Intersecting Identities: Coming Out and Living with CF
E11

Intersecting Identities: Coming Out and Living with CF

**Caleigh (Host):**
Welcome to our Fight to Breathe, a podcast rooted in resilience, community, and the power of storytelling. My name is Caleigh Haber and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system and and have lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight.

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability and rare disease. It's a space where we talk about the realities of what we face there. The triumphs and the grief, the injustice and the joy, the medical complexities and the very human stories behind them. Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. My hope is that you'll walk away from each episode feeling seen, understood, and a little less alone. Whether you're navigating this life yourself or you're here to learn, listen, or support someone you love, this podcast is for you.Thank you for being here. Let's keep fighting together.

In today's episode, we're exploring the intersection of identity and chronic illness by discussing the powerful journey of coming out as LGBTQIA+ while living with cystic fibrosis. We'll dive into the raw, authentic story of someone who navigates both of these worlds with courage and resilience.

Our mission is to highlight the unique challenges faced by individuals at this intersection, to celebrate their strength, and to promote inclusivity within the CF community by addressing systemic issues at our Fight to Breathe. Our mission is to offer a platform for people to voice their experiences in an accepting and nonjudgmental atmosphere. We aim to foster a sense of belonging and support and offering insights, sharing stories and amplifying the voices within the CF community. Each episode brings you closer to understanding the realities of living with cystic fibrosis while highlighting the resilience, strength and hope that bind us together.

Now, let's jump into the episode.

Today I'm excited to welcome my friend, Brandon Wright. Brandon is a 37 year old individual living with cystic fibrosis. Currently on Trikasta. He lives in Ohio with his husband of eight years and their diverse family of pets, including two dogs, Amber and Andrew, two cats, Madeline and Hazel, and a pig named Oliver.

Brandon holds credentials as a licensed social worker as well as a certified dementia practitioner. Brandon is also deeply involved in the Cystic Fibrosis Foundation community. He was a speaker at the North American Cystic Fibrosis Conference 2024 and participates in several focus groups including Sharing and Pride.

He is also an active participant in Breathecon and Familycon, is a mentor for Peer Connect, and was on last year's planning committee for the CFF Gala in Cincinnati, and is a member of the alliance of Social Workers with Cystic Fibrosis. And to top it all off, he recently wrote an emotional piece titled [Owning My Story](https://www.cff.org/community-posts/2024-06/owning-my-story), describing coming out as a personal pilgrimage marked by vulnerability, courage, and the pursuit of authenticity. He shared that, “the process of unveiling your true self can be overwhelming, scary, and empowering”.

Welcome to the RFI to Breathe podcast, Brandon, and thank you for taking the time to share your voice.

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
Hi everybody, I'm Brandon. I had the opportunity to meet Caleigh during the 2024 Breathecon. So 2023 into 2024, we were on the planning committee meeting week after week and kind of a natural relationship friendship kind of evolved from there.

I had the opportunity after Breathcon to do some social distance meeting with Caleigh, her husband, her four legged children. It was a instant connection, instant friendship. And it's been great to collaborate with Caleigh from a Breathcon in the CF foundation standpoint. But now as a friend.

**Caleigh (Host):**

I felt very connected to individuals with cystic fibrosis naturally. And you and I actually don't share a lot of similarities in our health, but we do share a lot of similarities with just our personalities and our interests and just who we are as people. So it was really fun. Thank you so much for welcoming myself and my husband to your beautiful, gorgeous house in Ohio. It was really, really fun.

Thank you for being on the show and just being so open. I really, really enjoyed your blog that you did on the community blog on Cystic Fibrosis Foundation.

I felt like I was instantly in tears because it was so emotional and authentic and I could really feel your presence in your writing. It was really great. Thanks.

Like, what has made you so open as a community member of the LGBTQIA community?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
You know, I think it's unique because I look at my brother, for example, who also has cf. He's five years younger and he and I are complete opposite. Growing up, same family, same kind of way. It's just been very opposite that he's more reserved as a person with cf, even sharing that story.

But for me, it's always been kind of that piece where my first thing is, like, I'll shake your hand. Like, my name is Brandon. I have cf, and, like, I'm a gay male. Like, I've always wanted to not necessarily be out, and I always have not been able to be out from as a gay male. But it made that part of me coming out, if you will, easier because I've always been coming out every time I meet somebody that, “hey, I have cf”, or somebody will hear me cough, like, oh, my gosh, it sounds like you have asthma. “No, actually, I have cf. Let me tell you a little bit about it”. So it's always been that immediate conversation.

