level. So I think I feel like typically, I'm maybe like 70-60% of someone who may be, you know, able-bodied. I would compare that to how I felt before I started experiencing symptoms as a teenager. So yeah, I've been living with that for over 20 years and
It's been quite a roller coaster. It's also affected my eyes as well. Being a disease where the immune system is attacking itself, it often does attack my eyes as well. So, and I've actually recently gotten diagnosed with a cataract that formed just due to side effects of the steroid eye drops that I've been using. So,
So yeah, that's what I live with. Yeah, and it's been a tough ride, I think, in terms of people understanding what it's like. And I've often been told that, hey, you're too young. When I was 18, no, you don't have arthritis. You're too young for that. You just need to do a little more yoga.
you know, just stop eating tomatoes or things like that. Right? And I'm like, yeah, no, that's not how it works. But I mean, I'm almost 40, I'm 39, I'm almost 40. So hopefully I'm like, well, maybe I'm like growing into it now and people aren't gonna question it as much. So I just tell myself that.
Tim Reitsma:
Yeah, I know, I don't know about you, but some days when I'm not feeling well, I want to walk with my cane, even though it has nothing to do with my Crohn's, but at least then it's, it's a visible way of saying, Hey, I'm, I'm going through something. And you know, when I was, I also live with arthritis and you've seen my knee. It's sometimes it's the size of a soccer ball and, uh, there's go to my website. If it's wikita.com, you'll see a picture of them actually pulling all this fluid out of it. It's pretty gross, but, uh, it's also pretty cool at the same time. And, and arthritis just manifests in different ways, but I,
I like what you said is, is you're on medication and even that medication has a side effect and has now caused something else. And I think we often forget about that. It's like, oh, medication is to help you, but there's often a side effect to that.
Tania Reitsma:
Mm-hmm.
Yeah, I mean, based on what I've seen too. Well, I've been on several different medications and some of them have made me feel just horrible. Even thinking about some of the, like the methotrexate injections I took for a while, it just, even the thought of like, and picturing the syringe going in front to my skin, I just wanna throw up.
because it did induce like nausea in me. And every time I think about that, I just want to throw up. And yeah, like talking about the side effects, I think that is another component of things that people don't usually talk about. And it can be really hard on relationships too, right? Like while you were on prednisone for high doses.
many times over the past few years, yeah, definitely those roller coasters that happened, your insomnia, restlessness, and things like that, and just being in the bed beside you, and not being able to sleep either because of your restlessness, that was super hard, and also just knowing that emotionally,
It was such a roller coaster for you, but also being a spouse and being a mom to our kids and trying to, I guess, keep emotions at bay and also try to keep things calm in the household while you're going through mental turmoil. I mean, that's a lot. So that's something that maybe people...
Tania Reitsma:
aren't super aware of either.
Tim Reitsma:
Yeah, I, for those who don't know, you know, like, like I said, last year, I was very, very sick and I was on a high dose of prednisone as well as a bunch of other medication and during that time I would go to sleep, you know, like 10 o'clock, but I'd be awake at two and just wide awake and I described it to people that I felt like I had enough energy to run a marathon, but I wanted to punch everybody I saw and.
Someone also described that as a manic state. And so also what I'm going to post on my website is during that time, I'd, I woke up at like 2 a.m. most mornings and I just bake. And to the point where my kids were like, stop baking muffins. One, the smell wakes me up at like 4 a.m. because it smells so good in the house. And two, I'm sick of muffins. And so I got to post a recipe that I invented and I'm going to call them manic muffins. And so go to the recipe. They're delicious. My kids have started asking for them, you know, six months later
Tania Reitsma:
I'm sorry.
Tim Reitsma:
my manic muffins again, but absolutely right that when you're going through something that's invisible and you're taking medication to treat that something and that medication has its own side effects. But I think what's really important, especially in this relationship is, is that somebody's invisible condition just doesn't affect them. It has an effect on everybody else around and not necessarily in it.
hopefully not in a negative way, but in a supportive way. Because, you know, when I was going through all I went through last year, like Tanya, you and the kids were so resilient and so helpful, but it was hard. And I think that's what we want to hear on this podcast as well, is stories from people who are caregivers and maybe how that has affected them, how they deal with it and how it affects their children. What else do you want to see come out of this podcast?
