Episode 1: Carly’s Story

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Carly 00:10

And sometimes what I find most interesting is as much as I’m an advocate, and as much as I’m knowledgeable about all of my illnesses, sometimes I find them making me look out for things that I hadn’t even thought about.

Sarah Shaw  00:25

Welcome to The Asthma Podcast, a podcast that shares the real stories of people living with asthma. I’m Sarah Shaw, Senior Manager BIPOC Community Outreach at the Global Healthy Living Foundation. In this edition of The Asthma Podcast, we will dive into the stories of LGBTQ+ asthma patients within the theme of “Love Should Take Your Breath Away, Not Asthma,” exploring how LGBTQ+ individuals navigate identities, relationships, and asthma all at the same time. By sharing these stories, we hope that you feel inspired, heard, and more empowered through you or your loved ones asthma care journey. As a member of the LGBTQ+ community, this topic is very important to me.

Why the focus on this community, you ask? Well, a 2018 report by the Human Rights Campaign Foundation found that 21% of the adult LGBTQ plus population in the United States had asthma, compared to 14% of the non LGBTQ plus adult population.

In today’s episode, we’ll hear from Carly, an asthma patient and the Chief Research and Innovation Officer and co-host of Lupus Chat. Carly’s perspective as a person living with multiple conditions offers unique insight into her experiences living with asthma. Let’s dive into her story.

Carly  01:47

Hi, everybody, I’m Carly. I live with asthma and other chronic illnesses. I am the Chief Research and Innovation Officer for Lupus Chat. I am also a member of the NIH’s COVID-19 Treatment Guidelines Panel as well as a research lead and liaison with the COVID-19 Global Rheumatology Alliance.

Sarah Shaw  02:14

Hello, Carly, and welcome to The Asthma Podcast. Thank you so much for joining us today. How are you doing?

Carly  02:20

Well, first, thank you for having me. I’m doing well. It’s been an okay day.

Sarah Shaw  02:25

You know what, we’ll take okay, right? Take each day one step at a time. That’s all we can hope for when we live with chronic illness. So since we’re talking about asthma, I want to jump into talking to you about like what your earliest experience or memory you have of asthma is or was.

Carly 02:44

My earliest experience is not the same as my earliest memory. So I was actually born with asthma. But I guess the earliest experience I had with it was during labor, my mother had an asthma attack. And so that kind of, you know, propelled things forward. But yeah, but my earliest memory would have to be I was fairly young, I probably about six, and I had an asthma attack. And so that was like, the one thing I remember. I was at school, and going through, you know, the motions of, you know, I can’t breathe, we were in gym. And so it was, or PE for some people, but we had just finished some sort of activity. And we were sitting down, and I couldn’t catch my breath the way that normally I would be able to, and you know, something wasn’t right, obviously. And it kind of went on from there. You know, trouble breathing, people kind of coming in asking me, am I all right, and wheezing and that type of thing.

Sarah Shaw  02:59

That must have been pretty scary for you at such a young age to you know, be struggling to find breath and you know, your peers coming around you asking you if you’re okay. Do you remember what you were feeling at that time? For me, it’s hard for me to remember, you know, anything as young as six years old, but do you remember what thoughts were maybe going through your head?

Carly 

I was embarrassed. I was I was embarrassed because it was like, this thing is drawing attention to me what’s happening, you know, and that was, like I said, the first memory I have of it, and I’m I don’t believe I had an asthma attack prior to them. So, you know, it was a new experience for me, but I had at that time seen others who have had an asthma attack. So I knew what was happening. But you know, I didn’t necessarily know how to handle it from the first person.

Sarah Shaw  04:47

Right, right. You mentioned your mom actually had an asthma attack while she was in labor with you. Because of the fact that she has his has a history of asthma, was that something that she had kind of prepared you for so that you knew what you were experiencing was an asthma attack when you had it, or were you kind of caught off guard?

Carly 05:09

I was caught off guard for me to have an asthma attack. Even though I knew I had asthma. She didn’t necessarily prepare me. But she had already told me the story of her having an asthma attack. It was kind of a wonky day when she went into labor. So iit’s like a funny story associated with it. Well, probably not funny to her as she was the one going through it. But you know, now, of course, years later, and even then, you know, she could laugh about it, essentially. But I always remembered the story that she told me and so I knew I had asthma. So it wasn’t a surprise on that front, however, that I was actually having an asthma attack was a surprise.

Sarah Shaw  05:53

I feel like when you’re experiencing something for the very first time, nothing can really prepare you. Even you know, even if you have all the tools, you’re never going to really know exactly what it feels like. I myself do not live with asthma, but I live with other chronic illnesses. And people would tell me what a migraine attack felt like. The very first time I had one was not what I was expecting. So I was very caught off guard. So thank you for sharing that.

So into a little fun theme. So the theme of the campaign that we’re doing is called “Love Should Take Your Breath Away, Not Asthma,” and I wanted to ask you, what does that mean to you, you know, love and falling in love?

