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This podcast is raw, honest and reflective of the challenges people living with CF have to go through when disclosing their illness to loved ones and acquaintances.  Sam, 22, is passionate about sharing his journey to help those who also struggle with disclosing CF, to become more confident with accepting themselves as they are. He talks openly about how he finds it difficult raising his illness with friends and intimate partners, and how he’s coming to terms with who he is.

After one particular health scare and his parent’s ongoing support, Sam has realised it is more important to embrace himself as he is as opposed to ignoring his illness and hiding it from loved ones. This shift in thinking was triggered by an acute health episode that saw him rushed to paramedics at a Music Festival. Emotionally, he hit rock bottom when he was found in a hospital tent by his friends who could not understand why his health declined so quickly. Since then, Sam has made a decision to accept his disease and bring everyone into his life with full disclosure.

Although still young, Sam is wise and insightful. He strongly believes that those struggling with disclosing their illness need to be patient with themselves, OK with themselves and appreciate the time this takes.

Read Sam’s transcript below:

Deidre: Hi everyone and welcome to the CFStrong Podcast. My name is Deidre Gorrie and I’m the Programs and Support Services Manager for Cystic Fibrosis Community Care in New South Wales. I am in the incredibly fortunate position of being able to chat with some of the most amazing adults living with Cystic Fibrosis from around Australia for the CFStrong Podcast Series. The CFStrong Podcast Series covers a broad range of topics including the challenges and successes of those living with cystic fibrosis, where you hear real firsthand experiences and stories.

Guests and speakers on the CF strong Podcast Series may share their personal views about treatment and health management. But please remember that this is not medical advice, and you should always follow the advice of your clinic team regarding your health. If this episode raises any questions, please contact your local state based CF organization. We hope you enjoy today’s discussion.

 

Deidre:  Hi, everyone. My name is Deidre and I’d really love to welcome our first CFStrong Podcast guest speaker today. And his name is Sam. Sam, I’m going to hand it over to you so you can do a little introduction and tell us a little bit about yourself.

Sam: Sure. Thanks Deidre. Yeah, my name is Sam Lefoe. I’m currently 22 years old, and living in Wollongong, doing University there and working in a bar. But originally, I’m from Albury, which is on the border of Victoria and New South Wales, so country boy at heart, but living up in the coast now.

Deidre: Fantastic. Welcome Sam. Thank you so much for your time today and helping us tackle what is for most an interesting and can be a difficult topic. And our topic today is around disclosing CF and that can be in friendships, relationships, workplaces, it’s often something that can be a little bit difficult to bring up and mention and our lived experience of what they can be like. So we thought we’d get you in Sam and just have a chat to you on what disclosing CF has been like. So we’ll start with just the general notion of disclosing CF. Is there anything that stopped you from disclosing that you have CF in the past?

Sam: Yeah, so these topics hits quite close to home for me. It’s always been a big issue of mine opening up about my personal life and my personal issues with CF. Growing up, I spent most of my childhood and young teenage years hiding the fact that I had it from most of my friends. Of course, my family all knew and my extended family were very, very open with it all. But to me, it’s always just been a thing that I don’t know; I’ve always struggled with accepting it myself. And I think that’s always been an issue with how I disclose it with other people. And it’s been a long journey to try and get on top of that, because it’s such an important part of accepting yourself and being okay with yourself to let other people into your life. So, yes, it’s definitely an issue for me.

Deidre: Yeah, it’s a big one. And it sounds like it’s all consuming in so many facets and aspects of your life. So what has motivated you or wanted you to disclose that you have CF to someone or whether it’s a mate or someone that you’re dating? What’s led you to that point and how have you tackled it in the past?

