Spooning with Spoonies Eps 13. Closing the Communiation Gap with LCSW Krsitine Hoestermann
7:27PM Apr 9, +0000
Speakers:
Noa
Kristine
Keywords:
felt
relationship
carrie
people
spooning
communication
knew
genuinely
date
chronic illness
kristine
rare
honestly
episode
sick
podcast
wedge
life
activity
instance
Intro (positive pop music in the background): Welcome to another episode of spooning with. I'm your host and fellow Spoonie Noa Porten and I'm just a girl trying to figure out how to date with chronic illness. I started this podcast to ask other single and coupled up spoonies as well as relationship experts about their journeys and feelings navigating, dating and relationships with chronic illness and disability. So come on this journey with me as we explore the essence of life, relationships. Seeking connection is as human as it gets, and we all deserve to feel human.
Today I chat all about communication between partners with Kristine Hoestermann, a licensed clinical social worker and the CEO of Rare a clothing brand raising awareness for rare diseases. Kristine, who lives with EDS, Pots, and Autoimmune Small Fiber Neuropathy secondary to unknown connective tissue disease, shares how she and her wife found ways to bridge the communication gap learning to make time and space for reflection before response. Plus, stay tuned for a very special furry a guest appearance in this episode. So get comfy and let's get spooning!
Thank you so much for coming on Spooning with Spoonies
Oh, I've been like kind of waiting for it. I'm, I feel like special. I love you guys.
Oh my gosh, we love you. And by we I mean me.
Okay, I do that all the time. I say we because I'm like, I know it's, like everyone who's like in a small business, right? Just so many different things. But yeah, we always sounds better.
Exactly. It's like, let me go have a conversation with my boss and my team.
Staff meetings by yourself are real.
That's true. That's true. Um, so yeah, I would love to know a little bit about like you and your relationship.
That is a loaded one. And you know, just how transparent real and raw are we getting on this one, because...
As much as you feel comfortable, we go deep in this podcast.
Just triple checking, you know. And so actually, historically, dated men my entire life. Like, never thought about exploring or anything of that nature. Not because I was against it just because it like, I wasn't attracted and moved on to DC. And I met like, legitimately my best friend. I was like, we were just like Yang and Yang. And for five, five years, I think we were just legitimately best friends. And I can't tell you what it changed why it changed. It did kind of coincide with my illness. So that was a little weird. But it was like a bunch of moments. And all of a sudden, I was just like, Oh my gosh, like I kind of no longer care about, like social norms are anything. I don't know why this is happening. But I think I'm in love with her, you know, and, and it was mutual. And so, you know, we started dating from there, it was extremely hard to come out of the closet, I was coming out of the closet. And I mean, gosh, I didn't even notice Spoonie was at that point, um, cuz i was i was just, you know, a knee...like, my knee was bothering me. And I was running marathons. And, you know, like I said, I was, I was coming out. And so there was a lot going on for me in the beginning of our relationship.
But I still had this sense of just like I was, I knew I was doing the right thing. Like, I knew that this was super hard, and I don't want to do it ever again. But I knew that I was like, I never felt like I needed to stop or it wasn't the right decision.
Yeah, yeah, like one of those things where it's like, it's hard, but like not doing it would almost be like harder.
Yes, exactly. And like I said, I'm someone who's very type A, and I, like follow the rules. Like whether that be social rules that are unsaid or like, you know, like the law like, I'm just like, a typical goody two shoes. I don't try to be that way. It's just like, I cry. Like when someone like, like, reprimands me at work like or like says any, like, not even reprimand just be like, you know, you could do better. I'm like sobbing so like. So this was really big for me. This was like, a complete, like, you know, throwing I think in my vows I wrote, you know, like, I threw out the rulebook. And I genuinely meant it.
Yeah, I was gonna say when I when I said that comment about it being harder not to I was gonna say can you tell that I'm reading Untamed right now by Glennon Doyle?
Yes. Great book.
