The Medical Detectives - Anna's Story

Episode Date: January 8, 2025

Welcome to the very first episode of The Medical Detectives!In this powerful first episode, co-hosts Dr. Nance and Anna flip the script and Dr. Nance interviews Anna about her extraordinary health journey. Anna spent years struggling in her body, before finally deciding to get help, which sent her on a whole other journey trying to crack the mystery of her diagnosis. Anna opens up about her experiences with confronting medical bias, navigating being a public figure while living with a chronic illness, and grappling with the shame that often comes with living in a bigger body.Discover how she overcame shame, fear, and repeated misdiagnoses to finally find compassionate healthcare providers who looked beyond her size. If you’ve ever felt dismissed or misunderstood on your own path to wellness, Anna’s story will bring you hope and validation. Tune in for an honest conversation about women’s health, body acceptance, and the power of self-advocacy—plus the surprising twists and setbacks that make Anna’s story one you won’t want to miss.Do you have a medical story you want to share on the show? Email us at [e-mail]!

Welcome to the very first episode of the Medical Detectives podcast, where each week we'll dive into the fascinating, mysterious, and sometimes downright bizarre world of medicine told by the people who've lived it. We're your hosts. I'm Anna O'Brien, and I'm Dr. Nance, an orthopedic surgeon with a passion for uncovering disparities in medicine. I've built a platform on bringing awareness to misdiagnosis in women and sharing stories that can hopefully help people navigate the complicated world of medicine. And I'm Anna. I'm a creator with my own medical journey. And

while Dr. Nance has all of the experience of a doctor, I know what it's like to be a patient with my own medical mystery. And I'm here to ask the questions that you, the audience, are going to be wondering. This show is all about sharing unique medical stories that are not just fascinating, but could also be helpful, whether you're a patient, a caregiver, or just someone who loves a good mystery. Each week we'll have a guest on the show to share their personal medical story, and we'll unpack it together. But today, for the first episode, things are a little bit different. That's right, Anna, because for this first episode, our guest is you. Yep, I'm in the hot seat today. So if I sound just a little bit nervous, it's because I am.

I'm representing you and your stories. And I also represent people who don't have a medical degree, who aren't going to know all of the lingo and might be a little confused along the way. I've experienced personally the highs and lows and frustrations of navigating the healthcare system. So to be the first person to kick this off kind of feels right. Anna's story is the perfect way to kick things off. Her story is relatable, full of surprises, and I just feel so lucky she's decided to share it with us. I just feel lucky to have the opportunity to share it because I wish stories like this were

available to me on my journey, and now they will be. My story is about a lot of different things. The stigma plus-size bodies face lot of different things, the stigma plus-size bodies face when receiving medical care, the body positive movement, and also being a medical mystery and what that feels like. But that's just a few of the things we'll talk about. Mine is just one of the many stories we're going to be telling on this show, and I'm really excited to be doing this with you. We just hope that this show will give people and patients a place to be seen, to find community, and learn from these incredible stories on their own medical journeys. Absolutely.

So buckle up, because this first story sets the stage for everything to come. Anna, you ready to dive in? Let's do it. Hello, Dr. Nance. Hi, Anna. Welcome to the show. I know. I'm a little nervous because on this first episode, it's me. You know, I don't know any other podcast where the co-hosts actually interview the other co-hosts, so I'm excited. Yeah, it's a whirlwind. I think that it is important, though, because I think it makes sense as to why I'm here, right? Like, obviously you make sense. You're a doctor, but why am I here? I ask that all the time. Well, I'd actually love to start with the why. Can you share your intention of sharing your story? Yeah. So my intention with all of this, and even when this came across my plate as something potentially to do, it really is that I've been on a really long journey.

I would say that in some ways I'm not even at the end yet, but every step I've taken forward has significantly improved my life. For a really long time, and we'll talk a little bit more about this when I share my story, I was afraid to take the first step because of a lot of the noise surrounding me. And I think if I can encourage just one person to take a step towards feeling better and whatever that means for them, because it is incredibly personal, then it will have been worth it. And I think that women are in a lot of ways built to be afraid of medicine and doctors and seeking health. And we're sold so many other solutions that aren't really solutions that I'm here to advocate and speak for the fact that there are doctors out there that care and it may just take some work to find them. Well, that's a great way to start. So you mentioned that