Sam: Yeah, it’s a quite a long story really, it’s been ongoing for the past, I want to say maybe four years, it’s started to really properly impact me. So probably after high school, is when I started to really try and open up to it in myself. I had a few high school relationships when I was going through it. And the biggest thing about those was the fact that I had CF and I honestly didn’t tell a really close partner of mine that I had it for a very long time. I didn’t tell her until it was too much for me, and ended up ending the relationship, which is probably a bit early. But yeah, unfortunately, that’s just the best way I could have dealt with it. And of course, it’s a bad way to live. And it causes a lot of pain for yourself and people in your life.

So after that, I realized that this is a problem I need to tackle and I began trying to open up to friends and even that took a very long time. And at that point in my life, I’d be very lucky. With CF I had quite a healthy childhood growing up and I’d only really had two major hospital incidents. That being so healthy helped mask the fact that I had this disease, so it made it easier for me to hide from the truth I guess. Even some of my best friends were quite shocked to find out about it when I was 18 which is honestly bizarre if you think about it because they’re some of the closest people in your life.

I think my mother was probably the biggest push because she knew how much it consumed me. And she was always my biggest supporter, and she really wanted me to have the best life possible and she knew that if I wanted to have the best life, I needed to be happy and honest with myself and honest with the people around me. Yeah, as I was saying, 18 is when all this started to really hit me.

But it was honestly, not until I hit rock bottom, which is about two years ago that it really all came into the picture in a really bad way. Because of course, I had not told many people about my condition and I’d always been very hesitant to accept it myself. And then, one day at a music festival, for my really close friends, I ended up getting really, really unwell due to heat, the heat really got to me. And rock bottom was when I was in a hospital tent, all by myself unable to move. And no one knew where I was, because no one knew what was going on with me. And I ended up being taken hospital and spent New Year’s Eve by myself in hospital and no one knew where I was and what was wrong.

Deidre: Oh, Sam.

Sam: Yeah, so that was rock bottom for me and that was about when I was maybe 20. And since then, I’ve made it my goal just to my life into a life where I accepted my disease, like the best of it, and bring all the people around me into it. But of course, it took us some time. I’m still working up to today. And the final, your kick in the gut was my most recent, really close relationship I had with someone I really care about. It took me a long time to open up to her about it. And I finally did, I thought, that’s it, I’ve done it, I’ve been open with her, we can move on with it, and we can work on it together. But unfortunately, it still haunted me a little bit, and ended up affecting the relationship down the line. And we ended it because I wasn’t quite sure how to be okay with it all. Have her in my life knowing about it and have me okay with who I am. So I’m still working on all these things. Yeah, it’s a work in progress. And all you can do is keep working on it.

Deidre: It is. There’s so many things that you’ve just said and I just automatically want to unpack them. This is necessarily the space for that Sam. I’ll bring it back to where you were in that tent and you’re on your own because your friends didn’t know that you had CF. I’m guessing that following that, you would have then had conversations with them just to say, “Hey, this is what happened to me at the festival.” And you would have explained a little bit about your CF to them following that event. Is that what happened?

Sam: Yes. So it wasn’t really the best way for them to find out. But they all knew that obviously, something wasn’t quite right. And my really close friends came to me and they were like, “What’s going on?” And they were there for me, they listened to me. And I just wish I told them earlier because they obviously cared.

Deidre: And it’s beautiful that they were there for you and they cared and they showed that after and they realize the severity of what was going on for you. And I guess that’s one of those stumbling blocks that disclosing CF can often have for people is that we often think worst case scenario, or we don’t necessarily want to bring people in to our narrative and what’s going on for us in terms of our daily treatments and things like that. And when we do share then, we can often be surprised by the reactions that we received from people and we may have a negative reaction, but we also may have some really positive lovely reactions, which it sounds like you’ve had by and large.

Sam: Yes, definitely. All the reactions have always been supportive, and caring. It’s honestly the biggest issue to get past is how you react to it personally, and it’s something that’s different for everyone you can talk to you about. When it comes to friends, it’s a completely different thing from when you have a relationship with somebody as well. It’s all very different emotions you feel.

Deidre: Yeah, absolutely.

