Podcast: How to navigate romantic relationships and CF

Transcript

Voiceover: Welcome to the CFStrong Podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management, but please remember, this is not medical advice and you should always follow the advice of your clinic team regarding your health.

Brad: G’day everyone and welcome to this incredibly exciting new season of the CF Strong Podcast. I’m your host and fellow CF patient Bradley Drybar. And as a 20-something-year-old living with cystic fibrosis, I know that this decade of our life is not only challenging, but rather it comes with some big questions we ask of ourselves. I’ve taken the time to sit down with six guests who like me, are all in their twenties living with cystic fibrosis as they share their honest and unique perspectives on 10 big questions across 10 separate episodes. I’ll ask one question of all six of our guests in this particular order. You can expect to hear answers from Adam, Blake, Caitlin, Ellie, Sam, and Taylor. In this fifth episode of our series, we’ll hear from each of our six guests as they answer. When you’ve met someone special, be it a boyfriend, girlfriend, a partner of any kind, how do you explain your CF and has that been a challenging conversation to have? Let’s hear their honest thoughts.

Adam: Yeah, I think in the beginning it was, it was really difficult. I didn’t let anyone in. I didn’t even bother seeing anyone or dating anyone because I just thought I was too much of a burden, uh, for anyone. I always thought I was gonna be like the patient and the person that I was with was gonna be my carer. Like, and I mean, it’s fair, it’s, it’s a fair thing that I, that I thought that, ’cause I’ve been quite sick my whole life, but now that I’m, I’m healthier, um, it comes a little bit easier to explain that to someone, or I feel a lot more comfortable because I am healthier. And, um, not to say that when I was really sick that I couldn’t explain that to someone. Um, I just think I had a lot of anxieties around relationships because of that. Now the anxieties have, have softened a little bit and explaining CF to people has come a lot easier. But that has also coincided with the fact that I’ve been a lot more open about my CF to the public and writing about it and sharing my experiences with people. Um, so I think a big part of it is just comfortability and letting people know, like no matter how sick, I, I think if I knew what I knew now and I was just as sick as I was before, um, I think I wouldn’t really have much of an issue explaining it to a partner. But it also, it, it should also be said that it’s important to know what your idea for a relationship is before you start looking for one, two. And that’s something that’s something really important to figure out too, because that, that’ll give you all the light, that’ll give you everything you need to know when approaching it.

Blake: Uh, yeah, well, my, just in my experience and yeah, me and my girlfriend have been together for pretty much a, you know, coming onto a year now, and she, I can’t even remember what the conversation with her really was. I, I think the way I’ve just dealt with it, sort of the same way I deal with explaining it to my mates, you know, if if they’ve got questions, I’m happy to answer it. Um, and I, you know, again, goes back to their attitude with it. You know, I think it’s good to find someone who, you know, won’t be very judgmental or, you know, they’ll be curious, but not in a negative way or anything like that. And my girlfriend’s been really, really good with that. I think the way I explained it to her was, you know, I, I was just taking some medications at a date we’re on very early on in the relationship, and then she just asked, I explained it and then we sort of left it at that. It wasn’t really a massive thing that we’ve ever talked about. Um, and yeah, she’s been really supportive. So, um, yeah, if you can find someone like that, um, yeah, that’s always good.

Caitlin: I think, um, in the past, I think meeting people has been, um, a little bit difficult, more so I’m not ashamed of having CF or get worried about telling people about it because that’s a part of me that’s on, like, it’s who I am. I think it’s more from their point of view trying to understand it and, um, kind of adapting to that. But I am very blessed. My current partner is amazing. He hadn’t even heard, oh, he had heard about CF but wouldn’t, couldn’t tell you what it was. And he’s just taken it all on the chin. He visits me in hospital, he’s learning all my meds. Like he’s just been an absolute angel through everything. And especially in the last three years we’ve been together, that’s when I feel like my CF has deteriorated more. So, um, he’s been with me for some of the hardest and I guess darkest times, and he’s just been amazing through it. So it’s not impossible to find someone to understand and to work through it. And yeah, like it’s not necessarily a bad thing.

