Sleep Apnea Squad: Fighting Sleep Apnea Shame & Stigma

Project Sleep Podcast
“Fighting Sleep Apnea Shame & Stigma”
(Sleep Apnea Squad Episode 5)

Emma Cooksey is the Sleep Apnea Program Manager at Project Sleep and host of the Sleep Apnea Squad podcast series. She was diagnosed with obstructive sleep apnea at the age of 30, after more than a decade of unexplained health problems. Once diagnosed, she felt alone while navigating life with sleep apnea and adjusting to CPAP therapy. In 2020, Emma began hosting a weekly podcast, “Sleep Apnea Stories.” By sharing her journey and encouraging others to tell their stories, Emma has been breaking down stereotypes of sleep apnea while also raising awareness of symptoms and treatment options. She is also on the Board of Directors at Project Sleep. 

Jason Webb lives in North Queensland with his girlfriend and comes from a family of four, including a younger brother. He enjoys gardening, fishing, and traveling. Diagnosed with moderate obstructive sleep apnea at 28 after experiencing symptoms for about a year, he faced numerous challenges in understanding and managing his condition. With no specialist in his rural town, he struggled to navigate his diagnosis alone. He has undergone nasal surgery to correct a deviated sept, battled depression, and now happily wears a CPAP every night. Having faced these obstacles firsthand, he is passionate about helping others on their sleep apnea journey, so they don’t have to go through the same struggles alone. 

Edgar Castro Tello is Venezuelan born and raised, but now calls Tampa, Florida his more hid, tropical home, where he lives with his partner, Frankie. He’s an environmental scientist with a passion for programs and policy in the field of refuse and waste reduction. His career started in environmental consulting with migratory birds and informal education in zoos, quickly falling in love with public service and policy change. He was diagnosed with severe obstructive sleep apnea in 2016 at the age of 25; a diagnosis that was too late in the making. Edgar hopes his story will shed some light on the prevalence of sleeping disorders in the gay bear community and early signs from teenage years.

Podcast transcription provided by Mirela Starlight
More information about Sleep Apnea Squad
Access the “Fighting Sleep Apnea Shame & Stigma” toolkit
Project Sleep’s Sleep Helpline

Emma in intro: Welcome to the Project Sleep Podcast. For those of you who’ve listened before you might be expecting to hear from Julie Flygare, Project Sleep’s Founder and CEO, but for this special series of podcasts on sleep apnea topics, I’ll be your host. I’m Emma Cooksey, the Sleep Apnea Program Manager here at Project Sleep and I’m so glad you’re here. Project Sleep is a 501(c)(3) non-profit organization dedicated to raising awareness and advocating for sleep health, sleep equity and sleep disorders. 

Emma in intro: We created the Sleep Apnea Squad series to allow listeners to dive deeper into specific topics relevant to living with sleep apnea. For more on today’s topic please check out our corresponding toolkit which is available for free on our website to download, print and share. The link to the toolkit and other Sleep Apnea Squad topics is in the show notes, or you can find the Sleep Apnea Squad page at project-sleep.com. 

Emma in intro: On this podcast all guests express their own opinions. While medical diagnosis and treatment options are discussed for educational purposes, this information should not be taken as medical advice. Each person’s experience is so unique which is why it’s so important to consult your own medical team while making decisions about your own health. 

Emma in intro: If you haven’t done so yet, please hit the subscribe button so you never miss a Project Sleep podcast episode and if you enjoyed the podcast please leave us a rating or review wherever you listen so that we can reach more listeners and raise more awareness. So without further ado, here’s today’s Sleep Apnea Squad episode. 

Emma: So welcome everybody. Today we’re talking about fighting sleep apnea shame and stigma. And so just to kind of explain why I chose this topic, a lot of this is about people sharing their stories and I just really hear over and over again from people that they have some embarrassment around this diagnosis of sleep apnea or they feel like they’re experiencing stigma. 

Emma: So I thought it was really important to address this topic head on and really share our experiences and just talk about it because I think it doesn’t go away if we just ignore it. So on to our special guests. So I’m just going to do a little intro for each of you. 

Emma: So, Jason Webb lives in North Queensland in Australia with his girlfriend and comes from a family of four, including a younger brother. He enjoys gardening, fishing, and traveling. He was diagnosed with moderate obstructive sleep apnea at the age of 28 after experiencing symptoms for about a year. He faced numerous challenges in understanding and managing his condition, with no specialist in his rural town.

Emma: And we’re going to talk about how rural his rural town is. It’s pretty rural. He struggled to navigate his diagnosis alone. He has undergone nasal surgery to correct a deviated septum, battled depression, and now happily wears a CPAP every night. Having faced these obstacles firsthand, he’s passionate about helping others on their obstructive sleep apnea journey so they don’t have to go through the same struggles alone. 