you started to notice kind of some changes in your body. When were you aware that your body was not the same as everyone else around you? So the changes in my body really started to happen around puberty. I just started to gain weight, which was kind of unusual because I was always a really active kid. Like they used to call the church doors, the Anna doors, because I was running in and out of them all the time causing trouble. And I used to do this dance where I would move my feet really fast because it just had so much energy. So it was puzzling to a lot of people, how was I gaining weight? And the first thing went to like, oh, she must be eating wrong, right? So I remember around that time when I

started to gain weight that my mom took me to this really shady doctor in the middle of nowhere. And I remember even as a little kid being like, this place is sketch. And went in, there was like one of those little windows that they pulled open. And I looked inside and the woman asked me like three questions. Not one of them was my age or my weight or anything like that. It was literally like, do you have a heart murmur? Do you have any of these other conditions, diabetes? I think, and this is like at eight years old, shut the door, took me in. This older man gave me a speech about why I was awful because I was overweight. And then he wrote me a prescription for what I now know was fen-phen. So at eight years old, I started taking fen-phen.

And wild. Fen-phen is a stimulant that was a popular kind of diet drug in the 90s, but it had significant side effects, mainly cardiac problems. So it is no longer used to treat obesity. Let's just say that that's, I mean, to look back at that now and even to have had to do some things on my journey because of that, you know, because now what we know what fen-pen can do to the body, there were concerns about heart issues when I was pursuing other things down the road. So I don't know why that was okay. I don't know why it was so casual. I think I'm still coming to terms with why my parents thought that was okay to do.

But regardless of it, I was put on that. And I lost some weight, but not really. And I just remember during that period of my life that every once in a while, I would get to eat normal food. So my mom, I remember, threw everything away in the house, like had this big menagerie where like everything that, in my opinion at the time, tasted good was in the garbage. We were left with like brown rice, flavorless chicken, shredded wheat, and vegetables. That's it. And I remember, and I have this very vivid memory of when I was about, I want to say 10 or 11. I went to my friend Nikki S's house and her mom made me a cheeseburger.

And I remember sitting there eating that cheeseburger being like, this is the best thing I've ever had in my entire life. This cheeseburger, wow. And this like cheese, it wasn't even probably that good of a cheeseburger but because i'd eaten such terrible food for like a while like we're talking in and out cheeseburger or yeah like it was probably like mcdonald's cheeseburger but i just remember being like oh my god i was like my life has forever changed like music played, lights flashed. Like it was like this amazing thing. And I didn't die. There were no issues. And I just had a normal day. And I remember,

I remember that up until that point, I had a really weird relationship between pleasing my parents and losing weight. Like I felt every time I got on the scale that I was a little bit of a failure because I wasn't losing as quickly as they thought I should have been losing taking fen-fen, but I was starving and still very active. So what, what ended up happening is life was just kind of, you know, bleak. And so I stopped, I would say in a little bit, I stopped being as active because I had no freaking energy. And my body started to change because I wasn't the same active person I was before. And I started to put on weight instead of losing it. And I think at this point, a lot of the articles and stuff that came out

about fen-fen, you know, we all got off of it because it wasn't legal anymore. So basically, I gained a bunch of weight. And I kind of just accepted it. In my 20s, I moved on from my parents, I moved into a really amazing group of friends. And I think that every friend group goes through this. I mean, I hope they still don't go through it. But back when I was in my 20s, everybody went through it, which was like the collective culture where girls got together and dieted together. So we did the thing that everybody seemed to do, which was join Weight Watchers, right? You know, we all got together, we'd go to our group meetings together, we would support each other, we'd share recipes, we'd weigh in. And honestly, I built my friendships around losing weight. And that's a really weird dynamic, right? Where that success in losing

weight was also like a success of friendship. When it doesn't work for you as simple as that, it's almost like you're a failure in your friendship dynamic, which is something that I'm, honestly, I don't know if I realized until I just started talking about this part of it. But like, I think as we fast forward and I stopped losing weight, I lost about 100 pounds that way just by literally getting active as part of this Weight Watchers group. And I would go to SoulCycle with these girls. I would run to SoulCycle, do one to two SoulCycle classes and run back. I started walking to work. So I would walk from Brooklyn to Midtown Manhattan, which is about a four mile walk. And I would walk there and back. And I started just becoming really, really active. Again, I never was like a binge eater or an overeater. So it kind of was like my activity just jumped up and that's where the weight went.

But then it stopped. I had lost weight and gained weight before, but this was very different because I was gaining weight while still maintaining a really healthy lifestyle. So I was still going to spin class. I was still running. I was still eating healthy. I was still walking to and from work. So it didn't make sense that I was gaining weight back. I honestly didn't know what to think. I felt very cheated.

