Ep: 009 - Reflections of a Caregiver - Tim and Tania Reitsma
Tania Reitsma - Bio
Tania Reitsma was born and raised in Vancouver, BC, Canada.
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.
Contact Links:
Website - Steveston People
Instagram - Steveston People
Resources:
Ankylosing Spondylitis Information: Spondylitis Association of America
Crohn's Disease Resources: Crohn's & Colitis Foundation US & Crohn’s and Colitis Canada
Caregiver Support and Resources: Caregiver Action Network
Mental Health and Counseling Services: Mental Health America & Canadian Mental Health Association
These resources offer valuable information and support for individuals dealing with invisible conditions and their caregivers, aligning with the themes discussed in the podcast.
Summary
This episode of the Invisible Condition podcast is dedicated to caregivers. The hosts, Tim and Tanya, both live with invisible conditions and have played the role of caregiver for each other. They discuss their experiences and the importance of bringing the conversation about caregivers to the forefront. The conversation covers topics such as living with invisible conditions, challenges of caregiving, supporting each other, building a supportive community, and taking care of oneself as a caregiver. The hosts emphasize the need for open communication, positive self-talk, and appreciation for caregivers.
Takeaways
Living with an invisible condition can be challenging, and caregivers play a crucial role in providing support and care.
Open communication and sharing the emotional load with trusted friends and family members can help caregivers navigate the ups and downs of their role.
As a caregiver, it is important to take care of oneself and seek support when needed.
Building a supportive community and asking for help are essential for both caregivers and those living with invisible conditions.
Positive self-talk and trusting the process can help caregivers stay grounded and resilient.
Episode Show Notes
Introduction to Caregiving: Hosts Tim and Tania Reitsma dedicate this episode to discussing their roles as mutual caregivers in their relationship, both living with invisible conditions. Tania opens up about her struggle with ankylosing spondylitis, a form of autoimmune arthritis, detailing the onset during her teenage years, the challenges in diagnosis, and the impact on her daily life, including unexpected effects like iritis leading to cataracts. This personal account sets the stage for a deeper exploration of the caregiver experience in the context of invisible illnesses.
The Caregiver's Perspective: The episode delves into Tania's insights as a caregiver, especially during the times when Tim's Crohn's disease was most challenging. She reflects on her thoughts and feelings when informed that Tim was too sick for surgery, highlighting the emotional resilience and practical mindset required of caregivers. Tania emphasizes the importance of community support and the need for caregivers to be resourceful and adaptable in the face of unexpected health crises.
Challenges of Caregiving: Both Tim and Tania discuss the physical and emotional toll of caregiving. Tim shares his experience of managing a demanding career while caring for Tania during a severe flare-up after childbirth, emphasizing the realities that contradict the often idealized image of family life. They touch on the importance of having a supportive community, the difficulties of juggling multiple roles, and the need for caregivers to acknowledge and address their own needs and limitations.
Communication and Support Networks: A key theme of the episode is the critical role of communication in the caregiver-patient relationship. The hosts discuss the importance of being open about one's needs and limitations, both as a caregiver and as someone living with an invisible condition. They stress the value of building a support network, including friends and family who can provide practical help and emotional support, and the need for caregivers to have their own outlets for venting and receiving encouragement.
Advice for Caregivers and Future Plans: The episode concludes with advice for caregivers, emphasizing the need for self-care, positive self-talk, and proactive seeking of support. Tania announces her plans to write articles about the caregiver experience and invites listeners to contribute their perspectives and suggestions for topics. This call-to-action encourages community engagement and underscores the podcast's commitment to supporting and empowering caregivers and those with invisible conditions.
Episode Highlights
I think one thing that people don't know is that it (ankylosing spondylitis) can affect the eyes as well. So with my immune system attacking itself, I often get a condition called iritis. So everything would just look cloudy in one eye, like one eye or the other eye. And I think recently I ended up developing a cataract because from the side effect of steroid drops to treat the iritis. So we really have to weigh the pros and cons of the treatments, but this time I just wasn't so lucky and now my one eye is like permanently blurry. And yeah, it's not a good time for me to get cataract surgery because of my age.
