Resilience Is Beautiful: Deanna Steinle's Journey Through Rare Disease, Diagnosis, and Hope

For nearly two decades, Deanna Steinley lived with unexplained symptoms that baffled doctors. An athletic child who grew weaker with physical therapy instead of stronger, she endured surgeries, frightening complications with anesthesia, changing life plans, and years of uncertainty before finally receiving a diagnosis of myasthenia gravis in 2017. In this conversation, Deanna shares the emotional reality of living with a rare neuromuscular disease, why early diagnosis matters, and how delayed answers affect every aspect of a person's life.

Beyond the medical journey, Deanna opens up about the often overlooked impact chronic illness has on relationships. She discusses losing friendships through isolation, learning new ways to communicate with her husband, navigating the anxiety of introducing herself in new communities, and why simply asking someone with a chronic illness to participate can be one of the greatest acts of inclusion. Her perspective reminds us that illness doesn't only affect the individual. It reshapes families, friendships, identity, and connection.

The conversation ultimately centers on resilience. Through her advocacy platform, Resilience Is Beautiful, Deanna explains why resilience is not about overcoming adversity once, but about continuing to move forward every single day, even when the challenges never completely disappear. Whether you're living with chronic illness, supporting someone who is, or simply facing difficult circumstances of your own, this episode offers hope, perspective, and a powerful reminder that our hardest days do not define us.

Transcript

Host 

We are here with Deanna Steinley, who has an amazing story and journey of her own to share. And I'm not going to spoil anything. I wanted to walk you through all the beats of her own kind of life story of how she kind of ended up on a podcast like this. So thank you. First of all, thank you so much for being here, Deanna.

Deanna Steinle 

Thank you so much for having me.

Host 

So tell us your story. Tell us why you're here and and your whole journey into this space.

Deanna Steinle 

Absolutely. It it really was a journey through pretty much my entire childhood. We just didn't know what it was. We didn't know how to look for it. But my doctors never ever gave up on me. I had an incredible primary care physician that always looked at me and said, This is a very athletic young girl. This is not growing pains. This is not something that she's going to grow out of. And he kept digging for me. He just didn't know what he was looking for.

until more awareness came out about it. And that's really why I I continue to do what I do. Because I don't want someone to have to wait decades to figure out what's going on. And so it landed me here doing exactly what I'm doing and that's continue that awareness. I was diagnosed officially in 2017 with a rare neuromuscular condition called myzothenia gravis. And basically at its core

We lose the signal to every single one of our voluntary muscles. Anything that you can tell with your brain to move, to to expand, to contract, all of those things, we have the ability to lose that signal because of some blocking mechanisms. Where it becomes fatal is people don't realize that your diaphragm is a voluntary muscle. Singers have to push to project to speak and to and to make things louder.

when you when you push that air out so your diaphragm, we lose that connection and we're unable to ventilate and so we go into respiratory failure. I always say that I could walk into a an ER room and I couldn't move my arms and my legs and there used to be an old TV show called Gumby. I could look like Gumby and they really wouldn't care. They care about my breathing and my swallowing because that's where the fatality comes in. And therefore we just have to remember and

And highlight about our disease that it's not just because we're tired. It's not because we can't just lift up things. There truly is a potential fatality consequence if we don't get immediate help.

Host 

And how did you start? Talk to me about the actual journey of discovering it. I know you said the doctors kind of said something was wrong, but what are the symptoms that led them to like investigate and how long did it actually take them to kind of nail down the diagnosis?

Deanna Steinle 

When I was in middle school I was very athletic. I w I soccer, swimming, dance, I was in the marching van, everything you could think of, I had my hands in it. And with that, as a kid, you sometimes get a little clumsy and you may twist your knee or or have a arm injury or things like that. All the things that you would normally do to help those recover, say like physical therapy, we would continue to work the muscle over and over and I would get weaker. And it just completely

Perplexed my doctors of this doesn't make sense. But every time that they would immobilize whatever was injured, it would start to feel better. And they go, This doesn't mechanically make sense because we should be making that muscle stronger through repetition. But as long as we I was literally in high school for months, from my middle of my, I guess, from my quad all the way down to my shin bone was an immobilized knee brace.