Which I think actually allowed me to when I ended up coming out as a gay male, made it much easier. And I know there's a lot of folks on the, you know, the LGBTQIA plus in that family who have had similar conversations with, like, myself that, you know, because they've always came out as a person with cf, that it's ended up making that easier to. To come out to those that they're close to or that they choose to in the beginning,

**Caleigh (Host):**

At what age did you come out and what led up to it and what led you or helped you actually come out as a gay individual?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
It was six weeks old when I was diagnosed with cf. But as a gay male, it was. I think there was always a piece that I knew something was different. You know, you hear of and see pictures growing up, like, of a husband and wife and pictures of weddings or, you know, the white picket fence ideology of having children. And I was always gravitated towards that. I wanted that connection just because I had that growing up, like, you know, a mom and a dad and this traditional family.

But starting to, you know, never had a girlfriend. I had friends that were females that I was close to, but I didn't want anything else further from that. You know, I shared a couple of kisses, and it wasn't something that's like, oh, my gosh, these sparks go off. And I remember the video from Christina Aguilera, kind of like going back a few years for beautiful. And there were two males in the video kissing. And it was a huge piece for my area. I was born kind of in the south, the south of the United States. And so many people are like, that's disgusting. It can't be on on tv. Can't believe that our children are watching this. And in my mind, I was like, that's not really disgusting. Like, and it kind of started this process in my head, like, okay, maybe actually there's something to it. But growing up in a very religious family, I was like, I can't think this way. Like, I can't be this way.

Even at the point where there was prayers, like, you know, you got to pray that you can't be this way. Because at the time that people growing up, it was, you know, if you're gay, you're not going to go to heaven. And it was not for several years that I really made any other comments or statements.

I moved away to Tennessee for college and talking with quite a few individuals, meeting other gay individuals, realizing, like, my gosh, we are just humans. We just like other things than that heteronormative society that a lot of people like to say is the correct way.

Coming to terms, like, from a religious standpoint, in my case, like, we were made this way. This is who I am. And accepting that for ourselves, that had to be first. Before I came comfortable being able to share that information.

I was able to share that information. Obviously starting with family and concerned that, what are they going to do? What are they going to accept that? I think in the very beginning it was concerned from a religious standpoint, but then realizing, like, their son's not going away. I'm still the same person that I am. Friends, roommates, people that I started to, you know, to date, obviously, where we're much more accepting in our generation. But it was kind of that in a very roundabout answer. 18, 19 years old. When I really actually came out, I was in college. And that's when I truly. I said it kind of to myself out loud. And then I actually started living that out life.

**Caleigh (Host):**
It's actually, like, making me tear up. It's making my, like, heartbreak a little bit, just hearing how difficult that must have been, because I cannot relate. But I also grew up in a very, like, religious. Not quite household, but upbringing, going to religious private schools and stuff. And I do know how much people were actually outcasted. And I never understood it because in my mind, I always, like, was raised with, like, equality. So I didn't really understand it. Going back I actually wish I would have done more to sort of help that person or be friends with that person, you know, but when we're young, our brains don't always work that way. But it sounds, you know, very emotional, very distressful for you.

Can you tell us, like, what are some of the major emotional and psychological challenges that you face during due to both having cystic fibrosis and being a gay man?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
You know, this, this level of isolation has always been this theme in my life. And I would say, like our life, because you have CF, you can't be around other CFers. And there's this theme of isolation which then felt like it just continued a little further. Like, okay, now I'm not going to be accepted by certain religious groups or I'm not going to be accepted by a political group, if you will.

And when I was, I started college in Tennessee. It was a private college and it was actually to the point where they were asking me it was a private religious college, not going to say the names, but asked me not to come back because I was, I was choosing to be like an outdated male and that's not what they wanted at their community.

So at the time I realized like, okay, I need to find a new school and I need to move. The area of Tennessee was doing like KKK marches on Friday nights for kill the fags. And I was like, I just have to like leave. But I don't know where to go because like I was seeing the, the doctor in Atlanta for CF because it was not one local. So I actually spoke to the doctor in Atlanta as this person that was kind of like, I'm seeing you kind of as the beginning as a. In the adult center. I was like, but I have to like, have to move. I have to go somewhere else. I want to start school somewhere else.

So she actually referred a couple other CF centers because she's like, you need to move where there's a good CF center. She recommended one in Chicago and as soon as she said Chicago, I was like, well, that's too cold. Fast forward to now, I'm actually working at Chicago. But she recommended Philadelphia was the second place and she was just like, you know, she's like, I don't know. She's like, they are much more liberal area. She's like, but I can speak up on. Only on behalf of the CF center. So actually flew up to Philadelphia and met the social worker first. She actually met me. She's like, the here. But she's like, I, you know, want you to be able to meet the doctor. And I started talking to her about like, why I'm moving. And she was like, you need to drive to this school. You are going to school for social work and you are going to start to get to meet the head of the department who is an out lesbian who is married. She's like, I know for a fact you'll be accepted. She's like, now there's going to be. I'll never forget it. “She's like, there's ignorance everywhere. She's like, but you just have to know who you can connect yourself with and who creates a safe space”. She's will kind of forever be like my top person. That was, like, my advocate for a while, because I use her as a CF social worker, but really just that sounding board, like, what should I do? And knowing that I'm moving to Philadelphia, not knowing a single soul, but I'm just taking this leap of faith and going to surround myself to a place where there's hopefully not these horrible, like, marches from the KKK and a school that's saying, you can't go here to a place that's, you know, a big city. And I was kind of like, let's explore what's the worst that happens. I have to move back. So my dog and I got in the car and I moved 2007 to Philadelphia.

