Title:
The Zebra in the Room: What Rare Disease Patients Want the World to Know

Subtitle:
After 35 surgeries and a lifetime in hospitals, Lynsey Chediak is changing healthcare policy from the inside.

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.

Let’s go.

Welcome back to Pushing Forward with Alycia. This episode is all about having people come into your life that when you meet them, just literally in a moment, at an event, that you just feel instantly connected.

I met Lynsey Chediak through a mutual friend, Becky Curran, at an event that she was speaking at. I knew in those moments that I was gonna somehow get her to be a friend, and also possibly come on the podcast. And she’s here today. She has an amazing story. She’s been a lifelong patient, literally. She’s a disabled woman. She’s an advocate. She’s a rare disease advocate, so important. Whose work has translated into government, global health policy, biotech. And all of this has been deeply personal to her. She’s grown up navigating hospitals, and surgeries, and systems that literally were not built with patients in mind.

Instead of letting it harden her, she’s let it sharpen her. And her advocacy is powerful. She founded her first social impact company at 19. She’s been advocating for rare disease communities and disability voices in spaces like World Economic Forum. She is rooted in empathy, courage, beauty, and love. And she’s got a brilliant mind, too, to add to all of it. This conversation today I know is gonna be super amazing, and motivating, and educational for our community. Lynsey, I’m so happy to see you. Thank you for coming on the show. Welcome.

Lynsey Chediak: Thank you for having me and thank you for all the kind words. It’s such a pleasure to be here. And like you said, I feel like when we met, we just instantly clicked. And it’s been such a pleasure to get to know you, and also to learn about this great podcast that you are hosting.

Alycia Anderson: Thank you. Yeah, your story is binge worthy. I was telling you before we started, I watched as many videos that I could find about you, over and over. ‘Cause your story really is quite interesting and has so many layers. I would love to start with that. Start with you, maybe not the work quite yet, not the titles. You’ve lived inside of healthcare systems and navigating your disability from a really young age.

Can you share a little bit about your journey? Whatever you’re comfortable with. What it was like growing up as a patient, and I guess just those early experiences of navigating the world with your disability.

Lynsey Chediak: I feel like one of the core parts of my identity is certainly the fact that I have an unaffected twin sister. So for me, it was always so fascinating. I entered this world in a very abrupt way, as many folks who have a rare disease or skeletal conditions and disabilities.

I was born at 29 weeks. I was very eager to arrive. But I had a healthy twin sister who didn’t have the new gene mutation that I had that caused a skeletal condition. It’s called arthrogryposis. So from the start, I’ve always known, I think, in an interesting and in a productive way that ultimately I’m differently abled than my fraternal twin sister.

I like to say, I looked really different when I arrived. I had a bent neck, bent arms, bent legs, club feet. But everything else, outside of my skeletal system, was fine. And I like to always remind doctors about that, right? ‘Cause they’ll go on and on about all the problems you have without mentioning the pros, as well. But it was really interesting for me because, I think, just to understand that you don’t have the same physical capabilities as all the people around you. I have able-bodied parents, able-bodied sister. Was really tough. I can tell you, many of my friends also grew up with health conditions. I was in the NICU, broke outta the NICU a couple months in, luckily.

I didn’t crawl, I didn’t walk. I don’t have those same milestones. I think going to school, for me, actually was the first time that I knew that I was different. I remember being in preschool and not being able to use the drinking fountain, not being able to get around, not being able to run over to the playground, ’cause I couldn’t really walk on my own. And those were all really formative moments that I think helped me to realize I’m gonna need some assistance, I’m gonna need some great doctors. And I’ve always had my voice and I’ve always been very vocal about pointing out the things I want to do. “Hey, Mom, I wanna be able to reach up to the kitchen counter to get the box of cereal.”

That was one of the core things I couldn’t do as a kid. And for me, a lot of that has been rooted in seeking answers medically and trying to understand, “Why don’t my joints straighten? Why can’t I straighten my legs? Why can’t I stand up straight? What is going on here?” And also the fact that there just weren’t answers to any of my questions.

