Evoke Greatness Podcast

Lead Beyond Limits with Jennifer Koster (Part 1)

• Episode 163

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🎧 Episode 163: Lead Beyond Limits: Thriving with a Hidden Disability with Jennifer Koster (Part 1)

In this powerful episode, we dive deep with Jennifer Koster, an inspiring leader who shares her 30-year journey living with HEDS (Hypermobility Ehlers-Danlos Syndrome), a connective tissue disorder that remained undiagnosed until 2022. From college athlete to advocacy champion, Jennifer's story illuminates how personal challenges can become a source of unique strength and leadership wisdom.

We explore:

  • The challenging path to diagnosis and validation
  • Transforming limitations into pathways for empowerment
  • The grieving process of adapting to progressive physical challenges
  • Finding community and building your personal "tribe"
  • Overcoming internalized ableism and shame
  • Leading with curiosity instead of judgment
  • Building resilient teams through diversity of experience

🔑 Key takeaways:

  1. Receiving a diagnosis can be empowering rather than limiting - providing validation, community, and better healthcare outcomes
  2. Reframing our challenges helps transform our relationship with them
  3. Intentional language choices can dramatically shift our perspective on disabilities
  4. Learning to ask "what if?" opens new possibilities beyond perceived limitations
  5. Leadership lessons from living with a hidden disability include adaptability, resilience, and authentic team building

💡 Quotes to remember: 

"I'm empowered for independence." - Jennifer Koster's personal mantra

"I don't use that language anymore. I didn't hurt myself. I became injured because of my condition." - Jennifer Koster on changing self-talk

"She didn't see me as weak and barely hanging on... She saw me as a survivor." - Jennifer Koster on the power of others' perspectives

🌟 Featured Insights:

  • How receiving a diagnosis after 30 years brought relief and community
  • The importance of leading with curiosity over judgment in both healthcare and leadership
  • Taking feedback as data rather than personal criticism
  • Building teams of people willing to learn and journey together
  • Practicing essential self-care to prevent burnout

📚 Resources: As May is EDS Awareness Month, look for Jennifer's planned 2025 campaign featuring fellow "zebras" (the symbol of the EDS community) Watch for Jennifer's talk: "Lead Beyond Resilience through the lens of a hidden disability"

Connect with Jennifer: https://www.linkedin.com/in/jennifer-koster-mba-sphr-shrm-scp-1a648810/

A rising tide raises all ships, and I invite you along on this journey to Evoke Greatness!

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Speaker 1:

Welcome to Evoke Greatness. We are officially entering year three of this podcast and I am filled with so much gratitude for each and every one of you who've joined me on this incredible journey of growth and self-discovery. I'm Sunny, your host and fellow traveler on this path of personal evolution. This podcast is a sanctuary for the curious, the ambitious and the introspective. It's for those of you who, like me, are captivated by the champion mindset and driven by an insatiable hunger for growth and knowledge. Whether you're just beginning your journey or you're well along your path, you're going to find stories here that resonate with your experiences and aspirations.

Speaker 1:

Over the last two years, we've shared countless stories of triumph and challenge, of resilience and transformation. We've laughed, we've reflected and we've grown together. And as we've evolved, so too has this podcast. Remember, no matter what chapter you're on in your own story, you belong here. This community we've built together is a place of support, inspiration and shared growth. Where intention goes, energy flows, and the energy you bring to this space elevates us all. So, whether you're listening while commuting, working out or enjoying your morning coffee, perhaps from one of those motivational mugs I'm so fond of, know that you're a part of something special. Thank you for being here. Thank you for your curiosity, your openness and your commitment to personal growth. As we embark on year three, I invite you to lean in, to listen deeply and to let these stories resonate with your soul. I believe that a rising tide raises all ships and I invite you along in this journey to evoke greatness.