I felt very angry because I felt like I did everything right. And this is my predicament. So like, what the hell? What the hell? And I did start to feel, and I don't think I've ever admitted this to myself until this podcast, which is a little bit wild. But I think I started to isolate myself because I was embarrassed that I wasn't able to keep up with my friends who were making, oh God, I'm already crying, who were making all of these amazing changes in their life. And I was making the same changes, but not seeing the same success. So you begin to build this mental capacity of like, I must be lying to myself. I must be a failure.

I don't want to have to have the conversation about why isn't it working. And I don't even know if my friends judged me in that way, but I judged myself in that way because I built my entire community and friendship around managing weight. And then I couldn't be successful in that friendship because I wasn't losing weight anymore. I even felt that way partially in my job. It's wild to think when I'm really honest with myself, how much that inability to achieve that goal really messed me up. Well, I think which obesity as a medical term and label carries an unwarranted moral judgment to it that does not apply to other medical conditions. Yes. Yes, I think that there is a lot of stigma about obesity. And I think there's a lot of stigma about bodies in general and what visual cues they give us. So regardless of whether you're plus size or you use a wheelchair, people are going to assume an inordinate amount of things about you based on that visual picture. And as much as you may be different than that visual picture, you are never even the benefit of the doubt. In fact, you're always climbing back from a negative assumption. The hardest part about not losing weight for me was, is that I didn't know

what else to fix. And I think the automatic reaction to me was just to do more. But then what happens is you do more and, you know, I would eat less and less. I would work out more and more. And I would say, honestly, running to SoulCycle, doing two classes and running back is probably not healthy behavior. It's just not. And there was one point in my life where I would have been proud of that, would have been like, look at all the exercise I was doing. But the reality is, is like, I was trying to compensate for what my body wasn't doing. And I thought, well, maybe if I just pushed harder, maybe if I just did more, it would change.

And then when it didn't, I really did feel like a failure. I also felt like I was delusional. I think that's a really good word for, for my whole entire journey is like, maybe I'm lying to myself, right? Like maybe I am eating all of these things. Maybe my calorie counting is off. maybe I'm lying to myself, right? Like maybe I am eating all of these things. Maybe my calorie counting is off. Maybe I'm not exercising as hard as I think I am. Maybe I'm not going fast enough on that bike. So it becomes this constant internal, like, what can I do more until you just break down and give up? And that's essentially what happened. I just finally was like, this is too freaking much. I'm done. And I started to feel just unconnected to my friends.

So I dove into work. I would work constantly. I would sleep in the office. And in line with that, we were testing a new piece of software that was for content management for social media. We needed to test that software. I was like, well, I'll just make some Instagram content. We'll see if that does well.

I don't really care. It's all about the job. And anyone who knows me knows that I am a somewhat recovering workaholic. I'm still working on it, but it is who I am a somewhat recovering workaholic. I'm still working on it, but it is who I am. So I became really good at regularly posting, at trying different things because I was trying to test the software that helped brands and companies do that. Well, I worked really hard. And because of that, I inadvertently grew a following on social media, just trying to

test new technology. And it started off kind of slow. I remember I had like 10,000 followers maybe in the first couple months. And I was like blown away by that. I was like, I've made it big. But I had no clue what that would lead to. You know, you start with the 10K, and then it's 20K, and then it's 20K and then it's 50K and then it's 100K and then it's, oh my God, 200,000 people follow me. But that also means that there is a lot of people who feel like they have a say in my life for good and for bad. Being in a bigger body is very polarizing and sometimes that's just enough that just existing in a bigger body and not apologizing for it is enough of a reason to hate me. And one day I was a nobody and all of the sudden I was

like enemy number one to some people. And I think that's when I noticed, actually, if I have to be incredibly honest, the time where I realized my life had been changed by this forever is I posted a picture of myself in a swimsuit, just a normal picture, just me on a beach. And Gillette, the company, asked me if they could use it to just repost. And again, at this point, I didn't know anything about making money. I wasn't making any money. And I was like, sure, you can repost this. I don't care. They ended up using it. It ended up getting in the wrong hands and it became international news. People saying that a plus size person should not be used in advertising for a product like a razor. And it ended up to someone doing a podcast about whether or not

