I Can Finally Burp: Living with No-Burp Syndrome - Henry’s Story
The importance of advocating for yourself, staying persistent, seeking community support, and challenging the misunderstandings surrounding invisible health conditions.
Henry L. - Bio
Henry L is a father and husband with two sons, and he is also the owner of a Golden Doodle.
In his spare time, he enjoys spending time with family and friends, observing nature, and playing sports. On days when he has extra time, Henry likes to go cycling and explore the city.
Henry is a Digital Transformation Expert specializing in partnering with C and VP-level executives to drive innovation and growth.
Contact Links:
Summary
Imagine going through life without the ability to burp. You might think it’s no big deal but did you know, on average, we burp 10-20 times a day to release the air we take in?
In this episode, Henry shares his life with no-burp syndrome, also known as R-CPD. Henry talks about the physical and social challenges he faced, including countless doctor visits and misdiagnoses, until he finally found relief through an online community that led him to the right treatment.
If you struggle with self-advocacy, this is for you! Henry talks about the importance of standing up for yourself in healthcare. He explains how his persistent research and determination helped him find a doctor who understood his condition and provided the procedure that changed his life. He talks about the balance between trusting medical professionals and doing your research to ensure you get the care you need.
We also touch on the bigger picture of healthcare advocacy and the stigma surrounding invisible conditions.
Henry shares his thoughts on when to seek treatment and the need for society to better understand and support those with invisible disabilities. By sharing stories like Henry’s, we aim to reduce stigma and encourage open and supportive conversations.
This episode is not just informative—it’s an inspiring reminder of the power of perseverance and the importance of being your own advocate.
Takeaways:
Advocate for Yourself: Take an active role in your healthcare by doing your own research and speaking up about your condition. Your persistence can lead to better outcomes.
Seek Second Opinions: Don’t hesitate to get another perspective if you feel your concerns aren’t being fully addressed. Questioning a diagnosis is a vital part of ensuring you receive the right care.
Educate and Support: Help end the stigma around invisible conditions by educating yourself and offering support to others who live with them. Awareness is key to building a more understanding society.
Informed Discussions: When discussing your condition with doctors, bring facts and research to ensure a thorough and informed conversation. This helps in making collaborative decisions about your health.
Quality of Life Matters: Improving the quality of life for those with invisible conditions has significant positive effects on overall well-being, emphasizing the need for proper treatment and support.
No-Burp Syndrome (Retrograde Cricopharyngeus Dysfunction, RCPD) - Defined:
A rare condition where the muscle responsible for allowing air to be released from the stomach does not relax, making it impossible to burp. This can lead to significant discomfort, social embarrassment, and digestive issues due to the accumulation of air in the digestive tract.
Example Accommodations for RCPD:
Workplace: Flexible break times to manage discomfort, access to private spaces to relieve digestive discomfort without stigma.
Social Settings: Awareness and understanding from friends and colleagues, allowing for dietary adjustments and the option to step away when needed.
Physical Activities: Gradual participation in activities, with consideration for discomfort levels and air buildup.
RCPD Resources:
RCPD Support Group: An online community where individuals with no-burp syndrome can share experiences and tips for managing the condition.
Botox Treatment for RCPD: Information on the primary treatment option for no-burp syndrome, which involves Botox injections to relax the cricopharyngeus muscle.
Educational Articles: Resources that explain the condition and offer advice on how to discuss it with healthcare providers and loved ones.
Chapters:
00:00:00 Living With No Burp Syndrome
00:12:54 Advocating for Correct Medical Treatment
00:18:32 Empowering Self-Advocacy in Healthcare
Transcript
Henry L 00:00
And I was like this is the greatest feeling of my life. My life changed dramatically afterwards and every time I burp these days I'm like I always ask my wife was that a big one? Was that like loud, was it? You know, did you hear it across the room? And if you did, it's a good thing because I'm happy. I was happy like knowing that I can burp again. That sense of relief in my body was just. I could feel it. Me talking about it, I'm actually tingling right now, the idea of just being able to burp the sense of relief is just so awesome.
