Patient-Centered Medicine: Lauren's Journey with Conradi-Hunermann Syndrome

What if your greatest challenges could fuel your passion and shape your life's ambitions? Meet Lauren, a clinical assistant at Boston Children's Hospital, whose journey with Conradi-Hunermann syndrome and nearly 30 orthopedic surgeries has not only defined her path but also her dream of becoming a pediatric orthopedic surgeon. Through her eyes, we gain a profound understanding of the human side of medicine, where patient-centered care and advocacy go hand-in-hand. Lauren candidly shares how her medical journey has inspired her to educate others about rare diseases and offer the same compassionate care she received.

Ever felt dismissed by a healthcare professional? You're not alone. We recount a personal experience where lack of empathy from a medical specialist led to a crisis of confidence, underscoring the emotional impact of not feeling heard in healthcare. This is a stark reminder of the need for healthcare providers to truly listen and validate their patients' experiences. Compassion and understanding are crucial, as they can make a world of difference in patient trust and partnership.

In a world where patients are more informed than ever, embracing shared decision-making in healthcare is a must. We explore how empowering patients as active participants leads to better outcomes, with strategies like encouraging second opinions and creating accessible resources. Highlighting organizations like Miles for Hips and Beautifully Made Community, we showcase the support available for those with specific medical conditions. It's about fostering resilience, appreciating health, and emphasizing a growth mindset—prioritizing well-being over rigid timelines. Tune in, and let's transform the healthcare experience together.

https://www.instagram.com/lauren.schoeller/profilecard/?igsh=MWJrNWxsZXdlMnNkNQ==

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Living With Conradi-Hunerman Syndrome
• 17:42 Patient Trust and Partnership in Healthcare
• 25:56 Empowering Patients Through Shared Decision-Making
• 35:39 Embracing Resilience Through Health Challenges

Transcript

Jen: 0:08

Today I have a chat with an inspiring guest whose journey is nothing short of remarkable.

Jen: 0:15

We have Lauren here and she works as a clinical assistant at Boston Children's Hospital and is currently applying to medical school with the goal of becoming a pediatric orthopedic surgeon. Lauren's motivation comes from a deeply personal place, as she was born with a rare form of dwarfism, which has required her to undergo nearly 30 orthopedic surgeries. Despite the many challenges she has faced, lauren has become an advocate for patient-centered care, education and advocacy, both as a patient and in her professional work. She's a passionate researcher and serves as an executive board member for Miles for Hips, while also directing the Beautifully Made community helping others navigate life with chronic conditions, and I can't wait for you to hear her story and learn from her incredible experiences. Hi, lauren, how are you today? Hi?

Lauren: 1:11

Jen, thank you so much for the opportunity to be on here and for everything that you do for those with chronic conditions and amplifying the patient perspective, so I'm really excited about this conversation.

Jen: 1:22

Thank you so much. It's my honor to have you here. To start, can you tell us a little more about your journey growing up with? I'm going to have you tell us the name of it.

Lauren: 1:33

Absolutely no worries. It's called Conradi-Hunerman syndrome and it's a form of dwarfism that mainly impacts the musculoskeletal system. So most of my bones and joints were not formed properly and there are other multisystemic effects of it, but mainly it has impacted me and my musculoskeletal system. So I mean growing up with this condition. It is a rare disease and I think that made it unique, because most doctors don't know what the condition is or they've never heard of it, and so I think that kind of placed me even from a young age. It placed me and my family in the position of being an educator to some extent. We would go to appointments and the doctors would often say we don't know what this condition is, what do you know about it, or things like that. And so it's been kind of an interesting dynamic to be the one sitting on the exam table and having to share about this condition to my doctors. But it also has been really refreshing because for the most part my doctors have been really receptive to wanting to understand and learn about it with me and they've recognized that obviously as a patient I don't know everything about it, but I know a lot because I've lived with it and there's not a lot of research on the condition because it's a rare disease.