Hearing that you're too sick for surgery, to be honest, I wasn't shocked. I could see, and that was such a rough time. I was not surprised actually for them to say that, because I think from what I witnessed and like, you know, living together and taking care of you and knowing how your body was and what your health was like before you came out of remission a few years ago. Even like when we first met, you were super active. The medicines you were on at that time, weren’t working.
You've (Tim) been my caregiver too. So I think it was like, okay, I think he'll understand what I go through too.
I (Tania) couldn't lay down, I couldn't get up, I couldn't move without my body just seizing up. So it was just, I couldn't move and I'd be in excruciating pain. I remember having to drink out of a straw because I couldn't tip my head up. So having, you know, a newborn, being at home with a newborn and having to find a way to get to my appointments, which is I had to get, I think my mom to walk to our house to drive me to my acupuncture and things like that. That was really hard, but why don't you tell people kind of what your experience was as a caregiver when I really couldn't really do anything other than like feed my baby and change the diapers.
And you said something about like maybe one or two years ago, maybe last year that you were downplaying your symptoms. Because you didn't want to ruin Christmas. You didn't want to spoil our mood. And I just remember feeling like, well, I want to know what you're going through. So I could take care of you. What if, you know, what if I like suddenly, I go upstairs and you're like passed out and then I got us get an ambulance or something like that.
As a caregiver, maybe your parents or a sibling who don't live with you as a caregiver. You need to set up that almost rules of engagement right from day one saying, Hey, can I call you in the middle of the night? What's appropriate? What's not appropriate? Because if somebody says, no, you can only call me between nine and five. Okay. Well, who's going to, who are you going to call in the other hours when you need support? And setting that up, I think is something, well, I know it was is if so, so important.
Being able to just kind of ground yourself and think like, okay, what do I need to do to, to like to help this person and then also what do I need to do to take care of myself? Also just having positive self-talk like I think through the process because you don't know like it's like the past few years has been up and down right? There's like oh you're getting better not good and it's like up and down, but also knowing that like, we don't know what the outcome is going to be.
Chapters
00:00 Introduction
00:49 Living with an Invisible Condition
07:12 Becoming Caregivers
08:08 Challenges of Caregiving
12:27 Caregiving During Pregnancy
14:50 Supporting Each Other
18:37 The Importance of Communication
21:21 Building a Supportive Community
24:48 Taking Care of Yourself as a Caregiver
27:53 Positive Self-Talk and Trusting the Process
32:39 Appreciating Caregivers
37:42 Conclusion
Transcript
Tim Reitsma
Hey, Tim here, host of the Invisible Condition podcast, a show where we talk about unusually normal things. Well, this episode isn't really about unusually normal things. This episode is dedicated to caregivers. And you might recognize my guest today, Tania. We are partners in life and we both live with an invisible condition. So we both played the role of caregiver. We're gonna spend 20, 30, 40 minutes talking about our role as caregivers and why it's such an important conversation to bring to Invisible Condition. So welcome Tania to the show.
Tania Reitsma
Thanks for having me on your show, Tim.
Tim Reitsma
Yeah, it's good to connect here on the podcast. We are in our house in separate rooms because I haven't quite figured out how to record in the same space, but we're gonna record an amazing episode. And before we get into the topic of caregivers, why don't you share briefly about the invisible condition that you live with?
Tania Reitsma
So the invisible condition that I live with is a form of autoimmune arthritis, which is commonly known as ankylosing spondylitis. And how it affects me is it affects my neck quite often, and I get it in my back as well as like other joints around my body.
I would say the onset of it was when I was about 16. And no one had any clue like what was going on. I was super athletic, but I just started getting pain in different areas, like my lower back, my knees were swelling. I couldn't lift my shoulders. I couldn't turn my neck. And it just gradually over a couple of years, it started getting worse and worse.
Um, up to a point where I basically, um, yeah, every, everything I did would be painful, um, sleeping would be painful because I couldn't get into a comfortable position. I was, my, my body was so heightened, like in terms of anything stimulating, it stimulating pain that, um, yeah, by the time I was in grade 12, so it started around grade 10, I would say. By the time I was in grade 12, I couldn't really do any sports teams or anything like that. I would have to go home and take naps.