Alycia Anderson: There’s so much right there to unpack, ’cause you just said a few things that I had no idea about you. Number one, and I don’t think we talked about this. I didn’t know you were a twin. Do you know that I’m a twin?

Lynsey Chediak: No, I didn’t know that. Oh my gosh. Wow.

Alycia Anderson: Yeah. I’m a twin to an unaffected twin also.

Lynsey Chediak: That’s wild. Okay, well, then you get it.

Alycia Anderson: And I do get it. The wildest thing is, multiple guests of this show have a twin.

It’s the most incredible thing. I don’t know if there’s a thing there with disability. Anyway, that’s a whole nother, I think, research project for you. But I have an unaffected twin, too. And everything that you were just saying, that really resonated with me. I didn’t realize I was any different than my twin, honestly, until I got to school.

You tell this story about one day looking at yourself in the mirror and going, “Oh.” And I had that moment, too, where you catch yourself and you’re like, ” Oh wait, actually that looks different than everybody else.” Those moments, that one in particular, ’cause I can really relate to it.

How does that shape your sense of identity when you’re young and you have a twin that is navigating right aside from you? How does that shape your identity, at that age?

Lynsey Chediak: I like to think we’ve come a long way now. To date myself, this is the early nineties when I had this revelation, but no one told me. I think it’s so interesting. I’ve always been a confident person. And I think sometimes when you’re confident, people think that, “Oh, you don’t have insecurities, or you don’t realize what’s going on.” Or you know what’s going on, in this instance. But it was really shocking because I like to always say, “You only know the body you’re born in.” I only know this body and what it’s capable of, and also what it’s not capable of. But it’s never felt anything different than what its felt. I remember one day I was coming home from preschool and my parents had a full-length mirror in their bedroom.

And I thought when I was looking around at school, I looked just like everybody else. I thought, “Oh, I must appear.” Because everybody else around you physically looks the same. And there was nobody else with a disability in my preschool class. Being around my sister and my friends, nobody that looked like me, and I didn’t know that.

I just remember it was really startling to see, in my case, I was hunched over at about a 90 degree angle. I refuse mobility device help, not because I didn’t need it, but just because I like to try to do things on my own and then take help later on when I really needed it for distance and that sort of thing.

I just remember being really confused and thinking to myself, “Is this really what I look like?” Because I didn’t feel bent over. I didn’t feel like my feet were any different than anybody else’s. But when you look in a mirror, you realize, “Oh wow, it’s not the same.” But I’ve never felt anything different. So it’s not like it’s bad, either. I think that’s the really cognitively complicated narrative.

Alycia Anderson: I think that’s a thing to recognize. I know for me, I feel exactly the same way. And I honestly would sometimes look at people with spinal cord injury, or disabilities that were on-set later in life and go, “Wow. If I was only them, at least my body would look typically more normal, but I would still be me.” That realization. “This is my body.” But you have to go through this almost emotional switch. I think that is the harder part of growing up with a congenital disability that sometimes gets a little bit dismissed. “Oh, you grew up like that, it’s fine. That’s all you know.” And that’s true, but there’s also this emotional piece that you have to, at least I did, get caught up to.

Lynsey Chediak: A hundred percent. I think what’s really tough as well is, in my friend group growing up, they always assume, “Oh, didn’t a doctor tell you this was gonna happen? Did someone tell you that you couldn’t walk more than a mile without breaking your foot?”

No, no one told me this. No doctor, either, sat me down and was like, “Hey, you really should be careful about X, Y, and Z.” Even now it’s coming up. I had a dislocated elbow, and I had no idea. All the doctors are like, “Oh my gosh. How did you not know this?”

To add another layer to all this, you grow up in chronic pain. I’m used to my body always feeling a certain way, used to pain. That’s another layer where it’s really tough because, again, you only ever know how you feel. And so it makes the usual, quote unquote, normal signals that other people have for their own abilities very different than my own body’s signals.