Tim Reitsma 00:33
I have a fact for you that you may have never really thought of. On average, people burp yes burp An average of about 10 to 20 times a day, according to some quick research I did online. Burping is natural and it's a way to let out excess air. But what happens when you can't burp Like ever? What does that feel like? People who can't burp? Well, they build up all that excess air in their stomach and esophagus, leading to a range of symptoms, usually including loud gurgling noises in the neck and chest, bloating and discomfort in the neck, chest and abdomen. Now you may be thinking well, this isn't a big deal, and well, that's because you can burp All day. We take an air and it slowly releases. But for my , that just wasn't possible. Facing a condition that few understood can be increasingly isolating. Now imagine living with something as unusual as no burp syndrome, where a simple burp just isn't possible. Its official name, r-cpd, was discovered in 2019, yet many people live and lived with this condition.
01:55
Hey, Tim here, and thanks for tuning in to another episode of the Invisible Condition Podcast, where we talk about advocacy and unusually normal things, the conditions, diseases and illnesses we live with. We will end the stigma of invisible disabilities by empowering voices, and today's voice is brought to us by Henry, a friend and a father, who has faced this unique challenge of living with our CPD, commonly known as no Burp Syndrome. Henry talked with numerous doctors who dismissed him, yet this syndrome was having a huge impact on his quality of life. What's cool about Henry's story is he just didn't stop when a doctor said no, or I don't believe you. He went online, did an incredible amount of research, printed that off, went to his doctors, and it's a story of perseverance and self-advocacy. He did not take that no for an answer, and it's a story of perseverance and self-advocacy. He did not take that no for an answer and he joined me and just talked about that discovery, finding that online forum, taking that to his doctor and then getting a procedure that has now allowed him to burp.
02:57
If you've ever felt alone in your struggle with an invisible disability, or perhaps you're just looking for some inspiration on how to advocate for yourself, you've got to listen to this one, and I bet at the end of this episode you'll not take burping for granted again. Have a listen, henry. I'm just excited that you're on the show. You know we've developed a friendship over years yearsso I just thank you for coming on and I know you've got such an interesting story. It's a compelling story, but before we get into that, I just yeah, I'm grateful that you're here with me today.
Henry L 03:38
And thanks for having me. Honestly, I think it's really great that you've built this platform, invisible Condition, to have the opportunity to share other people's story, and I'm just delighted to be here to be able to share mine.
Tim Reitsma 03:50
Yeah, and that's what it's about. I created this platform as a space for, honestly, for myself to share, and then I found out very quickly that others wanted to share their story as well, and that's really the nature of Invisible Condition is just to allow others to share their story so we can end the stigma of Invisible Conditions, those invisible disabilities that we can't see. And I remember I think we were probably standing on the playground while our kids were playing and I was sharing a little bit about what I do and you said hey, I have a story to tell you about a condition that I live with and so I'm not going to steal your thunder. I would love for you to just spend some time with us sharing a bit about what you live with your diagnosis and the journey you've gone on just to get treatment.
Henry L 04:40
Yeah, absolutely man. So my condition? It's such a funny, interesting thing. Like every time I tell somebody, yeah, I, I can't burp. They're like what do you mean? What do you mean? You can't burp? Um, can you just drink, you know some? Some coke or some pepsi or whatever it may be, and and you just let it out. Right, I'm like you know what? I've never done that before, I've never experienced it.
05:03
I don't even know what it is, but all all I know is that throughout my life, even as a toddler or three or four years as early as I can have memory I just could never burp. I'd be jealous of my friends being able to burp, and it was never really a thing that mattered to me, though I mean, who cares? Why would you want to burp? Right, it just seems so disgusting, or whatever it may be. But as I got older, my social life changed a little bit. I realized this what we call no burp syndrome, or the more official name, is called retrograde. I'm gonna, I'm gonna probably like, like, screw this up. It's retrograde cryo, cryo pharyngus dysfunction, uh, rcpd for short. I'm gonna call it no burp syndrome for today.
05:44
Um, it really becomes a problem as you get older because, as your social life changes, you know we go out to bars, we stay out, uh, at night, uh, you know, hanging out with friends people don't know this but and probably take it for granted is that we're always, um, swallowing air, whether it's through the food we drink, uh, whether it's, you know, just walking down the street and you're breathing. We're always swallowing air, but it always comes back out, whether it just seeps out or you burp. But for somebody like me, for 37 years of my life, I can't burp that air back out and what happens is, from morning I'm pretty empty in terms of oxygen in my body, gases, and then at the end of the day I'm just like. I'm just like a balloon, because it just builds up throughout the day and I start getting cramps, I don't feel like eating and you know it always has to come up the other way and that's kind of embarrassing too, right? So, being out with your friends, you're at a bar like, okay, I got to step away for a minute, boys, and you away for a minute, boys, um, and you know I just gotta let it out, right.