I was doing everything I can, like acupuncture, massage therapy, and taking a lot of painkillers prescribed by the doctor. And it wasn't working, so it was pretty bad. And then I ended up getting diagnosed when I was, I think maybe the first year of university with arthritis, and it was a huge relief because it kind of ran in the family, but people didn't believe it and there were some specialists that was really reluctant about diagnosing it because I just didn't fit the stereotypical male age group. And one of the markers, I think in my blood work, it wasn't showing up. So yeah, it was quite a rough journey of getting that diagnosis. And...
Yeah, physically and socially as well. Just missing out on a lot of things as a teenager. But yeah, nowadays it's up and down, but it's gotten better over time. And I think I just know how to manage my body.
I think one thing that people don't know is that it can affect the eyes as well. So with my immune system attacking itself, I often get a condition called iritis. So everything would just look cloudy in one eye, like one eye or the other eye. And I think recently I ended up developing a cataract because from the side effect of steroid drops to treat the iritis. So we really have to weigh the pros and cons of the treatments, but this time I just wasn't so lucky and now my one eye is like permanently blurry. And yeah, it's not a good time for me to get cataract surgery because of my age. So yeah, it's something that I have to live with every day and people don't know that.
Tim Reitsma
Yeah, it's completely invisible. And sometimes as your partner, I forget. And because it's not visible. And we went for a walk just a few nights ago and it was cold outside, dark outside and started to get a little foggy. And you'd said, this is how I view the world all the time. And so putting it in that perspective, if you're in a super foggy day or pull up a foggy image on wherever social media, wherever you are. Yeah. And.
Tania Reitsma
Or try driving at night in the fog. And there's like the headlights, like, that's what it's like in one eye, and glasses don't do anything.
Tim Reitsma
Yeah. So that's a, that's a great visual for anybody who's listening to put that into perspective, you know, put like a foggy image in front of your face and say, this is how I'm going to see the world now. And so we're going to devote a full episode just to the condition that you live with and how you went through the diagnosis as well as how you live your life now and just talking about why this project, again, I know we did an intro episode on this, why this project is so impactful, but also personal to both of us. But today we're here to talk about caregivers. You've been my caregiver for, oh geez, I think since we first met, you were like signed up and I'm sure in your mind, you're like, what the heck am I getting myself into? But.
Tania Reitsma
Since we met, yeah.
Tim Reitsma
especially the last three years. Yeah.
Tania Reitsma
Well, you've been my caregiver too. So I think it was like, okay, I think he'll understand what I go through too. I think that was the thing.
Tim Reitsma
Definitely. And I think especially the last few years, three years in particular, at least for me, but even, you know, I'm curious from your perspective over the last three years, it was almost to the day when my Crohn's came out of remission. It was this time last year, almost to the day when we were sitting in the doctor's office and I got the news that I was too sick for surgery.
What was going through your mind as a caregiver of going, like, yeah, what was going through your mind? What was happening?
Tania Reitsma
Well, kind of hearing that you're too sick for surgery, to be honest, I wasn't shocked. I could see, and that was such a rough time. I was not surprised actually for them to say that, because I think from what I witnessed and like, you know, living together and taking care of you and knowing how your body was and what your health was like before you came out of remission a few years ago. Even like when we first met, you were super active. The medicines you were on at that time, they were working.
And so I wasn't surprised. I was worried for sure. But I think at that point, when I spent so much time worrying at that point, it was almost like, it felt like normal. I know that it's crazy to say that, but I feel like my tolerance level for like bad news was so high that I'm like, okay, so, okay, what are we going to do next? What do we need to do now? I think that seeing your reaction and trying to work around your emotions and the way you're also like the high dose of prednisone, what it was doing to you emotionally. I think that was the hardest part actually being like supportive and being the calm one in that situation when for you it was like catastrophic like information and everything was like chaos at that time for you. But for me it was like, okay, now what should I do? And okay, like, for me, I have to be strong. I have to, you know, pick up the kids from school. I have to do all these things. And also like, okay, well, also who's around, right? Like we came back from the doctor's office. And, you know, I think one of the school friends, like one of the moms was helping, you know, with the kids that day. And so it was this kind of balance of like, okay, like how am I going to be resourceful? What can I do? Because I don't have time to like break down right now.