And I was on crutches going through high school because I had hurt my knee, but the only way to make it better was to put it in this huge device to keep it from bending, which is normally what they do for like big surgeries. They usually don't do that for like a twisted knee or something like that. But it seemed to help. Or broken bone. Exactly. You're completely immobilizing those things.

Host 

Yeah, or a broken bone where you need them.

Host 

When you say it seemed to help, it did it help with the pain or with the actual healing of the muscle tissue? What do you mean it helped?

Deanna Steinle 

So with the resting portion of that, it allows the muscle to now mechanically I don't have my PhD my PhD in this, but with rest, you should see improvement with those muscle groups. And therefore by immobilizing it and making it stop moving, stop it from, you know, contracting, you're able to get that momentum in your healing process.

Host 

Got it. Okay, so that's and and how long did it take for them to actually nail down the diagnosis and how did getting the diagnosis change the trajectory of how you experience life and and went through kind of maintaining a lifestyle with it?

Deanna Steinle 

When we were in in the midst of all of the sports injuries and everything, I actually, my junior senior year of high school, I was getting some infections. I was getting very, very sick quite often. And I ended up having to have a couple surgeries. When I had those surgeries, my aftercare was not normal. I was having troubles waking up.

I was having trouble swallowing after surgery. I was having things that shouldn't be happening on a young normal n basically healthy female were happening in those post op care situations.

To the point of in one of those surgeries, after I had it, my doctor, the surgeon who didn't know me, unlike my primary, he was like, I don't know what's going on with her body, but if it doesn't turn around, she's not going to be here in a year. Like we don't we don't know what's happening. That conversation and the way that I was physic physically feeling altered my next step to go to college. I had been accepted to out of state schools, school schools that I had always dreamed of going to.

I ended up staying closer to home because as a young person and having all these things happen to me, I was like, I don't want to leave the people that know me. What if I go out of state and I have this happen and something and it just continues to get worse? True fear started to set in. So it actually changed my my entire course of like what I had always dreamt of as a little girl going to do certain things and get certain degrees that I wanted at that time.

So I stayed closer to home and and got a a got a degree closer to home.

Deanna Steinle 

Which again, I was in a four-year process. I graduated, still going through these ups and downs of everything that I was going through, got married, and in 2017, after my facial features finally presented in a way that the doctors could say, That should not be happening. We have a n a much narrower list to look at now because you have facial features that are now impacted. All the other things could mimic other conditions.

But when you start getting facial drooping, there's a very small class of things that is going to present that way. So if you look from middle school through high school, through college, all the way through getting married, you're talking about couple decades worth of trying to figure this out. And they could not see it until the outward physical presentation happened. And I d that's why I do what I do. I don't want someone to have to go through that, almost losing their life because of an anesthesia complication.

When this could have been prevented, if they had known what to look for.

Host 

Yeah, that's incredible. So just this you had kind of a black hole of a couple of decades where you didn't know what it was, you just knew you had a severely altered life in different ways.

Deanna Steinle 

Absolutely. Made different decisions depending on where I wanted to go, what I wanted to do, changed what career path I wanted to go into. And ultimately with any chronic illness, those are decisions people make every day.

Host 

Yeah. Looking back on it now, I mean not to put any blame on the doctors or anything, but is there something that you could have seen earlier that would have gotten clarity or w did you really have to wait that long?

Deanna Steinle 

I actually got asked this on a panel one time and I really thought long and hard about it because again, like you're saying, you're not wanting to put blame on anybody because they did not know what to look for. They didn't know what they were seeing with the different symptoms that were presented in front of them, particularly 20 years ago. but I always do wonder

Our umbrella that we fall under is neurology. And I never saw anyone in neurology until I was diagnosed. So I always wonder through all the GIs, through the OBGYNs, through the endocrinologists, the swallow people, like all these different specialties that I saw, at what point would have someone in those categories been like, let's call neurology.

Host 

Mm-hmm.

Host 

Wow.

Deanna Steinle 

What would have sparked them to say we need to get them on the phone and talk about it? I don't know because that that's all different. Where do they get their degree from? What information have they lived through before? Those are doctors' experiences. So I don't know what it had to have changed for them to pick up the phone to call neurology.

Host 

Do you feel like if you saw a neurologist earlier in the process, they might have s thought that this was what was going on?