06:43
So, yeah, it's, it's, it's been such an interesting um syndrome that I've had don't really talk about. Nobody knows much about it. You know, I talked to my doctor about it. He's like oh no, it's just, it's a, it's an intestinal thing. You, you definitely have no problem. Um, and it's just, it just becomes a nuisance.
06:59
Once you get older and, I think, especially when I started doing more cycling, more, more jogging, which requires me to to to run against the wind or ride against the wind, I'm swallowing even more air. Um, that buildup becomes more painful and painful, and not until I one day I went online and actually Googled it, um, not able to burp. I found this, uh, this, this Reddit group called the no burpers. Uh, and I was like, wow, these people actually experience the same thing. There's more people out there that are like me, that suffer from the same problem, and that's where I was able to self-diagnose myself with RCPD no Burp Syndrome and then, from there, I started my journey of trying to figure out how do I resolve this, and it was quite the journey. It was a several-year process, but, happy to say, today I was able to get the treatment I needed, not without challenges, and I'm fully, I guess, so to speak, recovered from this for over, I guess, 10 months now. So it's been really great.
Tim Reitsma 08:03
I can't imagine it's just something we take for granted, right, when you know if we drink some carbonated water or a drink or whatever just that food, it's that, it leaves our body in some way, and I can't imagine. Like you said, as you got older, you started to impact your life not just from a social perspective, but also your physical activity. I know you're a fit guy, you're a runner, you're a cyclist, and it started to have a big impact on your life. And so talk to us a little bit about that. Just when did you start to notice a real impact on your life and and then say, hey, there's something going on here or I need to figure figure out what's happening?
Henry L 08:52
yeah, no, that's. That's a great question. So I I do feel our rcpd once you most people are usually born with it, but what happens? As you get older, it actually becomes bigger and bigger of a problem, whether it's our digestive system changing or, you know, our intestines or my body just can't really cope with that extra gas in my stomach and I get crazy amounts of pain. This is not the same pain I had when I was eight or nine dealing with this condition, or 15.
09:19
As I got older, now that I'm in my late 30s, it the pain is much greater and I think someone who works really hard throughout the day and finally get off work, hang out with the kids, be able to go for a jog or go for a cycling ride to relieve stress or whatever it may be, and not being able to do that because of this pain in my stomach, it just became such a big downer. And I had had many personal goals to do cycling races, one being the Grand Fondo in West Canada, and I just couldn't train for it. I tried my best, I spent my weekends training every day, but as I tried to ride more and more or train more, it just started to be very, very painful. So I think from an activity perspective, it certainly limited me in my ability to do things I want to do, the pain that I had to deal with throughout the day. Certainly that made a very negative impact in my personal life, my quality of life and just not being able to drink when I want to drink.
10:27
Let's say, you know, I have my first beer. You know that feels pretty bad after that and get a lot of buildup. Second, third beer I'm toast. It's the end of me for that day, right, and I start feeling some really bad pain and usually I'm the first one who leaves the party because of that, right, and people always kind of make fun of me, jokingly um, but uh, you know I'm known as that guy who just can only have one beer, right.
10:49
I'm also asian too, so that that also has a little impact on that as well. So, uh, but in short, like it's it's, it's been definitely a downer. And and then, as I get older, I'm more, uh, aware of my body, I'm more aware of my time, of being able to do things, and, and when something as a health condition takes that away, it's very meaningful for me. It's something that I feel like as I get older. It's important for me to try to resolve. When you're young, you have a lot of time. You can do whatever you want. If you're not feeling well for a day, you have the next day, but as you get older, it's like every day matters more.
Tim Reitsma 11:31
And that's why I sought out to really try to figure this out. Yeah, it can relate to that. You know, when cycling, you know for you as well as just for me, with crones, it took cycling away from me. I just couldn't do it, um, just didn't have that energy, and and so I can. I'm trying to imagine what it would feel like from your perspective, and just not from just the physical side, but also the mental side of like why can't I do this? And then, now.