Carly  06:33

Well, as of late, I guess my and I say late, but I guess in recent years, my understanding and experience of love has been different. And so, to me, love is a very intentional thing. It is an action word, it’s a verb to me. So as much as it is a feeling and you know, an emotion, it is also something that we do. It’s something that set with intention. It’s something that we live, it’s something that we act out. And so that means because it is yes, an emotion but also, you know, something that we do, we can experience it in a number of ways. And that’s not to just, you know, be speaking of romantic love, but just, in general all forms of love.

Sarah Shaw  07:21

Absolutely. All forms of love. Speaking of all forms of love, does asthma ever get in the way of you loving or being loved by, you know, family, friends, caregiver support, does it ever interfere?

Carly  07:33

It doesn’t interfere, because where I am on my chronic illness journey, I am to the point where I kind of take precaution prior to something and I’m always thinking heavily about any activity or event I’m going to do because of my other illnesses. And so asthma is also included in that. And so I’m just ever mindful.

Sarah Shaw  07:57

That’s good. It’s kind of like you have the things in your toolkit to prepare yourself. When you wake up every morning, you get out of bed and you’re like, “Okay, this is how I’m going to go through the day,” knowing X, Y and Z to kind of like you’re saying to because you’ve already been living with multiple chronic illnesses, you know, ahead of time. But what was it, maybe like before you had the hindsight of living with chronic illnesses?

Carly 08:22

Oh, it was absolutely something that happened to me. Not something that I was mindful of or intentional about circumventing. It was just something that happened, there was no plan, there was nothing was in place. It was like, “Okay, I know I have this thing.” That’s it. You know that that was it was like, I know I have it. And whatever happens happens, because I guess at that point, I hadn’t really outside of having an inhaler, And knowing, “Okay, if you’re having an attack, you know, you take the inhaler,” the rescue inhaler. However, outside of that, it was like, I didn’t know that it wasn’t just a surprise thing. You know, because that was my experience. Like I said, that first time that I had, it was a surprise. And so I felt it was something that you couldn’t plan. You couldn’t, you know, try and prevent or take steps to alleviate some symptoms, etc.

Sarah Shaw  09:21

Right, right. So you didn’t realize there are plans that you could put into place, kind of like what you were saying earlier.

Carly  09:28

And I think with my age, that wasn’t even anything I was thinking about. You know, I didn’t get diagnosed with other chronic illnesses until adulthood, even though I did experience symptoms before, the diagnosis didn’t come until then. And so it wasn’t even on my mind to be trying to prevent something. You know, I kind of thought that, you know, “Okay, if it happens, it happens. I have an inhaler. Hopefully I’ll remember to bring it with me.” You know, that type of thing.

Sarah Shaw  10:00

Right, speaking of, you know, rescue meds and things that can help. Did you know of any other people that live with asthma growing up? Maybe inside your family outside of your family? Was this something that that was discussed about how to how to prepare? Like, how did you get to the point where you knew how to figure out how to prepare for these asthma attacks?

Carly  10:22

So I did know people that had asthma. And it always seemed as if theirs was worse than mine, because they would have frequent attacks. And so it was something that, like I said, I did not even fathom that I had to worry about in that capacity. I just thought, you know, like I said, hey, hopefully, I remember my inhaler, you know, that type of thing. It wasn’t something that I was really planning for. And I didn’t begin looking at my health in that way, until I was diagnosed with my other chronic illnesses. Because, you know, the flares were daily and in a different capacity, and they actually impacted each other. And once I learned those things, that’s when, you know, I was able to take better care of myself in that way.

Sarah Shaw  11:12

Right. So it sounds like you kind of learn by trial and error of figuring out what worked and what didn’t work. If we can fast forward to, you know, where you are now, your relationship with your loved ones, how do you and your partner plan for your asthma attacks? Like are there certain special things that they do to help? It’s kind of awkward too, when you’re in a relationship where you’re telling people that maybe don’t know about a chronic condition, “You know, Okay, hey, here’s something that is part of my life. And here’s how I deal with it. And here’s how you can do it.” Like, are these conversations that you had to have?

Carly  11:50

When it came to my other chronic illnesses, those were the conversations I had foremost. And funny enough, my partner found out I had asthma, kind of happenstance, you know, she heard me mentioning it to someone, and was like, “Oh, I didn’t know you had asthma.” And I was like, “Wait, I thought I told you that, you know.’

Sarah Shaw  12:10

Did you have to have those conversations with your partner? Or was that something kind of that you said, that was unspoken, that they already knew?

Carly  12:16

I think because they because she also knew someone, you know, knew others with asthma, the what to do is kind of unspoken. However, now, if she hears me wheezing, you know, she, she pays closer attention and things like that. And, you know, she just ensures that if we’re doing high energy activity, or something that would be extreme cardio, or something of that, sort it, that I’m pacing myself, and I’m being more careful, because I like to take ownership of my illness, and I’m kind of a control freak about it. And not letting others help me that whole thing. And so she just makes sure that I am using my tools effectively. And you know, that’s her way of helping.