Tim Reitsma
Yeah, what I'm sensing also in there is just that sense of community. And as a caregiver, maybe somebody's listening to this and they are the caregiver, or maybe they're, um, maybe they're the one listening with, uh, and they live with an invisible condition who's receiving care, having that supportive community is so not just important, but impactful and I know it was helpful for me as supporting you and driving you to appointments. And when Willem was just born, you had a massive flair. And I was on duty a lot with our son. And...
Tania Reitsma
Should we kind of give the audience a little bit of a, kind of the backstory of what happened? Yeah, so I would say that in terms of caregiver roles, I think you probably assumed that first major role in our relationship and then like, you came out of remission and then I became your primary caregiver, but.
Tim Reitsma
Sure, yeah, why don't you give a backstory of that? Yeah.
Tania Reitsma
back in 2013. That's when Willem was born, right? That's 10 years. So yeah, I'm like. Actually, I had a, I was the one of the lucky ones because I was told that from some people because the immune system during pregnancy is kind of like suppressed a little bit.
Tim Reitsma
I think so, yeah.
Tania Reitsma
like the body doesn't react as much. So for some people with autoimmune diseases, they won't have as much like flares during a pregnancy. And I was one of the lucky ones because leading up to, even thinking about having kids, I was always so scared of like, am I gonna be able to survive like having kids with this disease? But...
Tim Reitsma
Mm-hmm.
Tania Reitsma
Luckily, my pregnancy was actually comparatively really smooth. And after giving birth, there was a lot of sleepless nights, breastfeeding, so a lot of tension on the body. And I ended up with this horrible flare in my neck. So it was like constant pain.
I couldn't lay down, I couldn't get up, I couldn't move without my body just seizing up. So it was just, I couldn't move and I'd be in excruciating pain. I remember having to drink out of a straw because I couldn't tip my head up. So having, you know, a newborn, being at home with a newborn and having to find a way to get to my appointments, which is I had to get, I think my mom to walk to our house to drive me to my acupuncture and things like that. That was really hard, but why don't you tell people kind of what your experience was as a caregiver when I really couldn't really do anything other than like feed my baby and change the diapers.
Tim Reitsma
Yeah, you know, it was, you know, I'll admit it was challenging, juggling a career that was taking off. And for me, I was never one to put career over family. It was always family over career. And it was, it was hard, you know, getting up in the middle of the night to, um, bring a baby to you to feed, then to change diapers, endless walks around our house because he was a fussy baby and didn't want to sleep and taking care of everything. But as a caregiver, that's our role. And I know I'm sure I complained, I'm sure I wasn't happy all the time. And the role of a caregiver is not to put on a smile all the time and just pretend everything's okay, because it's not.
I remember being extremely tired, working a very demanding job, but also a job that I loved. And this is where we talked about a little bit earlier, the power of community. We belong to an amazing church and we had people come in and bring meals and clean our house and bring us groceries. And stepping into that, I don't know.
You know, I could say, I don't know how we would have gotten through it, but we would have, but stepping out in vulnerability and saying, Hey, we need help. We need support. And I was fortunate enough to, to be able to take some time off work and, and had a couple weeks to be able to support, but you know, seeing your loved one who just gave birth to your child in excruciating pain when we see all the picturesque moments of
Tania Reitsma
Yeah.
Tim Reitsma
happy families and smiling and happy times. And we did get that, you know, after the flare subsided, but it was a challenging time. And, you know, as a caregiver again, as you said earlier, sometimes we just have to remind ourselves, okay, now's not the time to break down. This is my job. I got to do my job. I might not like my job.
Tania Reitsma
It's supposed to be a happy time.
Tania Reitsma
Mm-hmm.
Tim Reitsma
but I gotta do my job because I love the person I'm supporting.
Tania Reitsma
Yeah, I remember just feeling like so useless as a mom. Yeah, I don't know if you like recall me ever like seeing that, but definitely felt like worthless.
Tim Reitsma
Mm-hmm. Yeah, I remember that. I remember lots of conversations around what did we get ourselves into? What did we doing? You saying that you just didn't feel that you're up for the job. And, you know, as a role of a caregiver, it's, you know, when you're going through something, something that's invisible, it's not visible from the outside. Often there's more than just one thing.