11:55
Now you understand why you you couldn't right, even though you know, like you said, your friends were jokingly saying hey, you're always the first to leave the party or the first, so you're only allowed, you can only drink one beer. Whatever that is, you know, I can imagine it still plays on your mind a little bit.
Henry L 12:11
Oh, absolutely, it's funny. I was with my friends out maybe Friday of last week and they remember that, they remember that of me I haven't seen them in like five years and they're like oh you know, henry can only drink one. Now I'm jokingly saying, well, now I can drink a grand total of two until something else kicks in, such as my inability to break down alcohol in my body. So, yeah, it does make a big impact, right? And I think the fact that it made such a big impact I really pushed hard to try to figure out how to resolve this, right. So, kind of in that latter journey of trying to figure out what's wrong with me, how do I deal with this, how do I fix this, I started going to see my family doctor a little bit more.
12:54
The funny thing about this no-burp syndrome it's not really well known, and we're not even talking about just the general public, but even in the medical world this condition was not even considered an official condition, I think up until 2019. We're in 2024 right now. That's only five years ago. So, as you can imagine, a lot of the doctors out there, even if they've heard of this condition and many have not they may not actually know how to treat it. And even if they know how to treat it or what kind of treatments you can take, they may not even know if it's something that's. And even if they know how to treat it or what kind of treatments you can take, they may not even know if it's something that's. They can't evaluate that because they're not. It's just so unknown, right?
13:35
My family doctor basically said yeah, I've heard of it. He Googled it afterwards and then he said, yeah, like you can take a Botox shot, which is actually the primary first line of treatment for this syndrome. And he quickly said well, you shouldn't do it, though, because Botox only lasts for several months. The moment I said oh, you know, I went on Reddit. I've done a lot of research. Folks have done a Botox shot. It tends to work forever, because what happens is their minds get trained that the muscle, the Botox that relaxes the muscle that enables us to burp. There's a special muscle that we all have. Mine is just more closed off, right, and in order to burp, you have to relax it. I lack the ability to relax that muscle, and that's where the Botox shot comes in, right. So the doctor is saying well, the Botox shots usually wear off after six months. It's not worth getting and you will have this problem again. You can't just keep getting the shots. But what I'm hearing online is that even though it wears off, your mind retrains itself to be able to notice, to be aware of that muscle, and now therefore you can at least control it a certain amount, enough to be able to birth. So he didn't believe it. I sought out to. It was enough of a problem for me to seek out additional advice. So I ended up going to another kind of walking clinic. Now my family doctor and she basically said you know what? I've never heard of this before, but I'm going to set you up with a specialist, and it was an ENT specialist. I actually went through several ENTs because not all ENTs want to treat this condition.
15:09
Long story short, like six months later, seven months later, I finally got booked into getting the shot that I needed to relieve this muscle, went to the hospital, they put me to kind of under the anesthesia. I was able to kind of get the best sleep of my life. It was actually the best best of my life. Um, they, uh, it was actually the best sleep of my life. They, they injected me and, and I would say probably like three or four weeks later, um, I did my first real burp and I was like this is the greatest feeling of my life.
15:37
My life changed dramatically afterwards and every day, every time I burp these days I'm like I always ask my wife was that a big one? Was that loud? Did you hear it across the room? If you did, it's a good thing, because I'm happy. I was happy knowing that I can burp again. That sense of relief in my body was just I could feel it Me talking about it, I'm actually tingling right now. The idea of just being able to burp. The sense of relief is just so awesome.
Tim Reitsma 16:08
It's something as we grow up as kids. I remember with friends just having burping, contests and just taking again taking that for granted, just taking it as like this is just something everybody does. But one of the main points is burping. We can't take it for granted, we can't take what seems to be quote-unquote normal in my life might not be normal in somebody else's life. And you've got a supportive network and supportive friends and family and workplace. And here you are now sharing your story just to say, hey, look, I have this syndrome, I have this syndrome, I had this syndrome, I have this syndrome. But I want to back it up a little bit because your story of advocacy is something that man I just love.
16:56
I know enough about you to know, henry, that when you get an idea, you just research it. Am I wrong in saying that You're like you go to Google, you're going to spend time just researching something? Yeah, you go to Google, you're going to spend time just researching something. And you brought that to your doctor. Your doctor was like no, we're not going to do that injection. And I know people who'd stop there, who would say you know what? I guess my doctor says no, so I'm not going to, but you didn't take no for an answer. Why? Why didn't you just say okay? I guess this is as good as it gets.