Sarah Shaw  13:00

It’s so common when we live with chronic illnesses that we’ve often think that we have to do things alone, we don’t need help, or we’re so used to navigating the world by ourselves. And it’s so wonderful when you have partners, and family members and caregivers or care partners that help that step in and like help remind you not to overdo it, or not to just be like, “Okay, like, you know, how about we you know, we avoid this trigger?” Or, you know, are you sure you’re Okay? Or if they’re there to like hand you your rescue medication. I know, my partner, she does that for me a lot with my chronic illness. And so I think that it’s asthma, chronic illness, like they’re a multi person disease at times where you have to let the person that you love and the one that supports you know what’s going on, so that they know how to help you help yourself, right?

Carly 13:55

Absolutely. And that’s something that is very new for me. And that’s not to say that I didn’t have a partner before who knew about my illnesses. I didn’t have a partner who knew and cared in this way. And when you have that, and you’re not used to it, it comes as a shock. And it seems very weird, but one of the things that we hold steady to is because I had a habit of holding information. You know, like if I went to an appointment, not necessarily telling everything as to not worry her and so we have an agreement now that I will not do that, you know, I will be completely honest when it comes to my health. And it’s for that reason, it’s for the reason of if something happens, you know, she’d be able to maneuver properly to help me and then also it’s, she told me something one time that really just blew me out the water and it shouldn’t have but it did and she was just like, you know, “You’re not responsible for other people’s worry. Especially when the thing that they’re worrying about is something that negatively impacts you. You’re not responsible for that. You worry about the thing. And you let them worry about their worry.” That’s, that’s really nice. Like, whoa. Yeah. And so I have to maneuver with that in mind. And if this is going to be a partnership that, you know, I had to relinquish control in that way, I had to let go of just being the only person, you know, active in my care.

Sarah Shaw  15:32

Absolutely. It’s kind of like when you can shoulder the burden with somebody else and make it. It’s scary at first, right? Like you’re like, wait, know what

Carly 15:42

It is, but it makes it easier.

Sarah Shaw  15:45

Absolutely. Absolutely. I’m so glad that you have that support system, you have that loving, caring partner that wants to help you in your journey. And I think that people can learn a lot about relationships like that, where you’re able to have somebody supportive in your life that takes an interest in your health takes an interest in your journey, and is there to like, be a teammate really, to help now all of that. And I hope that for everybody, honestly, that that’s something that for sure. For sure. Speaking of, you know, supportive partners and communities being part of the LGBTQ plus community, have you found that that community has supported you in your asthma journey? Or are there other communities that have supported you in your in your asthma journey?

Carly  16:32

I would say indirectly, the LGBTQ plus community has supported me. And the reason I say indirectly, is because my friends have supported me. And they are themselves queer. And you know, so when we wouldn’t be going to queer spaces or whatever, you know, they make sure I have everything I need, when we’re going out, or, you know, we’re doing things and so in that way, they’ve helped me but it hasn’t really been, you know, a focal point, so to speak, we didn’t make it a spectacle. But my friends have done over the years, the thing were that they’re supposed to do, you know, they’re there for me in whatever way I need them. And that does include ensuring that I’m most prepared for, if something should go wrong,

Sarah Shaw  17:19

That’s really, really good, really amazing that you have that support system that people that look out for you. I know that too in the chronic illness community that along with friends, there’s also other people that get it like, I know that you have a support system within Lupus Chat, do you want to talk a little bit about how they’ve supported you?

Carly  17:40

Oh, 100%. And it’s twofold. Because not only is it Lupus Chat, the community, you know, of patients and caregivers, but it’s also the executive team, as I am a member of the executive team, the other three people are three of my closest friends. And it’s because of how we take care with each other in that way, you know, two of which are patients themselves. One is a caregiver. And so we’re there for each other in that way. And they have been extremely supportive, when it comes to any illness that I have. And the same goes for Lupus Chat, the community because I have the ability to, you know, not only ask them questions about, you know, their experiences with lupus, but also with any other chronic illness or condition that they may have. It’s been extremely helpful. And you know, it’s one of those things where it’s always good not to have to explain it to people who already get it. That’s like a second layer of comfort. And so that’s something that I get to, I’m lucky to experience.

Sarah Shaw  18:49

It’s like that unspoken, you know, language that we all kind of speak. It’s really truly amazing. Where you don’t have to explain away oh, I’m doing this because of X, Y, and Z, or I need to sit down because, you know, I have I walk up these steps and they just get it. They just understand.

Carly  19:06

They get it. Yeah. And sometimes what I what I find most interesting, is, as much as I’m an advocate, and as much as I’m knowledgeable about all of my illnesses. Sometimes I find them making me look out for things that I hadn’t even thought about. And I’m like, oh, yeah, I should probably pay attention. Yeah, that type of thing. So that’s helpful as well.