That you're dealing with, you know? For me anyways, it's the physical manifest in the mental side of things. And I know that affects you as well. And I was talking to somebody else today who had to go seek counseling after his diagnosis with cancer. And him and his wife went to counseling together because he was just bottling everything up. And she would say, I don't know how to take care of you unless you tell me. And I think that's such an important thing to remember is when you are living with an invisible condition, the people that are surrounding us are not mind readers. They're not.
Tania Reitsma
Well, I mean, this is an interesting story too. I mean, I think we were sitting around the dinner table two nights ago and you were saying that, wow, like this is the first Christmas in a few years where I can eat normally. And you said something about like maybe one or two years ago, maybe last year that you were downplaying your symptoms.
Because you didn't want to ruin Christmas. You didn't want to spoil our mood. And I just remember feeling like, well, I want to know what you're going through. So I could take care of you. What if, you know, what if I like suddenly, I go upstairs and you're like passed out and then I got us get an ambulance or something like that. Like...
Tania Reitsma
I don't want to be surprised. I don't want the kids to be like have a harsh surprise either. So it's interesting. I think we're still working on that.
Tim Reitsma
And that's again, another important lesson for somebody who's living with an invisible condition or even a caregiver is we need to speak up. I remember we were doing a Christmas market selling a bunch of cool stuff that you had made and our son and daughter had made. And I went and I don't know if I told you this, but I don't know, I don't think I've ever said this, but I was experiencing so much internal bleeding through those few days that I was so scared. But as somebody who's living with going through something, I didn't want to take that joy away from anyone else. And again, I'm not, I know I'm not the only one who feels that way because when my family wants to go do something, I want to go do it, or when they're excited about something, I want to be excited about it. And when you put on that caregiver hat, if you were hiding something, or if you said, oh, my vision's fine, and you got in your car at night and started driving and crashed, it'd be like, what the heck? Why didn't you tell me that you can't see anything? And I think it's so, so important that we need to speak up. And we're fortunate, we're living in the same house, recording in separate rooms, but we're living in the same house. But maybe you don't have somebody living with you, maybe a friend.
Tim Reitsma
As a caregiver, maybe your parents or a sibling who don't live with you as a caregiver. You need to set up that almost rules of engagement right from day one saying, Hey, can I call you in the middle of the night? What's appropriate? What's not appropriate? Because if somebody says, no, you can only call me between nine and five. Okay. Well, who's going to, who are you going to call in the other hours when you need support? And setting that up, I think is something, well, I know it was is if so, so important.
Tania Reitsma
Yeah, I can think of several people that we have called in the middle of the night to come over because I had to take you to the hospital, especially when your knee really flared up and with your arthritis and everything. And yeah, I just remember calling our friend and being like, hey, can you please like and watch the kids while I, when I, so I can bring Tim to the hospital. Or there's other times where, yeah, there's like a neighbor or someone that we need or my sister driving across town to come. So it is so important. And it's so important to let people that you trust know what's going on because they want to help.
And they're not gonna know how to help you unless you tell them. And I would rather get, okay, if I were a friend, I would rather, if I were to get a phone call saying that I had to go and drive that person to the hospital, it would be nice to know in advance like what they're going through, right? And not just be like,
Like it's okay to spring it on somebody because it's like your friend and they should do stuff for you. But as like a friend and a caregiver, it's like, why didn't you kind of tell me that you're going through this? So I kind of have some preparation, right?
Tim Reitsma
Yeah, absolutely. And it's stepping into vulnerability, which is so scary for people because even myself, I used to not want to share what I'm going through, how I'm feeling. Uh, but there's so much power in that. We've all been burned before.
Tania Reitsma
Yeah, we've all been burned before. Yeah, for sure. Like, we've all been burned before where people, like, don't believe you or they think you're exaggerating. But whatever. Like, yeah.