Emma: And then next we have Edgar. So Edgar Castro Tello is Venezuelan born and raised, but now calls Tampa, Florida his more humid tropical home where he lives with his partner Frankie. He’s an environmental scientist with a passion for programs and policy in the field of refuse and waste reduction. 

Emma: His career started in environmental consulting with migratory birds and informal education in zoos. And he quickly fell in love with public service and policy change. Edgar was diagnosed with severe obstructive sleep apnea in 2016 at the age of 25, a diagnosis that he felt was too late in the making. 

Emma: Edgar hopes his story will shed some light on the prevalence of sleep disorders in the gay bear community and will help others spot early signs of sleep apnea in their teenage years. It’s also worth mentioning Edgar is on Project Sleep’s Expert Advisory board. So we really appreciate him. And he’s the star of this new campaign, so we’ll talk more about that later.

Emma: So before we get to our guests and I can stop talking at everyone— (laughs) —I’m just going to highlight a few things that I think will come out in our discussion today and that I really hope that we can really shine a light on. 

Emma: So first thing, like the three of us are living with sleep apnea but we’re not researchers into shame and stigma. So we’ll start by just looking at some of the definitions for them and explain just how they show up. 

Emma: And the most important things really are that your story is so powerful. So for everybody watching this, whether you— you know, it means sharing however that means— like sharing your story in your own community with friends and family can be super powerful. Or if you want to get more involved we certainly can share ways that you can do that. 

Emma: And the last thing really is you’re not alone and there’s strength and support in our sleep apnea community. So, I’m going to stop sharing, but I’d love it for each of you, Edgar and Jase, just to start with a little bit about— for anybody that hasn’t heard your story before, just a little bit about the symptoms that you experienced, what you noticed. How you got like— what your journey to diagnosis looked like, how long that took. And just if you want to start there, I think it’d be really great for everybody to hear. Who wants to go first? Do you want to go first, Edgar? 

Edgar: Sure, yeah. My symptoms— and I remember symptoms were seen and I experienced them when I was a teenager— and the symptoms that I was feeling was exhausted throughout the day, sleepy. I would need to take a nap every single day after getting home from school. It was not an option. 

Edgar: And then eventually those symptoms started to get worse and worse— with sore throat, thinking I was getting sick every time I would go to sleep. Waking up with a headache, not feeling refreshed, and then feeling like I was sick but not really sick. And so into my— into my late teens, that’s when I started to question myself a little bit, kind of creating this self-doubt sort of thing, and this complex started forming. 

Edgar: And then in my 20s, as I was going through higher education, I’m just even baffled now thinking about it, like I don’t know how I got through university with all of the symptoms that I was experiencing, the same thing. 

Edgar: Even getting really sleepy and drowsy at the wheel which was very dangerous and so those things started to get to a point where I couldn’t ignore them anymore. But eventually when I did get the diagnosis it was a relief, and to know that there was some kind of treatment available. 

Emma: Yeah, I relate so much to that, especially the feeling drives you while driving part. It can be so scary. So, Jase, did you want to go next and just share with us a little bit about what your symptoms looked like before you got the diagnosis and how long it took, that kind of thing? 

Jason: Yeah, of course. I struggled a lot as a teenager and young adult with anxiety. And that was probably the main thing looking back that I struggled with. I don’t— I can’t really remember being too sleepy or anything like that. When I was around 27, I had— it was kind of a change of jobs, it was very stressful, and I had what I kind of think was like a bit of a mental breakdown at the time. I was completely like run down. 

Jason: I was getting headaches, brain fog, confusion. Very similar to Edgar. Falling asleep at the wheel— things like that. So that kind of prompted me to go to the doctors and went down a path of treating the anxiety and depression. Which was pretty much just what we were treating. And it took me about a year of going through different doctors until I found one who decided to give me a sleep study. And then got on to CPAP from there. 

Emma: Yeah, I think mental health challenges that come with sleep apnea are not talked about enough. And that certainly was part of my experience. So I feel like I’ve told my story so many times that everybody’s heard it and I don’t want to bore everyone, but I would say like that’s one thing I relate to so much. 

Emma: Like I spent 10 years trying to get a diagnosis, and— with sleep apnea— and certainly I feel like being diagnosed with anxiety and depression, in some ways was— I felt like, you know, the doctor was kind of listening to some of the stuff I was saying— but that wasn’t the whole picture. And so in some ways that kind of— you know, we did some treatment for the anxiety and depression. But I still didn’t feel like we got to the root of it until I actually got the diagnosis with sleep apnea. 

Emma: Yeah. Okay. So, I was going to just share a little bit about— thank you both so much for sharing that. I was going to just share a little bit about some definitions. So, Brene Brown is probably the most famous shame researcher there is, and she defines shame as the intensely painful feeling of experience— or experience of believing that we are flawed and therefore unworthy of love and belonging. 

Emma: And I racked my brain, I know we were talking before we came on live, and I was trying to think of experiences I’d had that kind of measure up to that definition and the one that I came up with was so long ago now. I got my diagnosis 17 years ago. So, this was really shortly after I got the diagnosis. 