Sarah Shaw  19:27

Yeah, I absolutely. Absolutely agree. I think what maybe the audience would like to know is, what advice do you have to share for somebody that is maybe just starting out on their asthma journey, maybe somebody that’s new and is scared and trying to navigate this new chronic illness? What advice do you have to share from the things that you’ve learned on your journey to other people?

Carly 19:54

I would say first and foremost, pay attention to your body. Listen to what it’s telling you. And be mindful about the activities that you do and when, and the environment because there are so many different things that can trigger you, you have to just make sure you’re doing everything you do with intention. And I know it can feel cumbersome at times, “Why do I have to think about this? Why? Why can’t I just be quote unquote, normal,” but it’s in your best interest because number one, you need to breathe. That is, you know, something that we all need. But as we are also now navigating pandemics, with asthma. But just thinking about COVID, and things like that, that complicates things, you know, I can speak from experience as how that has also impacted my asthma and my experience with that, and so, just being super mindful, paying attention to your body, being honest with your loved ones, like I said, that was one of the most important lessons that I learned in recent years, was to let go of the control, be honest. And that’s even when you’re going through your acceptance process with, you know, your disease, with your illness, because there are, you know, there are people Yeah, they say I have asthma, but I don’t, I haven’t had an asthma attack, or you know, and you’re just kind of glib about it until you can’t be. And so I think it’s important to be honest with yourself, be honest with others, so that they can help you, as you kind of navigate your journey with this and understand that it’s a journey. What your asthma looks like, now may not be the same that it’s going to look like in some years to come. And so it’s important to document those things. It’s important to also be honest with your physician, and, you know, have open communication with your entire healthcare team. But also you want to be letting your employer know certain things as much as you can without, you know, that you feel comfortable with, but just enough so that, you know, should something happen, they’re able to help you.

Sarah Shaw  22:06

You just dropped so many nuggets of wisdom that I think anybody just starting out on their journey can really appreciate and take to heart is, you know, it’s like I mentioned, it’s probably really scary when you are diagnosed with something new, or you’re experiencing something new and you don’t really know where to turn what to do. And I think that you really shared a really authentic way to navigate and empower yourself to do what’s best for yourself, to get you to better treatment and better care. So I want to thank you. Thank you, Carly, for joining us today, sharing your nuggets of wisdom. I know that I appreciate it. I know that our listeners will really appreciate that. And thank you for joining us today.

Carly  22:52

Thank you so much for having me and for having the space, you know creating the time for this.

Sarah Shaw  22:57

Absolutely. Thanks for listening to this special episode of The Asthma Podcast, where you hear about the stories of LGBTQ plus asthma patients. We touch on navigating love, relationships and their health. If you liked this episode, please give it an honest five star rating and subscribe. Once again. I’m Sarah Shaw and I will see you next time. This episode of The Asthma Podcast was made possible with support from Amgen and AstraZeneca, sponsors of the Global Healthy Living Foundation.

Narrator  23:37

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Frankie Lee  00:13

I think that like having a support system when you have something like asthma or really any any chronic illness it makes the world of a difference to feel like you’ve got people sort of backing you when you’re going through it.

Sarah Shaw  00:26

Welcome to The Asthma Podcast, a podcast that shares the real stories of people living with asthma. I’m Sarah Shaw, Senior Manager BIPOC Community Outreach at the Global Healthy Living Foundation. In this edition of the asthma podcast, we will dive into the stories of LGBTQ plus asthma patients within the theme of “Love Should Take Your Breath Away, Not Asthma,” exploring how LGBTQ plus individuals navigate identities, relationships, and asthma all at the same time. By sharing these stories, we hope that you feel inspired, heard, and more empowered through you or your loved ones as asthma care journey. In today’s episode, we’ll hear from Frankie Lee, a trans asthma patient who enjoys streaming and works in tech support. Frankie talks to us about the importance of support, listening to your body, and the value of self advocacy. Let’s dive in.

Frankie Lee  01:24

My name is Frankie. I use he/him pronouns. I have asthma, and a little bit about me, I work in tech support. And I’m super into gaming and streaming and all those kinds of things.

Sarah Shaw  01:38

Wonderful. We’re so happy to have you on the podcast here today. So let’s jump right in. The podcast is about asthma. I wanted to talk to you a little bit about what your earliest experience or memory of asthma is. Can you tell us also about like what your experience has been thus far with your journey with asthma?

Frankie Lee  01:55

Yeah, absolutely. I think my asthma actually was at its worst when I was when I was really young, which I think is relatively common. Don’t quote me on that. I feel like that’s the experience I’ve heard from from other people that I know with asthma. So I was in and out of doctors offices a lot as a kid just with like really severe allergies, and then asthma as well. And so I definitely remember, you know, being a kid in in my PE classes and always having my inhaler on me or having to sit out a little bit just because I couldn’t quite keep up. But as I got older, and preventative inhalers became more prominent, I started using those and that made a huge difference for me. So that’s really helped me kind of manage my asthma, sort of going into my adult life. But certainly as a kid, it was really rough. Just because there were a lot of things that I couldn’t quite do, or there were a lot of things that would trigger it definitely grateful for those preventative inhalers now.