Henry L 17:30
Yeah, I think for myself several things right, so one it became such a big problem for me, I just I wanted to get it fixed. Life is too important. I want to live out my life healthy, happy, uh, unrestricted um, and just being able to, to be able to do what I want, which is, you know, be able to have a drink or two, maybe three, um, go out for a bike ride and not feel like my tummy is going to explode by the end of it. And to do what I want, which is be able to have a drink or two, maybe three, go out for a bike ride and not feel like my tummy is going to explode by the end of it and have to tell everybody my excuse of, oh, my stomach hurts, and everybody's like, oh, it's true, that's just an excuse, right, but no, really my tummy does hurt. So I think, just knowing that, if it hurts enough, if it's enough of a bothering life, it makes sense to advocate for yourself. The other thing, too, and most people know me as somebody who my inner circle would know me as somebody who's like, yeah, I research, I do a lot of research, I do a lot of reading, whether it's Google, whether it's inquiring, a large language model, some kind of generative AI tool or simply just reading. And sometimes there's some negative stigma to that, like, oh, you're just Googling your way trying to find your own treatment.
18:42
The doctor is always going to know better. Well, the doctor does know, for the most part, better, but they don't know who you are. They know better. Well, the doctor does know for the most part better, but they don't know who you are. They know medicine, they've studied it and I respect them for that. But we know our bodies the most right. We listen to ourselves, we are ourselves and if we feel something and it's painful, we should feel strongly with that right and we should advocate for ourselves strongly with that right and we should advocate for ourselves. means education, right. So inform, creating, informing yourself to figure out what is the problem we're dealing with, what kind of potential condition it is and how do we remediate that.
19:20
And some folks will go to me and say, oh, henry, you're just googling or you know you're not a doctor. Well, I'm informing myself, right, and I'll bring that information to the doctor and we will consult and we will deliberate. Right, and sometimes, usually more oftentimes, the doctor's usually right. But when we know they're wrong, and I feel like they're wrong for a very logical reason, I'm going to advocate for myself, and in this case I did. And so I think it was important of you know, feeling and problem that I had that I'm just like. You know what I'm not going to.
19:50
I value my life, I value my health. I'm going to get to the bottom of this and even if, in my opinion like when a doctor said, well, it's only going to last six months, but that's six months of feeling great I think it's worth it. Why, even if it had to cost me money and of course, the government paid for it, but even if it cost me money, it cost me time and effort and it put some strain on the health care, it's still worth it. I think that's what the health care system is for. So, um, I'm glad I did advocate and I think for all those out there like whether it is no burp syndrome or it's some other kind of medical condition where you're not feeling too great about it, like I would never feel bad about informing yourself, right, when somebody says you're googling too much about don't, don't, don't, um, try to be your own doctor, I think that's probably the worst you know thing to say to somebody because, um, maybe they should.
20:43
It's like telling them not to learn, no, not to advocate for yourself. I think that's a big no-no, right. So there is a situation where you can spend too much time researching. I think that's just like anything like drinking water you can die from it if you drink too much. There's always a balance, right. So I think, as long as the balance is with the right intention and you're not going overboard, I think it's important to inform yourself about health and treatment and and not being afraid to to be that guy researching on their own to figure out their own treatment and then qualifying that with a, with a, with an actual doctor, and making that informed decision together on the path of treatment.
Tim Reitsma 21:22
So much wisdom right there, henry, is. You know I, I made a conscious decision to say, hey, if somebody has self-diagnosed themselves with something, then we may have a more detailed conversation, even before agreeing to be on the podcast. But I love what you said there. Right, there's nothing wrong with going to the internet and researching. It's like, hey, these are my symptoms and, as we know, right, if you say you've got the sniffles or you've got a sore throat, it could be allergies, a common cold, or you will not survive the next 24 hours, right, you can get a vast range of results. But that's where some common sense comes in as well.
22:06
And taking that to your doctor and saying, hey, this is, I am not feeling as I as my normal, my normal has changed or my normal is different, what is going on? And I love that. You went to that walk-in clinic who sounds like they're now your doctor, and they referred you to an ENT. So you just didn't stop there, you just continued on to say, okay, that ENT was like a no, and then you continue to continue, continued on. And so, yeah, how did that feel to get that ENT to say, yeah, let's go ahead, let's go do this?