Lauren: 2:57

I think growing up with it was like I don't know any other way of living aside from living with it. It was certainly hard at times because my parents, when I was born, they were told we don't really know what her prognosis will be like, we don't know if she'll be able to walk, we don't know what her quality of life will look like, and so growing up we faced a lot of unknowns and again it was difficult because doctors didn't know what the condition was. There's not a lot of information or educational resources out there about the condition, so we were very much kind of living in the moment and how the condition was unfolding, the ways that it was going to impact me, and because of that I think I always felt different. As a kid I knew that I was different because I was going through these things that none of my other classmates went through. But again I think it made me advocate for myself more and again, placed me in the position of educating others on what it's like to live with a rare disease.

Jen: 4:03

Wow, how did it shape your perspective on healthcare as a whole?

Lauren: 4:06

Yeah, I mean it certainly shaped my perspective in a very profound way. I always say that I lucked out with the medical teams that I have because they have always been there for me, both helping to navigate all of the care that I've had but also being a support system. They really showed me the human side to medicine, that a doctor can help you to navigate all of the details of your care, but they can also be a really great support in asking how you are handling your care emotionally and mentally, because that's a big part of it. I really felt lucky in that regard. Just, I think it showed me I think the current medical model it's not super conducive to patient centered care, but there are a lot of doctors out there who are. They are trying to work around that.

Lauren: 5:04

I really felt that with my doctors I feel like the perspective that I have is I went through a lot of very difficult things medically, very real medical challenges, but I always had that human like sitting in front of me who was there to help me navigate it and that was really powerful to me to say that you know I am very interested in the science of my condition and science in general. You can do that and you can still care about patients like on a personal level and show that care. So I don't know. I feel like, growing up with my condition and everything that I went through, I couldn't imagine pursuing any other career aside from health care because it just impacted me from such a personal level. I know what it's like to be that kid who is going into surgery and who's scared on the operating room table and I want to be able to be there to support other kids or other patients who are in that same situation.

Jen: 6:10

So you've undergone nearly 30 orthopedic surgeries. How have those experiences influenced your decision to pursue a career in the pediatric orthopedic surgery?

Lauren: 6:21

I've been saying since I was in middle school that I want to be a pediatric orthopedic surgeon. I think it just comes down to the fact that orthopedics is a field that gave me a quality of life back. My orthopedic surgeons have fought so hard to give me a quality of life, to allow me to be as independent and navigate the world and be able to do activities that I am passionate about doing. When I was a kid, I loved to play softball and I played softball every season up until I think eighth grade was my last season playing softball. But my surgeon, he, would work so hard to allow my surgeries to be scheduled around softball season so I would play a softball season, have surgery so that I could be recovered enough to play the next year.

Lauren: 7:13

I think orthopedics just has this. It makes such a tangible difference in these patients' lives and I lived that and I have seen that on the clinical side as well with internships that I've done in orthopedic clinics, and even you also see a lot of patients with chronic pain related to orthopedic conditions and I think that it's a privilege to be able to support patients who have chronic pain and to be able to say I'm here to support you through it, and we are in this together. I think that's something that I experienced as well as a patient. So I just think, all of my experiences combined, I couldn't imagine doing anything different than orthopedics. It's such a special field and you're working with some of the best group of patients.

Jen: 8:02

I think that's great, and I think what I love most about things like that is we need more people like you, wanting to jump into different areas in the medical system because of your passion and your love for helping others and your excitement about learning more as well and I don't know if I was going anywhere else with that thought, but your work as a clinical assistant at Boston Children's Hospital. So how has your experience as both a patient and a healthcare professional impacted how you approach patient care?

Lauren: 8:31

I think the way that I approach patient care is fully or you know it's based a lot in how I was treated as a patient and the ways that you know, both the good and the bad. I have learned from a lot of my medical team the great ways to treat patients and just the importance of a strong doctor-patient relationship, and I've learned from other doctors that I've had the ways that, how not to treat a patient and how bad it can feel to not listen to patients and to disregard patients' experiences. And so I think when I think about the way that I care for patients, it's always from a stance of listening to them and wanting to understand them. In a day I could see patients who working at a children's hospital it's a lot of kids, but also young adults and I can see patients who are in their teens and they come in for the first time and they've never had a medical procedure or a test and they're very anxious about it. Or I could go and see a kiddo who's four or five years old and they have been in and out of hospitals all their life and it's like they kind of know the drill. You know they go there and they know what to expect and it's that kind of actually when I first started working here was one of the surprising things because to me I've been in and out of hospital since I was a kid and so I kind of go and I know what I'm going in for.