Sarah Shaw  02:47

Do you mind talking to us a little bit about the things that your asthma kind of prevented you from doing from a young age? I’m sure that must have been really frustrating as a child.

Frankie Lee  02:55

I was definitely a more active kid. So I did like a lot of sports. I played soccer, and then softball, and it was definitely harder when I couldn’t do like those long distance, those longer distance things and just sort of being outdoors, like like with grass, or pollen and stuff like that, that would sort of trigger my asthma as well. So those aren’t really things that you can avoid. So there were certainly instances of just having to sort of sit out when it came to participating in sports or being in my gym class at school. Just little things that like the other kids were doing that I was sort of sitting on the sidelines to, for a little while so.

Sarah Shaw  03:33

It’s funny, another person who were talking to mentioned PE classes being one of the first times that they realize that they were quote unquote, a little bit different from from their other peers that that was one of the stark differences. Were there other, I’m curious to know, were there other kids your age that were also experiencing similarities like asthma at that young age? Or were you kind of singled out?

Frankie Lee  03:57

Not that I knew of, to be honest, it’s it’s certainly possible, but there weren’t any that I was aware of. I definitely remember it sort of feeling a little bit isolating when I was younger, just because especially taking into account sort of, I’ve always been like sort of a heavier kid. So even when I was younger, being active was a little bit more difficult for me and then adding the asthma on top of it, not that you can’t be healthy and heavy at the same time. But for me, it was a difficult thing. And so that sort of there was the singling out because of that, and then there was the singling out because of the asthma. And I think those lines got kind of blurred when it came to teachers and stuff like that. So I think a lot of the time they actually didn’t believe me and kind of felt like I just wanted to sort of sit on the sidelines. That wasn’t that wasn’t the case. Yeah, that was certainly how it felt at the time for me, you know, it was it was definitely one of those things. It was a little bit difficult, but I can look back at it now and sort of laugh but yeah, as a kid it was a little bit difficult.

Sarah Shaw  04:59

Yeah. especially when you see other kids running around playing, do the things that you want to do and then to have your PE teachers or your teachers, like look at you and be like you want to be doing this actually, no, my chronic illness is preventing me from doing said thing. That’s, that’s unfair. And I’m, I’m glad that you’re able to look back on it now, and, you know, to see what was going on, but I’m sure in the moment in those and it was it was difficult. Yeah. How, how is your asthma now, like now, now that you’ve, I want to say grown up, but now that you’re now that you’re older, how was your experience and with asthma now?

Frankie Lee  05:35

Yeah, it’s much better managed now. I feel like the preventative inhalers for me were sort of the start to kind of getting it under control. I was sort of surviving on rescue inhalers prior to that. So now I’m just sort of on my two puffs in the morning, two puffs at night, preventative inhaler. And then I really can’t remember the last time I had an asthma attack, which is obviously, really nice. That’s really great. Yeah, I know, that’s not the case for everybody with asthma. So I’m really lucky that that those inhalers have made a huge difference for me.

Sarah Shaw  06:07

I’m so glad that you have treatment, and that’s helping you manage your asthma conditions. Not switching gears, but kind of going a little bit deeper. The theme of our campaign is called “Love Should Take Your Breath Away, Not Asthma,” what does that mean to you? What is love in terms of friendships, companionship, relationships mean to you in terms of your asthma care?

Frankie Lee  06:30

I think it means everything I mean, especially with what we were just talking about being a kid and experiencing sort of just that extra added layer of sort of awkwardness, just navigating being a kid in school, and, and all of that. Having support and love when you come home from school from the day those are like, that’s really key. My partner now also obviously, is is fantastic, and has been super understanding and helpful with with stuff like that. I think that like having a support system, when you have something like asthma, or really any chronic illness is huge. It makes the world of a difference to feel like you’ve got people sort of backing you when you’re going through it and having a rough time. So yeah, I have it’s everything for sure.

Sarah Shaw  07:18

Absolutely. And I think just having the support of not only the people that know what you’re going through, but maybe the people that don’t know what you’re going through having that extra validation and being like I see you, I may not know exactly what you’re experiencing, but I want to figure out how to help you. And that actually is going into my next question of I know, you mentioned your partner, how has asthma impacted your relationship? And how do you and your partner plan for attacks? Or how do you talk about asthma with them? Do you want to share with our listeners about how to you know, navigate that?