Alycia Anderson: Yeah. Interesting. I love it. I love it that we have this stuff in common. Growing up, you mentioned the doctors. I know doctors literally from around the world flew in to be a participant in your care and tried to figure out some of the puzzle pieces. Will you tell the femur story? Let’s translate that to being able to share these stories more prevalently. The world is more aware of other resources and treatments that might actually progress.

Lynsey Chediak: In my case, it was a very bumpy treatment road. I was told from the start, “It’s not with bones.” It’s really hard because there’s not a lot of bone drugs. You have to do surgeries and they’re painful. My biggest thorn in my side, mobility-wise, was always that my left leg was very bent, and prevented me from any sort of staying up straight, or walking, or anything that I saw people doing.

Even at the age of five or six, I remember telling my doctors, “Okay, what are we doing? What are we doing? What can we do to potentially make this just a little bit straighter, maybe not quite as bent as it is now.” I volunteered to have an exploratory surgery when I was 15 years old. Once my growth plates were closed, it’s a whole different game with my bone disease.

So I let them go in and essentially cut out the bent part of my femur, and then I let it grow back in on bedrest. It was miraculous. It worked. I had to wait 15 years, but I finally got a straight left leg. The fact that’s not standard of care for arthrogryposis, that there’s not a published journal article on that exact procedure and how well it worked for me, is what I find to be incredibly frustrating and also what’s led a lot to my advocacy journey. There are so many trial-and-error surgeries you can have to be in less pain or, just for your own quality of life, your own mobility that you’re able to have with arthrogryposis.

But there’s not anything that, as a patient at least, that I can find. It’s all just locked up somewhere in a medical record. Even though that surgery was transformational, it’s sort of a one-off. I’ve been, really with my career and beyond, on a mission to try to help change.

Alycia Anderson: Why is that a one-off? What’s the process there?

Lynsey Chediak: One thing that’s really improved is, of course, the Affordable Care Act decided that if you have a pre-existing condition, you can have coverage for surgeries, for treatment, for your quality of life. To contextualize, this was back in the day where my parents had a solid health insurance plan as they needed to, given the level of care that I needed as a child. Back in that time, this was in 2004, there was no coverage, so I had to go to Shriner’s Children’s Hospital in Sacramento. They provide their care free of charge. They don’t go to your insurance company. It’s all donor-funded. But that alone is a crazy roadblock that you can’t get treatment to improve your quality of life, if you want it.

Now, of course, that’s changed. Now you can. So that’s one improvement. But I think what it comes down to is, just with skeletal conditions, every body is so different. And based on my own bone disease, in my case, a gene that is overactive, that causes excess fibers in all my joints. They become just fused in a very different way, perhaps, than some of my friends with the same condition. But it’s the same root cause, right? It’s the same gene. I think the hesitation is just doctors like to claim that every body is different, but also it’s not. And I think the same interventions could work, albeit my preference in the long run is to actually maybe have a treatment that can target the genes that you don’t have to have invasive, painful surgeries, because I don’t think that’s sustainable either. I’ve always thought of my own medical journey as, “I’m only doing this surgery so that you can publish it and document it, so that somebody else can hopefully not go through the same trials, and tribulations, and pain for treatment.”

Alycia Anderson: Wow. Wow. That’s a huge statement right there, and shows what an amazing person you are. When I was back in the nineties, too, had a bunch of reconstructive surgery on my bladder and certain things. Now it’s like a typical surgery for people who have cancer in their bladder, whatever. But they completely remove it and they reconstruct it out of your intestine.

They do all this stuff. Major reconstruction. I just had a bladder that was incontinent and they were trying to save my kidneys, all the stuff, whatever. But the same thing happened to me. I grew up in a very middle, white class family. I had all the resources that I ever would’ve needed.