Lauren: 10:11

I am very educated as a patient. I think I always like to go in informed and want to know what to expect and to ask questions. But I realized that there are a lot of people who come in for appointments and they don't really know what they're going in for, or they don't. It's more difficult for them to know what kinds of questions to ask, to be informed, and also patients who go in for, say, an ultrasound, and they're very anxious about that, which is completely valid. But I think, coming from I guess, I remember in high school I was very like. I thought about this recently.

Lauren: 10:48

I remember in high school going in for a CAT scan and I was so anxious about it. I was laying on the scanner almost in tears because of how scared I was. And then I realized from then to now I've had so many surgeries, so many tests and procedures that a CAT scan is not going to provoke anxiety for me, but when it did. It was a very real thing and extremely valid to be scared of.

Lauren: 11:16

And so I think when I'm going to do an ultrasound on a patient and they're anxious about it, I have to take a step back and say you know, I was once that patient who was nervous about this type of imaging exam and you know how to navigate that and you know, when I see those patients, I take that extra time and I explain as much as they want to hear, I ask what questions they have about it, and it's a very different approach than to a patient who has come in and had it done multiple times and they kind of know the drill and they don't need to hear or they don't want to hear as much about it. So I think it's a very tailored approach to each patient and that's what patient-centered care is it's meeting the patient where they're at and, you know, tailoring the appointment around that, because each patient is going to have unique needs.

Jen: 13:09

That's a really good point to bring up and I agree with you. When you are new to getting any kind of procedure done, even if it's a scan or a test of some sort, it's actually terrifying and I think you know going through it like you have. That makes you a really good care team for the people coming in to see you, because you understand and you make them feel probably calm and at ease, which is exactly what people need. So my next question for you is let's see here about advocacy. Advocacy and education are clearly important to you. What advice would you give to patients who may feel overwhelmed or unheard when navigating their own healthcare journeys?

Lauren: 13:51

I think it is so common and, with the way that the system is set up, it can be a very normal thing to be overwhelmed by the health care system going to be there to help me make all the calls to the insurance companies and making sure that this test and this procedure was approved, and navigating all of that. And so, you know, I felt this deeply when I moved to college and all of a sudden I'm the one managing all of my health care and it can be very confusing and both navigating like the insurance side of it and also meeting new providers and dealing with different you know perspectives from providers, dealing with different ways that they approach patient care. I think you know the first time that I had a negative experience with a provider was it can leave you feeling so discouraged and disappointed and really not wanting to continue trying to get care for that problem that you're going like in that you went in to get care for because, um, I I think opening up to a doctor about a health concern is a very sensitive thing and it takes a lot to be able to share that with a new provider and if that provider listens and they're willing to walk with you through that to get the treatment that you need, that's excellent, but unfortunately that's not the case all the time, and when they dismiss and they invalidate the symptoms that you come in for at least in my experience. When that happened to me, I kind of hit a wall and I was like, wow, I guess maybe I is this in my head Am I wasting, you know, resources in a provider's office to keep going and trying to figure this out? And so I think, unfortunately, it's too common for patients to feel not heard in a clinic appointment, and the ways that I have navigated that are number one.

Lauren: 16:14

Having a conversation with a provider, I think if they are treating you in a way that doesn't align with your values as a patient, I think, first having a conversation and saying you know, I don't think we're seeing eye to eye on this, I'm really not comfortable with the way that this appointment is going.

Lauren: 16:32

You know, sharing the things that are important to you as a patient, sharing the things that are important to you and how you, sharing the things that are important to you and how you're cared for. I think that's always a good starting point, and then, if the provider is still not really hearing you out, I always advocate for get a second opinion, get a third opinion, 10th opinion, until you feel comfortable with the medical team that you have. Because once you build that team that will listen to you and that team that will advocate for you, and that team that will advocate for you that makes such a difference in your care, and suddenly, when you feel listened to, you, have hope about what you're going through and it feels more manageable, rather than continuing with a doctor who is not listening and is perhaps invalidating your symptoms. You can feel like you're at a roadblock and so never feel bad about going to get another opinion and building that team that you feel best with.