**Caleigh (Host):**
Something you talked about is, like, as cystic fibrosis individuals, we are strongly attached to our healthcare care centers. If we, like, have a bond, a good communication, a good relationship with people, we'll base our entire life around that. So I'm really glad that you found a place where she was not only like, a good provider, but also connected you somewhere where you could feel accepted.

And, like, the other thing is just that acceptance. Because I am not part of the LGBTQIA+ community, However, I do feel like having cystic fibrosis, you do come out, like you said, you come out to friends. You're constantly coming out actually to, like, colleagues, to…usually not family members, but friends, like, all throughout your life. And I think also as your health evolves, you have to come out faster. Sometimes, like, if you're coughing or you're wearing oxygen or whatever that is, you're almost, like, revealing yourself. And it's like the layer of the onions, you know, like, coming off. And you do feel very vulnerable at times.

So nice that you found a community there. And I'm happy that you were there and you have found him and everything. It sounds like you did have a good medical provider, but have you experienced any medical inequalities or unique challenges in the healthcare system because of your identity as a gay man?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
Honestly, the entire team in Philadelphia has been amazing. It was probably one of the hardest parts of deciding that we were going to move. And obviously, a little over two years ago, my husband relocated to the Cincinnati area where my brother lives, my grandparents, my mom. And one of the biggest pieces, because I work remote, I work either from my office here, or I'm kind of; I travel for work, which has its own obstacles. But leaving the CF team, I actually was like, if I can fly here every quarter, to be able to still see my team, like, I want to do that because I do not want to leave my team.

But then the doctor is like, oh, I'm fine with that. But at the same time, if you get ill, I want you to already know the team in Cincinnati because there's going to time that you. There's reality. Like, you are going to be ill, and you're going to need to know at least the team and let them know your piece.

I would say the only uniqueness was, you know, as a that LGBTQIA+ plus person, you know, growing up, not necessarily in the same relationship, there are certain health things from, like.

Like, STIs, just wanting to make sure we're taking care of ourselves from sexual activity, things of that nature. And I had the conversation with the doctor, like, can we just do, like, standard, like, Men's Health blood work just to ensure that? And he's just like, I don't understand why. And trying to navigate that for myself was unique. Like, I don't mind advocating for myself, but I'm just like, I took enough for me to say, like, can you do some blood work to make sure that I'm, you know, practicing safe sexual habits. So after that was obviously navigated through, it was able to be just a routine piece, but I think there's been a layer of just, like, not understanding as well.

I'm actually on one of the committees for Pride, and that was one of the pieces that I talked about was, hey, making sure that our teams are asking, like, is somebody else overseeing maybe, like, your. Your sexual health? Or do we need to have that conversation as well to help bridge that gap? Because not everybody, whether they grew up religious or not, is not comfortable having those conversations with a professional, if you will.

So that's really been the only uniqueness to my care. Team Philadelphia, not an issue at all. Coming to Cincinnati, everyone's. You know, I've never been afraid to say, like, obviously not coming out, having cf, you know, I just say, like, “my husband”, which automatically then alludes that I'm a gay male and no one even batted an eye, which is automatically made me feel very, very welcome.

But I made sure that I kind of said those things my first appointment. Like, “my husband”, because I wanted to make sure that I kind of went into it like an interview standpoint. I wanted to make sure I was going to be accepted. We hear of, like, Ohio or the Midwest, not always accepting. But the team here that I've worked with has been nothing but helpful.

**Caleigh (Host):**
That's great to hear. I'm glad that, you know, you're confident enough to advocate for yourself, because I will say that, like, being young especially is like a little bit tougher. And it's really important to advocate for good health, not only for pulmonary and gi, but also for reproductive good health or for just men's health, all of those things.

Are there any changes that you would like to see in the healthcare system to better support the LGBTQIA+ plus individuals with chronic illness, such as cf?

I mean, I know you're so involved in, you know, sharing and pride and all of these other focus groups. Maybe you're hearing something in those groups that you can share.