Emma: I was at a cookout here in someone’s backyard. I live in suburban northeast Florida, so it’s pretty common to get invited to kid’s birthday parties in the backyard. So that was setting the scene, and my eldest daughter wasn’t even one yet at this point. And I’d just been diagnosed and I was in that early stage where I was kind of struggling with CPAP. 

Emma: And it’s good for people listening to know that I’m Scottish and so I probably only had lived in America for maybe like a bit more than a year at this point. And Scottish people, if you say, how are you doing? Scottish people will tell you exactly how they’re doing. Like they’ll say, oh, I have a cold and, you know, my husband left me. 

Emma: And all these things, when you just ask how they were doing and you expect them to say, great, how are you? You know. So this guy asked me how I was doing and he said, like, I haven’t seen you for about a month, you know, what have you guys been up to? And I said, well, actually, I got this diagnosis with sleep apnea and I’ve started using this thing called a CPAP machine where I wear a mask at night. So that— you know, I’m kind of trying to get used to that. 

Emma: And I’ll never forget, he looked at me and he kind of just went, he kind of almost laughed and he said, sleep apnea? Isn’t that something that big old truckers have? Like, how come you have that? As though there was something like really wrong with me, you know. 

Emma: Like, and I didn’t know anyone else in my life with sleep apnea, so when he said that, it made me feel—like, I went bright red— I was really embarrassed, and— I mean I think ashamed, right? I just kind of said, oh, right, yeah. Like— and so that comment was enough, by itself, to mean that I didn’t want to share about this diagnosis or talk about the fact that I was using CPAP for about 10 years. 

Emma: Like I just didn’t share with anybody because I felt like, you know, I was this odd one out that had this diagnosis that only older overweight men are supposed to have and— you know, there was something wrong with me. So that’s kind of my experience, I guess, to kind of like illustrate like what that feels like. Do either of you have anything you can share along those lines? 

Edgar: Well, I think to this day I still get that reaction from select people. And they mention, it’s like, wait, you have sleep apnea? How do you have sleep apnea? And in the moment it’s— of course to me it’s a ridiculous question, but I know that they’re asking because they don’t know the roots of how sleep apnea can happen. It’s more than just one factor. It’s different many things and it can be different many things. 

Edgar: And I get that now. People at work, they may not know that— because I’m still relatively younger than them, they kind of see me as like more able. But that’s still the stigma of like, oh you’re younger so you’re more able to do this and this and that. And that’s still happening now, yeah, which is very interesting. So, it’s my moment to educate and to let them know that it’s—

Emma: That’s why we’re here, right? 

Edgar: Yeah, that’s why we’re here. And there wasn’t— before those moments, there wasn’t like a huge moment of shame that somebody pushed on me, it was something that I did myself. I’m sure we’ll talk about it later about— maybe like about dating, but it really was this— I didn’t know how I could share this— that I didn’t really see many other people talking about either. 

Emma: Mm-hmm.

Edgar: So that was kind of my— I was very apprehensive to sharing about it, only because I didn’t know how to share about it. And now it’s different, of course. 

Emma: Yeah— (laughing) you’re kind of sharing about it now. (laughs)

(Edgar laughing)

Emma: Yeah. What about you, Jase? 

Jason: Yeah, pretty much the same. Kind of what Edgar was just saying then, is that I didn’t really experience— I can’t think of too many times where I experienced shame or stigma or someone particularly making me feel bad because— I didn’t tell anyone. Like I didn’t tell anyone. And those that I did tell— a few friends and stuff at work, I would actually whisper it. I’d say, you know, I would whisper, oh, I’ve got sleep apnea. 

Jason: And I’ve had— the GP that I went to, told me that I couldn’t have sleep apnea. I was too young and too slim to have sleep apnea. That’s, you know, I’ve had a dentist tell me that you know, because I asked about my mouth and things like that, what he thought, and he said, oh, you don’t want to go down the road of sleep apnea, you’ll need a CPAP. I was like, I’m on CPAP. 

Jason: So— (laughs) so there’s this constant thing of just people not knowing. Like Edgar said, people don’t know. And if they think they’re too young or too slim to have sleep apnea, they’re never going to explore that. And exactly like you said, this is why we’re here. We want to help. (laughs)

Emma: Yeah, I certainly, the— the doctor thing is really interesting. I think that people don’t realize that primary care physicians— or do you call them GPS in Australia? 

Jason: Yes.

Emma: Yeah, it’s GPs in the UK as well. So GPs or primary care physicians really don’t get a lot of training in sleep or sleep disorders. So I think that a lot— I mean of course they’re doing their best with a huge workload. 

Jason: Absolutely.