Deanna Steinle 

Honestly, I don't know because every time I did a test, it was always borderline. Like on the swallow studies. Yes, there was complications. Yeah, I think if I had seen one immediately after a very specific surgery that it that where I was on speech therapy for eighteen months, I I was I really, really struggled to I learned American Sign Language. I couldn't communicate. There was a lot of things that were happening. I think at that surgery, not the other ones. I think if that one had been

A consult with neurology? Maybe. Maybe. Because I think they would have looked at the anesthesia part. They would have looked at the trauma. They would have looked at all these things and said potentially with involving the swallowing function, maybe they would have looked into that.

Host 

Gotcha.

Host 

And how common is it for people in this with this disorder to need to be intubated and kind of extreme measures because the breathing and the swallow gets so severe?

Deanna Steinle 

Unfortunately, it happens way too much. I thankfully I've been able to have positive force pressure air versus like a CPAP, BIPAP. I've not to have intubation because my team was able to see it going into crisis and head that off. Unfortunately, there are people in my community that we I know every day that somebody is being intubated and needing help because either treatment is not working.

Not because they weren't getting help quick enough, it's just not working. or they were delayed care due to insurance issues or coverage issues or access issues and then they ended up in the situation that they're in because of delay of care.

Host 

Wow. And so it really becomes a timing thing, it sounds like.

Deanna Steinle 

Absolutely.

Host 

So since two thousand seventeen, you've, you know, gotten your diagnosis and it and it sounds like you, you know, have become an advocate for the community. Tell me what that journey's been like.

Deanna Steinle 

I always say it's multifaceted. I never thought I'd be here. I have had the most incredible journey from just normal, like what I consider normal online advocacy work. You put your story out there, you connect with the community to building a relationship with industry partners, being in a film that went international and which is the Rare Connections film that we did that we did last year, that I'm incredibly proud of.

Host 

Okay, yeah.

Deanna Steinle 

And in the film we talk about the relationship aspect of it all. We talk about the people in our lives. And we went from it being in this social media space to an international film space to being on international panels and platforms at conferences. And it just it has just continued to grow and grow. And I've been at this for a very long time. I was a speaker before I was diagnosed. So I just flipped the switch and changed what I was talking about and

And I'm very blessed that I've ended up here.

Host 

And is your you know, what is the message that you try to convey when you're on these panels and when you're making these films and and talking with these people? What are you trying to get people to walk away from after hearing your story?

Deanna Steinle 

My my platform is resilience is absolutely my platform is called resilience is beautiful and I there's a couple messages that come from it and it it is that your journey is unique and beautiful to you. And just because it doesn't look like somebody else's journey doesn't mean that it's wrong. Just because your advocacy looks different doesn't mean that it's wrong. And in the relationship category, just like what the film highlighted.

Host 

Or walk away with

Deanna Steinle 

every single one of those relationships look different doesn't mean that it's wrong. And I want people to be empowered by that. And I want them to be empowered by the fact that the things that you have gone through, the hundred percent of your worst days that you have survived has made you who you are. And that is just really spectacular.

Host 

You know, you touch on something that's very personal to me in the work I do. I work with relationships quite a bit. How has this affected the close personal relationships in your family, with your marriage possibly, with friends? You know, we don't talk, we talk sometimes about the disorders, the diseases, the different things that people go through, the tragedies, but we don't talk about the kind of the the second concentric circle around the issue, which is the way it affects the relationships you have.

Have you felt those effects personally?

Deanna Steinle 

When I was diagnosed and my day to day activity changed drastically, getting out of the house, having to spend more time in bed because we were trying to figure out what treatments were gonna help me get that momentum back, losing my career path that I was on, basically changing my entire life. You lose touch points with people that you've been with for decades because they're no l longer part of your day to day activity.

And you start to see people kind of start to float away. Not because it's intentional, but it's because that touch point is no longer there, like being in the office, being at schools or or sporting events and things like that, those touch points are gone. And when those start to go away, the intention has to be there to make that relationship last. And if it's not a priority, unfortunately, it may phase out. That relationship may phase out. And I've seen that

Firsthand and is it it's extremely isolating. And that's why the film I wanted to do it was because I got to tell my best friend why she matters in a very deep and intimate way that we really as society don't do very often. And it was just I'm here because you saw me for who I was and you never gave up on me.

Host 

I'm sure the relationship you have is, you know, even more profoundly deep because you get fewer relationship opportunities essentially. when you had those moments of isolation, how did you cope? What did you do to kind of deal with it?