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
This has come out and this is kind of my experience, but this is more on the men being, you know, infertile and kind of the children piece. And I'm working very closely with a couple groupings to really start that conversation. At any younger age, like any person, whether they're part of the LGBTQIA+ family or a heteronormative female-male, they might not be able to have the standard child through the normal procreation process. They can still have children, but it might look a little different. And I think starting those conversations, when somebody can start to understand, like, you can have children, it might just look a little different. You know, 12, 13 years old to have those conversations versus I turn 18, I go to an adult center, and they're like, “oh, and you know, you're sterile. Correct?”. Like, that was my first time of hearing those pieces and being like, “what do you mean I can't have children? Like, I had no idea”. And then I self internalize that to be like, well, maybe that's meant to be because I'm now I'm gay, I can't have children. Like, oh, okay, maybe this is starting to make sense.

But I think that a lot of people, whether they are gay, lesbian, trans, straight, bi, they're wanting to still have a family. Everyone wants to have that sense of belonging. At this point, my husband and I do not have children, but we're not ruling that out. And I think everyone has to start to accept what that might look like for them, but not allow, like, fairy tale stories to happen and then realize, like, you're 18, like, oh, my gosh, I'm not going to have children. You can for sure saw children. It could look very different, though, for you. And here's. We can start those conversations at a younger age. I think it's going to be equally as important. I know, like the DEI councils, diversity, equity, inclusion, are working hard for, you know, people going through med school now. And I think it's just also a generational difference that there are more out people, There are people that are. We all put our pants on the same, you know, one leg at a time, that there's just going to be a different layer of acceptance and knowledge of what other persons are out there in the world. So I think some of that will naturally morph. I do think, though, that they'll still have to be some just conversations and standard health pieces that go in there.

You know, if somebody is born female and are transitioning to male, what is that going to look like from a health perspective - can they take trikafta? Are they going to do chest binding, which is not going to be great on the lungs, but that’s what they need to do.

So really just being able to say, like, if that CF doctor is not 100% confident in that, like, who can we loop in as our whole care team to not care for this one person, because it's still the same person that we need to. To love unconditionally.

**Caleigh (Host):**
My own journey with just kids and infertility and stuff has been. I mean, I was 21 when I was told I needed a double lung transplant. And by that time I was very, very sick.

So one of the pieces is just being a woman and how to use contraception. Because, you know, contraception does not work while you're on antibiotics, if you're on certain contraception. So which one's going to be the best choice for you when you're on antibiotics or just every single day treatments with cystic fibrosis?

And then once you go into transplant, you go into this whole section of it's not going to be the best option for you to be pregnant. Okay, well, I'm already too sick, though. You're telling me I can't be pregnant in the future, but I'm also too sick to go through egg retrieval.

Well, why didn't you tell me this when you knew that I was spiraling down for five years? You know, like, why didn't we talk about this?

Because I think women who are diagnosed with cancer, they're immediately given the options to, like, go through like egg retrieval and. And then they can decide in the future, but have it as an option. But I never have that option because I was never given the option. And I had really no choice, no education when it came down to it. And without education, I don't think that we as individuals can properly advocate for ourselves.

And you're right, with this new generation, things are changing. There's also more access to information on Internet that we didn't have. Like, you and I didn't. We couldn't just pull up our phones and Google cystic fibrosis. Like, I didn't even know it was a terminal disease until I was being transplanted because my parents didn't want me to know. They didn't want me to have that in my head. So there's just so many pieces.

But let's kind of talk about now, like, coping strategies, support strategies for being in these two communities. So you're extremely involved in the CF community, extremely involved in the Cystic Fibrosis Foundation. I think it's the longest intro I've done - just naming off all of the things that you're involved in. How important is it to have support and what role has the community played in your journey?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
You know, just doing that on the intro part, you know, you just do like, et cetera. Because I know there is a lot.

And I found myself even over the past, like, few years, I think Covid made me do this even more. And I'm just going to keep blaming Covid because it's easy to do, but I think that Covid just made me want to have this sense of connection to like, more because so much was taken away from us and there was so much further isolation. UFCF are isolated, gay males are isolated. Like Covid really just like honed in on that. And I started to put my feelers out there more and more, especially during then, like, how do I. How do I get connected? Because you're not connected. I mean, zoom and teams are great and they'll continue to be online pieces, especially for CF individuals. And I'm so grateful because like, you and I, we can talk in different countries just to be able to do these pieces through technology. But I wanted to be connected to people that I likely know felt similar to myself, that didn't have the voice, didn't have maybe the knowledge or education. I'm very blessed at my health and that allowed me to finish school when I was able, through social work school to learn a lot about myself as well, much less like in my social work practice. Which I think has helped me self advocate for myself, but also identify some of those pieces that I have some strong suits and I have some things that I need to keep working on, but knowing that there are people out there that likely feel very similar to myself during those, those moments, I was like, I want to be connected and I want to be connected for myself, but I want other people to be out there to hear other people's voices and then just that further connection.