Jen: 17:32

Do you have an example of an experience where you've gone in to see a provider and they've made you feel like you shouldn't be there?

Lauren: 17:40

Yes, absolutely. This happened last year actually. I went to the emergency room because my legs had started to tremor and I was tripping over my feet and I was getting nerve pain from my back going down my legs, and so I went to the emergency room and they ended up admitting me for four days and at the end of those four days I felt like not much was really accomplished and I was just kind of laying in bed waiting around. They couldn't really identify what was going on. They ended up discharging me and saying follow up outpatient with this specialist. The specialist will know exactly how to help you.

Lauren: 18:21

In that time I had continued like the pain was getting worse, the symptoms were becoming more debilitating to the point where I couldn't leave my. If I left my house, say, to go to work or you know, just to do like grocery shopping or anything like that, I would come back home and just be completely, you know, in bed for the rest of the day, or it was so debilitating and I was missing work because of it, and I ended up. I was waiting a month to see this doctor, the specialist that I was told would know exactly what to do to help me. All while my symptoms were progressing pretty significantly. And so, finally, the month came and I went to go see this doctor and she walked into the room and she said you're a mystery, I don't know, you're a mystery, I've never heard of your genetic condition. And I was like, oh, that's okay, like most people haven't heard of my genetic condition, but I'm happy to tell you about it and I'm happy to share about it. And I started saying you know, as a form of dwarfism, this is how it has impacted me.

Lauren: 19:28

And like two sentences in, she cut me off and she said, oh, I don't need to hear about that. And I was like, I was like wow, that's really strange. And so I just kind of I sat there, I was like, okay, I kind of let her, I was like let me just hear her out. So she has to say. And so she started saying I understand, you're here for changes in your gate. And I told her how it was impacting my day to day function and that it was.

Lauren: 19:55

You know, when I laid down at night, my legs were spasming and tremoring so much I wasn't sleeping, you know, couldn't leave my house or otherwise I would be, you know, paying for it by the end of the night with worsening symptoms and it was really impacting me day to day. She said okay, let me hear. Sorry, let me watch you walk. So I got off of the exam table and I tried to walk from the other end of the clinic room and back and my legs were just contorting in and shaking and it was so hard for me to walk. She goes I don't see a tremor, you don't have a tremor in your legs and I was like, okay. I was like, okay, you know what is this that's causing my legs to shake so much and that I couldn't put one foot in front of the other. She said you just need more supportive shoes and physical therapy.

Lauren: 20:45

I said I was at that point I'd really wanted to get a MRI of my lower back because within that month from when I was discharged from the hospital to when this appointment happened, I was doing my own research or looking online to try to understand what was happening. It seemed like a reasonable next step was to get an MRI and I had mentioned some case studies of studies of connection between scoliosis and tethered spinal cords having a rare syndrome that you know. Perhaps there's more that we need to look into because not many people know about this condition and it's just like we're kind of learning as we go. Right, I mentioned all this and she still said just try the physical therapy, get more supportive shoes. And I said when do you want to follow up? She said you don't have to follow up. She said you don't have to follow up with me.

Lauren: 21:41

I left that appointment Like I was on the verge of tears.

Lauren: 21:44

The whole time she was talking to me, which ultimately it was like five minutes that I really saw her. She very much didn't. She didn't take much time to come to her conclusions and I left that appointment feeling discouraged and for a short time I did convince myself that maybe this is just what my life is going to look like and I need to try to figure out how to live with these symptoms. And I was really like reevaluating At that time. I was hoping to apply to medical school that year and I was like I don't even know if I'm going to be walking, you know, in a few months from now. I ended up delaying my applications. It like that five minute interaction was so heavy and it made me think about you know what my? It made me think that, like my entire life is going to look like this. It didn't have to lead me to think about that, if this doctor had listened to me and taken the time to really understand my condition and to understand why I was there.

Jen: 22:50

She did not need to make you feel that way. I think my expression to you says everything that I was thinking. No one should ever be treated like that. No one should walk away feeling the way that you did or feeling like they need to reevaluate their entire everything. To me, you seem like a quite intelligent I don't know what the next word I was going to say sorry, but you seem like a very well-capable, educated, intelligent person that is going to do your research and you're doing the very best. And I think just a thought here that you probably already know about getting physical therapy and getting good shoes. To me, my impression is she just didn't want to deal with you. You are that mystery patient. She can't help.