Sam: The biggest thing in your way is definitely yourself when it comes to talking about these things.

Deidre: Yeah, I think you’ve just said it so succinctly. That’s a really apt way of describing it where it’s yourself where the blocker in terms of disclosing and what we do. And I’m sorry to hear that it didn’t necessarily play out as you’d hoped or wanted to in the recent relationship just in terms of disclosing your CF. And that’s interesting what you said just in terms of your CF, like you disclosed it to someone. You took that step and you did that and how it was received sounds like it was received well, and there was that space. But it’s just mirroring and pairing up your old lived experience and your admissions and treatment side of things with someone else and having the two run succinctly at the same time that that’s where it became a new space that you were trying to navigate that terrain.

Sam: Yeah, exactly. So as I was saying before, I’ve been quite lucky with my health. And so that’s always been made it easier for me to just keep going on with life without making a big fuss out of everything. But, yes, so there’s a big difference between disclosing to someone and then also being accepted with yourself, and in my past, really close relationships with friends and people I’m really close to have always been beautiful and they’ve always really accepted me, for me no matter what. But I think while growing up getting older with CF, it’s now really down to me to really just accept it completely on my own as well and just be okay with it. Which is a lot easier said than done as well.

Deidre: Yeah, it absolutely is. And I really liked that word acceptance, that sits really well in terms of that’s the space that you need to navigate and work out accepting yourself. That’s something that we’re always working on, but when you’re in a place that you feel you’ve got a good sense of what’s going on for you, then you can let people in potentially and show them what that looks like for you.

Sam: Yeah, definitely. And then even coming into the podcast today, to me, sharing my story, I hope other people can connect with it. And also for me to put it out there and take a step towards becoming more accepting of my own story as well by telling it to others.

Deidre: Yeah, which is huge, and we’re very grateful. So thank you.

Sam: Yeah, no worries. So you had the experience at the festival. Has there been something else that’s really prompted you to say, okay, now’s the time where I really need to take some more ownership and acceptance, as you said, acceptance around your CF and explaining that to others, and sharing it in the hope that this would help other people disclose CF and help them in their lived experience?

Sam: Yes. So I think some of the biggest moments for me were definitely during my high school years. I feel like not only is high school and teenage-hood really hard for everyone, having that extra baggage to carry around definitely makes things a little bit harder as well. It was just trying to navigate attempted a normal life with also looking after my health in the best way I could. And I think one of the other big punches in the guts I had in high school, in terms of trying to just improve my own health in how I lived my life, it was just how it affected my family because they’ve always been my biggest supporters.

But as any other high school kid, I definitely let myself go a little bit in regards to health, because I was so focused on the other aspects of life that were happening. And unfortunately, that was very hard for my family to see, because I’ve always been my biggest supporter. And then, when I wasn’t taking on the responsibility myself, it was really hard for them to see that. And it definitely caused some friction and some issues. And of course, I was a teenager; I didn’t listen to what my family had to say, I was out trying to live the best life I could. But when you when you grow up, you definitely look back on it and go “Wow, I wish I listened more, I wish I did some things different. But you have to learn some way.”

Deidre: Yeah, that’s experience. That’s how we get it, unfortunately. And you’re in a position now where you’re able to look back and reflect on it and go, “Okay,” what are the main learnings you’ve taken from that and how are you going to use that now?

Sam: Yeah, so those are some of the main learnings I’ve learned is really just if you get on top of your health, you look after your health but your health first. You can still live the best life you can and if you put your health first, it’s always a priority. And you can live the best life you can as long as you have always have in your mind that you need to be healthy as you can be, which is not the kind of thought you have when you’re a teenager though. Everyone says you’re six foot tall and bulletproof when you’re a teenager and everyone feels it.

Deidre: Yeah, you just want to do everything, keep up with everyone and especially mates and then to bring CF into it and to tell your friends, especially if you’re still at a point where you’re not necessarily accepting or understanding it, then how do you share that with people your age, if you’re still not okay with it?