So whether it's. I first started with PeerConnect and BreatheCon, because as you probably already know, I'm not afraid to talk to anybody. And I use that kind of my, my group skill sets because I ran a lot of groups professionally to help navigate through some of those groups that I've been in. And it helps bridge the gap because not, not all adults get along and there's going to be differing opinions. And I, I pride myself and I'm able to help through navigating some of those conversations.

But now really starting to get involved with some of the focus groups with the CF foundation and being involved in some physicians and universities that are teaching physicians and being able to say, like, I actually might have a say so in what somebody learns is so rewarding. There's a local Cincinnati gala that just occurred, and being able to be just part of those planning committees is so rewarding. To say, like, you know, this is not just a disease that people are dying at 12 years old anymore. Like, the true CF is so cliche. They really mean when they mean like CF stands for..It's going to be there till it stands for cures, Cure found. I think it's only because of all of these different pieces and different involvements that not only care team members can get involved in, but truly the patients themselves. Because it's not like, you know, you have, I don't know, you have cancer. And there's maybe like support groups for that that people go to that's been around for forever, and they've just had to find a different way to do this for supports.

But I think it's morphed so quickly so recently because people are living longer. Like recently when I was born, it was, you know, 12 years old and having care supports, it was really focusing on life safety. And now that people are living, you know, we're both in our 30s and people are living longer, 40s, 50s, 60s, the, the need for these supports are even more prevalent and training the doctors, you know, I think of some of the doctors that maybe diagnosed me. Like they're not going to ever talk about fertility because the person's not going to live that long.

So I can see then why things are so different. But now, again, like we talked about that different generational cultural piece evolving with care, what somebody with CF is capable of, I think it's just going to continue to morph. And I think in the next, you know, five, ten years, you're just going to really be unlimited in what can be done from the care staff, but also work patients with cf.

But my connection has just been a piece where I love to be able to give back. You know, I can't necessarily give back financially, but being able to give myself and my time is something that I find extremely rewarding. And it's just a kind of a life goal of mine just to now continue to give back to the CF foundation, but also to those with kind of on the LGBTQIA+ family member as well.

**Caleigh (Host):**
So one thing I just want to put out here for listeners. If you do want to get involved as a patient, there are so many different avenues that you can take with the Cystic Fibrosis foundation as rel as Global Genes or Donate Life. There's a lot of organizations. If you get online and Google, if you have a particular skill set, you can get involved. Or if you just want to connect on a personal level, there's so many, many ways to do that. So definitely look into it. I also kind of want to touch on listeners who don't have cystic fibrosis or don't have a loved one with cystic fibrosis on sort of like how we navigate support systems and like our network as people with cystic fibrosis. So you and I both have cf. Yes, we did meet in person, but as you said, we social distance. So people with cystic fibrosis have been living by the six foot rule for our whole lives. So let's touch on that a little bit. Can you explain to listeners who maybe aren't educated in this, you know, how we have in person relationships with people with cystic fibrosis or maybe why we don't and why we do so much of this online?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
Yeah, for sure. Just another thing that makes us more unique.

You know, those individuals like Caleigh, myself, my brother, thousands of others out there with cf, we have certain bugs, if you will, whether it's fungal infections, virus, bacteria that we can grow, we can harbor that other people aren't really susceptible against, or their, their mucus is so thin they don't even catch It. But people with CF has. Have much thicker mucus. Not just mucus in the lungs like we think of. We have mucus kind of. Everyone has mucus kind of throughout their entire body, but different organs has mucus. From a lubrication standpoint, we have mucus in our lungs, but other organs that is much, much, much thicker. Some folks are on a medication which is kind of mutating. Our lungs are. But there's still previous damage that is done and not necessarily from a scientific standpoint to talk today.

I have certain bugs that even I worry about giving to my brother. Growing up, they've always said, like, you have to, you know, be mindful of, you know, being in a small space together and having a sibling, I think is just very different and an obstacle that people don't even know how to navigate through. I remember somebody being like, oh, you're going to be much healthier when you move away from your brother. And it was actually opposite, my health declined just because I was getting older with cf.

But being around somebody like Caleigh when we were together, like, that was so important to me, but also to her, like, I would feel horrible. I know I have bugs. I would feel horrible if I gave something that I was growing to Caleigh and again, her husband, my husband's not going to catch it, so I don't mind. I'm always good with, you know, hand hygiene and washing my hands. But a simple cough, like, you would be surprised what comes out of our mouth. And we cough with. I mean, yes, you can use the inside of your arm, your hand, but things do spread, and we just want to be really mindful of that. So about six foot rule came into place, and when Covid came out and it was like, oh, six feet away, I was like, we've been doing this for years. We got this.

But tapping into that virtual piece is. Is so good. I've been to a. There was a support group that I was at in Philadelphia. There were six people allowed to come, and it was inside a gymnasium, and. And they had you standing outside and you could. There were six chairs around this entire gymnasium and it was kind of comical because you literally was so far apart. You were kind of like, yelling at each other.