Lauren: 23:33

I agree and unfortunately, I think because of my condition I'm a complex patient and I think unfortunately sometimes that can be intimidating to maybe some medical professionals, and I think it can be easy to. She probably looked at my chart and saw the just insane surgical and medical history that I had. I think there are some people who make assumptions about patients who have long medical histories and perhaps she was one of those providers who did that and just felt like maybe I was too complex and she didn't want it, that you know that she didn't. Well, I guess she admitted that she didn't know about my genetic condition, but maybe she, you know, felt intimidated by that or something I don't know.

Lauren: 24:22

I see this a lot with other patients that I've connected with with complex or chronic conditions. Some doctors, I think they just make this certain assumption about you and ultimately that means that that doctor is not for you and you need to find another doctor who is willing to understand your history and is willing to support you in all the ways, that you need to find another doctor who is willing to understand your history and is willing to support you in all the ways that you need as a patient with a complex condition, but some doctors are not willing to do that, and I think that was the case with that other one.

Jen: 24:50

As someone who's been through so much, you understand the significance of the patient provider partnership and you brought that up a little bit. What are some key elements that you believe contribute to a strong relationship between patients and their doctors?

Lauren: 25:04

First and the biggest thing is trust, and that goes both ways A doctor trusting their patient and a patient trusting their doctor, because, at the end of the day, patients are the ultimate stakeholders in their care and we're the ones who are experiencing the treatment plan, we're the ones who are experiencing our condition. So it's important to have that trust, both from the doctor to the patient and the patient to the doctor. And when it comes to the patient provider partnership, I think another thing is engaging patients in their care. Many patients want to be actively involved in their care and it can be difficult to know how to do that, and it can sometimes be difficult to find providers who truly engage in patient-centered care. There's a lot of talk about patient-centered care now. I think there is starting to be a shift behind the medical model, where they are trying to put patients more at the forefront. But you know, how can you truly know what patient-centered care is without listening to the patient about what's important to them? So that's something that is important to me is like true patient centered care practices, and I think you can do that by creating an environment of care that conveys a sense of belonging and including patients as experts in their care, even though patients are not. You know, I am not an expert in the science of my condition, but I'm certainly an expert in the ways that my condition has impacted me right, and so I think acknowledging that your patients are experts in what they're going through is a really important step, and you know helping patients to identify their information needs. When you're explaining a treatment to a patient, if there's an area that you feel like they don't understand fully or that they misunderstand, take the time to address that and show them reputable resources or support groups or ways that they can build upon their knowledge of their condition or ways that they can feel more informed about their treatment. I'm actually there's a great TED talk and a book by Dave wait a minute, it's actually, I was just reading it by Dave DeBronkart. It's called Let Patients Help, and it's like I think any patient and any medical team provider should read it, because it goes over really what is important to the patient and how you can really include them in their care. So I would recommend that and it touches upon some of these things that I've said, but ultimately encouraging patients to follow up if they have other questions and saying reach out to my team if you need anything, even if you're at a pre-op appointment and the next step is having surgery. If a patient is unsure about anything, encouraging them to make another appointment before their surgery or reach out in any way, have a telephone conversation with them to make sure that they all of their questions are answered.

Lauren: 28:24

And encouraging patients to seek second opinions. I think some doctors I've heard some doctors they're not open to encouraging patients to get second opinions because they feel like they're challenging you know that doctor's expertise. But I think with any problem, it is valuable to get perspectives from multiple people. Even if you've you know if you talk to one doctor and you feel comfortable with what they say. If you're you know if they are recommending surgery, I think it's valuable to go to another doctor and say you're you know if they are recommending surgery. I think it's valuable to go to another doctor and say you know this is, this is a surgery that this doctor is recommending. Would you do the same approach? Is this what you would also recommend? Are there any other options that you could think of?

Lauren: 29:12

Just because everyone has a unique perspective and to be the most informed, I think talking to multiple people like that you know you gain information by talking to other people and by learning what their perspectives are, so you know it should never be looked down upon to get a second opinion.