plus size people should be in advertising. It was a very, very popular podcast. I'm not going to name it specifically, but they had a long discussion about whether I should be seen or whether or not I should, people like me should be seen. And it led to me actually getting attacked on a sidewalk. And it's part of the reason I left New York. So I think that's, I think that's when it clicked that I was in a lot of ways powerful because if I could make somebody this angry then like that's pretty powerful but also I had to think about my life in a very different way I had to protect myself and I had to learn to navigate in this world where people knew who I was and had an opinion about me. I also started to get

very involved in the body positivity movement. And this opened up a whole different world where my weight was seen in just a very different way for the first time in my life. So now I had this beautiful place in social media where people were like, you're beautiful, you're special. And we were talking about bigger bodies in a different way. I had lived in this world where I had learned to accept negative preconceived opinions of me and rise above them, which is again, a great skill, but not super healthy or amazing to live in. And now I was presented with a world where I didn't have to prove anything, or at least it felt like I didn't have to prove anything. And that was, for lack of a better There was a lot of supportive people. Don't get me wrong, still bad people out there saying mean things. That is the internet. But it was definitely

a better place. And that space gave me hope in a lot of ways. Hope that I could learn to live in this body and not necessarily constantly be focused on changing that body. And if the body positive community helped me stop measuring my value in a size and helped me start appreciating what my body was capable of, and I will always be grateful for that. That said, my time in that community did cause some harm. And I think that that's really hard to say because I community that make going to the doctor or even doing basic everyday things scary. There's a lot of discussion about how the medical community doesn't support fat bodies, which is true in a lot of instances, but it doesn't mean that all medical professionals are out to get plus size people.

Also, there was a lot of discussion about it's okay to take a break. It's okay to be tired, which again, a valuable insight into life. But I began to feel like, oh, being tired is just part of a bigger body. Being exhausted, being in pain, these things are just normal because I am plus size. So it began to write a script for me that this was just my reality. And this is the reality I had to live in. And I just got, for lack of a better word, shitty cards. And there's nothing I could do. This is a great segue into a question about when you started to think about perhaps your size as a more medical issue, if there were something else beyond just your size that was causing you to feel tired and everything that you just described. I'm going to be really, really candid about all of this. This is a podcast,

so we're just going to be real, right? I hadn't had a normal poop for years And it was beginning to affect my ability to do basic everyday things. And I would get so exhausted on top of this. Sorry, I just said the poop because I was like, that was the thing that like broke the camel's back. But it would also be things like I would go and have a great day. Like I did all of these things. I'm like, man, my body's amazing. I can do all of these things. And then I would pass out. And I would physically be unable to leave my bed. Like everything in my body would just break down. And I would be stuck that way for two to three days.

I would have gastrointestinal issues. I sometimes would be vomiting. I would be violently ill. I started struggling to get out of bed just in general. And I kept pushing myself physically because around this point, I started to feel in my body really broken down. So as I'm in this community, I just kept thinking, oh, the reason my knee hurts is because I'm fatter. The reason my ankle hurts is because I'm fatter. The reason my thighs hurt are because I'm fatter. The reason I'm tired is because I'm fatter. The reason my thighs hurt are because I'm fatter. The reason I'm tired is because I'm fatter. The reason when I stand up, I almost pass out is

because I'm fatter. All of these things just became related to the weight. And that's just how my body was. And so I initially pretended like a lot of those things didn't exist. I think when it became really clear, I have one moment I remember that is the moment where I realized I couldn't live like this anymore. I was in Hawaii. We were filming swimsuits or something, you know, as one does'd burn it if i could where i fall into the sand and i just cry and then i scream turn the effing camera off i don't want anyone to see me like this, I'm so ashamed. And I just, I was this person who represented someone who loves their body. And I was at war with my body. And in that moment, I was like, I am such a liar. And I think that moment is where I was like, I need to make some changes. And I did not share that with the internet right away. I never shared that specific moment with the internet because it was too personal. I sometimes wonder if I've hurt people.

As a creator in the potty positivity space, I parroted a lot of the same messages that everybody else did. Love your body, indulge in what you want. Life is short. Don't feel like you need to have this health standard. And that line of thinking at a very high level isn't wrong, right? But I often wonder if I have driven people to not seek health. And I wonder if there's people who listened to me, who believed in me, who followed me, and are worse off because of it. And so part of the reason I share a lot about my health journey is because I have that guilt and that guilt is going to follow me forever. And I did it unintentionally and I did it because I myself was broken. But I believe that there has to be this space where we can acknowledge that bodies come in different shapes and sizes.