Yes. Um, so yeah, you said that it was it was really hard to come out and you were kind of like navigating your health at the same time, what was that like? Kind of like navigating that intersection of identities almost at the same time?
So it was really difficult because I got a lot of like, well you're sick or right, what is when you're when you're first getting sick? I don't know, for me, there was a lot of mental health blaming, you know? And so, for instance, you know, I was being told that, you know, like, because I made this decision, you know, even to the point where it was said, like, you're depressed because you're gay. And like, I knew it wasn't genuinely true, right. But this is just part of everybody's process of and like, so there was really no onus on me being sick. And it's actually something that really affected me and Carrie, because, because no one else was really doing it. And she knew, that wasn't the reason I was whatever, she kind of started to think that I was pulling away from her and I didn't want to do the, like fun things that we would do in the city anymore. I didn't want to be seen with her, you know, and, and for me, I, how I internalized that really was basically like, the two people in my life who I felt should have known. I was sick and known something was so wrong was like, my mom and Carrie, and neither one of them, like, caught it. And I carried that for a really long time.
Yeah
I felt like they knew me the best and like they, and like, so I was getting almost I felt like blamed. Or like I could be doing something different or better to be stopping this from happening. And so I just felt like the two people who could have pulled it, like called it out and be like, no, like, this is not you. We know you in your inner core like,
yeah.
You know. And so like, in the beginning, I was I was so hurt, and I couldn't process that at the time, right? Like, I didn't think like in that moment. I'm so hurt, right? I'm just like managing everything, like juggling different balls trying to meet her everyone's emotions about what's going on with me are okay.
Yeah. How did you like work through that? And did you get to a place where you were like, wait, I need to figure out like, am I okay, first, you know?
I would say so this went on for probably a solid year, like straight 300. And when I tell you 365 days of it, I'm not even exaggerating, check with my mom, you can even has a Facebook post about it or anything. But so around our wedding, I got super, super sick. And this was October of 2017, to the point where we no one knew if I was going to make it down the aisle. And so, you know, no one knew was wrong with me, the drill that we all know, and I'm so thankful my mother in law is a doctor. And so, you know, she was able to work with my doctors, and they prescribed me, you know, 160 milligrams of prednisone to get me like down the aisle, which came with consequences friends, because my dress was not set for 160 milligrams of prednisone. And so, you know, there was definitely that breakdown moment. And I mean, to this day, I say like that we will have to redo our wedding pictures, because there's just I mean, and the day was amazing. Like, it was so amazing, but you know that idea of like getting your wedding dress like ruined, completely ruined.
Yeah, um, yeah, I think there's so much that comes with like...Is that your dog?
Oh, sorry. Yeah, I'm sorry, everyone. She howels
She wanted to be on the podcast too! She like has some thoughts has some things to add?
Well, she came into our life, right around that time as well. Mind you, just anyone, anyone who's a dog lover, but she's a very special part of our family. So I'm, I'm happy she got a little sneak peek.
She was like, Hello Mom. Like you forgot about me like in the story.
Um, so you mentioned that you are a licensed clinical social worker. So do you see a lot of chronically ill clients?
So um, I would say that I do not actively seek them out if that makes sense. Like it's in my profile, and it's in my psychology now it says that like that, like that's a population I like to work with. But I would say honestly, anxiety is probably one of the biggest things that I deal with. And I think that's so relatable to the chronic illness community. The anxiety that builds up there's such a mental health component to it. And that's, in a lot of ways I genuinely believed I was like, legitimately biomedical science I was not and then like I quickly changed my major the last semester of senior year to go to like NYU Social Work school cuz I like found a teacher I liked but I believe now like from the bottom of my heart, right? That it was because I needed these skills to be to handle what was coming my way.
Yeah, so when you do see like clients who are dealing with chronic illness or even, you know, mental illness, if you have some that come like with some relationship stuff, they they want to talk about what is what's the most like common challenge that people come in with when it comes to relationships?