Ellie: Um, I mean it definitely, I would say comes up straight away, but more than surface level, I think the cough gives it away. I think that, oh, you must be sick. Like, not necessarily even necessarily like with partners or anything, but just meeting, you know, new work colleagues and everything. Um, that kind of is definitely a common question. Um, and having to kind of go, no, I’m, you know, it depends who it’s, if it’s like someone I’m gonna see on a regular basis, you know, kind of goes from, oh, you know, it’s fine. I’m not sick to, no actually, like, I have to CF. And I guess, I guess when I explain it, I don’t want to go into like too much detail straight away because obviously there’s a lot to it. Um, I definitely feel more comfortable answering questions rather than kind of divulging myself. So when people, uh, are interested in learning, um, and understanding it better, that’s really helpful. But I, I do try kind of just really explain it more in simple terms that it’s a genetic condition that affects my lungs, that I don’t have the full lung capacity. I guess like, like most people affects my digestive system, but it’s, it’s very surface level. And that’s kind of the extent, you know, early on that I go to. Um, I’ve had, I’ve had partners that come to clinic with me. So that was something that I guess was nice to see, you know, the interest and, and to learn about it. Um, but I’m not necessarily had too much like push further than that to really understand it, which I guess is, is difficult. Like I would like to, you know, explain it and get people to kind of understand it better. But I also find it difficult to understand it because, um, explain it, I guess because, you know, like I was mentioning before, kind of having, you know, almost pretending like it’s not there, I’ve not necessarily looked into how to actually explain it to someone else ’cause I’ve probably not asked enough for someone to explain it to me. Like, I almost only know the basics. Like, I know what I have to do and I know how to take care of myself, and I guess the repercussions of that, like I’m, I’m not gonna be here as long or all those things, but in terms of like really specific detail, um, yeah, only recently really wanted to understand beyond the simple like surface level information. So that’s probably been a challenge because I’ve maybe not even had the answers about, you know, something that I have, um, to explain it to someone. So moving forward, that’s also a challenge for me because I guess to come into terms and making it like, um, to come into terms with what that means actually, like really learning more about it, which sounds silly, I guess probably for someone who has it to, you know, not know the full scope. But I feel like it’s more I go to clinic and I get my results and I’m like, okay, yeah, yeah, cool. Like I’ll do my, I’ll do my physio and I’ll go for a run. And that’s kind of almost the extent that I need to know.

Sam: Yeah, it’s a tough one. Um, I’ve talked about it on a podcast before, uh, I really struggled telling people about it. Um, I’ve got some really, really close friends, like my best mates in the entire world, they all know about it. But God, that, that took a long time for me to tell them as well. It wasn’t an instant thing. Um, when it comes to partners, I’ve had some beautiful relationships and, uh, I guess my way of doing it is the wrong way to do it. So I like to talk about it because it’s, um, I did not recommend anyone doing it this way. I, uh, for some reason when I was younger, I thought I could just get through a relationship without telling them anything. And, um, that is obviously the wrong thing to do. And that obviously causes discourse in trust and relationships. And again, over time it will break down and won’t go anywhere. So I’ve learned that the hard way a few times, uh, most recent one being a relationship that I had a few months into it and then I got sick, I had to go to the hospital, and instead of telling them that, I kind of just broke the relationship off, hoping that it would kind of just make the problems go away. But, uh, yeah, I can promise the problems did not go away. So after that, I had to learn how to be open and honest from the very get go with people that I, you know, wanna be with and wanna trust and wanna be, I guess, happy with. So, yeah, it’s a, it’s a hard process. I still haven’t mastered it, but I am working on it and we are getting there.

Brad: It sounds like for me, Sam, it’s, um, it’s a challenge to be radically honest about something that is so heavy. Yeah. if I can indulge a little bit further and tell me if, um, you’re not comfortable answering this, but no, no, yeah. What do you think it is that makes it a hard conversation to have for you personally?

Sam: Um, so this has taken me a long time to work out, and I think the main thing was, was just how unhappy I was in myself and how I didn’t accept it personally. So if I don’t accept it personally, how can I expect someone else accept it and accept me for what I am and who I am? Um, so learning how to be okay with who I am and learning how to be, I guess, stronger as a person with CF and seeing the benefits as I talked about earlier, about the benefits of how mentally stronger it can make me and how it can push me to do great things. So learning to be okay with myself was the first step into letting other people into my life. So yeah, that’s the lesson I’ve been learning over the past few years.

Tayla: Mm, relationships with CF, I’m not gonna lie, I haven’t had any success. Um, you’ll tell them that you have CF and you either get ghosted, um, or it’s kind of like the pity, like, oh, I could wish, I wish I could make you feel better. I’m always like, oh, yuck, Like, um, I dunno if it’s just me personally having a nick about that, but like, yeah, it’s, I don’t know, I think CF’s taught me to be happy with myself, um, and kind of just whatever happens, happens. If it doesn’t happen sick, if it does cool like, it’s not, I don’t know. I think people rightfully so are frightened from CF because it’s, it’s, that’s a lot of baggage. Um, I mean, you don’t think about it when you have CF. You’re like, eh, I have CF, your family, go, yeah, you know, it’s no biggie. We deal with it every day, but like as soon as someone who maybe you are talking to, who you are friends with and it’s gone a little bit further, maybe they go, oh yeah, cool. They see you a little bit. And they’re like, yeah, no biggie. All of a sudden they see all the other stuff and they’re like, oh. And you’re like, uh oh. But I think, yeah, although I haven’t had like, someone be chilled with it yet. Um, I think it’s just, you are not gonna find that overnight. You’ve got until the right people come along. It’s kind of like your friendships. Like if they’re cool with it, they’re your right people. Um, they get it. They’re the right people. It just happens when you least expect it. So I think, yeah, I don’t know. I’m not too big on it though. I’m kind of like, oh, well.

Brad: Thank you so much for listening to this episode of our series. We thank you for taking the time to sit down and hear the value that each of our six guests provides, and we wanna thank them for taking the time to be a part of the series too. We hope that this has not only been informative, um, but refreshing to hear that there are many different perspectives to each of these questions and challenges we face as CF patients. Once again, I’m your host Bradley Dryburgh. Thank you so much for tuning in to the CF Strong podcast.

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