Henry L 22:44
I think, yeah, it was a huge sense of relief that there was an ENT who first recognized a problem, because it is a very unknown problem, unknown syndrome Even to ENTs. It's kind of crazy and them saying, yes, there's an end to this painful thing you have and there's treatment for it. And then I just remember who's excited for it. And then I just remember, like, who goes excited for who? Who's excited for surgery? Nobody is right. And for myself then having to, you know, kind of open up my mouth and put me to sleep, and not not a big surgery, but just, you know, big needle or down, I'm afraid of needles. I've never been so excited to get a, a shot and like it was, it was and it was a big one too, um, and it just felt great. And then I woke up from my sleep and it hurt, right, my throat hurt, and after the big needle they shoved down my throat and I just remember it, feeling pain for two weeks. But I just constantly remind myself this is totally worth it. And, of course, as the weeks gone by, the swelling subsided, the feeling again, the feeling of this relaxed throat. It was just amazing, like just it just blew my mind away and there was all these other downstream positive impacts from getting a shot too. I've noticed that, um, and I didn't notice before until I got a shot, because that my ears and my nose and my mouth are all connected right and when you have one part that's closed off, all the time you create this cavity of air in your head. You just don't know. And when I'm running I always hear my footsteps and you can hear this kind of fishbowl sound. I just assumed my whole life it was normal, but the moment my throat opened up, that fishbowl sound went away. So I don't hear my steps when I jog even more as loud. That was a huge difference because I was always bothered by it. I always thought it was just normal, but it turned out that it was related to having this tense muscle here right, using airpods too. Right, when you plug your ears and you're closing off one, you know exit of air and then your throat's tight. So when I'm'm talking with AirPods, I can never use them to have a conversation because it felt. I felt like I was talking to myself. I can hear the echo, but again, once they believe that pressure or that tenseness, I no longer have that problem. So there's.
24:58
It's like what I'm trying to get at is like you'd be surprised.
25:01
Like treatments, like yeah, you'll treat that primary kind of condition you have, but the downstream impact to positive things that can happen in your life from just one illness going and one condition going away can can spur off all this happiness in life that you just never expected, right? So I'm always I go and say like, hey, like, don't be afraid to go to a doctor, don't be afraid to research about what potential illness you have and, again, with within reason, don't go go overboard, because it's totally worth it in the end, totally worth it. Your quality of life will improve. I can go jog with my AirPods on now without feeling that pain in my ear. Who would have thought, right? So, yeah, it's just been really, really great, just kind of saying no to all the other people telling me don't do, don't, don't do this, don't do this. I'm so happy I didn't listen, um, and just kept going and it just felt great afterwards the results I had a doctor on the podcast early on and practices a very different type of medicine and and.
Tim Reitsma 26:02
but what she said will always stick with. And she said if you are getting something back from your doctor and it's just not sitting well with you or you're just like, I think we need a second opinion here, she said if your doctor's confident in their diagnosis, they're not going to be upset with a second opinion. And so I know it doesn't sound like your doctor was upset with a second opinion and things like that, but you got a second and third and fourth opinion, and so I think that's a good lesson and something for somebody to take away is if your doctor is going.
26:36
Why? Why don't you just believe my diagnosis? Maybe they're not confident. I'm not trying to put doctors down here, but if somebody wants to even review the work that I'm working on I work for a couple of people a contract to a few people. If they say hey Tim, I want to see your timesheet, I have nothing to hide, go for it. If I had something to hide, I'd be nervous about it. I wouldn't be confident in that, and so I think the point is you know, if something is just not sitting well with you, get that other diagnosis or get that second opinion.
27:11
You know, the thing is is doctors, I believe and another doctor came on, a different doctor was on the podcast is doctors have seen so many patients. General GPs, general practitioners see so many patients, there's so many conditions and trying to know a lot about a lot. And so asking for that referral, getting that referral to that specialist is so, so important to advocate for. And here you are. You know your neck has opened up. It's looking extra toned, I don't know if that's from you know the sun, or from the Botox or what.
27:47
but how was it? You're a father. Do you and your kids now have burping competitions?