Emma: A lot of the attitude of like, you’re too young, you’re too thin. Like back in the day when I was in my 20s I actually heard that a fair amount. Like they were like, oh a lot of these symptoms seem like sleep apnea, but we don’t really see that in people that look like you. So that’s what this whole— that’s what all my work’s about, really. To change that. So I’m going to go back and just share— just to kind of go through the definition of stigma a little bit. 

Emma: Because I think stigma in health can be really— I mean I’m learning this for the first time, as I said I’m not a researcher or an expert, but it is really interesting to think at the different levels. So exactly what we were just talking about, like the self-perception of like the individual level where you think about how you’ll be perceived if you’re wearing a CPAP or just talking about this diagnosis. 

Emma: So just to kind of explain these different levels, like there’s stigma at all different levels of society. So when I kind of thought about the different levels, one of them I thought about, well, I think we already mentioned this— that you were mentioning, Jase, to people at work. And so in the community, I know like being perceived as lazy is a big element. 

Emma: Like you don’t want work colleagues to think that you’re not going to pull your weight because of sleep apnea, because they don’t, you know, understand— they’re not very understanding of what that is. 

Emma: And we already talked a little bit about the institutional level. So, if primary care physicians aren’t well trained in sleep and sleep disorders, they might not recognize that people who don’t fit a certain— of course, there are going to be a lot of people in the older overweight men category that have a lot of risk factors— but I think it’s just asking more questions and making sure that everyone who has enough signs and symptoms gets properly screened and tested for sleep apnea. 

Emma: There’s also weight bias is a huge thing in healthcare settings that a lot of people, especially women, feel stigma around that and so that stops them from actually going to the doctor which is a really big problem. There’s law and policy and also media and entertainment. 

Emma: So the media and entertainment part is really interesting because that can really shape public perceptions, right, about things. So if you see jokes about CPAP in television and media like you, you know, form your ideas about that condition from those. So I think that that’s something that’s starting to hopefully change. But these were the different levels. 

Emma: And the definition of stigma around health issues is negative attitudes, beliefs, behaviors— directed towards individuals or groups experiencing a specific condition. So just to kind of like share that with everyone. 

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Emma: So our first question is actually quite relevant to what we were kind of touching on before. So question number one is, does anyone have anecdotes about dating and using CPAP with a new partner? So within however much you’re comfortable sharing. 

Emma: So I have nothing to add to this conversation because I was already married when I got this diagnosis and I had a husband who, you know, had seen how much I was really struggling without any treatment for this and once I got the diagnosis, he was really encouraging of whatever I had to do to feel better. So, I pass it over to the two of you because you’re— you have a lot more experience of that than I do. 

Edgar: Yeah, I got diagnosed in 2016, I was single and I was trying to date and— but at the same time I was going through the whole diagnosis journey and choosing my mask and all of that equipment. And that— it really— it really hit me when I put it on my nightstand. 

Edgar: And again, I didn’t know how I was going to communicate this to someone that I was interested in dating and bringing them over and having to explain to them. I did learn quickly that as an older gay man— as we’ve talked about before, Emma— in the gay bear community, that it is pretty prevalent. It is prevalent to meet men that know what a CPAP machine is in this community, of course. So, I didn’t know that and I, because once again, I didn’t hear about it before. 

Emma: Yeah. 

Edgar: And I was just shocked every time I would tell someone that, oh this is this is my CPAP and they’re like, oh yeah I know what that is, I’ve seen some of that before, I just didn’t know what it does. So it was then my moment to kind of educate a little bit. But I did feel the internalized shame. It was there. Because, I also felt— to go off on what Jason was saying about like, well you’re too— if you’re too thin— why do you have sleep apnea? 

Edgar: I felt like talking about sleep apnea with any person was an in for them to talk about my body shape, as well. Because sometimes that also makes people think that they can talk about your body weight when you say that you have sleep apnea. 

Edgar: When that’s like, no that’s not an invitation for you to talk about my body weight, but maybe if you have questions about how I cope with it and how I deal with it and how I manage it, that’s— those are welcome. But we are not here to talk about my body weight because we’re all diagnosed at different shapes, different sizes. It’s not— one is not the only answer. 

Edgar: But, yeah, now I’m with my partner Frankie, and when I got to introduce him to the machine, it was really easy with him. He was just the right person for me—(laughs) in the end of it all, no matter what, to be able to understand what that meant. 

Edgar: And yeah, there were challenges with sleeping over and him kind of hearing the mask leak sometimes. And took— it took a long time to go through that learning curve, but again, if it’s the right person, they will understand and they will be accommodating to your experience. 

Emma: Yeah. 

Jason: Yeah, I can— I can definitely relate. So during the whole process of diagnosis and stuff, I kind of wasn’t in a good way. I was doing lots of tests and back and forth, doctors and specialists. So the whole dating thing kind of got paused. I just put everything on pause. And then yeah, it was really embarrassing— Edgar put it really well, how you put the CPAP machine on your nightstand, you’re like, well, this is it. 