Speaker 1:

Welcome back to another episode of Evoke Greatness, the podcast where we explore resilience, leadership and the power of human spirit. Today, I'm excited to welcome my guest, jennifer Koster, a woman who embodies the very essence of what it means to lead beyond limits. Jennifer has lived with HEDS, a connective tissue disorder, her entire life, yet it took 30 years to receive a proper diagnosis. Since receiving that diagnosis in April of 2022, she has transformed her personal challenge into a mission of awareness and advocacy. Our conversation today is going to explore her journey from diagnosis to becoming a powerful voice in the EDS community, her perspective on leadership through the lens of a hidden disability and how embracing our challenges can become our greatest source of strength. As May is EDS Awareness Month, we're also going to discuss her evolution from making a single LinkedIn post in 2022 to going all in with public speaking and awareness campaigns, with plans to feature fellow zebras, the symbol of the EDS community in 2025.

Speaker 1:

Her talk Lead Beyond Limits. Resilience Through the Lens of a Hidden Disability has inspired many to reframe their own challenges and recognize the unique strengths that emerge from adversity. So join us for this powerful conversation about resilience, overcoming internalized ableism and finding purpose through personal struggle.

Speaker 2:

Jennifer, welcome to the show. Well, thank you so much for having me. I'm very glad to be here.

Speaker 1:

Absolutely Well, I'm excited to hop in and just really explore more of your story. I always like to kick it off and have you share some of your story that paved the way to kind of life as it looks like today.

Speaker 2:

Yeah, so when it comes to the journey to receive an HEDS diagnosis, I think it really stood out to me once I was in college. I was a college athlete, I was playing tennis collegiately and I was constantly having what I now know to be subluxations, tendon tears, ligament tears. But at the time when you're young and you're playing sports, you know you're just like, patch me up and let's go Like we have things to do. And I remember we were training in Florida and I was a freshman at the time and the seniors gave all of the freshmen nicknames. Now this wasn't like hazing or anything like that, it was all in love and it was all fun. But they nicknamed me fragile because the coach was always having to tape my ankles. I was dealing with tennis elbow, I would have a shoulder that was giving me problems and you know you kind of just started to think I'm a little bit unlucky, Like these injuries keep just occurring.

Speaker 2:

And then, as I went on through that, you know, young adulthood, I got a lot of other health challenges and concerns. I was going from physician to physician trying to find answers. People really weren't finding any succinct answers and so that was frustrating, almost makes you feel like you know, do they believe me what's going on? And so there were times where I would more aggressively try to advocate and seek some type of answers or diagnosis. And there were other times where I just had to completely take a break from it and just more just manage symptoms, because I just couldn't have my whole life be about seeking, and maybe that's why I think the average time to get a diagnosis is 10 to 12 years. So I always joke like I'm so above average because it took me 30 years. This is 10 to 12 years, so I always joke like I'm so above average because it took me 30 years, which is not an area of my life where I wanted to be above average, but maybe it was because I took those breaks of not seeking. But I'm really thankful that I started looking again in 2021-22.

Speaker 2:

And I was able to go to Yale for their executive health program where I was able to see their head, cardiologist, rheumatology, genetics, physical medicine, physical therapy and take this really collaborative approach.

Speaker 2:

And there was a lot of preparing for it, lots of tests and what I call the endlessness of poking and prodding that is life with EDS all ahead of time but ultimately resulted in that diagnosis when I left there, I had it, you know, car ride home and I would say that my reaction to that was lots of emotions, there were tears, but there was also just like a lot of relief that there was something that made sense to me and explained so much and that's been a resounding thread in everyone I've talked to with EDS that once they got a diagnosis there was this sense of relief because knowledge and naming something there's power, in that there's better health outcomes, in that there's better mental health aspects of that. And that was just. I'm very thankful that I had the opportunity to go to Yale and kind of take a turn, albeit a little bit late in life, still very impactful.

Speaker 1:

Yeah, I'm curious. So you talked a bit about like when you were an athlete and these injuries that you were sustaining, that were that really had no explanation to them. Did those types of injuries continue to occur? You know, as you went later on in your into your adulthood? It sounds like pain, maybe a lot of the symptom that you're navigating as well. Did those things follow you throughout?