You know, people often, I remember growing up sitting in the parking lot, and they would call you in to be able to be like, your appointment's ready, because you saw somebody else come out and I remember, like, looking out the window to be like, that person has cf.

Like, you don't get to meet other CF people. And looking back at it now, I'm like, this is crazy that this. That's what, like, some people, like, have lived through. But even, like, when I moved to Philadelphia and I was like, are there other gay people with cf? I have never. I had not met any, any person at all just till a few years ago.

So it's nice to know that people aren't alone. But again, just that connection of your. What our bodies grow, other people necessarily aren't susceptible to, but people with CF definitely are. And once. Once we get it, it goes from like, you could have pneumonia to now you might be in the hospital or on home IVs. It's pretty quick.

**Caleigh (Host):**
Yeah. It can be really life changing to catch one bug. It can change your life forever. You can be put on the transplant list. There's so many repercussions that can happen from one action, and that's why we have to be extremely safe. And you also have to be very knowledgeable and educated about how to be safe.

So if you have cystic fibrosis and you're listening to this and you think, wow, it's so cool that they met in person. Don't just go reach out to somebody and meet in person. Definitely educate yourself on what is good behavior for doing that. You can, you know, look on the Cystic Fibrosis Foundation’s website. You can maybe talk to somebody that's a mentor of yours, but be safe, please. And don't do something just because somebody else has. That's all I want to say for a little bit of a psa.

So let's talk about building resilience and finding joy. You seem to be very optimistic. You are so funny, very lighthearted. You're very fun to talk to. You're just like a really, really, from my personal standpoint, a very, like, comical, easygoing friend that I can always rely on. But you're also very deep, and you can have, like, deep conversations and stuff.

So what are some of your practical tips for fostering resilience and finding joy amongst the challenges of living with CF and being part of the LGBTQIA+ community?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
I'll say this as, like, a commercial, if you will, but, like, I encourage anyone to go through therapy, whether it's two sessions, couple years. I saw a therapist for several years and just processing, like, how you are processing life, how you're handling these pieces. I think. I mean, Caleigh and I and many other folks with cf, we are strong people.

We had to be. You know, you grow up and you either think, like, oh my gosh. I might not live till I'm 15 or I might not be able to get married or. And things just keep progressing. I think there's a different level of resiliency that those with terminals build up.

But then being on, you know, in the kind of the LGBTQIA+ family, you build up a piece of kind of fight or flight. Like, you have to protect yourself because if that, that's what you believe, that you have to really kind of dive into that and protect yourself and put yourself around people only that love you and are okay with you.

But that Joy piece, I know for a while it was, There were some depressed days, weeks, months, years, kind of like being like, I'm going to be alone or I'm not going to find, find individuals or I'm not going to be here. Like, why am I worrying about like a savings retirement account or like, why don't you go to college? I know there for a while, the longest time I was like, I'm not even going to think about like a transplant. Like, I'm just going to live my life and be done. And having to switch that for myself was, was very key. I remember having multiple conversations with, with friends, with my, my care team, my family. They being able to say like, you know, you have to live your life. And having to really tap back into like, do I live my, my best life?

Gandhi has this quote, like, be the change you wish to see in the world. And I kind of make that like my life quote, if you will. Non religious, kind of religious, but really like, am I being the change? So a lot of people are like, you know, is it forced happiness or, you know, you faking it so you're making it. And some days there's a level of like, I, I gotta change my thought process because I can automatically have a negative thought. But I could say like, or I could put a positive spin to that. And I try to do that very, very hard because I think it's important for myself to exude that piece. But I think also for others to not see, like, oh, this person's like, down 24/7. Having a job for me is nice because it gives me that purpose. I'm very, very blessed that I can, can work. But I also, in my head, there's going to be a time that I can, I'm already afraid of that. Like, what am I going to do with my mind? Because I can get into my own mind and that, that scares me sometimes.

**Caleigh (Host):**
Well, one I think you're involved in so many volunteer things already. I don't think you're going to have a problem filling your time up, because I'm not even sure how you're doing it all right now.

But you did touch on just depression and how, you know, you've experienced it. I've experienced it for years. I think it's completely natural that people in our situation experience depression from time to time - situational depression when we're in the hospital, different things like that. And I don't feel like, you know, just because you're going through depression, that that is something to hide.

I think it's something like you said, to seek help, to share with others and maybe lean on others when you're in that situation. And surrounding yourself with people that accept you is so important.

When I kind of switch from having this cystic fibrosis, invisible disease to then having a completely visible disease with a feeding tube and oxygen for so many years, and I was 21 years old, 22, 23, 24, 25, then again, 27, 28, like, it's hard because it's the first thing that somebody sees.