Sam: Yeah, exactly. And again, I think that’s the main thing that’s really affected all my discussions with friends and family about my condition is the fact that I hadn’t quite accepted that myself. So when it comes to disclosing CF, the best thing you can do for it is take the time to really accept it in yourself if you haven’t already.

Deidre: Yeah, that’s really good advice Sam. So moving forward in terms of disclosing CF or friendships or relationships, what are you thinking would be some really good advice that we can help impart with some of our younger listeners?

Sam: Well, probably the best advice I can give is to be patient with yourself I guess. It’s never going to happen quickly and it’s never going to happen straight away. And you may feel a certain point in your life that you are accepting, and you’re ready to disclose and you tell someone close to you, but a few months down the line, you get that feeling that maybe you weren’t quite ready. And all I can say is that’s okay. This is not on anyone else’s time; this is on your time. You need to make the right steps. And get right with yourself before you can be happy with anyone else being right with you. And it takes a lot of time. But the thing is it takes effort as well. And you need to put the time in. So yeah, time and patience, but also put the work in as well and be open.

Deidre: Yeah, for yourself.

Sam: Yeah. And use those people around you that are always there like your family. I’ve never been closer with my family; they are the most my biggest supporters and they listen to everything I say. If I didn’t have them, I’d be a lot further behind where I am right now. So use your family definitely.

Deidre: Yeah. And if you don’t have really good family network, then its networks and community in sense of identifying one or two people I guess. Like if you’re if you’re concerned about disclosing, could you potentially start small, like start with someone that you feel may have a good response and then work your way out potentially?

Sam: Yeah, of course. Being open and disclosing isn’t necessarily throwing yourself a parade and giving it to the world.

Deidre: Or coming on a podcast.

Sam: It’s something as small as telling someone who’s a big part of your life that doesn’t know. And that one person can be the whole difference, the way they accept you, and the way they listened to you will just completely change the way you think about it really.

Deidre: Yeah, that’s great. What have been your worst reaction and your best reaction in terms of CF?

Sam: Worst reaction?

Deidre: We don’t want a worst reaction but –

Sam: Yeah, of course. Well, I think as I was saying before, that the worst reactions are always my own reactions. The way I feel about it, after I tell someone I might feel guilty, or I might feel ashamed. And they are always the worst reactions, and they aren’t feelings you should feel. It’s in no way your fault, but I feel like other people can understand where I’m coming from is that there is a feeling of guilt and shame that you’re bringing someone into your life full well knowing just all about your condition. And the big part about disclosing it with people, you can’t escape the feeling that you’re burdening them with your problems and issues. And so I personally don’t think I’ve had a terrible reaction from someone.

Deidre: Well, that’s really good.

Sam: Yeah, I just do know that the way I feel afterwards and react to it has not always been positive. And in regards to best reaction, one of my more recent ones, actually, one of my best friends at the moment, he’s also my roommate, we went and got to be one day just at the pub, and just had to just have a catch up. And he’s one of the closest people my life right now. And he’s always known there’s been something going on. And I just said it straightaway. I said it and the best reaction I got was, “Oh, how bad was the original Children’s Hospital in Melbourne?” Because he had also had been in admission there when he was younger due to his own personal things. And we just got to rob bond about our experiences at the very old Rundown Hospital in Melbourne.

Deidre: Rundown Hospital, I know that hospital, familiar with it.

Sam: Yeah. So we got to really have a good laugh about that. And that was really great.

Deidre: That was good. It sounds like it was a surprising response to have and I guess that’s the thing. You never know how someone’s going to react. But that’s a beautiful response to have.

Sam: Yeah, it was great definitely.

Deidre: Well, I think we’ve covered a few good points in terms of disclosing CF and what that looks like. And it sounds to me that it’s a work in progress in terms of your comfort level and what the situation is?

