Catherine Seo, PhD is the Co-Director of the Lipedema Project and Founder and Director of Lipedema Simplified, LLC. She is also the producer and director of the documentary The Disease They Call FAT. When confronted with almost certain immobility and complications from misdiagnosed lipedema, Dr. Seo traveled the world interviewing patients, doctors, surgeons, and experts and developed the film from her findings.

Dr. Seo holds a doctorate in Media Psychology. Her research has been focused on empowering women who experience distortions of body image represented in the media by applying self-compassion and other meditation techniques. She is currently working on a book about lipedema and developing a series of online courses for patients and healthcare professionals.

www.lipedema-simplified.org

At perimenopause, I started to have significant problems. And through, as I say, a circuitous journey in the medical system and trying to figure out what was going on, I eventually found lymphedema. And I found it through a textbook that had been published by experts in the lymphatic system from Germany. And when I found the textbook, I'm a professor. Most people don't read textbooks. I started to go through the textbook and I found a chapter on lymphedema and when I read it, I went, Holy cow, this is my life story.

Hey, this is Achim Nowak, executive coach and host of the MY FOURTH ACT podcast. If life is a five act play, how will you spend your FOUTH ACT? I have conversations with exceptional humans who have created bold and unexpected FOURTH ACTS. Listen, and to be inspired. And please rate us and subscribe on whatever platform you are listening on. Let's get started. I am so happy to welcome Dr. Catherine CO to the MY FOURTH ACT podcast. Catherine is the founder and CEO of the lymphedema project and also founder and CEO of lymphedema simplified. She has spent her entire life investigating ways of how to manage her relationship to her body weight. When she was confronted with almost certain immobility and complications from misdiagnosed lymphedema, especially after menopause, showed up. Dr. CEO traveled the world interviewing patients, doctors, surgeons and experts in the field of lymphedema. Dr. Sia holds a doctorate in media psychology. She is an executive coach. She is a college professor. While she is a vibrantly curious individual who continues to investigate and learn. And as a woman in her 70s, investigating what her next act might look like, Welcome, Catherine.

Thank you, Kim. It's wonderful to be here with you.

It's wonderful to speak with you. And when I know a guest a little bit outside the podcast, I feel like I acknowledge it. So I need you to say I have the pleasure of hanging out with Katherine and some other circles. So I know you're in for an incredible treat you the listeners. And I want to ask you a question to which I genuinely don't know the answer. Katherine, when you're young girl, a teenager growing up and thought about this is what I want out of life. What was in your thoughts?

What a funny question I came. Well, the first thing that comes up is I remember being probably seven or eight years old and being we lived on the water outskirts of Boston. And I remember looking up at the sky and thinking it would be fun to be an astronaut. Maybe I could fly all over the universe. I didn't go on that pathway, at least not physically.

What I love about that moment, though, is some people have really big dreams when from a young age and some people don't. And I don't place any value judgment on it either way, but it's interesting. You're reaching for the stars. That's what I've heard.

Yes, indeed.

What I also would love to know because we're gonna talk about body image, body fat and you use the word fat and lymphedema and I didn't know you as a young girl. Were you a big girl? At what point did you have to think about your body weight?

It's so fascinating because I don't remember a time in my life where I wasn't concerned about being a chubby yet, when I was little moving into being fat when I was a teenager losing weight many times up and down. What's fascinating to me when I look back on it at one point, I went ahead and look and pulled together photos. I really wasn't. I really didn't start to gain weight until I was was to puberty. That was the time right around there. When I look back on it given what I now know about lymphedema is it makes sense. Now it makes sense, then it didn't

help me understand that when you say Now it makes sense, because I don't know what you mean by that.