In my opinion, I think a lot of times it comes down to communication. Communication at the root of many, many problems is communication. You know, a lot of times people will come in and be like, oh, like our sex life, our intimacy. intimacy starts with the communication, you know, it's so it's like, really the gateway. And I genuinely believe that it's what goes out the window, when you go from the land of the living, as I call it to the lead of the sick, is that there becomes a communication gap. And not just in like romantic relationships in so many relationships. At the two sided and so that I would say communication, communication.
Can you give an example of what you mean by like, a communication gap?
Yeah, so I can use me and Carrie, as an example, when, as I got started into, like, you know, the new normal, and we were doing things I have, I carried a ton of guilt, right? But it's not like I went around talking about like, Hey, I'm carrying a ton of guilt, like, what I was doing was, like, you know, people were saying, like, I miss the old you. And Carrie specifically would say, very specific things that we would do, like, I miss when you cooked, I miss when you did this. And that, for me, was internalized with a ton of guilt. And the thing was, it's not how she meant it, but it started to cause a wedge between us, because what would happen would be, she would say, and I would have an a reaction of the dress, either like crying or like, I can't help it, I'm sorry, like I do, I'm gonna cook, I'll cook like, you know, and then that would set her into a place of, you know, being like, this is hard for me, like, I'm sorry, I'm just trying to, you know what I mean? So it was this, this one little silly kind of way of communicating, put that wedge in there. And from that wedge, it kind of kept growing and growing and growing. And, you know, I started shutting down and not saying how I felt. And then she did the same, right, like, she started internalizing anything that she missed, like, for instance, like, when she would see people going on vacation pre COVID, or something, you know, like, and if she had feelings about it, she would internalize it, as opposed to like, say it to me. And so it that's like an example of what I think starts to happen is that we sometimes can be very responsive, as opposed to reflective and like active listening. And what happens is basically, in my opinion, then that one that a wedge just keeps growing.
Yeah, yeah, I like that you said responsive versus reflective. So how did you, you guys work through that? I know that when we chatted before you talked about you guys created communication workbook, which I think is so cool. Can you share a little about that?
Absolutely. I mean, it was never supposed to be anything it was. So Carrie and I are both social workers, which cannot work out so good sometimes. But in this instance, I think we were so desperate for a way back to each other, that we were just like, you know what, like, hold on, like, we're like, let's just like go back to the books basically, like, like, and so it started with, we would had to chart papers on either side of our nightstands, like huge ones from school kind of thing, and markers. And like, I was just like, you know what I would like to know, the top five things that you truly miss from our relationship. And we're not going to talk about them until next Saturday. And so that's like, that's what we did. And instead of writing like the quick facts, like, I know, for me, like I spend time every morning thinking about truly what I missed, as opposed to like, like cooking or whatever, again, it gave a deeper reflection for it. And from there, we just kind of kept building on different activities that were like, honestly just helpful for us because we were realized that oh my gosh, we have been through a trauma and our life, both of our lives are now different. We're both different people. And it's not a matter of love or anything like that. It was a matter of us finding a way to communicate what we were trying to say, which you know, for instance, those comments about being cooked she wanted to know that I missed it too, that like there was something but I didn't internalize it that way. And, and so, you know, by seeing it in like that chart, right like and deciding that we were going to dedicate an hour to talk about that. Just the two of us and like, seriously talk about what is written on these papers. Um, it just started a really cool journey for us.
Yeah, so, um, when you like wrote down, like the things that you like, miss, let's say, and then you talked about it. What, what did you do with that? Was there a way that you were like, okay, well, like, this is no longer something that I can do. But we can do this instead, was there kind of a pivot like that?
So one of the next activities we did was like, Carrie loves puzzles, right? So like, I got a puzzle, and I broke it all, like a blank puzzle, and I broke it all up. And we then were like, okay, we don't know what this picture is, like, because it's a blank puzzle. But like, we know that we want to put it together. And so after that, we took pieces of what we both thought we could give, and what we both wanted. And we made this puzzle that's like a new picture. And like, that was really powerful for us to do, because there were things that like, when we were doing that activity, it was like, I was like, really, we have to take that like, or, you know, like, I really like that would make me sad if we like, Can we try not to like, can we figure out another way to put that or, and you know, and so it opened up a different dialogue. Which sounds so silly, right? Like puzzles were adults, but it was super helpful. And a lot of times too, I think, when we get out of our heads and like, start like letting that flow. It feels better than we think.