Sam: Yeah, exactly. When you talk about disclosing CF, I think everyone’s first thought is not your own personal thing, it’s about the world around you, but in reality, it’s about coming to terms of it yourself and being at that level of comfort and acceptance, to disclose other to people around you who mean a lot to you.

Deidre: There are two really beautiful things, there’s accepting of it yourself and then inviting others to join you and just share that experience and what it looks like. And as you said, it’s your day to day and your lived experience and you’re inviting people in, but that’s often quite hard to reconcile within yourself by the sounds of it.

Sam: Yes, definitely. And it’s also the same with everything else in life. Even if I didn’t have this disease when it comes to relationships, if I wasn’t happy and accepting of whom I am, then I can’t expect someone to do the same with me. And unfortunately, CF is a part of my normal life. And it’s not some terrible thing or terrible burden. It just definitely has its issues, but everyone else who has an experience is that we are still good people and great people, and we deserve people to be in our lives. So we need to be okay with ourselves and that’s just a huge step and it’s a hard step.

Deidre: It’s a massive step. But I’ve got a little quote in my head just saying, you know, if you can’t love yourself, how can you love someone else? That classic little number and it’s just about inviting people in. And if you have a really good sense of yourself, and you’ve got that confidence and you share that experience, you can gain a lot from the telling of your story and sharing with others because you’re being authentic, you’re being yourself. And it’s a really lovely place to be able to operate in, but it takes a bit to get to that space.

Sam: Yeah, it does. And as I was saying before, it’s no rush. You need to take your time to really be okay with yourself. And yeah, once you do that, I think it’s a forever thing as well, you can’t just switch it on and off. You’re always working with it. And when your CF goes up and down in terms of health, it will test it, it will definitely test it, I was tested with it because my CF was recently a little bit down and it definitely affected my relationships. Because I started taking these steps, I think I’m thinking towards the point where I’ll be better and better for it.

Deidre: That’s good. That’s really good to hear you saying. So when you were going to your recent admission, did you disclose that to people? Did they know where you’re going or that you were having a brief hiatus from [inaudible]?

Sam: Yes to my closest friends, I reached out to them and let them know, because I knew that they would want to know and they would want to know everything’s okay. So I told them all and it was really good. They all supported me, they all called me, and some even came to see me, which was very nice.

Deidre: Fantastic. Yeah.

Sam: But it definitely affected other parts of my life. In terms of relationships, I wasn’t quite ready to share that part of me with some people. Unfortunately, that’s just one of the steps.

Deidre: Yeah, as you said, you’ve got to be comfortable in and of yourself to be in a place where you disclose that to someone.

Sam: Yeah. Exactly, and it’s a hard step to take being open in that way. It’s harder than a good day where everything’s healthy, everything’s going really well. But then when things aren’t so well, that’s a whole new level and it’s a difficult one to get through.

Deidre: Yeah, absolutely. It really would be. So what steps are you going to take moving forward to keep chipping away at this feeling comfortable and in a place where you can disclose it, say with a new relationship? Would you disclose that early on in the relationship? How would that look for you?

Sam: I want to hope that I do disclose it early as in I’m quite open from it with the beginning. And I think the way I get there is continue to work on myself in regards to my health and set myself up to have the healthiest possible life in the future physically and mentally. Because if I do that, I put my CF into the spotlight and accept it and work on it and always be looking in the positive future, I guess in regards to it, I think that’s probably the best way to do it.

Deidre: Yeah, absolutely.

Sam: Because then I have nothing to hide. I’m open with it, people know who I am, they know that I’m constantly working on it and I know myself that I’m constantly working on it because if I let myself get unwell, that’s on me as well, if that makes sense.

Deidre: Yeah. It does make sense.

Sam: The step I want to take is just to really be the best version of myself I possibly can with this disease and just with life in general.