Jason: You know, I was 28 years old, single, with this CPAP. Like, I get that embarrassment and that shame. It was difficult. But when I did start dating— I think one of the best things I did is, who— my partner now, I told her that I had OSA. And it was difficult for me, I remember like letting her know, like, hey, I have to wear a CPAP. And I was quite emotional about it. But it was the biggest relief to tell this person that you care about that you have this condition. 

Jason: And I mean, I didn’t wear the— I didn’t wear the mask for like the first month, every time I went over to her place, ‘cause I was still embarrassed. And then when I did use it, I’d lay away from her so she couldn’t see me with the mask on, like— it is difficult. But—  

Emma: How much of that do you think— what I’m really interested in, is how much of that— is your own perceptions of yourself and how you think you look and things and how much of that was coming from her. Like was she actually quite supportive, or—

Jason: Absolutely.

Emma: Yeah. 

Jason: Absolutely. It was all coming from me and the way I felt about myself wearing this. Again, I think from the stigma around— and shame that’s in our society, unfortunately. I thought, why am I wearing this, you know. 

Emma: Yeah, I find now that my husband’s like, the— I mean I have slept with CPAP for I mean, 16— you know, nearly 17 years, or whatever it is. And so now it’s just so a part of the routine that no one would ever question, but in the early days even— my husband was the biggest cheerleader about the whole thing. Just because he saw— you know, me go from— really falling asleep at the wheel, and having this— like my quality of life was not as good. 

Emma: And so when he saw that I was starting to feel better, like it became this thing, where I would be like, oh, I don’t know, early on. And he would just be like, you’ve got to just keep going. And yeah, so it is— I think oftentimes I hear that people’s partners are actually pretty understanding. 

Emma: Of course, there’s all different experiences. But yeah. Well that’s— thank you so much for join— for explaining those dating— yeah, I don’t have any firsthand experience from the dating thing. I have plenty of experience from undiagnosed sleep apnea and dating, but that’s not relevant today. (laughs)

Emma: Question two is, “Does anyone have experience of successful surgery? My OSA started suddenly after a dentist gave me a night guard that created an open bite and realigned my jaw.” Interesting. So I would say, did you want to share a little bit? I think, Jase, you’ve had nasal surgery, right, which is not technically surgery for obstructive sleep apnea but we’ve talked before when we did our session on treatment options. 

Emma: But yeah sometimes people can find nasal surgery, if they have a problem with their nose— nasal surgery can really help with how well they can use CPAP or oral appliances or those things. Jase, did you just want to tell us about how that surgery went for you? 

Jason: Yeah, for sure. So, my deviated septum— so I was only breathing through one side of my nose, and that actually was the reason that I got a sleep study. So that— the fact that I couldn’t breathe properly through my nose led me to kind of get that sleep study. So I did get surgery to correct that and straighten my nose. 

Jason: Which is definitely beneficial on a day-to-day basis being able to breathe properly through your nose. And it was incredibly difficult to use CPAP prior to that. Trying to push air up a blocked garden hose, or something like that, you know. And so now I wear a nasal mask, I don’t wear a full face. And it’s beautiful. So yeah that was— for me it was necessary.

Emma: And I need to have my nose fixed. (laughs) We need to talk more— off air. But yeah, I hear that a lot from people where—deviated septums are really common. I think that people underestimate how that can impact like, which kind of masks you can use, right, for CPAP. 

Emma: Because there are ones that are just so much smaller that fit under your nose and if your nose works well, they can work really well. But if not, then not so much. And it’s the same with oral appliances and some other things. Like if you don’t— I’m just thinking about iNAP, one of the— which is negative airway pressure. One of— that was one of the options we talked about in that sleep apnea treatment options discussion. 

Emma: And that— you literally can’t use that if your nose doesn’t work, because you have to form a seal around your mouth and the air goes through your nose, so— or rather it pulls— you know, it pulls your tongue forward and then the air is going through your nose. So yeah, there are things like that. 

Emma: And as far as like, just one surgery, there are— I mean I would just tell this person, go and check out all the different episodes of my podcast Sleep Apnea Stories. There’s a lot of different people doing different surgeries whether it’s double jaw surgery or some people have bariatric surgery. There are all sorts of surgeries at the back of your throat. So, I don’t think—Edgar, you haven’t had any surgeries, have you? 

Edgar: No. The one time that I talked to a provider about a potential surgery, they didn’t sound too confident in the results. Because in my case, severe— they were telling me that there’s a 50/50 chance that it’ll reduce your apnea, but you’re still going to have apnea. 

Emma: Yeah. 

Edgar: So, at this point, I was just— you know, I’m just going to continue with my CPAP. It’s okay. 

Emma: Yeah. And I think also, like it’s really good for people considering surgeries just to really speak to their provider about what the success rates look like. And you know, it’s obviously up to the individual and the surgeon you go and see. 