And when you have CF and you're coughing all the time, like, I hated going to the movies, which is, like, my favorite thing in the world is to go to the movies. And it came to the point where, like, I didn't want to go because I would cough and people would turn around and look at me as if I was going to get them sick. And I'm like, I swear I'm not going to get you sick. But also, like, I understand that it's kind of ruining your time, and now I'm cautious of it, and now I don't want to be here.

So surrounding yourself with people that accept you for who you are and what you're going through and all of the stages in life that come with cystic fibrosis or identifying as anything in life, like, that's really important. We are very blessed that we have spouses and partners who accept us and kind of like our, like, other halves and everything in life, and we're very blessed to have that.

Are there any resources that you can share with listeners about getting involved in the CF community and the LGBTQIA+ community specifically? We've talked about many of, like, the different groups, but you said you put out feelers. What does that look like? Like, if somebody has never been involved or never spoken to another person with cf, how can we sort of help somebody or give tips to somebody to, like, push that door open and really get involved?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
You know, one of the the greatest platforms that are is out there is there's Peer Connect, which is great. So you can just connect with another mentor and maybe talk about depression. Maybe you just talk about being a, a male, maybe somebody gay male lead to a female, somebody who wants a child with other people who've had that experience. And it's truly other people with cf talking people with cf. Peer Connect is a really wonderful resource. There are so many cons, if you will. There is researchcon, there's familycon, breathecon, which is how Caleigh and I met.

There is something for every person, all the way down to LGBTQIA with cf, very specific groups, people of color with cf, different ethnicity, groups with CF working with cf, not working with CF eligible for a CF modulator, not eligible. So the people that are on the planning committee the past couple years have worked hard just to make sure it's diverse for anyone. And you can be as interactive and engaged as you want. You can literally have not your name on there, not a camera, and just be able to be there to listen. And that's completely fine.

Come as you are. If you are Saturday morning and you want to lay in bed in your sweatpants and a hoodie on, go for it.

**Caleigh (Host):**
Come as you are. There's zero judgment.

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
One of the other resources that I've recently used from an insurance perspective, and that's what one I was thinking of is COMPASS is ever encompassing, no pun intended, on what the resources are even to connect you to different cons, but all the way down to you need to speak with somebody who. And they kind of have different individuals per region that works with also your CF clinic.

So when I was in my clinic, I had some issues with my insurance and kind of out of out of pocket payments. So not necessarily from a copay perspective, but they just gave me some different lenses to use to look through when I'm choosing my new insurance. And it was nice to be able to tap into Compass for those resources because they've navigated this kind of as that subject matter expertise.

**Caleigh (Host):**
Yeah, absolutely. They helped me and Bryan so much with insurance and traveling and all of those things. So they're a great resource.

So we're coming to an end with our episode here, but I do have two questions from listeners that have actually sent in the questions via social media. If you have a topic or a comment or a question for a future episode, please reach out to me on @Fight2Breathe. So the first listener says, what advice do you have for someone who is struggling to balance their CF Care with the process of exploring or coming out with their LGBTQIA + identity?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
Loaded question. Without getting, like, medical advice, like, you got to take care of yourself first.

So if you are not feeling well, if you've got some bugs growing that we talked about, like, you got to take care of yourself, because then you're not going to be able to come out if you don't take care of yourself or you're just going to be in a hospital or further that depression.

So lean on your care team first and foremost. Like, you know, I always think of kind of like Maslow's hierarchy of needs. Like, you got to take care of yourself. And then you can start to tackle those other components of, maybe you find somebody that you're the closest to, maybe it's your social worker at your CF clinic who you say, I'm not telling anyone else about this, but, like, I want to share some things with you. I think I'm bisexual. I think I'm gay, I think I'm. I'm trans. And that will start to slowly creep into. Someone else is going to know. Someone else is going to know.

Not everyone might accept you, but those people who accept you, they're going to put their arms around you and it will be okay.

I recently did a blog and a few folks have reached out to myself, reach out to myself, reach out to my husband. There are people out there who want you to be safe, but we. You first and foremost have to take care of yourself, and then we want to make sure that you are also taking care of yourself and living your. Your authentic life.

And if that's. As somebody who is on that LGBTQIA plus in that family, then come out. It's an awesome place to be.

**Caleigh (Host):**
That was really great advice. And the second question, I love this question personally.

How can allies within the CF community better support the LGBTQIA+ individuals, especially those who might feel isolated or misunderstood?

**Brandon Wright (CF Person, Licensed Social Worker (LSW), Certified Dementia Practitioner (CDP))**
You know, the level of just being there for somebody, not even knowing what to say is first and foremost, it's okay.