Well, at the same time, acknowledge that just because your body doesn't fit a certain shape doesn't mean you should not care how you feel. It's a really complicated conversation. And it is very nuanced. And there are a lot of very angry voices in it. And I understand why they're angry, right? I get that anger because I've been there and I, in a lot of ways, in some ways, I'm still there. But the messaging is, is at times causing the same problems it's trying to prevent. And I don't know if I'll ever be smart enough or eloquent enough to fully explain that dichotomy, but it is a community that saved me,

but also a community that broke me. And that is a really, really difficult thing to explain. I want to share with you something that my mentor told me a long time ago about why people seek help. And he's a joint replacement surgeon, right? So he deals with people who have terrible arthritis in their knees and their hips all the time. And he asked me, he said, do you know when people come to me and they say, I want a knee replacement? I said, oh, like, you know, when their x-ray looks terrible and there's so much pain. And he said, it's not about the pain. People can handle pain and people are handling pain all the time. It's when you are emotionally fatigued from the pain that that is when they come to see me and they tell me they need help. And so you should feel no guilt in that you felt like it took too long for you to seek answers and reach out for help. I would say that's the norm.

Thank you. Thank you for telling me that. Honestly, thank you. It got to the point where I was afraid I was going to die. I know that sounds like dramatic, but I was also having extremely intense periods. I was bleeding constantly. Like I just felt like my body was on the verge of shutting down. And if this is what living was like, then I didn't want to live. And so at that point, it became a choice of, do I want to die like this or do I want to try and make it better? And it took me a year of therapy to get to the point where I could mentally see a doctor because I was so paranoid from all the things I'd heard. And part of that paranoia came from an experience I had when I first entered the body positive movement where I went to a doctor. At this point, I was still really active. I was running about three miles a day. I was smaller than I am currently and eating pretty healthy. So I went to the doctor. I walked in. She ran

all my labs. There was nothing wrong. I did not have diabetes, prediabetes. At this point, nothing was wrong with me. And she tried to put me on diabetes medication simply because I was overweight, even though my blood labs did not indicate I needed it. Then she tried to sell me a program where I give myself a shot and eat 600 grams of chicken or something like this. Do you know what that is, by the way? It's like some shot you don't eat and then you eat like a tiny amount of protein and that's it. And she was like, I want you to do this for 30 days. And I literally was like, hell to the no, no, no. I will not. Do you know what I'm talking about?

Do you even know what that is? I have no idea what that is. I mean, nowadays, you know, with the era of Ozempic, right? People think shots. That's, that's. No, it was not Ozempic. Don't believe that was the norm. This was like, this was before that.

And it was like some crazy thing. And then you would reintegrate food. So I remember being terrified because she also sat me down and she's like, you need to exercise more. You need to do this. And I'm like, I'm running three miles a day. There is nothing more I can do. So I had had that experience. And now let's add to the table. I've gained back the weight. So now I'm a hundred pounds heavier. What is that doctor going to say to me now? If that was my last experience, what is that doctor going to say to me now? They're going to say you're trash. And now I've heard from everybody else around the internet that when you get bigger, it just gets worse and worse and worse. And they're nasty and mean and they do all these things. So my fear of the doctor was intense. So after a year of therapy, I kind of went through it.

I saw a doctor through a process of extreme elimination. ZocDoc is amazing to get reviews on doctors so you can at least get a gist of what people like and don't like about them. And so I read all of the reviews and luckily someone who was plus size had already seen this doctor and said that they were kind and compassionate and all of that. And I said, awesome, I'm going to go to this person. That doctor, I can definitively say changed my life because they started the process for where I am now.

And when I went in to see him, he sat down. And honestly, I walked in with going back to shots. I said, just give me a Zempik. Just do it. If it'll make me feel better, I can't feel this way because I honestly believed that the solution to my problem was that I needed to lose weight. So I had worked through therapy to accept that losing weight could help my health. I went through a lot of things to try to accept the fact that I was going to have to lose weight. Right. And that that wasn't a bad thing, but it was about feeling better. So I went into this doctor and I'm like, just give me the shot. And he literally looked at me and was like, how can I give you a medicine if I don't know if you're sick? And it kind of