Tania Reitsma:
Well, to talk about the caregiver issue too. I think I've been in this kind of caregiver role, you know, through our marriage, but I guess I can also, I also think about my mom as my caregiver when I was growing up too and having to deal with all that. So, yeah, like I think what I want to hear about is in terms of going back to caregiver actually, about like,
maybe a parent's perspective if their child has an invisible condition and then um and hear about like spouses or family members who or friends who anybody who takes care of um someone with an invisible condition um I think something else that I want to hear about that's I guess not really caregiver but some somewhat related
is the child's perspective when they see their parents have go through, you know, complications or their journey with the invisible condition. Our kids have witnessed a lot and they're under 10 years old and I know that there's things that are probably going to come up again in the future. Maybe there's probably some trauma there.
I'd like to get be prepared as a parent on how to help them. And yeah, and I think what I what I noticed before your surgery, you you, your recent surgery, you had a really long, like a really thick book that kind of explained the procedure and you know, what, what pre postdoc was going to look like. And
You know, I get, I mean, St. Paul's, like, what a great hospital and the health care team on preparing for all of that. But I think for our kids, there wasn't really anything given to us through the health care provider on how to prepare them on what to expect. And so some of the anxieties that came up, we didn't even didn't even really anticipate.
Tania Reitsma:
Do you want to share one of the examples about the hospital?
Tim Reitsma:
Yeah, you know, something that we just assume is something that our son was very scared and upset about, and that is weekends. Our son understood work was from Monday to Friday because that's what he sees us do. We work Monday through Friday. So he was really concerned what happened on the weekends. He thought in his mind that all the doctors and nurses went home and Saturday and Sunday, all the patients were left on their own.
And I'm so glad that he brought that up because he was visibly upset. He was so concerned about that. And, you know, we think it's like, oh, that's funny or that's silly. But in his mind, he was concerned for my safety. He even asked, well, who's going to take care of dad on the weekends? Do we need to go there? Do we need to help him? And we had to teach him and tell him, no, there's doctors and there's nurses seven days a week, 24 hours a day.
But to your point, Tanya, is there's a lot of preparation for patients. You know, here's what you do two weeks before a week before day of day, what to expect post-op, but what about caregivers? What about families? You know, I'm so fortunate to have you and the kids and, you know, when I came home, I laid on the couch and Kiona has this, her daughter has this giant teddy bear and I just, you know, just spoon that teddy bear for weeks. Um, but.
I also went through the surgery by myself, very different experience and traumatizing. And so I think out of this podcast, if, if you're listening and you're a caregiver to somebody with an invisible condition, I know firsthand, Tanya knows firsthand that it has an impact on you. And we want to hear from you. We want to hear your side of the story. Because if we're going to end the stigma, if we're going to take away all that fear that surrounds sharing about invisible conditions,
We need to hear from all sides of the story. So I invite you right now, head to invisiblecondition.com, head to the connect tab and there's a little form on that, on the website to, to fill out, reach out to me or through LinkedIn or get, get in contact with me through social media. And I want to hear from you, but I also want to hear from your children, you know, maybe not directly, but I want to hear the impact that it's had on them. I asked our son just yesterday.
Tim Reitsma:
Uh, or a few days ago, you know, what was it like, you know, now that I've gone through surgery and he, he's thankful because now I have the energy to go play with him and that just like I choked back tears and, uh, you know, in that six months we watched a lot of TV because that's all I could really do. And, um, and now he knows where all the washrooms are in our neighborhood because that's, I'd walk to a washroom and then walk to another one and then walked to another, like that was our loop around our community, but.
But also not only that, just hear from experts and caregivers. Or sorry, but not only that, hear from experts.
Tania Reitsma:
the windows open and I can hear lots of voices outside. Just pause that. It's just really noisy.