Yeah, I liked I think it's like metaphorical, but it's also like you said something creative to kind of you can do together to like, get out of your head.
Like a date night! It sounds so stupid.
Yeah, well, that was gonna be my next question. Like, what does date night look for you, like look like for you guys now.
So I mean, I feel like we used to have like, date day, we lived in the city, we were just running marathons, we were really living our best life. Like when I tell you, from the time I came out in May, until August was like, the time of my life. I was like, 27 living, you know what I mean? Like the best shape, I like had just like, you know, broke all the rules bla bla bla. And so we tried to get back there. You know, it looks different. You know, like I said, we used to go every Sunday to like the open market, because we could walk you know, so we would have like date days, but now it's like, we have date, nights. And I what we do now is I because we can't like chug anymore and things like that. Part of that is because we're old. And part of that is you know, other things. So we, on Wednesdays we do like wind down. And this is like part of the like week, like we put it in there like what we want our week to look like for instance, like Mondays and it's just a loose outline, right? Because what happens is, is like, I got really invested in rare and building something that gave me purpose, right. And that meant like, I kind of lost ties in my social work for a little bit. And that was also a strong tie for us, you know, and so, um, you know, assigning different things. So we knew on Wednesdays, it was a middle of the week, we're gonna do wine down, we basically literally would have happy hour in our kitchen, sit on the table countertop. And like...
Rebels!
Yeah, like and just and like talk about like, all the stuff that like seemed mundane in the week, like, you know, like your coworkers, you finding things or you're annoyed about something. But Mike, you kind of let it go. Because like, you know, you guys are in passing. And we would just literally just like let it out there on Wednesdays and then on Thursdays. So like, I would have to pick the first and the second Thursday, I would have to set up the date. And that date could literally be anything I wanted, or anything she wanted. So like sometimes it would be extravagant. Right? It would like Bianca Del Rio would be in town and I'd like surprise her with tickets. And then other times I'd be like, your surprise is we are filling Rare orders tonight. Congratulations, welcome. Um, and you know, vice versa. So it wasn't always extravagant things, but it was a set, not even time, but a set day that we were going to do it and by splitting it up. It both gave us like power to surprise and you know, be romantic, but also power to like, invite that person into the things that I like to do.
Yeah, no, no, I love that. And I like that, like the intentionalness of that. Why does that remind me of like the bachelor where like he plans like the or whoever's the lead plans, the first dates and then like the hometown and she's like, let me show you what I'm into.
Honestly, I'm not gonna lie. We've watched every bachelor season and so like, there may be some bachelor vibes that like subconsciously got into this activity. But like I said, it's actually one of my favorite things I and I mean, gosh, sometimes it's as simple as walking in the park. It doesn't have to be big and extravagant. But it is like, knowing that it's like your responsibility to your relationship. And I've been flared up on my weeks, I'm not gonna lie, you know? And then I love true crime. So I'll be like, will you listen to True Crime with me? And like, you know, and just having that time where it's like, I'm there were there were present has been very, very beneficial for us. And like, we try not to just move the day like, you know, it's like one of the non negotiables.
Yeah, so you kind of mentioned it just now. But how do you work around pain in terms of like, still wanting to have those date nights or connect or things like that.
That's been honestly, probably one of the hardest parts, was learning how to communicate effectively.