But after I had that surgery, because preexisting was not in place, I lost all my insurance for years. I ended up having a ton of adverse kidney stones, and lots of problems from it afterwards. I just wanna stop there and pause so we can just live in that space, because you and I both had that lived experience. Even though we came from a household that provided everything we ever needed, when you have this type of medical need, it’s extremely expensive. And if preexisting gets taken away from us, there’s significant adverse issues that happen. So I’m really happy that you brought that up, because I think that’s really important, especially right now, today in 2026.

Lynsey Chediak: I’ve always had a big struggle with that. How is a preexisting condition something you’re born with? That doesn’t fit in my mind. I’m glad we have it. There’s so many examples like that where I feel like the disability community has been left out of the dialogue on naming some of these different insurance benefit designs, or whatever it might be.

But it’s just seems like a misfit. Of course it won’t change, unless we advocate to change it. So there’s that. Plenty of work to be done.

Alycia Anderson: Yeah. Yeah, totally. Thank you for sharing that. I think that whole story about your femur growing back, and you eventually having the moment where you stood up for the first time. And you said in the video it was the most amazing moment of your life. I just think that it’s really beautiful that you were gifted that gift in your lifetime, and well deserved after so many invasive long surgeries that you’ve endured to achieve that finish line, that milestone, or whatever.

I just think it’s really quite impressive and awesome, and it gives you so much hope. It’s a really hopeful story.

Lynsey Chediak: It does. Just going back to the emotional burden and just the emotional processing you have to do. It is really crazy that the first 15 years of my life, you could immediately tell I had a disability. You could tell I didn’t have the same physical mobility as those around me.

And now, I like to say I blend. And that’s also weird, right? I don’t know where I fit anymore. Because now I don’t have that indication, as evidently, to the average person on the street. If you’re a doctor, you can tell. It’s been a rollercoaster emotionally, also, to have that dichotomy.

Alycia Anderson: That is interesting. I have had so many personal thoughts and also people going, “What if you could walk one day?” That’s definitely not in my path. But then I would always find myself thinking like, “Who would I be? What would I be if I was able to, your point, blend in?” I don’t even know how that would feel to be able to blend in.

Lynsey Chediak: It’s just as strange. I think maybe that’s the one connecting thread is you have the lived experience of people putting you in a box as being disabled. My family would say just physically limited. I just can’t go as far as other people. I like that when you’re a kid, you can pick your own language.

I think that goes a long way. It’s also hard, though. Because to your point, it’s tough for me because I may blend in now, but at my core level, at my bone level, I’m hanging on by a thread. In crowded areas, like in airports. I live in the Bay Area. On BART, I always have to sit down. I can’t stand for more than a couple minutes without being in pain and being uncomfortable. Because I didn’t stand the first half of my life, I have really low bone density. I’m still who I am. People don’t have the physical visual signal.

That’s been also just strange to have to then still constantly use my voice and advocate for myself. That hasn’t gone away. Before, I was always explaining myself, trying to make sure people understood I’m a living, breathing human, who can carry a conversation. And do not say anything about me or what I can and can’t do. But now I’m doing the opposite saying, “Hey, just flagging. I can’t go on that two mile hike.” That’s still also really hard because then they get confused. You really can’t win. I’m very grateful to have the freedom I do now to be able to walk where I wanna walk. I don’t take that at all for granted. It was worth. It definitely came at a steep cost, as well.

That’s incredible to have both lived experiences to compare. Wow, that’s interesting. Really interesting. I’m obsessed with this interview. I love it. Okay, let’s talk a little stats. Tell me if the stat is wrong. There’s roughly 475 million people worldwide, living with rare disease. Talk to us about the advocacy that’s needed, the education, bringing rare disease more into a visible state. Where are we at with all that? I’ve been working to advance health policies for the rare disease population now, for over a decade. I think we’re coming a long way. The core buckets, as I call it, is we need to get much better at access to diagnosis, and access to treatment.

One available, or other intermediaries maybe that aren’t treatment. What unites the rare disease community is that anywhere from 70 to 80% of rare diseases, whether they’re skeletal, or neurological, or anything in between, is that most of ’em are caused by a single gene change. So they’re genetically defined.