Deanna Steinle 

I am very, very blessed. I have an extremely, extremely supportive husband. And we have gone through our own journey through our marriage with this. We've gone through our own communication building with this because a lot of our communication changed through the chronic illness phase. He helped me figure out things to help me not to feel as isolated and championed me in that.

If we needed to make adjustments, we made adjustments. If we needed new technology, we got new technology. He knew that a big part of my healing and continuing to want to fight came from this need of connection. And if I was being isolated basically against my will at this point, how can we get it back in our own control and let's adapt? When we moved, we moved last year.

And one thing I did not realize that I would have to juggle with was when I moved and I got into a new ecosystem, a new group of people, and in being in a different environment where all these people were going to randomly be introduced to me very, very quickly, over five to six hundred people. Instantly they were going to be thrown at me and say, Who is she? I had to decide how much of me in my journey I was going to communicate to this body of people.

What did that look like? And that could be someone changing jobs. That could be someone moving like I did. There's all kinds of ways that that situation comes about. But I felt that pressure of if I do this here in this new place, am I going to force isolation on myself? If I tell them about my journey, I tell them about how sick I am, I tell them about all the things I can't do.

I have this new group of people, and if I share that, are they gonna say, she can't go, she's too sick, and they'll never even ask? Because they don't have that history of me of being able to do things like where I used to live, where I grew up. People have known me my whole life. They know that I will, if I can, attend something. But this new group, how do I wanna show them that I can do it and not automatically get isolated the moment that I introduce myself?

Host 

Yeah. So there's some sounds like there's some social anxiety that comes up as a result 'cause you're trying to navigate the narrative with the reality and the connection with new people.

Deanna Steinle 

Hundred percent. And it is very much a a little little person on my shoulder and I have to make sure I keep her in check. We have to make sure that that she's good. And thankfully, you know, in the move, a lot of the things that I was worried about resolved itself and I didn't have to try as thought as as as hard as I thought I would, but I still did have to navigate some conversations to say, Yes, I do have this.

But if I can do it, I want to come and join you in these activities. You just gotta ask. And that became more of the conversation, not so much about my condition as much of just ask me. I would rather tell you no a hundred times than you never ask me to attend.

Host 

Yeah, I think that's a good policy. I th you know, if if anyone can can take something from this as a normal individual who's who who isn't really even involved in kind of medical issues, it's reaching out and asking people who are struggling because the the the idea of inclusivity is we just overlook it. If someone sees a wheelchair or crutches or something they don't understand.

They just say, Well, I'm not I don't want to go there. I don't want to bother. But it's it really does kind of build a a pretty strong bridge when you have the courage to ask and just kind of get over that humble.

Deanna Steinle 

A hundred percent.

Host 

You talk about resilience a lot on your platform. What have you learned about resilience?

Deanna Steinle 

When I was first diagnosed and people kept telling me that hold on to something that matters. I was looking through my faith, I was looking through scripture, I was looking through other people I looked up to, speakers, taglines that they use, books that they had written, and a lot of them were overcoming or persevere, you know, and those were words that really

really stuck out and I and I admired it. I I did. I and I was like, why don't I feel a connection to that? And I I I really struggled. And when I was looking through my own journey, I kept saying to myself, particularly with MG, because we do not have a cure, the journey is always going to be going. I I will never not have to have treatment at this point. I'm on it for the rest of my life.

I will always have ups and downs. I will always be in the advocacy space in some way and that's always gonna look different. And to me, resilience when you look at the word.

It's a word that means keeping on going. It doesn't mean that the journey is in the past. Whereas if you say persevered, it's in a past tense conversation. Resilience to me is always in the present and it just keeps on going. And that's why it stuck and it became such a core of who I am because even on my worst days, I can be resilient and it's going to look very, very different from me to you, even if it's just brushing my hair. Gosh, that was resilient today. That was a big day.

And I and it and it should be celebrated.

Host 

Sounds like you you found a way to kind of adopt that one word as a part of your identity so that the idea of pushing through, no matter the challenge, became associated with who you are. And that's really beautiful. That take that took a lot of strength, I'm sure, to kind of get there.