Which let me explain a little bit about lymphedema. Lymphedema is a connective tissue disorder. It's a fat disorder, a lymphatic disorder, a metabolic disorder. It was first named in 1940 by doctors Allen and Heinz at the Mayo Clinic. Nothing was done about it. I found out about it in a very circuitous way. I had at perimenopause, I started to have significant problems. And through, as I say, a circuitous journey in the medical system and trying to figure out what was going on. I eventually found lymphedema. And I found it through a textbook that had been published by experts in the lymphatic system from Germany. And when I found the textbook, I'm a professor, most people don't read textbooks. I started to go through the textbook and I found a chapter on lymphedema and when I read it, I went, Holy cow. This is my life story. So let me back up and say that lymphedema is triggered by exacerbates by hormonal dysfunction. hormonal dysfunction for women, is at puberty, pregnancy, perimenopause. And any kind of gynecological surgery can trigger it. In fact, surgery itself can trigger it because it triggers the lymphatic system. So we know a lot more now than we did when I was starting this exploration in about 2011 2012. As I look at it, at the time, there were several independent groups of women like me, around the world, there was a few women in Australia, they were few women in the UK, there were some across Europe. We were all asking the questions around the same time. It was through conversations and complaint. This happened to you did this happen to you what happened to you that the picture started to be filled out and we were able to identify some of what we now know. It's certainly got a started.

Couple of thoughts as I'm listening to you, I I feel like I better understand what activates lymphedema. What I know just based on what you said just a little while ago about how my weight went up, my weight went down. I also know however, that before perimenopause, you, you for about 20 years or so managed your weight. And then suddenly, it didn't seem possible. Would you briefly talk about how you manage your weight and what it was like when you go shoot? What I was doing? isn't working anymore?

Yes, that's it. You got it. A lifetime until my close to my late 30s was trying everything that everyone has probably tried and then some the thing that I my boundary was I wasn't going to have bariatric surgery. I just felt intuitively that was not the path for me. So in my mid to late 30s, I found a self help group, Overeaters Anonymous and I started in what was then considered the most rigid of the food plants. It was something called the grace sheet. At first I thought it was at first I remember thinking and nothing had been working at that point. I had been over 300 pounds At my heaviest when I found the self Health Group. I was not back all the way up there. But I was close to 280 it felt imposter Well, nothing I was doing was working calorie restriction. Well, it was a low carbohydrate food plan. And back then, which was in 1986. You know, I, we didn't know what we now know about carbohydrates. Now low carbohydrate plans are very common back then. It seemed like, Oh, am I going to lose my hair? Am I going to lose my nails? You know, there was I didn't understand it. But what I did understand is that it worked. For the first time in years and years and years. I was, as I said, it was, well, people thought it was a rigid program, looking at it from the outside. For me, it was heaven on earth. It was three weighed and measured meals a day, nothing in between, except, you know, coffee, tea, diet, soda water. And I weighed and measured at all the time, no matter where I was, I can remember being in a black tie dinner, and having my cup and scale with me. And when I went under the tablecloth, I weighed and measured everything, and then I brought it up, and then nobody cares. It was like freedom, liberation, I just had almost 27 years of such freedom. I quickly over a period of year, a year lost over 100 pounds and maintain that weight loss as they say, you know, I had ups and downs. I had a few relapses. You know, when my father passed away, I was closer to him than any other human being. He was my rock. And when he died, I relapsed. But I came back, life happens. But I maintained that until perimenopause, hit. And at the time, I had no idea what was going on. I just knew that I was having symptoms that I never had before. Because I'd had a very easy, easy time of having my periods. I mean, occasional cramps, but nothing to speak, I started to get menopausal symptoms that were significant. The thing that happened is, I started to gain weight again, with I mean, I'm still weighing and measuring my food from the gray sheet, which is very, as I've said it, I don't want to call it rigid, but it's like four ounces of protein here and a fruit, four ounces of protein and eight ounces of salad and eight ounces of cooked vegetables. One tablespoon of fat. I mean, most people if they were facing that they would, they would go Are you crazy. But for me, as I say, worked well, until it didn't.

I just want to jump in because I listened to it from my background as a theater director. And I just keep thinking structure is freedom structure is freedom is freedom. So knowing that there was something that had been working, I totally get the power of it. You mentioned that once it wasn't working anymore because you connected it to menopause. And you started investigating what is out there. You found lymphedema, lymphedema. You went, Wow, this is what is going on with me. And then I don't want to romanticize it. I feel like you've found the secret society of other women around the world. I mentioned the two organizations you started I also want to talk a little while about a movie that you're directed and produced. How did you go from stumbling on something to committing to being the investigator?