Frankie Lee  07:54

My partner also has chronic illness. And so that was something that I was aware of going into our relationship. And it was really like a point of understanding between us. It was something that we both sort of got in different ways. So it’s never been an issue, I think the biggest thing that’s been a struggle that I think some people might relate to is is COVID, actually. With COVID, well, I should preface that my partner and I are long distance by like 3000 miles, or something close to that. And so during COVID and even now traveling for me was just sort of out of the question, it was, you know, with, with how much COVID affects your lungs, I just didn’t feel like I could risk that it was too scary for me. And still I still struggle with with being afraid about that. And so the fact that they my partner was so understanding about being hesitant about traveling, and being with people really made a big difference for me to not be anxious on top of being anxious. They were so understanding and we spent tons of time together on voice calls, playing games. I’m really, really grateful for that.

Sarah Shaw  09:04

I’m so glad that you have that supportive relationship and someone that it makes it a little bit easier when you’re in a friendship with somebody or a relationship with somebody or companionship with somebody who already gets it and has a chronic illness. All I can say is I hope having having these conversations, having people listened to these stories, I want that to become the standard for partnerships, for relationships, for friendships, just that having that added layer of empathy and patience and understanding because I feel like that can make a world of difference for somebody living with chronic illness.

Frankie Lee  09:35

100%. I feel like it’s rare to find that. It can be really hard to find that. I know that’s not the experience for everybody and it should be 100%.

Sarah Shaw  09:43

Absolutely. Thinking about you know, where we started this conversation where you’re talking about how limited and what you were able to do as a child to now what you’re able to do what have you gained back from a better asthma treatment?

Frankie Lee  09:57

That’s a tough question for me actually. And I know that it probably probably isn’t supposed to be. But it is. I think, like, there’s a lot wrapped up in what I really wanted to do as a kid versus what I’m able to do now. And I don’t know that I realized that until this moment. But I do think that sort of the experience of sort of not being able to do all of the things that all the other kids were doing, or at least not do it the same way that they were doing it definitely held a lot of weight for me. It was something that that I really struggled with. And so I think that now that I’m older, I’ve sort of kept away from those things, just because they always felt out of the question. So maybe that’s something I need to explore a little bit more, because I don’t know that I ever did that, that ever really tried to re-explore that. But I will say being able to manage my asthma, it makes a world of a difference in terms of your mental health, like having struggles with breathing can be really exhausting. And I remember just sort of waking up certain nights as a kid and, and just being like, just not being able to breathe, and that doesn’t happen anymore. And I think that kind of thing where I can sleep through the night, and not have an issue like that makes just such a huge difference for me emotionally. Being able to get a full night’s sleep, and experience that I think is one of the biggest things. So yeah, I think that’s what I would say right now. Definitely something to revisit and re explore for me.

Sarah Shaw  11:23

Well, first of all, I think one that’s really scary to not be able to breathe in the middle of the night. And I’m glad that you’ve been able to reclaim that part of your life back, that you’ve you’re on better treatments, that you’ve able to have your asthma under control, and that you’re able to get a good night’s sleep. Because I’ll tell you, not having a good night’s sleep, and you know, this like can disrupt everything from thinking to your mental to anxiety to depression, like there’s all these things that can come in that that can interrupt not having a good night’s sleep. So I’m glad that you were able to get that back into your life. And I think it’s Okay, that you’re saying that, you know, you haven’t really had a chance to go back and do the things that you weren’t able to do as a kid. Like I think that that, that that’s what this journey is all about is sitting down and reflecting about, hey, maybe now you know, this is something that I am at a place where I can do that. And there’s no timeline right of when you should or should not be doing something. I live with a few chronic illnesses, one of them being chronic migraine, and there are some things that I wouldn’t want to go back and try and do just yet because I’m anxious about, you know, possibly triggering a migraine attack. But then there are other things that I have started to do again, where I’m like, wow, I haven’t been able to do that in like seven years. And I was able to do it for like the first time now that I have, you know, certain things under control. And there’s no timeline on that. So I think that that’s completely up to up to your own roadmap of when and you know, it’s all about pacing. I think that that’s so important for us to remember.

Frankie Lee  12:54

Yeah, absolutely. You can’t really force it. You got to just kind of listen to your body and listen to your yourself. Absolutely.

Sarah Shaw  13:02

Yeah. And you have to, like you said have like the also the support of your loved ones there to kind of, you know, like encourage you and guide you and be be your cheerleaders so to speak.

Frankie Lee  13:13

Yeah, absolutely.

Sarah Shaw  13:14

Being a member of the LGBTQ community, how has the LGBTQ community supported you in your asthma journey? Or what communities have you found that have helped you in your journey?