Deanna Steinle 

I think it really hit me hard when there was people that I did not even know were watching me online, you know, on news news interviews and and the in the film and all these things, they would come up to me and they would have a meme or send me a meme or send me something and it would have a word about resilien or resiliency in it. And they thought of me when they saw that. And they would and they thought, hey, I should send this to her. She would love that.

That's what I knew that this was going to be every ounce of me because it it resonated. It resonated enough that it made their journey better. They didn't think about the hard days in my journey. They thought about the stuff I'm keep pushing forward.

Host 

Talk to me about the film. How did it come about? How did how did it actually come to be?

Deanna Steinle 

Mm-hmm.

man, it was sorry.

Deanna Steinle 

The film came about when Alexion reached out and said, We we love what you're doing online. We think that you'd be a great fit. We've watched you for a while. Would you be interested in participating and sharing a part of your journey? And let let's explain why we want to do this. And I've been asked to do other types of media and other types of interviews and things. And what I loved most about this was that we looked at three different patients in different stages of life.

And we looked at different people that they had this amazing relationship with. One had a spouse, one has a parent, and then one has their best friend, which is me. And when I heard about why that that was the focus and why it mattered, it was exactly what lined up with my own advocacy work and what I champion out in the real world. It didn't feel like telling patients that we've got a we've got this all covered, it's fine, you don't need to worry about your condition, it's not a big deal. That was not the tone.

of the film. It was never meant to be the tone of the film. And that was an immediate yes for me. We weren't giving patients false hope. We weren't having this conversation of what the future was supposed to look like. It was a in the present conversation and letting people look at the people in their lives that hey, I do have these people. I might be taking them for granted. I should be telling them how much they mean to me because it literally could save someone's life.

Those relationships with those patients can literally be a life changing situation.

Host 

Such a beautiful message. And I I gotta say, you know, looking at the clips and hearing the story, it's inspires me to keep pushing on whenever I see difficulty. And y and the message is so universal. It just you you take it and you you see it in your life in small ways and you just keep pushing forward. So I can't thank you enough for spreading that awareness and and putting that message out in the world.

Deanna Steinle 

And and you hit it right on right on the right on the head that each patient is so different. And you know, we have someone that's an international patient, but yet there's this common thread between us, even though our diagnosis is different, all I mean, our diagnosis, our journeys are different, our treatments are different, everything about us is different. Stage of life, relationships, but there is that common thread that connects us all, and that's really the beauty of the

MG, miso the gravis community, is we have that core thread and we are called the snowflake disease for that very, very reason. We're all diagnosed, but we all are so uniquely different in every aspect of our condition.

Host 

I suspect with the way that you're presenting and the the the message you have, you'll probably keep doing this forever. Is it am I am I kind of right doing that?

Deanna Steinle 

If that's the plan that I'm set out to be on, then that's what I'm gonna keep doing. Because there's a patient every day getting diagnosed that says, I have no idea what to do. And I want them to say, We've got you. There's a community that's got you. There are people that that have your back. we we will help you champion this new section of life that you were never taught how to navigate.

Host 

Well I

Host 

Beautiful. Well, why don't you share? I'm gonna put it in the notes in terms of how to type it up and the spelling and everything, but share verbally where people can find you, how they can find you on Instagram and your different socials, and if they wanna connect, hear you speak and and you know, use all of your advocacy prowess to the best of their ability.

Deanna Steinle 

If you would love to connect and I'd love to see you there, I'm on every social media platform under Resilience is Beautiful. And you can even you just type my name. Both are connected, Deanna Steinley. I'm also on LinkedIn where I get to share about medical journals that I've been quoted in, about new advocacy work that I'm in, speaking events where I'll be next. And I also post about the film. We we put out clips pretty often about

Host 

Yeah.

Deanna Steinle 

different sections of the film and then the entire film is linked on my Instagram as well. my email is listed on all of those platforms as well and you can reach me there. The film does live on YouTube under the Alexion page. And so if you do happen to use that platform, you can look up the rare connections in J GMG on YouTube and it will pop up for you.

Host 

Amazing. Deanna Steinley, thank you so much for being part of the show and and coming here and telling us your story and sharing so much good hope and resilience with everyone who listens.

Deanna Steinle 

Thank you so much for having me. I I really love doing these because they're all so unique and different. and I think every everyone that we do, it's out there for someone and I can't wait to see how it impact how it impacts their life in a positive way.

Host 

Me too.