I was losing my mobility. One of the issues with lymphedema is the potentiality of losing mobility. It's painful. There are complications, there are comorbidities that come along with it. It is a disease entity. It is not lifestyle choices. And that's the thing that gets very complicated. So through the process. So as I was trying to get help in the medical system, I had had some surgeries, and the surgeon blamed me for the complications that arose because I was fat. Now he didn't say anything about that. For the search race, so I was left with standing outside of what is considered the top hospital in the country. And I was told that I was asking too many questions. And so I was fired from the practice. And I was standing outside of this hospital and saying to myself, What the hell just happened, I'm standing out here alone, I'm gonna be in a wheelchair. And nobody is helping, I don't get it. Now, I have to say, I've had a very incredible supportive primary care physician who walked with me through this whole process. But he didn't know about it either. So we ended up finding out about it together. This is the thing, this was the pivot point. For me, for the longest time, and literally for months, I kept trying to find the answer in the healthcare system. And there was a point at which I realized it wasn't that the surgeon didn't want to help. He honestly didn't know what to do. Yeah. And he was also knowing that there had been some issues, and that he may be open to like being liable. So there were all these complicated issues going on. And there was this moment where I realized that if I was going to find answers, that I was the one who was going to have to find the answers. There wasn't anybody else. And I can remember, you know, sort of saying to myself, nobody's gonna care, who's gonna care, nobody is gonna care about this. And then a dear friend of mine said to me, there's only one person that has to care. And that's you. If you care. That's all you need. And that's how it started. I had this awareness, and this has been part of my going back to wanting to be an asset. Funny way, is this real certainty that the universe has a rhyme and a reason that things always happen? In a way, I believe that is for good, and not for good. And that if I was willing to listen, it would guide me. And I didn't know what I was doing. I didn't know where I was. I just knew I had to take only one step at a time.

A word from your sponsor. That's me. I invite you to go to the website associated with this podcast www.my, fourth active.com, you will find other equally inspiring conversation with great humans. And you will also learn more about the my fourth act mastermind groups where cool people figure out how to chart their own fourth acts. Please check it out. And now back to the conversation. What you mentioned, your mission, and my sense is the power of your mission, the mission is for you, because you have lymphedema. Even since I have known you, you know, you have better days not so good days, you've had a surgery. So you're in the middle of this. This is part of your life journey as a woman in your 70s now, and it's a mission for all others who are affected by lymphedema in the spirit of the astronaut metaphor, which I don't want to overwork, but I know you as you investigated you produced and directed a movie called the disease they call fat. And we sort of joked about the fact that you didn't know what the hell, moviemaking was all about. But as you did other things, you got some help. What should our listeners know about the disease? They called fat that movie what's in it? Walk us into what that movie is about.

I received an invitation from a small group of women in the UK. They were having a weekend gathering. There were gonna be 50 women. And I'm like, Oh my God, and then I couldn't go We'd manage at that time in my life to think I could go to Birmingham for a weekend. And then I finally got that that's exactly what I needed to do. So I went to Birmingham. But I couldn't go without a bigger purpose. It wasn't just going. So I took my video camera, and I said, I think I'll make a documentary. I mean, at the time, I have a background in media. I have my degree in media. So I have a lot of experience. But I never made a documentary film. But I knew that it was going to be an opportunity to capture information that hadn't been put together. And I often when I introduce myself, when I'm giving presentations, I tell people, I have this I have that I did that. But the real thing you need to know about me as I'm a storyteller, I think the most fascinating thing is our stories they tell so much. And they weave information that can't be gleaned any other way. And so I just started asking people their stories. And they told me and as you begin to put that together from a research perspective, because I'm a researcher, is the qualitative research gives us information about patterns, about understanding causality, about being able to see over a large, either grouping of women or span of time, something that can lead to answers. And that's what I was looking for.