Henry L 27:53
Yeah, um my, my younger son, loves to burp. By the way, this is hereditary. This is no burping thing, so my older son can't burp.
Tim Reitsma 28:03
We've just discovered that after through my journey.
Henry L 28:06
So, uh, my nine-year-old and then my seven-year-old can burp at will, just like my, my wife, and funny, you say that we actually do have burping contests and he would always put down my burp saying it wasn't that loud, and and and then he would show me what a loud burp is and I'm like, okay, that's pretty loud. And my response to him hey, I'm new to this, I'm still learning how to burp again. But every time I have a big burp it's like, yes, it feels great, take that son.
Tim Reitsma 28:36
I love it. So your oldest son isn't able to burp, and and so I'm curious have you gone into looking like what age is a good age for treatment or what? Yeah, how, how are you navigating that with him?
Henry L 28:50
yeah, yeah. So I always ask I've asked him this question several times like are you feeling any pain? Not being able to burp, um, does it impact you in any way? He hasn't, and I and I remember this when I was young too not being able to burp never really affected my life as a young man, right as a young child, I think. At one point, probably in my teenage years, that's when it started becoming, uh, more painful and more, more noticeable and more impacting my, my regular day-to-day life. So I think think the thing for me is just constant, just monitoring, like you, don't just ask every so often hey, how's your tummy feeling.
29:25
How's the inability to burp not feeling to you? Is it bothering you? And the moment it starts bothering, I think it's time to consider treatment, Because treatment, at the end of the day, it's all about quality of life and improving life. We don't want to inject any medication for no reason that doesn't belong in the body, right? So I think it's just going to be one of those things where we just feel it out. Once it starts bothering him, we reconsider it for sure.
Tim Reitsma 29:48
I love that approach, right, you just don't want to jump to a solution when his quality of life seems to be fine. It's, it's, it seems to be okay right now, and and uh. So you know, I want to jump back to something you said that's kind of just popped back in my mind and you and your wife, your family, were over for brunch and, uh, we had a fun conversation just around the best quality of sleep, and this is way off topic, and so you know what did that feel it was.
30:19
I think it was your first time going under right. You're just getting the medicine in and counting down. What did it feel like for you?
Henry L 30:27
Oh well, for me it was like I had like the worst sleep the night before, because when I'm excited about something I just can't sleep. And I was excited to get this treatment. So I was kind of like, okay, up, up and up, uh, still up late at night just thinking about it. Um, got to the, um, the, the or room and I'm like I'm ready for this right, and then the doctor's like, oh, you're, you're gonna, you're just gonna fall, you're, you're, you're gonna try to stay awake, and just kind of fall asleep. And you, before you know it, you're just gonna wake up and you feel rested and I'm like you, I'm going to be that guy who will stay up.
31:00
I'm going to fight it and I literally was fighting it as hard as I can as they were administrating the anesthesia, and I just remembered fighting it and that's all I remembered. And I woke up and that was it. And I remember walking and I'm like, and that's all I remembered. And I woke up and that was it, and, and, and I remember walking out like wow, this feels good, I feel like we're so rested and for any parents out there who who have kids, you'll know what I mean Like getting a good sleep, uh, like throughout the night, is like the best thing that could ever happen, right, and? And I had one of those and it felt great.
Tim Reitsma 31:37
So well-rested. You know, after the swelling went down you had your first burp. I love your story, like your story. Just it's unusual and hopeful. You know I'm leaving here. Just I know I got a message somebody about hey, have a listen to Henry, because his story of advocacy is one that it's not just inspiring Henry. It's unusual because many of us would stop at that first or second of like I guess this is as good as it gets, but you kept pushing. So I love that determination. We should have planned this a little differently, where, hey, we crack a beer and it's like let's drink and see who burps first.
32:27
But you know, maybe we'll save that for another day. But as we look to kind of wind down your story for those who are listening, many of us live with an invisible condition or an invisible disability. How are we going to end the stigma? Because your story is maybe a little bit different, where you were surrounded by friends who supported you? I've heard from many, many people who are surrounded by people who make fun of or don't understand or question. So there's so much stigma that surrounds invisible disabilities. And how are we going to end this? How are we going to work towards a society where you know if our kids need support, that they're not afraid to ask?