Speaker 2:

Yes, absolutely, and for me they got progressively worse. That's not everyone's story with EDS. I mean, you mentioned in the intro about the zebra being kind of the representation for those in the EDS community and they say, like, just like, every zebra has unique stripes, right, if you've met one person with EDS, you've met one person. So that's not the story and I don't want to spread any fear, but for me it did get progressively worse. I mean, and I think the biggest thing with it is kind of a grieving process. So over time, okay, I can no longer be an athlete, okay, that's okay. And then now I can no longer walk even a mile and now I can no longer do things to help take care of my children physically or I had to do a lot of adaptive things and back when my children were young I didn't have a diagnosis. So you know, things like getting them in and out of the car seat were really, really challenging and we had to come up with like, how are you going to use your knee and like, like all these adjustments and how can, once the kids are old enough, how can, how can they help and be a part of it? So there is a lot of adaptability and resilience, just in kind of figuring out how to do life with these physical challenges.

Speaker 2:

And then I think, over time there is a grieving process of okay, now my circumstance is changing again, and is this just for a period of time or is this a new normal? And we're not sure, and you don't know. And so there's some of those mental resilience too in how are we going to approach these things? And it's a balance. I mean, you need to have your times to be angry or cry or whatever, but how long do you want to be in that down spiral? And what can you shift in your thinking or mindset to obviously honor and give yourself the space to do that, because all the emotions are there for a reason. But then what are you going to do next? And that's been some of the things I've learned to do over the years.

Speaker 1:

Well and you, having lived with these symptoms for 30 years before the diagnosis. Some people think, or might think, of a diagnosis as a limitation, but you framed it as this pathway to resilience. What do you think helped you reframe the way that you view this?

Speaker 2:

Well, definitely, having the diagnosis once it kind of sinks in and you work through some of the emotions. One of the biggest things is you can build your tribe, like we all need community. And now I actually have friends who have EDS and you know it's great to have all sorts of community your family, loved ones, friends, co-workers, partners but when you have someone in your community that knows your lived experience or something very similar to your lived experience, they kind of just get you and it's just so nice to have a place where, like, okay, this person just gets me. I don't think she would mind sharing. But the other day Christina texted me a picture of her freezer and said it just dawned on me that this is life with EDS and the only thing that was in there were all ice packs of like for wrapping around your ankle or the kind that go around your arm or, and it's like, oh yes, and I'm looking, I'm like I have that one, I have that one. So there's just there's something nice about having your tribe of people. It also just is empowering, because now you have more information, now you can learn things that you didn't know, and so, in addition to the connection, there's just actually better healthcare outcomes. It helps your physicians. Now they know already going in right, so they don't know what they don't know. And all the physicians I saw over the years I have no doubt that every one of them would have loved to have helped me get to a diagnosis, but they didn't know what they didn't know or I wasn't presenting in a way that was easily to put that together, which is obviously why, if the average is 10 to 12 years, that I'm not the only one with that experience. So I think reframing it for empowerment I think your question was about the reframe. That's how it's been for me and I might share one story with you about a gift that my son gave me.

Speaker 2:

So we were on a date. He might call it forced family fun. It is required. So we were on a date and I think we went to a coffee shop and afterwards he said and he was, I think he was 17 at the time he said, hey, can we stop at the store? I want to pick up something for my girlfriend. I said yeah, and I drove up there and I dropped him off and he's like aren't you going to come in? This looks like a store that you would be interested in. I said, oh like, look, honey, like the parking lot's full, I'm going to have to park way out there. I don't know how long you want to look around. I don't want you to feel rushed. I'm not sure I'm feeling up to standing that long. It's no problem, I'll like have my coffee. You take your time, I'll pick you up. Great, that's what we did.

Speaker 2:

So he actually walked back to the car and before we left he said can I tell you something? And you promised not to get mad. And you know, I think feedback is a gift, but when you have teenage sons, I wasn't quite sure what he was going to say and I think I said something like that depends if it's mean or stupid, but hit me up. And he said have you ever thought about getting a disability placard for your car? And I was like immediately. I was like honey, that's not. That's for people who have a lot more mobility challenges than me. And he said okay, maybe it's just something you want to think about than me. And he said okay, maybe it's just something you want to think about.