Lauren: 29:33

I also think sometimes doctors can label patients as being, like you know, seeking out a specific thing if they see that you've been to multiple doctors, and I think that really dismisses the value of like informed care, because patients are only going to see multiple doctors to learn more so that they can feel most comfortable in the care that they're receiving. I think those are the pillars of a good patient-provider partnership, allowing patients to really be involved in shared decision-making. If there are areas that patients can, if it's clinically appropriate, where a patient can make this choice over this choice, they should be given that information and they should be allowed to make that choice. And just giving patients a voice during their appointment to say you're a valued member of our team. I think it's always that the patient and the provider should be a team and on a level field. Those are the things that are important to me in the patient-doctor relationship.

Jen: 30:45

You're involved with Miles for Hips and the Beautifully Made community. Could you share more about the missions of these organizations and how you contribute to their efforts?

Lauren: 30:55

Absolutely. Miles for Hips is a patient-driven collaboration with the International Hip Dysplasia Institute. We aim to provide information and resources for people impacted by hip dysplasia by generating awareness for hip dysplasia, building community and collaboration between patients, the international hip dysplasia staff, researchers, surgeons and other medical providers to encourage and support awareness and advocacy for hip dysplasia With them. I am on the Education and Information Board. My goal is always to take research articles or important information, whether it's about a certain treatment or it's about like a rehab protocol and I take those and kind of turn them into more like patient friendly, digestible resources, because I think there's a lot of information out there that it's all written in high level scientific terms and it's not. You know, it can lead to more confusion for patients to read these resources that are not really made for them. They're made for medical providers to make decisions based off of, but I think they are important resources for patients as well. We have a medical advisor that we work with and he reviews anything that we kind of make into a more patient-friendly, digestible resource. I think that just helps, because there is a lot of misinformation as well about hip dysplasia and really any condition. It's easy to be confused by all the terms and all of the different treatment options. And so I think creating Miles for Hips and these different resources that patients can go to, that it's easy to read, it's digestible for patients, I think it kind of bridges that gap between you know, an informed patient makes better decisions. So it bridges that gap so that there's not as much misunderstanding and so that patients can go to appointments and be more informed. So that's something that I'm really passionate about and it's been great to work with Miles for Hips on that.

Lauren: 33:05

And then Beautifully Made Community is a group that provides support, resources, education and community to people impacted by limb differences and limb loss, and we collaborate with hospital networks through events and providing educational tools and related to different types of limb difference and limb loss. As of right now, we have one major event every year with Boston Children's Hospital where we get together with patients and families and the upper extremity orthopedic team there and providing a sense of community because and resources as well educational resources because, you know, I think when you're given a diagnosis of a limb difference or you sustain a limb loss, it can be very easy to feel lost. It's like you know what is your life going to look like after this diagnosis, having that community there to say you can still live a meaningful and fulfilling life despite these diagnoses. That's something that community there to say you can still live a meaningful and fulfilling life despite these diagnoses. That's something that we aim to do is to just empower our community who live with those diagnoses.

Jen: 34:08

You've published and presented at orthopedic conferences? What kind of research are you passionate about and how do you hope it will impact the future of orthopedic surgery?

Lauren: 34:19

Yeah, the research that I've done has been related to total hip and total knee replacement. I've also done I've published a paper on wound complications after spine surgery. I think, ultimately, the research that I'm passionate about is any kind of research that will improve patient outcomes and any research that will, you know, further patient care. Even though my research was related to total hip and total knee replacements, that's certainly something that I'm passionate about.

Lauren: 34:49

I love really all of orthopedics, but in the future I could see myself focusing more on pediatric orthopedics and you know, I think without research like that, you know, it's difficult to really advance the field forward without that research. So, something that I am very passionate about, I've also lived through experiencing the ways that research has changed the field of orthopedics. When I first had my leg lengthened, it was with an external fixator and then, when I had my leg lengthened the last time, it was with an internal fixator, and those are two very different experiences. And the use of using an internal rod to lengthen a limb versus an external fixator is all thanks to research and ultimately, things like that improve the patient experience and improves patient outcomes. It reduces complications. So that's what I'm most passionate about in research.

Jen: 35:40

For others who live with chronic pain and use mobility devices. What has helped you maintain your physical and mental resilience over the years?