Tania Reitsma:
Um, I think we need to kind of wrap it up. I want to talk about one thing that I want, I'd like to hear about too is like, things that can help like helpers, like friends and because we can say like, like I can give some examples of how people helped in very like practical ways but also like, you know, I kind of had to help so I'll could touch on that for like half a minute.
Tim Reitsma:
We're going to wrap it up here in a minute.
Tim Reitsma:
Mm-hmm.
Tim Reitsma:
Yeah. So let me lead into that. Yeah.
Tania Reitsma:
Oh, wait, and also one more thing I think would be really interesting to note is because with invisible conditions, it really has an impact on like the career that we are able to do, like the jobs we're able to do. And a lot of us maybe were like independent contractors or freelancers because we need some flexibility. So something like I would like to hear more is about like
Tania Reitsma:
accommodations but also ways to like financially plan or practically plan like things like that. So I can kind of touch on that
Tim Reitsma:
No. Okay. Sure. And I also want to touch on like, if you're afraid, if you don't know how to tell your story, um, connect with me and I'm not an expert, but let's figure it out. Um, okay.
Tania Reitsma:
Mm-hmm. Yeah.
Tim Reitsma:
So I'd also invite people who are experts, maybe in the medical profession, maybe you're an expert storyteller and have figured out how to tell an amazing story. I invite you to come on the podcast. Tanya, what else do you want to hear out of the invisible condition podcast?
Tania Reitsma:
So another thing I'd like to hear more about is first from, I think things, maybe some advice and resources that can also, and maybe different guests that live with invisible conditions and from caregivers, some, maybe some ways that other people can help in a very like practical way or emotional way.
I think for us, because we have been so open about sharing for you, the journey you've been having with Crohn's disease, and even for myself, when problems have come up with my arthritis, we've been so open about it, and therefore we've had so many friends from church, we've had family members, really kind of.
like pour a lot of their generosity on us, whether it's, you know, here's money to pay for like parking because you need to pay for your parking and the hospital parking is so expensive or here's some like meals. I mean, we've gotten so many meals and I can remember every single meal that we've received and child care but and even rides to the rides to the hospital or the doctor.
But I think oftentimes what I've noticed is that people want, really do want to help, right? They want to jump in there and really help and support. So if there's ways in which people can help and ways for someone living with an invisible condition can kind of get that message across.
you know, just maybe some coaching on how we can ask for help and be specific in that way and maybe some innovative ideas on how people can help. And then another thing, I think, thinking about as someone who lives with an invisible condition and as a caregiver myself, over the years, like I'm at a point where no, I need
Tania Reitsma:
some flexibility in my job. So I've chosen a career where I'm a freelance copywriter and blog writer, but it's also a trade-off, right? There's maybe less security from the standpoint of being employed, but there's so much more flexibility in terms of being able to go to my appointments or I can work late at night. So I think what I would like to hear is from someone who is good with...
maybe perhaps financial literacy or like some planning for the future so that people like us can learn to create some stability and also like plan wisely for the future and understand some of those resources that are out there.
Tim Reitsma:
I love it. So there you have it, everyone. Uh, a little bit of backstory and what we hope to, to do with this podcast, with this platform, you know, on the site we've written, seen, supported and empowered through the power of our personal stories. Let's create a world where there's no stigma attached to invisible conditions. And I wholeheartedly mean that. So if you're a caregiver, if you're a medical expert, if you have resources to support someone.
from that perspective of career, financial literacy to support or to plan for that future. If you live with an invisible condition but don't know how to tell your story or maybe you want to tell your story, please reach out. Head to the website, invisiblecondition.com and from there you'll see the contact button up on the top right. Hit it, connect with me and I will get back to everybody who reaches out. So with that, Tanya, it's awesome to...
hear your voice through this platform, you're going to be on again because there's so much insight and wisdom in you that I want you to share and invite you to share. So, so yeah, if, if you found that this was helpful, if you are curious, uh, if this is a resource that you want to contribute to, um, please do so. And I look forward to hearing your feedback on future episodes. So with that, I hope everyone has an amazing day.