Speaker 2:

And I thought about it and I decided well, I don't decide, the doctor decides. I'll just ask them. And she said absolutely, you qualify, I would 100% give you one of those. And so then I got it. But then I didn't want to use it, and if I did use it, I felt bad about using it.

Speaker 2:

And I talked to this really great coach that I have about it and she said well, you need a mantra for when you use it like a reframe. And so I decided that every time I used it, I would say I'm empowered for independence, because my son's complaint was this vision that I would be a more active participant in his life and my own. And that's the gift he gave me, because now I go to volleyball matches by myself. I wouldn't have gone before if someone couldn't drop me off at the door. I can do things that independently that I wouldn't have done before and I don't feel bad about using it when I need it now, because I'm empowered for independence was my reframe, and so that's an example of you might not know an immediate reframe in your own life, but you could think on it and you could shift something for yourself, I love that and what keeps coming to my mind immediately as you began sharing, was you had a choice to make.

Speaker 1:

There was two choices you could make. That choice was to figure out how to frame it in a different light so that you could actually process through and navigate the emotions. You know, as you mentioned, grief, that's a real thing, and there was a choice in there and you chose to navigate that in a way where it wasn't going to be something. Although I'm sure there were many of days that felt dark, overall you made a choice that that wasn't going to be a dark cloud over your entire life, and I think that is your intentionality around. That I commend, because it would have been very easy for that, for you to have looked at it a different way, where it became even more debilitating than it already was, and so I love that you use the word empower, like empowering your independence, because, though you may not be able to park way out in the parking lot, you can still do the things because you're choosing, like you're choosing the path to navigate it in the most positive way you can.

Speaker 2:

Yeah, and I think now I ask myself more questions. I definitely use the question what if? All the time. So if I'm having some limiting belief, like I couldn't possibly go be a speaker at the NAA conference in Las Vegas, that's way too much for me Then I'll say what if I could? What would that look like? What would have to happen? What would I need to do different? What accommodations would I need? And actually this friend, Christina, that I mentioned, I often think about her because sometimes, if I don't feel motivated enough to ask what if of myself, I'll think well, what would Christina say? And she would usually say well, are you sure you can't do that? Because maybe there's a way you can. And so it gets you thinking about new opportunities.

Speaker 2:

And we talk a lot in coaching about making the upgrades. So if feedback is just data your own self-judgments or feedback from others is just data, then you don't have to be defensive, you don't have to feel blamed or shamed, and you can think offensive. You don't have to feel blamed or shamed and you can think okay, if that's the data that I have, what's the upgrade I could make? And maybe the answer is no. I'm going to say no to that I am not. It is not worth the risk to me to do that and that's fine. Or maybe you'll say yes, and then you'll collect the data and think, okay, I won't be doing it that way again. Or maybe you'll collect the data and think that was fantastic.

Speaker 2:

But I've had to learn not to have a lot of self-blame, self-ableism and shame around it. Even changing the language helps. Like I used to say, oh, I hurt myself when one of these things would happen, but I didn't hurt myself. I became injured because of my condition, so I don't use that language anymore. I try to use different language around it. So those are some of the things that I'm still on the journey of learning. It's not like I have this all figured out, but I have community now, which helps, because now we can journey together and not be alone.

Speaker 1:

Yeah, Our language. I think what we, as kind of mankind, forget is that our brains are so powerful that they listen to what we're saying, and so the language, to your point, is so important because our brain believes what we're saying repeatedly, and so for us to you know, it goes back to the whole neuroplasticity thing, right, like we train our brain. But we can actually untrain our brain or train our brain to think and view things differently, and so that's a perfect example of that of saying, okay, I need to be aware of the language that I'm using because of how that it shows up for me, how it's making me feel, and I need to identify it correctly, because it's not you that's doing this to yourself. I really love that. Like I think people don't understand how powerful our words and our language are, and until maybe we're in a situation like that where, if we just flip how we're framing it or how we're saying it, it makes us look at it completely different.