took me back. He's like, I'm not giving you anything until we read your labs. It's like, I don't know what's going on with you. And that is not a professional thing to do. Just hand over medication to a patient I've just met. So he ran some labs on me. And the first thing that came up is that I was in a really bad place. My instincts of the fact that I was on the verge of death weren't necessarily so wrong. I had major deficiencies in a lot of different vitamins. I had a lot of anemia and I was losing blood. Additionally, I came back as positive for Hashimoto's. So I literally thought, okay, these are the answers, right? So put on a

medication for, you know, get on Synthroid, which is what you take for thyroid disorder or hypo or the what? So Hashimoto's thyroiditis, you know, and it actually can, can cause hyper or hypo depending on it's, it's your body's attack on your thyroid, which affects the production of the thyroid hormone. So a medication like Synthroid is given when you have abnormally levels of low thyroid hormone in your body. Thank you. So I got put on Synthroid. I got put on all these vitamins. Immediately things started to improve to a point. I started having more energy. I started having less days in extreme fatigue. So I started to feel better. And I was like, this is it. I've solved all my problems. I started to

lose weight just because my thyroid was not working. That's a problem. So I was like, everything's solved. Everything's done. Everything's great. And it was good for a couple months, but then a lot of the stuff started to come back. So I did get relief. It's just not in the permanency that I expected. So I started to have fatigue again. I started to have anemia that we couldn't get under control. And my doctor was like, I think something's wrong with your menstrual cycle, your lady bit. Something's not right down there. So he said, I'm going to refer you to an OBGYN. I probably needed to see one anyway, because again, I hadn't been in the doctor in a really long time. So he referred me to someone that was with my insurance and I walked into the room and he had just built this great perspective of doctors

for me. So I went in with full hope and full glory, like the entire medical community has changed. Everything is great. We're respected and cared about now. Yay. And this woman was absolutely terrible to me. She would not give me the treatment that my doctor had requested I'd have because she said that I was just too fat for it. And she refused to give me a pap smear for the same reason. She said that the only thing that was wrong with me was that I was too fat and repeatedly told me this to the point where I broke down crying in the parking lot outside. I messaged my doctor in the little portal and I said, I guess I'm just too fat for the normal period. And he was like, listen, I have a friend. He's not going to be covered by your insurance, but he's good. He will listen to you. And he's my friend.

His approach to medicine is the same as my approach to medicine. And I remember walking to that office and being like, this is going to be a train wreck again. I don't know if I can take it. If this happens again, I just, I don't know if I can keep going. And he sat me down. He said, I'm not here to treat your weight. I'm here to treat your illness.

Again, that same kind of messaging where I'm like, okay, this guy has got it. So he did all of the things and he said, I'm going to biopsy you. You shouldn't be bleeding this much. You are on all of these iron supplements and you're still anemic. That doesn't seem right. So they ended up doing a biopsy. They did find a growth in my uterus and it was inconclusive. The test was inconclusive. So it could have been cancerous. It could not have been. And he's like, we're going to have a surgery date for you in three weeks.

You need to get it out. So like I went in from hearing nothing's wrong with you. You're just fat too. To hearing you have a growth and it needs to be removed immediately because we're concerned about its size. Finding out I had to pay out of pocket to receive basic care just because I was in a bigger body was so frustrating and so debilitating because at this point I'd already spent so much money. I was driving to see doctors. It's like I couldn't catch a break. And then to be

in a situation where someone literally refused to give me basic care that my primary care doctor had already requested because they were concerned something was going on. It's wild to me, right? And that that was an acceptable answer and that was okay. And that that person felt entirely comfortable doing it. And then to have to pay out of pocket to get the basic standard tests that lots of people get all of the time and find out, oh, I do have a tumor was just so incredibly frustrating. Why did I have to pay to find out something that we pretty much already had a good inkling might be happening just because someone didn't want to believe it? Someone didn't believe that a plus size person could actually have an issue, that it couldn't

be anything other than my weight. There's no way. And I had to pay for someone to believe me. So I was scheduled for surgery three weeks later. I had to have some really tough conversations about anesthesia and what that meant in a bigger body. But again, because I had a doctor that actually was educated about plus size, he was able to find an anesthesiologist to work with him that had worked on bigger bodies before. And I was able to have a really successful surgery. Fortunately, when we came out of that surgery, it was benign, the

growth, and it was removed. But there began to be questions about my estrogen levels. They weren't necessarily tracking high, but the nature of the growth made it feel like there was potentially too much estrogen in my body. So it didn't make sense. Let's just put it that way. And there's several times in my journey where things don't make sense. So that happened. And again, when I had the tumor and I had that removed, that was really scary because we didn't know if it was cancerous or not. It really came down to, oh, this is a hormonal thing. This is, you know, maybe related to your weight may not be but like, you know, we've solved it and we have precautions going forward. That's never going to be an issue again. You're gonna feel less anemic.