Now, what I'm curious about, because you mentioned you, the first reference that you found was going back to 1940. You and your tribe of cohorts, friends, and I want to talk some more about the allies, because if you've had amazing allies, but you took something that had maybe not been paid attention to and you brought it to a larger awareness and consciousness. You mentioned your wonderful primary care physician who was a supporter, even though they probably didn't know much about it. How has the consciousness and awareness around lymphedema changed since you started being the investigator? And how are people maybe perhaps still pushing back against the notion that oh, this thing called the edema

there's more research that's been done just even in the past year, I can say with great excitement that a group of us have been working on a paper, a case definition of lymphedema for the past three years, and it's about to get published. So there's a thank you. There's more receptivity, the probably we had a conference in 2015 that was sponsored by a doctor in New York that I was partnered with, and he and I started the lymphedema project together. We had a conference in 2015. And now, probably the second largest conference is happening in Potsdam, which is right outside of Berlin, and October of this year with some of the top scientists and researchers on lymphedema and I like to think of it as a christening. Yeah, this is it. It's like a naming claiming and putting it out in the world. It's exciting to see that progression. Now. Most doctors still don't know about lymphedema, I get so many phone calls and emails and texts. This is a woman's disorder, by the way. So it primarily affects women. It's hormonal in nature. It's hereditary. It usually comes on, as I said, at times of hormonal disturbance. And there is such a thing in our culture in our medical system as weight stigma. And they call it anti fat bias. There are conclusions, that implicit bias, if you will, that all of us have including me, when I look at my own if I was weighing and measuring my food for so many years, and when I started to gain weight, I said What am I doing wrong? I'm doing something wrong. There is that tendency I have to first of all blame. Shame is so much a part of it. I'm like, oh, gosh, what am I doing what there is, is a natural barrier, which is the belief that weight and fat issues are solely lifestyle choices. And they're not. There are other factors. Perhaps that's the only message that if people can take away that there are other medical and clinical factors that influence body weight and genetics,

in your own life, and I will talk in a moment about your transition into another phase in your life. But you have done so much to spread the message about what lymphedema is about educating other women. But how do yourself not lose hope? Because I've seen you when you've had a really crappy day. And I've seen you when you've had better days. So I mentioned this fall this, this is not something abstract, like you're done with it, you're still in the middle of it. How do you not get disillusioned or lose faith or hope when it's sometimes really hard for you?

That's an excellent question. I came you asked good questions. Thank you. I have reached moments of despair, and had long talks with myself saying maybe you're done. Maybe it's time this is it. Invariably, there is something or someone that stimulates the excitement, of being part of something that has impact in the world. You know, as I was, as this was unfolding over the past 12 years, it wasn't just me and my body and all the issues that were going on. It's like, I would reach points at which I would say, this is like, you know, Moses in the Red Sea, I'm in front of the Red Sea. That's it, there's no place to go. And as I said, the universe was so kind and so generous. I love what Einstein says it's a friendly universe. And the Red Seas would part. I ran out of money, I ran out of everything. And I was like, Okay, that's it, I can't keep going. Literally, I got a donation of enough money to finish the documentary, which was $300,000 It's not a small amount. It's like we had, I could never have made that happen. That happened. Because this has a life of its own.

Well, I'm thinking about the alignment with something bigger and trusting that the bigger thing keeps nudging you along. And but that still takes a deep faith and wisdom to trust that in the moments when we need that kind of guidance to move, move us forward. You're in the middle of announcing or by the time release, this podcast will artist announced that you are passing the baton the official baton in your lymphedema organization onto somebody else. This is in my mastermind community that to be in our 70s and have something we really really really really really love doing our best about to let that go. Because something else wants to happen. It's not easy. I think it looks easy on the outside but it's not so can you for our listeners who may be also grappling with something that they know that lead to go need to let go but it's not easy. How did you walk into this transition and how has again, if we go to hire guidance helped you figure this one out?