Tim Reitsma
Or you don't want to offend someone, or you don't want to look weak, or you don't want to, you know, you fill in the blank. But as a caregiver, I'm curious from your perspective, and I'm sure there's other caregivers listening to this and you've been my caregiver for like, especially the last three years and through Crohn's coming out of remission and, and countless hospital trips for Crohn's and arthritis weeks and weeks in the hospital and surgery and all that stuff. What have you done and what would you love to share with other caregivers in order to support them? Like what carried you through that time?
Tania Reitsma
Um, I would say one, one thing that carried me through the time was having people that I trust that I could vent to. Um, yeah, because they're.
Tania Reitsma
People, you need people kind of outside of the situation that will listen and that will kind of like be on your side. People that don't just wanna offer solutions but just really validate what the caregiver's going through because there were times where I would like tell someone and like be like almost in tears about dealing with um, some of the side effects that you were experiencing in terms of like the mood swings. Um, some, some of the irrational thing, irrational thoughts, I would say. Um, I, I think that part of it, I feel like I was able to handle, um,
Tania Reitsma
like driving you to places and like, you know, doing those things. But I think, especially if you are living with a spouse and you're their caregiver and they're going through pain and they are, and I know this myself because I, when I was younger and I was living with my mom, sometimes I would lash out a little bit or just kind of not be as nice to her because I was in pain. And when you're in pain and when you're suffering, everything, even when someone comes in and talks to you, normally like just, it might trigger like feeling very irritated, right? So I think when I was like growing up, I mean, I think my mom, like saw a lot of that as my caregiver, but and then being your caregiver, there was a lot of that too, I think just the mood that came around with it. So I had to have someone to talk to and kind of vent to, like it's a rough day, like it's just a rough day. You know, Tim was told he's too sick for surgery and now he is like freaking out. I know it's gonna be okay.
But I don't know, like, there's nothing I could say to him that's gonna like make that worry go away. And that friend would just listen and just be like, no, you stay the course, you do your job, right? Like, you're doing great, you're a good mom, you're a good wife, like, and just cheer me on, right? What about you? Kinda, now, like, I'm like telling you all these things that I'm not even sure you like realize, but.
Tania Reitsma
Now I want to know your side.
Tim Reitsma
Well, first off, you are a good mom and a good wife and a good partner. So I will validate that for anyone who's listening. I, I just appreciated all the care and being on such a high dose of prednisone for such a long time. I describe it to people as I would go manic. I'd wake up at all hours in the morning. I would feel like I could run a marathon and punch everybody in sight. And so trying to control that around my wife and kids was incredibly challenging. But I was also aware of it because you, one thing I appreciated about you was you as a caregiver would say, that's not appropriate. Stop saying that. You would put your foot down. You wouldn't let me get away with behavior that was not conducive to our household. And even though I was incredibly medicated and not of clear mind, you still held that space and held it in a way that was still compassionate, but also firm. And so, I think for other caregivers out there, as Tania said, finding someone to talk to, maybe it's a friend, a family member, find someone, as somebody else said to me recently, who's just gonna lend an ear.
Tania Reitsma
Hmm.
Tim Reitsma
and maybe even start the conversation with, I don't need you to respond, I just want you to listen.
Tania Reitsma
Yeah.
Tania Reitsma
Yeah, and I think also sharing that emotional load with trusted friends too. So I realized over time, I can't shoulder 100% of that emotional support for you because I am just one person with one perspective and I'm not, you know? So having, knowing other like, male friends around that are like your friends who when they check in with me, I'm honest about how things are going and then they know to check in with you. I think that's really important, being able to share that emotional load with people who will actually do something about it and check in with that person who's under care.
Tim Reitsma
That's great advice. So if you're a caregiver, the person you're taking care of, who is that person's good friend or best friend or just a friend, reach out to them and build a rapport with them and not to talk behind somebody's back, but to build your own community as well as support. You know, if somebody is being irrational like I was, tap into a good friend and say, hey, you know, I need support in this. And, you know, something that comes to mind is even though I was extremely sick last winter, my dad was recovering from a pacemaker at the same time, my stepmom broke her wrist and they live in the middle of absolutely nowhere on a little farm and they needed support.