Henry L 33:16
That's an amazing question and I think one kind of recommendation is like I think the main thing is don't is to always feel like it's okay to be different. And when I say different, it's like we can be all different from the way we look or the way we talk or the way we think, but also our health conditions too. Not everybody's going to be the same. Um, you know, I think a lot of folks are uh afraid of sharing their condition to others. And that's fine, right, totally cool. When I found out about my no burping syndrome, I was like, oh okay, this is kind of funny. I mean, I'll just share it to my friends and people just laugh about it. But at the same time, it's like it is funny, it's unusual, but at the end of the day, it's like you got to be very brave in terms of just not allowing people to say no to what you believe in and what you feel. And listen to your body. If it doesn't feel right, research about it and when you research about it, be very open-minded. But also question what you see online, because not everything is real. Find really good sources it. But also question what you see online, because not everything is real right, find really good sources.
34:22
Right, I didn't go out and go to, like, uh, you know doctors, you know, you know cool doctors, dot com or anything. I went to, like I read research papers from yale medicine, columbia, um, and, and really tried to identify you know, is this something potentially it could be? Uh, what I have and something that I can bring to the doctor and have a conversation about? Right, be prepared to have a conversation, bring facts with you, not just like oh, I saw this person on this message board who said this Bring some good facts right and deliberate, right and good doctors will listen to it and be like, yes, you have a very good point of view in this. Let's dive deeper in, just, together and figure out what the source of the problem is and validate what you've read.
35:02
And some doctors will be like, no, you know, just, you can't do anything about it. Right, and well, you know what I would say to those doctors if I am bringing good facts in is you know, like I don't want to settle with no right, I want to settle this syndrome and figure this out, because it's not your body right, it's my body right. So, um, yeah, just be brave, just, uh, you know, know, know that you know it's, it's normal to be different from everybody else. Everybody has different bodies, everybody has different conditions and don't feel bad about or guilty about it and just seek help and and be prepared and be a research and, you know, come with data and be open-minded with your conversations with your doctor and figure it out together. And sometimes it will require multiple opinions and that's okay too, right? And ultimately, you know, I think everybody, if they kind of follow that, that mental model, they're going to figure out what's what's really holding them back and then from there you find a solution.
Tim Reitsma 36:00
That's it. Oh, I love that it's summarized in know what matters most to you Research. Come prepared, just like in the workplace if you bring a problem to your manager without a potential solution, manager is going to go okay, now I have something to figure this out. But even with your doctor, bring in facts, facts, bring in some studies. Come prepared and even from past and podcast episodes with doctors that they appreciate that and you know, keep keep pushing, keep advocating for yourself. I love it.
36:36
And, hen, thank you for coming on sharing your rare condition with us. Rcpd, I'm going to have all the notes in, or all the links in the show notes as well, just because I still don't know much about this and I know yourself and now your son potentially has this condition as well. You said it well the best thing we can do is educate ourselves, not just on the conditions we live with, but if our friends and family are sharing conditions that they live with. Take the time, research it, spend a bit of time, takes 10 minutes, read a little bit, have a better understanding, because that's how we're going to continue to strive to end the stigma. So, henry, thank you so much for coming on, and we got to get our families together again soon.
Henry L 37:25
Love it, we'll go for beers and we'll have a burping contest.
Tim Reitsma 37:28
Oh, I love it, let's do it. Yeah, yeah, we may, or may not record that Probably not but we're going to have some fun doing it. For those who are tuning in. Thanks for listening and thanks for all your support. What helps Invisible Condition grow is by liking, subscribing, but, most importantly, sharing out the episodes. Share this with your friends and family. You never know, maybe somebody's living with RCPD which you might not know, and might not ever know.
37:57
So share this episode out and, if you have the financial means, maybe consider dropping a donation that everything that we pull in or I pull in goes directly into supporting the publication of this episode and future episodes. So with that, I appreciate you, henry, for coming on and I hope you have an amazing day.
Henry L 38:22
I appreciate you, Henry, for coming on, and I hope you have an amazing day. Thanks, Tim, it was, it was my pleasure and, uh, um, thank you for having me here.
Tim Reitsma 38:28
I hope to well hopefully I don't have another condition to be on here, but, uh, I'm glad, I'm glad we had this chat. I hope you don't have another condition and but if you do, you know where you can share it and uh. But uh, yeah, have a good one and we'll talk soon.