And for me, as an advocate and just thinking about the next hundred years of medicine that can advance, that’s really exciting. Cancer is hundreds of genes changing at once. My rare bone disease is one fricking gene. Only one gene changed, and we just need to target that one gene. And perhaps a treatment could work to get ahead to prevent my bones from breaking, to prevent bone fusions, to allow me to have more physical freedom. So that’s a really exciting time. Of course, in order to get diagnosed, you can get a whole genome sequence.

It’s very hard to access, still. Globally, it’s becoming better. Here in California, you can now get a whole genome sequence under Medi-Cal, which is brand new. That just happened at the end of last year, so that’s exciting. But that’s one half of the puzzle. It takes an average of five years to get a diagnosis for rare disease, way too long. Be great to arrive and get a diagnosis, if you’re a newborn. The other half of the puzzle, like I said, is access to treatment, and it goes back. There’s just so many connecting threads where just the patient load. If you’ve had to wait five years to get a diagnosis and then you have to then fight another five years for a treatment, it’s exhausting, Tons and tons of specialists, you get passed around. There’s never, quote unquote, expert on your condition. Or maybe there’s one and they’re not in your state, they’re not even in your country, whatever it might be. But those are all the connecting threads. What I think is really interesting and what we’re making a lot of progress on is actually the policy levers.

My full-time gig, I work at a biotechnology company called BioMarin. My whole mandate is to help advance health policies across the US that improve the lives of people, both children and adults with rare diseases.

Alycia Anderson: That is amazing. Congratulations. Let’s dive into that a little bit more. Your work at BioMarin, you have worked with policy, I believe, on the World Economic Forum. You’re bringing the global connection to some of this advocacy. Will you go just a little bit deeper on that?

Lynsey Chediak: The biggest example, I’ll give you one right now, in California, which I am really excited about. Like we talked about briefly earlier, with the Affordable Care Act, there’s everyday policy makers that we all elect, right? You elect your State House person, your state senator. You elect the same nationally, as well, that go to Washington, DC.

Every day, they’re writing policies that impact our lives, and yet, the lived experience, the lived patient experience of having a rare disease is not usually there. As a result, I don’t necessarily ascribe that it’s intentional. But as a result, that perspective is left out. And so, a lot of times what we see is policies that cause harm that are inadvertently passed.

Here in California, one that I’m trying to change right now is prior authorization. And I think a lot of rare disease patients have gone through this where if you’re living with a rare disease, you have to get extra insurance layers of approvals. Only because of the diagnosis code being a rare disease.

If you have heart disease and you try to get a drug to help treat that, it’s automatically approved. Whatever your doctor prescribes, you go to CVS, you pick it up. If you have a rare disease, your doctor prescribes you something, your insurance company has to then also approve it. They don’t just take the doctor at their word for their medical expertise, and it’s clear.

So, prior authorization is very harmful. And as a result now, we’ve been able to draft a bill, here in California, that at least would remove prior authorization for rare disease patients in California, which would be a big improvement. Because right now, patients are waiting an average of 30 days or more. Sometimes it’s up to six months for their insurance companies to then agree with their doctor.

It’s absurd. It’s out of a place of what’s called utilization management. So insurance companies, they can’t have every single person paying their insurance premium on a very expensive drug, or on a gene-targeted drug. So they like to add in these barriers.

But when you have a rare disease, most folks are very savvy. You’re gonna get access to care, right? And you have to fight for access to care. So it’s just an extra layer of red tape that serves very little purpose, and is a hundred times out of a hundred times overcome. It just causes unnecessary hurdles and delays.

But it wasn’t designed. The insurance plans weren’t designed for having a rare disease. They’re designed for having hypertension, or diabetes, or something that is still, of course, chronic, but just far more common.

Alycia Anderson: That’s incredible advocacy. Thank you for doing the work for that, I’m assuming with so many more other initiatives that you’re working on. That education alone, I had no idea myself, and wow. I know you talk a lot about challenging the status quo of medicine. I’m assuming that these are some of the bills, and the policies, and the initiatives that you are fighting for right now. How can we support you?