Emma: But yeah, so the next thing I wanted to share real quick, is— so there’s a company called ApniMed who are developing a pill for sleep apnea and they did this really interesting survey, where— which I think is the first time anyone’s ever asked people with obstructive sleep apnea about their feelings around sleep apnea. Like I feel like we’ve had a lot, a lot, a lot of research all around, you know, compliance to CPAP and all these kind of things, but to my knowledge this is the first time someone’s really asked our community how they feel. 

Emma: So they asked, how does living with OSA make you feel, and these were the results. So hopefully people can see those okay. And it’s quite astonishing. So, some of the ones that I think pertain particularly to our discussion around shame and stigma, you’ll notice it says 31% of people said that they experienced feeling isolated and alone, right? 

Emma: Which I mean is kind of heartbreaking to me. Like it’s— I know that it’s true because all of us have just shared how we felt, but like— it’s so many people. And then the other one that stood out to me was people sharing that they felt embarrassed. So, 30% of people responded that they felt embarrassed about their diagnosis, and 22% used the word ashamed. 

Emma: So, this really just shows to me that it’s really important to have this discussion. And I think, a lot of it— we’ve kind of touched on your experience of dating with CPAP— are there any other things that come to mind about any of these? Does this surprise you guys? 

Edgar: No, that— I feel a lot of my emotions reflected on those results. (laughs)

Emma: Yeah.

Edgar: The embarrassment. And I see that somebody’s asking about like, napping. I don’t take naps in front of people without my machine. That’s just not a thing for me. I cannot nap without my machine. I have to be in bed with my machine, sitting or somewhere without it— I will not nap in front of people like that.

Edgar: Because then it sounds like someone’s ripping up the sidewalk outside. And it’s— not only do I feel horrible when I wake up from a nap like that, but then I’ve made other people uncomfortable. So I have that thought in my mind as well. It’s like, I could be super tired, but I’d rather push on through and not be in that discomfort and then cause discomfort. 

Edgar: So yeah, I take my machine with me everywhere I go. If I’m sleeping somewhere, I take it with me. If I’m over at a friend’s place, I will make sure that I get back to my bed at some point. Both for my sleep hygiene, which is important, but also because they might be nice and offer me like, oh, you can sleep on the couch, you can stay here. I’m like, no, no, no. It’s cool. Thank you, though. 

Emma: Yeah, the napping thing is so funny because I think some of it also— like I’m a little older, right? So I’m 47. And— I feel like, my— it’s kind of changed over the years. Now I know there’s certain days where I just have to go and take a CPAP nap and I’ll be back soon. Like, you know, people in my life know that. And to the point where, Thanksgiving and Christmas— I think my mother-in-law used to not love it when I would just like disappear. And now I just say, I’m going to take a nap now. (laughs) 

Emma: Because I’ve usually been up really early and, you know, maybe to bed late and I just really need a nap. So yeah, I don’t think I really have embarrassment around that now, but I definitely used to have embarrassment like— you know, before I got my sleep apnea treated, there would be times where I would virtually be like falling asleep at my desk, you know, and that to me was kind of more embarrassing. But I’m just really fortunate now that, you know, my kind of lifestyle enables me to nap when I need to. Was there anything— do you have any embarrassment around napping, Jase? 

Jason: Not now. I’ve never been a napper. I never really did. I kind of just go throughout the day type thing—

Emma: You’re busy gardening. 

Jason: Yeah, yeah. (laughs) But now I make time to. But kind of like Edgar said, there’s a bit of planning involved, particularly if you go away somewhere. You know, you think, oh, is there power there? Like we have to take the CPAP everywhere we go. And I’m the same. I kind of— I can’t nap without my CPAP. Because you do, you feel horrible when you wake up. So but now yeah, I’m like you, Emma. If I need a nap, I go have a nap. And yeah, I try and do that more now. Yep. 

Emma: Yeah. So the next question was, how do you all feel traveling with the equipment with you? Did it feel embarrassing at first to travel with equipment? 

Jason: Yeah. (laughs) It definitely did. I mean, I used to— if we’re in a motel, it sounds crazy now, but I would, when we’d leave the room, I’d put a towel over the CPAP machine, because I thought someone would see it and think that I— I mean, yeah, I’m on it. But that’s the type of things that you think about. And but now I just carry it around and— loud and proud. (laughs) 

Emma: I feel like I meet people now— it’s so funny how it’s changed— but I feel like TSA are more used to seeing, you know, CPAPs or whatever as people come through the line. And I can remember times like back in the day when I first started like, I didn’t really know like leaving it in the case was the best thing to do. So I’d have it like shoved in my suitcase with other things and they weren’t used to seeing it, and I’d be like pulling out all of my stuff. 

Emma: So now— but now I feel as though I—I meet people— I mean, I’m kind of weird, like, I talk to people when I travel, you know, especially if I’m traveling alone. I feel like I always make a new friend—(laughs) that goes, oh matching cases. So, yeah. 