Lauren: 35:48

I think physical and mental resilience are things that are not built or developed overnight and I think they can look different in different seasons of life. So when I look at how I say my coping strategies for my chronic pain, that looked a lot different in the last year than it did, you know, the 25 years. I think always reassessing kind of your coping strategies has always been helpful for me and your support system. It's okay to not feel resilient and strong and brave all the time. I always say that resilience does not equal toxic positivity and about a situation and you know it's okay if you're going through a more difficult season of life to not feel resilient right, and it's okay to sit back and say I'm going through something really hard right now and to acknowledge that and define your support system and your coping strategies to manage that. And then you know at the end of that difficult season, being able to shift your mindset.

Lauren: 36:56

And yeah, I don't know like when I think of the coping strategies that I had for the last 25 years did not. I never realized Like I thought I had such a strong like toolbox to be able to get through any chronic pain or thing that came my way. And then in February, when my pain was at the highest it has ever been and it was from February to this past September that I was in that constant severe pain and it really tested my coping skills and, I guess, my resilience. It made me realize that those skills and those strategies are ever changing, kind of taking on a growth mindset to say that you know, it's okay that these past strategies that I have are not working, but how can I take those strategies and develop them into something that can work for me right now?

Lauren: 37:53

So I think that, like physical and mental resilience, it's it's always something that you know it's okay if that changes. It's always something like to work on. And I think it's okay if you don't feel resilient all the time. That's kind of my big thing is like you don't have to feel strong all the time. When we're doing hard things. You have to acknowledge that it's hard, because otherwise things you have to acknowledge that it's hard because otherwise it's just you burn out and you can't be positive about something all the time. Acknowledge things when they're hard and celebrate them when you can.

Jen: 38:28

This has been such a fabulous interview and I am so grateful for you to come on the show. My last two questions for you what keeps you motivated and focused on your goals, especially when faced with personal challenges? And, to follow that up, what motivates me to keep going?

Lauren: 39:03

Because my life and my outlook really was so uncertain at times that it really motivates me to keep going. And it's a privilege to be able to be where I'm at right now, because we didn't know that this is what it could look like. I'm grateful for that every day and that's kind of that's what keeps me motivated. I think about the kid who was scared going into, facing all of the medical things that I did as a kid and I think in some sense I had to do a lot of that alone because there wasn't the social media presence that there is now to be able to find support groups. And I just think about the need for being there for other people when they need it most and being able to support people along those hard journeys. So that's what keeps me going. And then I think any advice that I have for other people who are going through a lot with their health it's always like focus on your health and not on like a certain avenue, a certain pathway. Focus on your health right now and you don't need to stick to the certain timeline of meeting your career goals in a certain amount of time.

Lauren: 40:26

I think that's something that I fell into a few years ago, when I was set on applying to medical school right after college and then I wasn't able to do that because of my health.

Lauren: 40:44

There was a period of time when I felt really bad about myself because of that and I was like wow, like I was just really disappointed with myself and I kept feeling like I needed to be applying to medical school in this certain time and I'm behind if I'm not in this certain time and I'm behind if I'm not.

Lauren: 41:03

But ultimately I'm so glad and I'm proud of myself for focusing on my health when I needed to, because then you know that I mean, your health is what's most important. Like when it comes down to it, if you don't have your health, you're not going to be able to do. You know these things that you want to do sometimes. So you know, I think, focusing on that, and then when I was able to take those next steps to get to apply to medical school, it's okay if it takes longer than everyone else, it's okay if you have to do it in smaller steps. I think ultimately that has allowed me to appreciate the journey a little bit more. And again, if you don't have, don't realize how important your health is until you don't have it, and so I am grateful that I always took the time to take care of myself over any kind of timeline or any like expectations that other people had for me to you know, for me to achieve what I wanted to.

Jen: 41:55

Thank you so much for sharing your inspiring story with us today. It's been a pleasure to have you on, Lauren. It's been incredible hearing about your journey. I know our listeners will be just as inspired by your dedication and passion. I look forward to having you back on because I think you have a lot to share that people want to hear.

Lauren: 42:13

I was going to say. Thank you so much. It was really a pleasure to be able to chat with you today about this.

Jen: 42:19

Thank you, my Spoonie Sisters. Until next time, don't forget.