Frankie Lee  13:27

That’s a really good question. And I’ll be totally honest, I guess in my adult life, I haven’t really been part of a super close knit sort of community that I’ve shared that with. I mean, I just haven’t been part of much of like a big LGBTQ community in general. Online, I think would be the closest to that. And a lot of the friends that I have now are from sort of queer online communities that I’ve been a part of, and they’ve been supportive of, of me throughout everything, whether it was transitioning, or asthma, or, you know, surgeries, anything. The queer community is definitely, at least a queer community that I’ve been a part of has been just fantastic. I mean, completely supportive always, you know, sending, sending little gifts of support kind words, even just like coming to the streams that I do to talk about whatever we, you know, most of my community that I have in my stream is queer. And I just find that there’s just a lot of empathy, and a lot of kindness and a lot of support. I think asking questions is really helpful. And that’s been a constant in that and something that I’ve really appreciated. So just trying to gain understanding about something, and then actually actioning on that understanding is huge. So I guess I would say that asthma hasn’t come up a ton in my queer experience, at least in terms of community, but when it has, it’s never been an issue and it’s always been support and if anything just trying to learn more about it.

Sarah Shaw  15:00

I think that that’s the only way to do it. I feel like just having a community to support you is like the first big step when, regardless of where you’re at in your life. I know that myself and my partner, we have a very, very small, like, not a huge, you know, queer community, but the community that we have, you know, it’s sometimes it’s a little when I were when I first started to try and talk to them about my chronic illness, I was so scared, I was like, Oh, my gosh, are they gonna judge me? Are they gonna, you know, and there was none of that, right? There was just this extra, I don’t know, layer of empathy and understanding, I feel like because we’re from queer communities that we already know, or at least for me, like what it’s like to be discriminated against, and we so I feel like there’s just this added extra umph of love that we able to give. So having these difficult conversations that would normally be really stressful and other situations are just a little bit easier, at least in my situation. I don’t know if that’s been the case for you.

Frankie Lee  15:59

100%. I think that experiencing any sort of like discrimination, in some ways, sort of allows you, and this is not me sensationalizing experiencing discrimination. People should never have to go through that. But I think that having to go through that adds some sort of layer of being able to understand people, put yourself in other people’s shoes. That kind of empathy is, is really special, I think, and unique and being able to experience be on the receiving end of that, or the the giving end of that is a really special experience. Because there’s just like this level of judgment that is completely out the window, in my opinion, it’s just sort of sort of taken away, and you don’t have to worry about someone being like, “What the heck is that about?” They’re just listen, there’s just listening. Most of the time. Of course, there’s there’s a lot of, you know, intersections and layers to that. But I think the listening piece is, is really important.

Sarah Shaw  16:56

Absolutely. I 100% agree. In that same vein, I wanted to ask a little bit about you’ve mentioned transitioning. I want to know, like what you’ve been able to do in your journey, as an LGBTQ plus patient to talk to your provider about your gender identity. How can we make more doctor’s offices more welcoming and more affirming for the LGBTQ plus community? I think that’s an important thing that we that you might have insight on.

Frankie Lee  17:26

I think that’s an awesome question, what I would say, just to give a little bit of context. First doctor I went to in regards to transitioning was when I didn’t have health insurance. And so cost was a big piece of that, for me. I did a ton of research on sort of where to go, especially because I was nervous about the conversation. I was nervous about the reaction from the doctor, how I’d be treated. And so I actually found queer center up in Portland, where I lived at the time. And they had sort of like a small doctor’s office, that was a part of their sort of what they did at that queer center. The doctor there was fantastic. He was super understanding, they just sort of got it. And because they were, they were just part of the community. So they knew already, which was a really fantastic first experience, and something that I would definitely recommend to anyone who’s sort of at those beginning stages of transitioning. It’s really important to sort of have that affirmation. I know that’s not accessible for everybody. But what I will say is that those queer centers, if they have something like that, accessibility was a really big thing for me at the time, because I didn’t have health insurance. And they made a point to work with me. And I think most of the queer centers are really understanding about financial situations as well. So they’re a good starting point. That being said, that experience was a stark contrast between being with with queer doctors. So going from that to doctors who weren’t queer was really difficult. At the time, and this was only four years ago, but still, at the time, I think that it wasn’t as common to even ask for a patient’s pronouns. And so if they didn’t really see you as who you felt you feel you are. They didn’t. They didn’t regard you that way. And they didn’t ask. I think it’s better now, when I got my surgery, even if it was a doctor who I wasn’t working with, they would still ask and they would make a point to ask most of the time, but there were always those times, especially over the phone where, you know, there’s the ma’am, there’s the it’s just like by default, it comes out and it’s uncomfortable. And I think that the doctors still aren’t quite thinking that far ahead. I think that that the biggest thing when you’re going to a doctor’s office is that you shouldn’t have to be going to a doctor who is trans or queer, to get affirmative care, and you shouldn’t be having to go for something trans related to get affirmative care. I should be able to go to a doctor for asthma and still be asked what my pronouns are and then have the doctor use those pronouns. It’s not that complicated to do that. And I don’t think that happens often enough, especially from state to state, you’re going to have a different experience. So I think it’s so important to, for doctors to start thinking more about that. It wasn’t an experience I had with any doctor that I went to, that wasn’t for trans affirming care. I think advocating for yourself, while it’s really difficult, is so important. Correcting them, when they misgender, you is so important. It’s okay to not also. It takes a lot of energy to do that all the time. But if you can do it, do it. It’s so important to advocate for yourself to have the care that you deserve, especially when you’re going through any number of any kind of illness. I just think it’s really important. It was really hard for me, but it made a difference.