Like, for instance, Carrie loves going to the bar. And I used to love it right now. It's like, any amount of people pretty much makes me dizzy. And at one point, we had to stop like I was, we were fighting all the time, because I felt like I was pushing myself to go, I would get there. And she, I felt like wasn't an all in tune to the fact that like, you know, we would say for three drinks, and I was done. And, but she was having such a good time. And I think that goes back to what you were saying about like your partner, knowing it wasn't fair of me to have to be like, I wanted basically her to say, Oh, my gosh, like, you're not you don't, you're not okay, let's go home so that I didn't have to own the fact that she might be disappointed and she's allowed to be disappointed, right? That's my maybe that was me being selfish with my feelings, right? And I think, once I really worked through that, and realize that you know what, like, she's allowed to be disappointed. That doesn't mean she doesn't want to go home with you, doesn't mean she isn't gonna stand by you. It has nothing to do with you. It's a...you didn't do this. And so therefore, you having to go home, she's happy she got to go out with you give her a second to be upset that it's over.
Yeah, I like that. And I think, I think that's mature of you to say to like that. I think that's hard to, like, see somebody else be disappointed because I feel like my mind in some of those situations with like, family and friends automatically goes to like, Oh, this is my fault. Like, I'm a burden, blah, blah, blah. But I think like, like you said, like, yeah, that's just like, that's her and her feelings. And that has nothing to do with me. It's not my fault. You know, it's just the situation.
Exactly. And it was it was super hard. Like when I tell you it caused so many fights. Because I did I wanted to get I wanted to the easy way out. I wanted her to read my mind, which wasn't fair to know that by my face, I wanted to go home so that I wouldn't have to say, I want to go home.
Right. Right. So we've talked a lot about like, the challenges and stuff, I would love to hear what has been the best part of being married?
Gosh, I don't know how I honestly got so lucky when I tell you like I know everyone says that. But when I tell you, like I don't know, like she is the most amazing caregiver. Like she's so selfless. And I think for me what the most amazing part about all this has been how she's embraced Rare, like, most people would not be okay, with the amount of hours I spend, you know, late nights trying to, you know, build this up to give me purpose, and she's there every step of the way. And so I think so the security that I never even knew was possible. Like, I never didn't feel secure in some relationships, you think you're secure but knowing truly that not like this is your person and they're not ever going to go anywhere is a whole new level that she has kind of introduced me to and so I'd say it was there before the marriage, but it's definitely definitely solidified with it.
Yeah, I love that. Um, so the last question I ask everybody is what advice would you give to other chronically ill people who, let's say are in relationships, or married?
Communicate.
And it sounds so simple, but take the time your words have meaning. And sometimes the meaning that you've assigned a word or a phrase is different than your partner. And and so really just it sounds silly, but like, What does love mean to you? What does this mean to you, you know, like, and just really breaking down when there's when there's like tension or something that isn't like, feeling right, taking the time to just be super reflective in what you're feeling and then respond. It's like that moment of silence is so much better than any words you can throw out there that are you know, reactive and, and hurtful.
Yeah. Well, I hope you guys turn that little like, workbook thing that you guys created into something that other people can use too because that would be really cool.
It actually is digitally available if you're a Patreon member, it's part of the archives in there. When we did this, I like the everything about Rare so young that like there was nobody that else who needed it, you know, and so it's just kind of sit there. And so it is in the works for 2021. To put it on Amazon, I guess everyone is doing um, and kind of get it out there. But you can get it digitally. I think it's in like the $5 like Patreon thing. And if you're listening this podcast, and they'd like to reach out to me, I'd be more than happy to send it to them. For free.
Amazing, yes, we will link all of that in the description so people can find that Patreon and everything. And definitely hit me up when and if you put that on Amazon, because I would love to support that.
Thank you so much for sharing your story. And yeah, being open. I really appreciate it.
No, thank you. And thank you for having these difficult conversations.
I love the Spooning with Spoonies, it's so good.
Oh my gosh. Thank you. Yeah, I love getting into I love getting into all of it. And I think this is just what makes us human. So yeah, so thank you for spooning with us.
Outro (positive pop music in the background): Thank you so much for listening. If you enjoyed this episode, let me know by leaving a rating or review below and send this episode to your Spoonie group chat your friends, your family, maybe your partner. Hope to see you next time!