I remember my dad calling me up and saying, hey Tim, can you make the journey and just come spend a few days with me? And his wife called me up and said, hey Tim, I need support, can you come and help? And I made the long trek, the long journey. I stuck to my diet, I got lots of rest, I made it there. I couldn't do a whole lot, but just being there as an extra support as a secondary caregiver. I mean, they still talk about it. Even this summer, they said, hey Tania, thank you for allowing Tim to come up. I'm sure you were like, yeah, take him. I'm done with Tim right now. But, you know, it's okay to tap out. It's okay to ask for that extra support. And I think that's like the real theme of this episode, the last 30 or so minutes is, you know, whether you're living with something or you're caring for somebody, ask for support. That's the number one thing. Is there anything else that comes to mind as a caregiver that we want to leave with our listeners?
Tania Reitsma
As a caregiver, I think that it's, yeah, understanding that, well, oftentimes, as a caregiver, for me, I felt like a lot of times there was kind of like a hurricane going and I was trying hard not to get swept up into it.
Um, so being able to just kind of ground yourself and think like, okay, what do I need to do to, to like to help this person and then also what do I need to do to take care of myself? Also just having positive self-talk like I think through the process because you don't know like it's like the past few years has been up and down right? There's like oh you're getting better not good and it's like up and down, but also knowing that like, we don't know what the outcome is going to be. So being able to, I think if you're a spiritual person, if like for me, for us, we're Christians. So being able to trust that like God has a plan and that he's, he takes care of us. He knows all of our struggles. But also being able to encourage yourself with positive self-talk. Like you can do this, right? Like you can. You know, you have the resources, you know where to get help, you listen to your body, if you need the rest, you deserve rest, right? I think just being able to reframe some of these things and have some positive self-talk versus like this is like horrible, right? This is the worst thing ever. But just accepting that like, yeah, this is horrible. I don't know what's gonna happen tomorrow, but I know that like, I have a lot of choices. I have like, there's a lot of things I can do. And then, so having that self-talk.
Helping yourself in that way, I think, is really good advice. And then secondly, knowing that if you, the sooner as a caregiver, if you're feeling like you need support, like if you feel like you need someone to like come and help out, right? Like, or if you need someone to help do the driving or…
Whatever. I think the sooner you get that support, the sooner you'll be able to, the easier it will be to get through some of the rough times. So asking for help is not a weakness. It is actually a really smart thing to do. And it's going to help set you up for better success, I guess, in the long run.
Tim Reitsma
Mm-hmm. Yeah, I love that. And I think that's a great place to wrap up our conversation is ask for support, ground yourself, know that even though as a caregiver you might not feel appreciated, I appreciate you. And I don't even know you who are listening, but those who are living with something that's invisible, that's.
We appreciate you. I know I appreciate you, Tania. Uh, I know that over the years it's been challenging, especially when it's been invisible and you know, where I can't eat or I'm manic or I'm getting ready for surgery or all the appointments and things like that, um, sometimes it feels like it's a never ending cycle, um, even for myself, and I'm sure it has been for you, so.
I appreciate you. And as caregivers, if you're listening, we appreciate you. If you live with an invisible condition, you have a caregiver and you haven't given them a hug or high five or something, do it now. Right after this episode, give them a call, shoot them a text, invite them over. Just say thank you, say thank you. I love that. And so with that, Tania, I...
Tania Reitsma
say thank you, you know, yeah.
Tim Reitsma
I've enjoyed this conversation as mutual caregivers and I'm sure we'll record again soon. And for those who are listening, I really appreciate it. If you do like this episode, please share it out. What helps me and invisiblecondition.com is if you head over to Instagram and follow us, follow us there, follow us on LinkedIn, subscribe to the newsletter on the website and rate this podcast, anything you can do so we can continue to share stories of impact that will kill the stigma that surrounds invisible condition. So with that, I hope everyone Oh sure
Tania Reitsma
Oh, and one more thing actually, I think a nice ask is that I will be helping with writing some articles around the caregiver experience and also some practical things as well. So if people want to write in about maybe some topics they want to see about the whole caregiver journey or experience, or if someone's a caregiver and really wants to share their perspective.
I'd love to hear that.
Tim Reitsma
Yeah, love that. That's a great ask. I should have put that into my scripts, right? So with that, everyone, I hope you have an amazing day and make sure you hug your caregiver today.
Tania Reitsma
Hug. Virtual hug.
