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Welcome to the Becoming Buoyant podcast, where we’re all about sharing our stories as entrepreneurs with chronic illnesses, making the invisible visible and breaking stigmas along the way. In our first episode, I’m sharing the heart behind Becoming Buoyant and my own journey with invisible illnesses!
Welcome to the Becoming Buoyant podcast where we’re all about sharing our stories as entrepreneurs with chronic illnesses, making the invisible visible, and breaking stigma’s along the way. In each episode, you’ll learn from expert guests exactly what it takes to build a meaningful and sustainable business without sacrificing self care. We want you to shine your bright light on the world, friend, and are honored to be part of your creative life giving journey. Let’s dive in, shall we?
This is the Becoming Buoyant podcast with Emilie Steinmann, episode #1.
[00:39] Hey friends, welcome to the very first episode of Becoming Buoyant. I’m your host, Emilie Steinmann and I am so grateful you’re here. Now on this very first episode, it’s going to be a little bit different from the future episodes because I really, really want to explain what Becoming Buoyant is all about, define a couple of things like what is an invisible illness, what’s chronic illness, how are they the same, how are they different? And then of course, where can you find us, and tell a little bit about my story. This particular podcast and YouTube channel is not all about me, but I do want you to know a little bit more about my story so that you can understand where I’m coming from, when I interview others and when I am sharing particular advice that I have found useful over the years. So without further ado, let’s go forward and explain a little bit more about what Becoming Buoyant is and all that fun stuff to come.
[01:34] So first of all, Becoming Buoyant is a podcast and a YouTube channel that is all about celebrating, empowering, inspiring, and educating creative entrepreneurs with chronic health conditions. Now, that’s a lot, that’s a big lofty goal. But I know it’s possible because I’m not doing this alone. So what this episode is all about is explaining things, but going forward, you are going to be hearing interviews from expert guests who know exactly what it’s like to build a business and a brand, and a life while all having chronic health conditions, disabilities, or while being a caregiver to somebody who has a chronic health condition. So, a lot of these interviews will revolve around storytelling and will have a lot of business advice and will help break a lot of stigmas that happen when we don’t have real honest conversations about what’s going on in our true lives.
[02:38] So, let’s talk a little bit more about what that stigma could be. So when we think of a disability, we think of dis ability, right? And we think of, well, the synonym to that or the equal word to that would be unable and I want to break that stigma right off the bat. A disability or chronic health condition or invisible illness does not mean unable. It means that we may just have to adapt things and we just may have to do things a little differently or maybe even at a different pace, but we are all uniquely able to do a particular thing and maybe a whole series of things. And I believe every single one of us can make a very meaningful income through entrepreneurship if we are perfectly aligned with what we are meant to be doing. So that’s the first thing I want to get off the bat is disabilities, invisible illnesses and chronic health conditions,
[03:38] all three of those things can be interchangeable terms, but that does not mean you’re unable to do the things that we say we are going to do and it doesn’t mean that we’re unable to provide the services that we offer as a business owner. It just means that we have a few extra challenges in the way and we’re perfectly aware of what it takes to get through some of those challenges to do the very best job we can for our clients and our customers. So, I hope that that small lesson is a glimpse into the future of what you’re going to learn as we go through the Becoming Buoyant show. So next thing, you heard me say disability, chronic health condition, invisible illness, let’s talk about what does that all mean? So some of these things are actually pretty interchangeable. Invisible illnesses, while that’s pretty obvious, but let’s talk about it.
[04:36] I have an invisible illness, which is also technically a chronic health condition, which is also technically a disability. But because I look very well on the outside and I am always basically smiling despite anything I’m going through, I look totally normal and totally fine. But on the inside, things don’t work the way I want them to. To be completely honest, if it wasn’t for this brace from dislocating my elbow the other day from driving, I would look totally healthy and able, so people often confuse my smile for being completely healthy. Now what is it that I have? I have Ehlers-Danlos Syndrome and specifically the hypermobility type. Now there are a lot more things on my laundry list of diagnoses, but this is my big umbrella diagnosis. This is the one that really affects everything I do and there’s a lot of co-morbidities or I guess you could say related conditions to this Ehlers-Danlos or ED syndrome.
[05:47] Anyway, so what this is, is a hypermobility type disorder where I have very strangely stretchy, flexible, connective tissues and that’d be skin, that is tendons and ligaments and all of that fun stuff, not muscle, but all those things that kind of hold your whole body together. All of it. So what does that mean? Yeah, I’m very flexible in a lot of ways, but it also means I have spinal compression. So it typically means my neck and my back are very, very fragile. It means that I can be driving and turn a corner and I dislocate my elbow. That was the first time that happened, but I’m expecting that now that it happened, it’s probably going to happen again. It also means that I have to be really cautious how far I walk in a day because my kneecaps may actually move out of place. It happens.
[06:41] It’s weird. I didn’t even know it was a real thing. In fact with my particular story, I knew something was not quite right when I turned 19 and I got really, really, really, really, really, really, really, really sick. I was sick in college and everything changed from there, but looking back a little bit further and now that I have a diagnosis, which just happened this year, by the way, now that I have a diagnosis, after waiting for 13 years, I’m realizing that all of this was happening before that. I look back to my childhood and I could sit in ways that my friends couldn’t sit. I was very flexible. I often blacked out on the soccer field when I was playing soccer and that wasn’t quite right, and so now I’m thinking I have another condition. That’s pretty likely. It makes a lot of sense. Now looking back, a lot of things that bothered me, like when I would be studying in high school and college where I’m reading a textbook, now I understand why my neck and my back hurts so bad to the point of needing to go to the chiropractor multiple days a week.