Lynsey Chediak: A question I get all the time, and I’m hoping it gets easier and easier. The most important thing folks should do is absolutely get to know your local state representative. The states are the policy labs of our federal, national government.

So the way to think about it is if you can influence change in your state, that’s gonna be an example that could then be implemented nationally. My recommendation is really make sure your representative in Sacramento knows who you are, about your life story, if you’re comfortable sharing, because they don’t know.

I can tell you that right now. When I walk into a legislator’s office and I say, “Hey, I’m part of the rare disease community here to talk to you about how to improve access to care for those living with rare skeletal conditions,” all of those phrases mean very little to the average person on the street.

That education gap is what leads to policies not representing the community. That moment in their head when they’re reading a bill and they think to themselves, “Oh, I met so and so last year. That’s a constituent that faces these hurdles because they have a disability, or because they have a rare disease.” That sticks in their brain. It’s unfortunate.

Alycia Anderson: That’s a great lesson right there. Go meet your representative, and advocate and use your voice.

It’s all on their website. You can go to your representative’s website and click “book a meeting,” and they’ll give you a date, and a time, and a location. You can do it virtually. But I don’t think people know that they can just walk in and without having to ask, get to know the person they voted to represent them. Or maybe didn’t vote.

Once they’re in office, doesn’t make a difference. They still work for you.

Alycia Anderson: Yeah, and sometimes I think that even the ones that you didn’t vote for are really, I wouldn’t say more important, but definitely need to be on the list of advocacy.

That’s my list too. Did we miss anything that is monumentally fascinating that we need to share?

Lynsey Chediak: When I’m speaking with younger advocates or just anyone even facing a disability, it’s so hard to know what to look out for. My message is always just, “You have to be so self-aware of your own body, of your own health needs. You can’t ignore those health needs.”

And I’ll tell you a brief anecdote about that. When I was 28, I started having neck pain. And in my mind, I thought, “Oh, this is just, I’m sleeping weird. I need a new pillow.” I guess I haven’t bought a new pillow in the last couple years. I downplayed it to some severe level.

It turns out I had a broken neck. My top three neck vertebrae had collapsed on themselves. I went to my primary care doctor, and of course, my primary care doctor has no idea what I’m talking about. No idea I have a broken neck. I had to be passed around to four different specialists.

I was with a neurosurgeon, and the neurosurgeon goes, “Oh my gosh. You havespinal fluid blocked to your brain. Your top three vertebrae are collapsed. You need emergency neurosurgery next month. You need to do some prep, ’cause it’s a scary surgery.” And that all comes from me thinking for multiple months, “I need a new pillow.” I made it. They did a really cool bone transplant. They replaced my top five neck vertebrae. Fused neck gang now. So many rare, skeletal condition advocates. I know fusions are common. Neck fusion is really scary. It was brain surgery.

I have four neurosurgeons, for so many hours, operating on me. Not once did I ever think on my bingo card for life that was gonna happen. I keep thinking, “I’m done with surgeries, I’m done with my health.” I wish I could just ignore it, but you can’t. I like to tell young advocates, “You have to stay on your health. You have to check in mentally, physically, and address it. And you can’t ignore it, because if you ignore it, that’s when you get into some dicey situations.” Like when I learned I had been basically not recognizing and ignoring my broken neck, which you would never do outside the disability community. You would never see a common person on the street break their neck, and keep going on with life, right? That doesn’t happen, but we’re just so exposed to the pain threshold and to overcoming the day-to-day struggles, figuring it out. I thought that was just my new normal.

Alycia Anderson: Maybe take that one step further. I love that you brought that up. I think even in the most recent years of healthcare, I’m gonna make a blanket statement, and you can correct me if you don’t find this. But to your point, primary care doesn’t know. I even find with my own self, I’ve always had to be a very loud advocate for my own health because we know our bodies, in and out.