Edgar: It’s the secret— it’s the not so secret like—sorority/fraternity of like—

Emma: Exactly. 

(Jason laughing)

Edgar: Hey, boy. What’s up? Yeah, I know what you got in that bag. 

Emma: Yeah.  

Edgar: Something— with TSA, like here— something that made me feel more confident with traveling with my machine and feeling less shame in public with it, was seeing the rules that— that doesn’t count, as like— a medical device like that doesn’t count as a carry-on. It doesn’t count as anything for you. It’s just an additional thing that you have to carry. But that helped me feel much better—

Emma: Like validating, right?

Edgar: —and know that, like— oh yeah, this was established to accommodate me and to make sure that I have my machine plus the other things I am entitled to have when I travel. 

Emma: Yeah. So it’s so funny, I just remembered something. So Kristen Cascio who was one of the stars of our awareness campaign that we just launched— so Kristen has an Instagram called @MeAndMyCPAP— and I remember her posting a video— and I thought I was pretty, you know, evolved and really, really comfortable with traveling with CPAP. 

Emma: But she posted this video where she was talking about, like, you have a right to breathe while you’re sleeping too. So, if you’re on an overnight flight somewhere, she uses her CPAP and she’s just like— which I think is, even for me— like I have done that before on an overnight flight, but I felt really kind of embarrassed about it. And she just said, like if this is what you need to keep your airway open at night, breathing is the most important thing, and— go for it, kind of thing. And I just thought, yeah, Kristen Cascio! It was awesome. 

Emma: So, okay, we’re kind of running out of time a little bit. I could chat to you guys all day. So, one of the other things I kind of wanted to ask both of you is just a little bit about how you think your specific communities— like Edgar, you talked a little bit about the bear community and how—or the gay community and how that— you know, those—the acceptance kind of affected you. 

Emma: But then also, I thought maybe you might want to talk about the Hispanic community, too. I don’t know. If there’s any particular, you know, attitudes or anything that came from those particular communities. 

Edgar: Yeah, I mean, the— one of the things that I was raised with is like this, what I acknowledge now as like toxic positivity— where if you’re in the Latin community or Hispanic community, there’s a saying that’s like dale echa pa’lante, or like— keep going! You know, and at some point— you can only keep going so much until things aren’t working out for you.

Edgar: And in my case, as an immigrant, I didn’t have health care. And all I had was that toxic positivity. That’s the only thing that was fueling me to like, okay, I got to keep going because my parents did not leave a country to come over here so I could be sleepy and lazy. So, I had all of that pressure which really was something I had to work through, as I was going through that diagnosis as well. 

Edgar: Like assessing my mental health, and knowing that I’m not lazy, I’m not low energy just by choice, or just because of my environment— there was something that I needed to address. So, trying to tackle the stigma too, with family members, that once again—I mentioned it before, of my weight. When— because Latin people— and my family, and—people, like many people in general— just should not talk about people’s bodies, at all. 

Edgar: And that’s also something that we’re working on as a society. But then in the gay bear community— for those that don’t know, a bear is a very hairy gay man. There’s like a whole zoo of names. I don’t know why it is. But it’s become so embedded in the community that it’s really kind of a joke. 

Edgar: And I take it very serious and I tell people that if you talk about bears and their CPAPs, you could joke about it all you want, but really have the conversations about sleep health. Because something that we’ve mentioned also in one of the other chats that we’ve had with Project Sleep is about night life and how for a lot of the gay community, night life is a haven. It’s a sanctuary. 

Edgar: So sleep hygiene really gets overlooked when it comes to like queer spaces because you have to go out at night and like that’s when you’re free to be able to express a lot more. So yeah, all of that to say, that— there’s a lot more that I’ve been able to bring to talk with my friends in the community, with my family and Latin and Hispanic spaces, and I’m glad that I’ve been able to project those thoughts in new ways. 

Emma: Jase, I feel as though you can speak a lot to some of the experience of people from rural communities. Do you want to explain, you were trying to explain before exactly where you are in Australia. 

Jason: Yeah. So, I’m in a little town called Charters Towers, which is an hour and a half west of Townsville. And Townsville, if you haven’t heard of Townsville, is about three hours south of Canes— and Brisbane and Sydney and all those big cities are hours and hours and hours away. So my community is a very small, rural country town. 

Jason: I only had one GP. There’s no sleep specialists. There’s no surgeons. So when I went for my surgery, it was an hour and a half drive to appointments. Any big specialist is tele health. So even my CPAP supplies and stuff like that, most of them I can’t get in town. I have to order them in. So that was a big challenge. Talk about feeling isolated just being diagnosed as a young person, let alone being in a small country town. It’s very difficult. 

Jason: For me, my close community was my family. So, I have a very tight family and they helped me a lot and it actually made me sad to think of other people going through this who didn’t have as good of a family environment, or the financial support, or things like that. Actually made me feel really sad. So, that’s what made me so passionate about spreading my story to help those other people out, yeah. 