Deidre: Yeah. And I think everyone in general wants to, well, by and large, most people want to be the best version of themselves and mental health, physical health and then when you add CF to the mix, then it becomes the physical component, as well as mental. It amplifies and you’ve already got a really good understanding of your own physical and mental health and that’s something that you’re open about and working on and really proactive with. So I think that puts you in good stead in terms of being open to then including someone in this, but you’re central to all that and everything that’s going on.

Sam: Yeah, for sure. And one of the best parts about life is letting people in and having that connection with people. I definitely don’t want to deprive myself of that. And I feel like everyone with CF has definitely at some point in their life has felt maybe alone in some senses, because I feel like-

 Deidre: Isolated?

Sam: Yeah, isolated and alone because I know I definitely have in many occasions, and I don’t think that’s fair on us. Like, we shouldn’t have to put that on ourselves. It’s not fair. It’s very hard, but the best we can do is just being accepting of what we are and what we do and know that our disease has made us probably stronger. And it comes mentally made us very makes us very strong. And we all deserve to have people in our lives and it’s up to us to be open with that.

Deidre: Absolutely, and resilient. I’m hearing resilience is a huge thing as well as strong, incredibly strong and absolutely everyone deserves, especially people living with CF, you deserve those really solid friendships and relationships, yeah, absolutely. I couldn’t agree with you more. I’m just sitting here going, “Wow, Sam, it’s so good.”  So I think we’ve covered quite a few topics just around disclosing CF and just that overwhelming sense of acceptance, and that that really does lend itself to helping someone disclose that they have CF?

Sam: Yeah, definitely. I feel like I’ve talked to you.

Deidre: You’re always welcome too Sam. I think we could cover a few more topics just in terms of your travel and country, there are so many things we could do, and being a student and having CF there’s endless podcasts I predict. But I just really want to thank you for your time in terms of sharing your experience around disclosing CF and what it’s been like, and what led you to the point of wanting to be more open about it. And I guess I wish you all the very, very, very best moving forward in terms of that acceptance and disclosing and being open and letting people in. And if you have one final word to our lovely listeners, what would it be?

Sam: Final word.

Deidre: Just to put you on the spot Sam.

Sam: Final word, just look for connection, if that makes sense. Don’t be afraid of it. Go out in the world, and look for the right connections because that really makes it all worth it. And I’ve definitely struggled with looking for the right connections, but I feel like I’m starting to really find them. And it makes me feel so much more confident in myself and so much less alone in the battle with CF. And I’m just really grateful that I can finally start taking these steps and anyone who ever needs help or a connection, this website has been fantastic. CFStrong has been really fantastic for me as well to look at podcasts and stories and share stories as well. So yeah, I’m just happy to be taking the steps and I hope everyone else who is struggling with things like this can take the right steps as well.

Deidre: For real, fantastic. Thank you so much for joining me today Sam, it’s been an absolute treat chatting with you as always and you’ve done a fantastic shameless promotion for our lovely CFStrong website. I thank you kindly. And as Sam touched on, if anyone would like to share their experience and have a chat and likewise record a podcast most willing and able, we would love to hear from people. And I just want to say thanks again, Sam. It was really lovely having you to chat with today and just unpack a little bit about what disclosing CF looks like for people.

Sam: Thank you so much for having me and helping me with my steps to get to a better point. So thank you very much for that.

Deidre: It’s my absolute privilege Sam. Thank you so much, and no doubt I will talk to you again soon.

Sam: All right. Thank you. Talk to you soon.

Deidre: All right. Thanks Sam. Bye.

Male Speaker: Thanks for listening to this episode of the CFStrong podcast. Make sure you subscribe on Apple podcasts or your favorite podcast app, so you don’t miss the next episode. If you enjoyed this podcast, we’d really appreciate if you could leave us a review on Apple podcasts to help other people find it or share us with your friends. Also, we should take a moment to remind you the views expressed in CFStrong podcasts may not be reflective of cystic fibrosis community cares viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible by the National Disability Insurance Agency and was produced by CF community care and CF Western Australia. Thanks for listening, and we’ll talk to you next time.