You're never going to have all the right answers. But being able to say, like, “how are you today”? And if the person says, I'm okay, you might have to move on. But once you start to get to know somebody, I know you've occasionally been like you. You always just say, like, you're okay. Like, once you get to know somebody, it's okay to dive in a little further to that and really say, like, but truly, how are you listening and have you as an ally, Caleigh, like, you fostered this environment. Like, other people might not feel comfortable listening and that's okay. Then they don't have to listen. But the first and foremost is you gotta keep creating these environments where it's okay to be accepted. It's okay to put yourself out there. If this is not your comfort zone, that's okay. Maybe it will be later. But know what your comfort level is first and foremost. Don't do any damage. Just be kind. And if it's not your comfort zone or not your level of where you, where you're at, then maybe even just say that. Like, I've had people be like, you know, like, I'm not really, you know, comfortable around gay people. I'm not going to hit on you. That's not what we're here for. But, like, treat me like a human. Treat me like somebody, like, I'm your neighbor. I also pay taxes. And that relationship can spawn, like, we, we can just not be like two individuals that live on the same street and we can still have a decent relationship.

But I think that, I mean, we could have a whole different podcast on the pieces of what can allies do? And I think just being there, there's always research that can be done. I'm not a huge reader myself, but there's research that can be done of really, you know, what does it look like for people who are coming out. But tap into people that you're comfortable with. Know your comfort level and just, you don't have to force yourself into a relationship, but if it happens, let it happen. Know that we are all people that really are here for the common interest, just to continue humanity.

**Caleigh (Host):**
That was awesome! So thank you so much for being on the podcast and just sharing your perspective and your experiences. You are such a great voice for representing as a member of both the CF community as well as the LBGTQIA+ community. And I can't wait to talk to you soon because I'll probably talk to you right after this and the rest of the day, but I love you. Tell Tim I say hi. Tell the kiddos I say hi. And have a good rest of your day.

**Caleigh (Host):**
I will. Caleigh, thank you for making this space. You know, I know you're working hard to interview a lot of folks, but your dedication and your advocacy, you know, you talk about allies. Like, this is an easy, great example. So thank you so much. Have a wonderful for you. It's probably dinner time. They'll eat dinner. Tell Brian and the kids we said hi. We'll talk soon. Thank you.

**Caleigh (Host)**
Bye.

As we wrap up today's episode, I want to connect directly to you, our listeners. Your involvement, your stories and your support are what make the Our Fight to Breathe podcast a source of inspiration and change in both the Cystic Fibrosis and LGBTQIA+ communities.

We believe every story holds the potential to inspire and drive change. Whether you're living with cf, a member of the queer community community, a caregiver, a medical professional or a supporter, we want to hear from you.

Share your experiences with us on social media using the tag fight to breathe that's F I G H T (the number)2 B R E A T H E or email us at [caleigh@fight2breathe.org](mailto:caleigh@fight2breathe.org) your stories provide comfort, offer valuable insights and bolster advocacy and awareness to get involved.

Follow us on social media @fight2breathe and share our episodes with your friends and family. Engage with us through comments, questions and discussions. Advocate for better treatments, support systems and awareness by partnering with us in campaigns and initiatives. Reach out to others in the community, offer your support and build meaningful connections. Together we can create a powerful network and that uplifts and empowers everyone.

Every action, no matter how small, contributes to the strength and resilience of our community. By engaging and sharing, you're helping to foster a sense of belonging and hope for all those affected by cystic fibrosis. Together we can unite, inspire and empower each other to face the challenges ahead with courage and confidence.

Thank you for being part of the Our Fight to Breathe podcast. Let's continue this journey together, one story at a time.

And a heartfelt thank you to the Cystic Fibrosis Foundation's IMPACT Grant for supporting this podcast.

Creators and Guests

Caleigh Haber-Takayama
Host
Caleigh Haber-Takayama
I'm Caleigh Haber, a cystic fibrosis warrior, two-time double lung transplant recipient, and passionate advocate for the chronic illness community. Born with CF, I've navigated countless surgeries and medical challenges while choosing to live each day to the fullest in honor of my donors and with deep gratitude for my supportive community. Through Fight2Breathe and my podcast "Our Fight to Breathe," I advocate for the cystic fibrosis, organ transplant, and rare disease communities, working to raise awareness and inspire others to thrive despite their challenges.
Brandon Wright
Guest
Brandon Wright
Brandon Wright is a 37-year-old living with cystic fibrosis in Ohio, where he shares his life with his husband Tim and their beloved pets. He is a Licensed Social Worker (LSW) and Certified Dementia Practitioner (CDP), and an active advocate within the Cystic Fibrosis Foundation (CFF) community. Brandon has spoken at the North American Cystic Fibrosis Conference, participates in focus groups such as “SHARING and PRIDE,” and mentors others through Peer Connect. His writing, including the piece “owning his story,” explores themes of vulnerability, courage, and authenticity at the intersection of LGBTQIA+ identity and chronic illness. Brandon’s dedication to advocacy, support, and fostering resilience makes him a respected and inspiring voice in both the CF and LGBTQIA+ communities.