Speaker 2:

Yeah, I totally agree, and I also think that there's an opportunity to breathe language into others. So it can go both ways. It can go for ourselves and it can also go come from others. And there's a lot of comorbidities with connective tissue disorders and I had a period of time where I was hospitalized. It was questionable about if I was going to be able to pull through. And I did and it took months and months and months of recovery.

Speaker 2:

And I remember going to a follow-up visit with one of my physicians and I've never felt weaker. I couldn't even walk down the stairs. It was a long recovery process and I just felt the weakest version of myself I've ever felt in my entire life. And I went to this follow-up appointment feeling like this, like I could barely get all the air in to walk into the appointment. And I think she asked me how I was doing and I'm like I'm so weak, I'm so exhausted and you know I had all the real feedback, but it was all kind of negative and she said well, of course you are, but you're a survivor, and I had never thought of it that way.

Speaker 2:

She didn't see me as weak and barely hanging on and barely making it and lucky to be alive. She just saw me as a survivor and I was like that was such a gift that she said that to me and I really do think it helped with my recovery, because anytime I was in that really low point about it I'm like, yeah, but I'm a survivor, you know. And so I think at that point I didn't have enough in me to have that self-talk. So what a gift it was that someone could breathe that language into me to allow me to see myself differently in a challenging time.

Speaker 1:

Well, there's no doubt that this has shaped your life in general, but how has your experience with this? How has it informed your leadership philosophy and your approach to supporting others, you know, on your team, from a professional perspective.

Speaker 2:

Yeah, I think you know, before I gave that first talk, it was intertwining leadership lessons with lessons I've learned from having a hidden disability, and HEDS is often hidden because you can seem seemingly fine one day, have braces another day, and so a lot of times it's not something that's very outwardly noticeable to others, so that's why it's called a hidden disability. But I was actually on spring break in the movie theater and I could not stop thinking about this. All these overlaps because it was raining. So we're at the movies, all these overlaps. I could not stop thinking about it. And we got back to the condo where we were staying afterwards.

Speaker 2:

The family time was over, everybody was doing their own thing and I had committed to speaking to this group in July about leadership. It was going to be a talk I had given at NYU about I don't know I think it was the C-suite perspective on mission, vision and values. And I opened my phone and there was an email from the person that runs the group and she said actually I had someone drop out, could you speak? I think it was like May 2nd or May 3rd and I was like interesting, because May is EDS Awareness Month. It felt like a message, so I was praying about it because I'm a person of faith. And the next thing I did is I opened up my LinkedIn and there was this post from Craig Rochelle that said something like what if you made one bold move for the kingdom of God? And I was like, okay, I'm gonna speak May, in May. So I committed to speaking in May, but even then I still didn't tell her what I was going to talk about. I just said, sure, I can do the May day. And then I continued to pray on it. And then I asked her, I met with her and I said you know, I don't know if this is your, this is your group, and I don't know if intertwining personal experiences with leadership lessons is the vision for your group and where you're headed. And she said I love that vulnerability, please do that. So that's how that journey began.

Speaker 2:

That's a background just from where I was seeing the overlaps. But some of the main things that I see overlaps in is, you know, part of it is leading with curiosity over judgment, and not that you know, I'd like to assume positive intentions, so I'm not assuming negative intentions from anyone, but I've received a lot of judgment over the years, in particular before I had my diagnosis. That was not very helpful. Things like overhearing a physician in the hallway. Tell my dad, I think she really just doesn't want to play college sports anymore. She's probably just making this up because she wants off the team, which was not the case. There was nothing I wanted more than to keep playing.