But I do find myself getting tired of having to fight and convince, and fight and convince. No, there is something. I need a solution. It isn’t the typical “No, that’s just that.” I went in to the doctor a few weeks ago for something, and he just kept going, “No, it’s ’cause you’re sitting, you’re a wheelchair user.”

I’m like, “I’ve never had this before. Never have I had this before, and you’re just chalking it off. You’re not even looking at me. You’re not even taking my temperature. You’re not doing anything.” I find myself getting exhausted going, “I can’t do this today.” ‘Cause I get really tired of the extra that seems to be more of, “We don’t believe you. You’re crying wolf, whatever.” That’s a really good reminder that even when we’re tired, you gotta keep speaking up.

Lynsey Chediak: It’s so bizarre that actually the strongest community, and the people most able to endure pain and just push through it, is questioned at every single appointment. I have the same thing where I’m always questioned. I went in when my arm was hurting.

“Are you sure your arm is okay?” I was told I had tennis elbow, and it turns out my fricking elbow is dislocated. Great narratives in the rare disease community. Folks may have heard of this, but the zebra is a symbol for the rare disease community because in medical school, if you can believe it, doctors are still taught to this day. The quote is, “If you see hoof prints in the ground and you think it could be a horse or a zebra, assume it’s a horse.”

Never assume the worst in a patient, is essentially what they’re taught. But in my case, I’m the zebra. I’m always the zebra, not the horse. When you see something that might look the same as another patient, bone-wise, in my case, it’s super different. But to your point, it is exhausting.

I don’t have a fix for that other than the support of my family. I have to say learning to speak to doctors is an art form. Definitely not a science, that’s for sure. But it is really difficult to see. That’s a whole separate podcast episode.

It could be an hour-long episode of just “How do we get doctors to listen and take us seriously?” Because that’s one thing that has not changed until, of course, you find the right doctor and then they’re always fabulous. But that is such a hard thing and an exhausting thing to do.

Alycia Anderson: I think we should do another podcast on that. That’s a great idea, honestly. And I’ll just be taking notes entire time. You’re amazing. I’m so happy that our paths crossed.

I’m thanking Becky every day for it. Okay. I told you we wrap up with the pushing forward moment. Do you have a little something you live by that you could share with our community to give ’em a little motivation?

Lynsey Chediak: All of them I feel like always come out sounding so corny. But I think that my mantra always is that, “I’m so much stronger than any doctor gives me credit for.” And I think that’s so important, right? Everyone is so much stronger than their medical chart, than a flippant doctor’s response about what they may think they see.

I’ve had 35 orthopedic surgeries in my 33 years of life, and I had no idea I could do that. I have had 30 surgeries by the time I’m 30, and now I’m surpassed the one year per one surgery mark. I didn’t think that was possible, but here we are. I’ll make it even more positive.

“You’re much stronger than you think you are.” That’s why I love podcasts like this. Love the work that you’re leading. We have to talk about how great the community is and also what we’ve been through, so that way we can ultimately move past any of the stigmas that might say otherwise.

Alycia Anderson: Yes. Thank you so much for coming on and sharing your magical magic story. It’s incredible. You’re such an amazing, strong woman and leader, such a boss, and definitely someone that we should all be following. Because you really do embody the successful, hardship, pushing forward through all of it, and just creating an amazing career and really finding a beautiful way to navigate your beautiful body. For lack of better words, it’s really inspiring, as a woman myself. Thank you so much for sharing all of this.

Lynsey Chediak: Thank you for having me. It’s been so great. And if anyone wants to get involved in advocacy, reach out. Always can use more voices and more people. Here in California. Everywhere.

Alycia Anderson: We’ll leave all your information for all of that in the show notes for everybody to connect with you and get involved in advocacy. I know you and I talked about that a little bit. I would love to, as well. Thank you so much for your time, and thank you to our community for showing up again. This has been Pushing Forward with Alycia, and that is how Lynsey and I roll on this podcast. We will see you next week.

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