Emma: I kind of want to cry. 

(Jason laughs) 

Emma: But I’m so glad, because I’m hopeful that the people in that situation can see this, and I think hopefully find it helpful and know they’re not alone. Yeah, and I find it— I spend all my time speaking to people with sleep apnea all over the place. 

Emma: And it really is astonishing how similar your story is to some people here in the States who live in rural communities and you know a lot of the advice to find a sleep specialist or go to a sleep center accredited with AASM, they say, that’s two hours from me. So like you were saying, like tele health is a really— like a lifeline for those people, just because they can access the specialists. 

Jason: Yeah. One thing I would like to say really quickly is how important it is to advocate for yourself. So there was so many times that I was being told one thing and I thought another. If you like ever think that, or you feel like you’re just not getting the right opinion, like it’s your body, it’s your life, you know how you feel. Just advocate for yourself and get another opinion. 

Emma: Yeah and this is probably part of my upbringing and my, you know, community in Scotland where— I don’t know if it’s just my family or more of a general society Scottish thing— but there’s definitely, when I was growing up, there was a feeling of— that if a doctor said something, that was that. That was the end of it, right? There was no like second opinion. 

Emma: There was no like, oh, maybe they made a mistake. So, I think that was part of why it took me so long to get the diagnosis because I didn’t really realize that advocating for yourself in medical settings was really a thing. (laughs) So, I think if I had realized that, I would have asked more questions and really pushed more, earlier on. So, yeah, that’s super insightful.

Emma: Okay, so, we’ve— I mean, we’re almost out of time. Thank you both so much for joining me. So I think we’ve kind of hammered this home, right? But so Brene Brown talks about the antidote to shame being empathy. So I don’t know why I feel like crying. (laughs) So empathy is the antidote to shame. The two most powerful words when we’re in struggle are “me too.” 

Emma: So I know that I definitely feel that, the more people I meet who have gone through the same experiences, the more it’s difficult to really be stuck in shame and stigma because you can relate so much to the other people in the community. 

Emma: So here at Project Sleep, we have a program called Rising Voices where we train people with sleep disorders to share their stories in public speaking. So I did this training a few years ago and found it so helpful. They help you come up with a sort of 25 minute presentation you can give in schools. 

Emma: I’ve spoken in schools, I’ve spoken at conferences— all over the place. And the idea is that by sharing our story— that’s how you really can battle stigma. Because storytelling has been shown in research to actually, you know, tackle stigma because people relate so much to individual stories. So what we’re doing today is definitely battling shame and stigma just by sharing our stories.

Emma: So there’s a lot of different Facebook groups out there. The only one that I really recommend to people is run by a UK charity called Hope2Sleep. It’s really well run. It’s really well moderated. I always worry about some of these Facebook groups kind of recommending, you know, not great solutions to people, but this has definitely got a lot of doctors and a lot of just really caring volunteers that moderate it. And so yeah, really if you’re looking for a Facebook group, I really recommend that. And they’re really welcoming of people even outside of the UK.

Emma: And then just may as well plug my own podcast. So, I had a podcast called Sleep Apnea Stories where I interviewed a lot of different people, including Jason and Edgar. So again, if you want to hear stories from real people with sleep apnea, that’s a good resource for you and it’s free and accessible anywhere you get podcasts. 

Emma: And I wanted to give a shout out to some of the other patient organizations here in the U.S. So, I mentioned before the Alliance of Sleep Apnea Partners, or ASAP. So they— you can go to their website and kind of see what they’re up to. There’s American Sleep Apnea Association and also the Reggie White Foundation. So just a little shout out to them. 

Emma: Oh, it’s probably worth saying the American Sleep Apnea Association’s website is sleephealth.org. So that’s where you can find them. A quick shout out about the sleep helpline. So, one of my wonderful colleagues, Heather, runs our Sleep Helpline. So you can call or email or fill out a web form anytime and she will get back to you with information all about anything to do with sleep. 

Emma: So whether you’re just— you know, you have questions about your sleep, or you’re not sure which specialist to go to— it’s not medical advice, that’s going to help you navigate— like we’ve kind of shared that this can be quite a difficult thing to navigate when you’re trying to figure out do I have a sleep disorder? What’s going on? 

Emma: So if you call Heather or email her with your questions, she can respond. It’s a really great free resource. Project Sleep is a 501(c)(3) non-profit. So, we rely on individual donors and also corporate sponsors including Apnimed, Lilly and Resmed. So, big thank you to all of them. 

Emma: Huge thank you to Edgar and Jason for joining me. So just let you know the toolkit will be coming soon. The best way to stay up to date on everything we’re doing with Sleep Apnea Squad is to sign up for e-updates. So there’s an email list you can join. Again, go to the Project Sleep website. You can find it there. 

Emma: Thank you all so much for joining me and we will see you next time.