Speaker 2:

You know I have lots of examples, and so one thing that I think I always try to and we're always learning and practicing leadership, it's never done is to try to lead with that curiosity over judgment, because we all make judgments. We don't may not mean to, it might not be on purpose, but it all happens, no-transcript. You can build that trust and relationship and understand it from someone else's perspective. Then you can listen to listen instead of listen to respond, and you might learn something about how to make that relationship better. What I mentioned before about taking feedback as data and looking for the upgrades, that's very applicable in leadership. No one wants to be judged, blamed and shamed if everything didn't go perfect. But if you can be like, hey, let's examine the data, what upgrades can we make? Now that we have that feedback, people can be much more aligned and then I think they're much more willing to come with their own, like, hey, this didn't go as well as I was expecting. Wonder, if we did this next time, how that would go. So that's some of it.

Speaker 2:

Some other important pieces for me are adaptability, flexibility and resilience. So with EDS, you have to constantly be adapting because you're not having the chronic pain in the same spots. The subluxations happen in different joints at different times and you want to be an active participant in your life. So you got to figure out how to keep going while still honoring whatever rest and recovery you need. You have to build your own team.

Speaker 2:

This one has been a big one for me. I've had so many physical therapists quit on me because I wasn't improving in their time frame. That was allowable under insurance and that would be so very like I could have an emotional down spiral about that. Every time a physical therapist would quit on me Because I didn't quit on me and I just wanted a partner to journey with. So I had to reframe it of. I choose my team and if you don't want to be on it anymore, no problem, I'm going to go find someone who will.

Speaker 2:

Now I'm not saying that's what you do with your team at work. That's not what I mean by team building, but at work you are building your team of all the people in their areas of strength. So if I have a physical therapist quit on me, they're not the right fit, so I need to find someone else that can be that area of strength. And with EDS, especially where I live, there are no EDS experts within a reasonable driving distance. So I have to build a team of people who are curious and willing to learn and journey with me, who are not necessarily an EDS expert in their field. And I think, if we take that approach to our team, certainly we want to hire experts. We need experts in value, value, experience and responsibility and commitment and loyalty and all of those things. But we also want teams that are going to listen, be curious, figure things out together, build bonds, deliver for each other and the customers. So that's what I mean by team building.

Speaker 2:

And then the other piece that comes to mind for me is self-care. And then the other piece that comes to mind for me is self-care, and I don't know just about anyone who hasn't said to me I think I've brushed up against the edge of burnout in my career. Or if you haven't, you know it might be coming. I think we all get to that point where burnout is a real thing and it certainly was for me and I think self-care with EDS looks one way and self-care is also really important in leadership and in the workplace Having our healthy boundaries and communicating well and building that alignment and clarity for the team. So those are some of the areas where I've seen a lot of overlap between leadership and lessons learned, I guess from my perspective on AGDS.

Speaker 1:

Okay, you know the routine. This is where I hit the pause button. I hope you enjoyed part one of Lead Beyond Resilience Arriving with a Hidden Disability with my amazing guest, jennifer Koster. Make sure to come back next week. You are not going to want to miss the second part of this really powerful conversation, where we dive deeper into how fate has shaped Jennifer's journey. We explore the surprising leadership lessons from living with a hidden disability and discover what the EDS community can teach all of us about resilience. Jennifer shares vulnerable insights about overcoming internalized ableism and offers practical wisdom on building supportive communities in both personal and professional settings. So make sure to check back next week as we continue this inspiring conversation about leading beyond limits.

Speaker 1:

Thank you so much for listening and for being here on this journey with me. I hope you'll stick around If you liked this episode. It would mean the world for me if you would rate and review the podcast or share it with someone you know Many need to hear this message. I love to hear from you all and want you to know that you can leave me a voicemail directly. If you go to my website, evokegreatnesscom, and go to the Contact Me tab, you'll just hit the big old orange button and record your message. I love the feedback and comments that I've been getting, so please keep them coming. I'll leave you with the wise words of author Robin Sharma Greatness comes by doing a few small and smart things each and every day. It comes from taking little steps consistently. It comes from making a few small chips against everything in your professional and personal life that is ordinary, so that a day eventually arrives when all that's left is the extraordinary.

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