Sarah Shaw  20:54

I like all of what you just said. But I especially like what you said about that. It’s it’s a process to to advocate, it’s not always easy. And I think that a lot of people maybe not inside the community think well, if you feel uncomfortable, speak up, sometimes it’s not safe. Sometimes it’s sometimes it’s just really uncomfortable. Sometimes you’re not at that level yet, with maybe it’s the very first time that you’re seeing this doctor, and you haven’t established a relationship with them yet. There are many, many different variables of why maybe you don’t advocate but I think being gentle with yourself and having grace. I remember the very first time a doctor actually apologized to me. I think we had done like five sessions together and on like the sixth session, she was like, “You know what, I have to apologize to you.” And I was like, “Why?” She’s like, “When I first met you, I didn’t ask your pronouns. And I noticed on your, your intake form that you said that you were lesbian.” And I was like, Yes, like that is you know, and, and I think just having that, you know, she had that reflection, and she had that grace, and she apologized. And like after it, like, I noticed that like after that, like a lot of my walls went down. So you have to have that level of trust and that level of grace and that level of understanding and a level of empathy on both sides where you’re gonna make mistakes. And I think you have to get be in a level of like, you’re saying to advocate for yourself. She never misgendered me, she never did any of that. But I didn’t make it a point to say, “Oh, by the way, hey, here are my pronouns.” Now, you know, I’ve been out for quite a few years now, I still get nervous bringing it up at the doctor’s office thing, my pronouns are she/her, I’m in a queer relationship, I still get really, you know, I get anxious talking about it. But I think the more we see our doctors offices, you know, maybe writing on the intake. Having something as simple, as my OBGYN office, they have the rainbow flag, like printed on their little thing. And like, that is just like, okay, I’m in a safer space. And I can like, be myself. Just having little signals like that. I think just like little Bat Signals alerts to us to know that, hey, you’re, you’re you’re in a, you’re in a safe place. Maybe there’s gonna be mistakes made. But if the mistakes are made, it’s okay for us to speak up a little bit about it saying, “Hey, by the way, you misgendered me,” or, you know, “You’re using my dead name,” or your you know, something. Yeah. So I appreciate what you’re saying. This has been such a great conversation so far. And I had just have one final question. And that’s about advice. And what advice do you have for someone that maybe is just starting out on their asthma journey? Maybe they just got diagnosed or maybe they think they have asthma, but like, aren’t sure what to do. What advice would you give to somebody starting out?

Frankie Lee  23:34

I think, and it’s something that you just said, but I think it applies to this also, which is be gentle with yourself. You don’t have to push yourself beyond what your body is telling you that you can do in that moment. I think that’s the biggest thing is, certainly in my own experience, it’s been easy to want to push myself past my body’s limits, because that’s what it seemed like everyone else was doing, or I felt like what was expected of me. You don’t have to do that. I think the most important thing is to listen to your body, listen to what your body is telling you and do that. It’s okay to just lay down for a while. It’s okay to sit it out. It’s okay to pass on stuff. If that’s what your body needs. I think that’s that’s okay to do that. Just being gentle with yourself when you’re not feeling well is so important. I think also finding community, finding support, finding people who can sort of be there for you. If it’s something that you’re sort of just starting out with, I think that’s really, really important. Talking to people about it. Just sort of pushing yourself to talk about it is really going to help in the long run. Because you’ll have people who understand what you’re going through, or at least want to support you and be there for you through it. So I think that’s really important. Also, there’s a million things in terms of treatment that you could say. But everyone’s so different. And so I think that the biggest thing that you can do if you’re just starting out on your asthma journey is really start to explore it. If care is accessible to you, preventative inhalers are incredible and, and sort of researching that is really, really important. But I think the biggest thing that’s ever gotten me through is having support, having community, and really listening to my body and what my body needed, so.

Sarah Shaw  25:17

Those are some really, really great pieces of advice. And I know if I were just starting out on my asthma journey, and I listened to this, it would make me feel a lot better knowing that one I’m not alone. I’m not the only one going through it and that there is a community out there that is there to support you and, and get you through. So thank you, Frankie for being a part of this community. Thank you for coming on podcast and sharing your your journey, your expertise, your experience and your advice with us. It’s been a pleasure.

Frankie Lee  25:45

Absolutely. Thank you for having me.

Sarah Shaw  25:47

Thanks for listening to this special episode of The Asthma Podcast, where you hear about the stories of LGBTQ plus asthma patients. We touch on navigating love, relationships, and their health. If you liked this episode, please give it an honest five star rating and subscribe. Once again. I’m Sarah Shaw, and I will see you next time. This episode of The Asthma Podcast was made possible with support from Amgen and AstraZeneca, sponsors of the Global Healthy Living Foundation.

Narrator  26:23

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.