Oh, I came. It wasn't even figuring it out. For years I've been looking at looking for someone who would be the right person that could take this to the next level. A feel like I have had the incredible gift to be at the inception of something that has a much broader reach than me. About a year and a half ago. Someone contacted me who found out she had lipedema in her 50s and needed support. So I immediately of course spent quite a bit of time supporting her. We've been in touch. And she was at the time when she contacted me. She was losing her mobility. She needed to use the scooter in a wheelchair. She was terrified. She wasn't in it all the time, but enough that she could see that's where she was headed. So she's fully mobile again. She was on someone's podcast much like this. And she was telling her story. And she sent it to me, the podcast, and I was listening to the podcast. And it was like, Oh, my God, this is the person. She's the one. Yes, there's more to the story. They're always

what also, I know that Lisa had a very outward facing public professional life. Yeah. And as somebody who also has a outward facing public life, I'm not going to let you get lymphedema. I know that, but I'm imagining the levels to which that disrupts everything that we do, and how we feel about ourselves and the layers of all of that. Now, I think this is always the million dollar question. As we let go of something, the universe wants us to create space for other things to come. And I think it's okay to not know what those are. But I have a hunch you're contemplating you have ideas? Like what does Catherine envision doing more of, as she lets go this organization?

Well, it's a process and it's good, there's a transition, and it's gonna be a while of the transition? I don't imagine. I mean, when we looked at it, I had really good counseling from a coach of mine. So Lisa is coming in as Managing Director, and we're going to go through whatever we need to make that transition happen. I had a feeling you were going to ask this question. And so I started to do some reflection. I remember writing a paper on Joseph Campbell, the thing that I remember the most is that stage at which you may be ready to let go is also the stage at which you know, a lot. I know so much about all of this. I have been saying to myself, How do I give back. I mean, that's the thing about the hero's journey, is that ultimately giving back to the community, giving back in some way, making a contribution, makes it all meaningful. And my self help group, there's this whole notion that every single thing you've been through, has its place. And that place in some way, makes the universe a better place. are another way to say it is your message your message.

Let's play with this word. Because people ask me all the time you and I both public figures and people always ask me, So what do you want your legacy to be? And I my first flippant answer is I don't care about legacy. I care about what I'm doing now, every day. However, I appreciate the legacy question. And I felt like you were starting to talk about it. So for you, Katherine, who, in a way launched a movement, you're passing the baton, you have educated Trent, the medical professional on something that was always there, but they hadn't paid attention to and it's not backed up by more research. What does legacy mean to you and the work you're doing?

I have done a lot of work and mission and purpose in coming to peace with who I am. From Hunter Thompson. Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke thoroughly used up totally worn out and loudly proclaiming Wow, what a ride.

That sounds like Concord Thompson.

Yeah, when I reached despair, which I do when I reach places because I have been dealing with, you know, some complications and some comorbidities that have been very difficult I think to myself, just throw in the towel. It's done, you've done more than you set out to do. And then I came, there's something called Life. There's an excitement, to being able to somehow be a part of something greater than me. I was driving the other day NPR was on and they were doing very short show maybe 10 minutes about succession planning. What's the chance? Am I being in the car? It just the smoke? And so they were talking about how few CEOs do it. And how difficult it is. I thought to myself, huh, it's not so hard for me. I don't know why. I mean, I've done a lot of work. But it somehow I see that I was blessed enough that exactly the right person came in, who can take this in a way that I never could. my skills, my superpowers are building things. This is going to need someone who has sustainability. And we just are bringing in someone else that's very brand new. It's just like, you know, and who's the generation. So let me say this. When I was giving a talk, and I was thinking about me and what I had been doing, and I heard myself saying, I grew up in a generation where we were taught not to make waves. And I can say with certainty, I have learned to make tsunamis.

Let's end with I've learned to make tsunamis. And if any of our listeners want to learn a little more about the tsunamis you Catherine have been making, where should they look you up? Where should they look up the work you do? What are the resources that you have available?

Now there are two websites lymphedema, hyphen simplified.org. Lymphedema simplified is an LLC and we work with women. We have webinars, we have conferences, we have courses, we have coaching, we have consulting, lymphedema. project.org is another website. And it is nonprofit. And we focus on the research and we have a number of research projects. And the paper that's about to come up is from the lymphedema project group and a number of Doc's all over the world, which is amazing. So we have two different foci.

Thank you so much for that, Catherine. And thank you for the gift of your work and the gift of you. It's an honor to know you.

Thanks. So keep

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