I was like, we've solved it. Everything's done. I'm great. Things are perfect. And then those problems didn't go away. I still have issues with anemia. I still have exhaustion. But every time you go into a surgery or a major treatment like that, you hope on the other side that that's the answer. And it is a little bit of a heartbreak every single time you get that diagnosis and you start that treatment and you think, this is it. This is the time where everything gets better and I can magically be this person that I have dreamed of being or have been previously. And then you find out you can't. And it's hard to keep faith that you'll get there. One of the hardest things about being on a journey to figure out your health, whether it's something like I have or a completely different condition is that you feel insane 75% of the time because you don't

have answers. Like answers, even if they're terrible, knowing what's going on or even the hope of knowing what's going on is the only thing that kind of keeps you alive some days. There's still so much I don't have answers for. And sometimes it does feel like, am I going to feel shitty for the rest of my life? Is my health going to be unpredictable and uncontrollable and unexpected for the rest of my life? So when I stopped losing weight, it became really frustrating. So I ended up working on a campaign related to weight. And I met a doctor that I really loved who studied obesity conditions. And I decided to take a next step and try to figure out what was going on by going to see her.

So I started driving to Houston once a month to see this doctor. And I did start taking Ozempic, but the weirdest thing happened through that process is, yes, I lost weight, but not as quickly as they would have imagined. But what did happen is I started to have just a complete reduction in pain and increased mobility. So I started becoming more and more active because the barriers to my activity had suddenly been reduced. So it didn't hurt as much to kneel or all of my joints used to hurt really bad. So she began to see that that was a little weird. That was another kind of weird behavior. And this starts a kind of trend of things just being slightly off. So she submits a swab for genetic

testing for what's called the rare obesity panel. Now this panel is not the same as the obesity gene panel that you see a lot of people are doing research on right now. These are for conditions that are classified as rare. So like the weird ones, my doctor basically sat me down and she said, listen, I've never had a patient have one of these genes personally, but it is something that we just want to eliminate because your body is not showing normal behavior. So went in, had my rare obesity panel done, and lo and behold, I come back with two genes. So essentially what happened when I got my genetic results back is they give you a

little counselor that sits down with you and walks you through your genetic tests and what they mean. One of the genes is a known gene. It has a lot of different things associated with it. And then additionally, they were like, oh, by the way, these are so rare. No one will ever research them. So good luck. Have a nice day. Goodbye. Like that's literally what they told me. And my doctor there was like, I'm not a geneticist. So we can try things. We can figure out what we can do, but I can't guarantee that it's going to work because at this point we don't really know. I haven't seen this before. I don't have any previous experience to go off of. She talked to some of her colleagues at a variety of different places. No one had seen the combination of the two genes.

So there was just really nothing to go on as part of what do we do. About seven years prior to this, I got an email from a woman and she wrote me an email and was like, I think you have this condition called lipoedema. And I was like, it is so uncool to try to diagnose somebody on the internet. And I unfortunately talked mad shit about this woman behind her back. And I feel bad because at that point, I just was sick of people telling me what they thought about my health. And so I totally tuned it out. I didn't really, I didn't even believe it was a real condition. I think I need to say that. I think I need to say that I thought it was something made

up. Like made up, like, you know, hey, you're delusional. I'm just going to tell you that this is your diagnosis. So you stop bothering me like a pseudo diagnosis. When I started going through this medical process, that word came up again. And I was like, the made up disease. They're just telling me that because they don't want to say, we don't know why you're fat. Instead of saying that will give you a fancy shiny word. You'll feel better about it, but it's just because we don't know. And that's literally what I thought for a very long time. So when I went to the obesity specialist doctor, I did bring up lipoedema with her, mostly because I had received that email before. I'd had other doctors allude to that potentially being a problem, but did not understand the

condition enough to actually say for sure if it was. And I just wanted a diagnosis. Sometimes you just want someone to tell you like, yep, that's it. So you feel a little less crazy though. So I brought it up with her and she was like, yeah, like immediately. Yeah. And then she's, and then I was like, you're just going to say yes. And she's like, well, we'll do a couple of things, but yeah, it was kind of one of those things where like, it's pretty obvious I have it because I don't have any weight on my hands and my feet with how big I am. And because I have orange peel texture,

because I have certain ways of accumulation, because it's completely symmetrical, because it's in certain parts of my body. There's just a lot of things that indicate. So lip edema is most fat that accumulates in the body. We have peripheral fat. We have something called visceral fat, which is on the insides in our organs. condition where the fat gets almost clumped together in a way that it will never go away with diet and exercise. So it's a type of fat that is different from the normal fat in your body and doesn't respond to the typical ways how fat expands and decreases. So it primarily accumulates on the thighs. Sometimes it can accumulate on the arms, but the character of the fat is also different. So whereas most fat is yellow and spongy, lipidema is typically more hard and isn't as mobile as regular fat.