[07:50] My friends didn’t have that issue, but I did and I never understood it. Now I get it. Now I understand. And this diagnosis was a huge relief for me because I could put a name to the strangeness that was going on inside of me that was not visible on the outside. So long story short, I know my story matters and my story could be told because it wasn’t until I heard other peoples’ stories that I knew what to call my own. And now I am not telling you that I self diagnosed, but what I did do is I walked into my new doctor’s office and I said hi, nice to meet you, I know we have 15 minutes together and here’s what I’d like to discuss. I brought a whole laundry list of things like top to bottom, written down, and I said, here are all of the conditions that I have officially been diagnosed with to this date, including TMJ, including chronic migraines, including IBS, including all sorts of crazy things that just never made sense.
[08:40] And then I said, here are all the things that don’t fit into those diagnoses, but I’m still concerned about on a regular basis. And here’s what I theorize is happening with all of this. And I mentioned Ehlers-Danlos Syndrome. And he said, yeah, that really sounds likely. I’m not the person that would diagnose you, but I hear you, I see you, I believe you and your story matters. He told me that. He said, I want you to walk into a doctor’s office, my doctor’s office, and I want you to feel like your story matters and you don’t have to try to convince me that what you’re feeling is real because what you are feeling is real and we need to get this figured out. So what he basically did was he said, for this and this and this, we need to send you off to rheumatology, for these couple things,
[09:58] you should be talking to gastroenterology and for this particular thing, you need to go to physical therapy and an orthopedic surgeon because he then later diagnosed me with a hip dysplasia issue. The last thing of all of that is he said, for Ehlers Danlos, we need to have you talking to a geneticist about this. And so I walked out of that doctor’s office that day feeling so empowered that somebody not only listened to me and they saw me as a real person, not just a number, and he believed me. He knew that what I had been going through for 13 years or more, was real.
[10:37] He believed that it was real and that I was not just holding onto something that was just all in my head. And that made me feel so speechless. Really. I just sighed because I felt so speechless that this is one of the first times that this has ever happened to me while talking to a healthcare professional, and I’m so grateful. I am truly so grateful for that. So as the days progressed, I started calling to all of these clinics and all these places where I had a referral, or they called me of course, and got into the appointments that I needed to get into. And I finally spoke with a geneticist who, we talked, he evaluated the joint mobility that I had with hyperextension, which means basically your joints go a little farther than they should, which is really awkward looking, but I’m not going to do it.
[11:28] I do not do basically party tricks is what people call them. I’m not going to show you how I’m hypermobile or all of those things because I don’t want, first of all, I don’t want anybody grossed out, but also it’s not safe for my joints to do that. So I’m going to try really hard not to do any of those things in life in general or even on this show, but we went through a lot of those things. He had me try to show him all of the details based on very specific medical criteria of what hypermobility is like. Then we did some blood testing that ruled out a couple other varieties of Ehlers-Danlos syndrome and we came to the conclusion that I have the hypermobility type, which is very common in that particular condition spectrum, but it is still considered a rare disease.
[12:17] So all in all, this is hereditary and is something that now looking at it, I know that my mom had it, I know several other family members probably have it and I just happened to be the first one to go in and find some answers. So I am not by any means at the end of my health journey. I still have a whole list of things that I need to get checked out and I know that there’s a lot more ahead. So as we get going on this particular podcast and YouTube channel, you may hear my story progress or change, and just know that you’re coming along this journey with me and I’m really grateful for that support. I am really grateful for all of your encouragement. And in fact, share it with your friends, if you know somebody who’s going through some sort of wild or crazy health condition or even someone who’s super normal, like did you know a lot of us in the creative industry have a mental health condition like anxiety or depression?
[13:24] If you have somebody that you know that’s even going through something like that, that is actually really common, please share this with them. And if they are interested in sharing their story, just imagine the waves of impact we can have by sharing our story and sharing that our lives can be amazing and beautiful and meaningful, and that our businesses can support us in ways that we want it to. Even though we may have health hurdles, we can do this, we can do this, friends. And by having these real conversations, by being that extra level open about what we’re doing and what we’re going through, that’s going to help so many people. And if you feel that this is going to help somebody, please share. I would be so grateful to have you help me make that impact on the world and know that we’re making it a better place and know that others are not going to feel so alone in what they’re going through. So, I hope you enjoyed this episode and take care, and have a wonderful rest of your day.
Hey friend, thank you so much for tuning into today’s episode of Becoming Buoyant. It means the world to me when I can read all of your comments and reviews, so if you’re listening on iTunes, please go to the leave a review section, send me a sweet little message and if you really love the episode, you can leave some stars. Hopefully five would do the trick. If you’re watching on YouTube, make sure to like this episode if it resonated with you, leave a comment if you have some suggestions on other people that might want to come on, and of course, let me know what you think. And then, make sure to subscribe, on either platform subscriptions mean the world to me. It tells me that what we’re doing here on Becoming Buoyant makes a difference. So, I hope you have a wonderful day ahead, and I hope you tune in to the next episode of Becoming Buoyant. Take care.