Lipoedema is a real condition. It is difficult to differentiate between what is lipidemia and what is just, say, fat as part of general obesity. But specifically, lipoedema does not respond to the general ways of how to decrease fat. And so you may be doing a lot of exercising and a lot of dieting, and you may never lose that fat. And I think on top of that too, I live a very public life. Everybody has the ability to see and comment on my life. So when I started talking about potentially having

this condition, I received so much backlash that it must be just made up, which is crazy. Like I am an adult woman with a good education. And still when enough people tell you that you're crazy, you begin to wonder if you're the problem. So my obesity doctor did officially give me that diagnosis and was basically like, I'm out of my depth at this point. You need to go see a lipedema specialist. So we did some research. We picked a couple of doctors, which I then flew to LA because they were all in LA, the ones that were pretty active in research. So I go to LA, I go see this doctor and he's like, whoa, you got real bad lipedema. Like it is real bad. You need to have surgery sooner rather than later. Now I've got to go back to that feeling about lipedema. I still at this point, even

though I was posting about it, talking about it, because I was trying to justify my body. But internally, deep down inside, I still was like, is this a made up illness? Is this a doctor in LA who wants to sell me plastic surgery? Because also that is what I heard from a lot of people online. I heard every single day about how I was taking the easy way out and that I was cheating and that I was going to this doctor to magically fix my problems rather than diet and exercise, calorie in, calorie out solutions. And so I grappled with that even through the surgery process, but I mentally decided if I knew I couldn't lose weight by making the healthy choices I'd made, then what was wrong with trying to get to a better body in this route? I just wanted to feel alive again, because I think

once you have a taste of that lifestyle and you're like, wow, if it was just like 25% better than this, then what are all the things I could do? Because I was still limited, right? So I was like, well, what if I can open up just more activity, more movement, more living? And I think one thing that has always bothered me going back slightly to the plus size community is they never talk about that loss of living. Let's throw all of the thing about healthy or unhealthy out about bigger bodies. Let's throw all of that out. Let's say that there is literally no health difference. There is a loss of experience and a loss of living that comes from living in a bigger body. So we proceed down the surgical route. We get in for my first surgery and he goes, wow, your skin's really hard and fibrotic. He goes, still looking at you, I think I'm going to get in there and I think I'm going to need to take like, I think six liters or something. He gets in there

and he ends up taking nine liters. And he said it was the most fibrotic he's ever seen anyone. So we're having a little bit of what? That seems a little odd, but whatever. So we have the surgery. He removes way more. It says it's the most fibrotic patient he's ever seen. He said that my legs were literally like concrete under the surface. And I get through the first surgery and instantly my pain levels are entirely different. The first night in the recovery area, I'm dancing. I'm up on my feet dancing because they tell us we have to walk. And the nurse has to be like, yo, calm down. And everyone tells me, oh, it's the pain meds. Once

the pain meds come off from surgery, I'm going to feel a little broke. No, never went back. I was just like, my life was instantly better. And I was like, oh my God. And I still didn't believe that this was a medical definition deep in my heart. I still thought it was just that. But that my legs were lighter and that's why everything was better. So, of course, I heal to the point where I can for the next surgery. I have my second round of surgeries. My second surgery was really intense. You get a lot of hormone release.

So I got depression, but it was like weird because I've never been depressed. So it's not something I have ever dealt with. And I, when I decided to have surgery, I decided I would be public about it, cover most, if not all of it. So while I was recovering from surgery, I started having these really weird comments about bagels. And I was like, why? I don't understand why I'm getting all these comments about bagels. And so I had to ask, what is going on in relation to bagels? I don't understand it. So previously to having surgery, we recorded a video where my doctor had asked me to keep walking prior to surgery, even though my pain had increased significantly because I'd gone off of the

Wagovi. So I was no longer having any inflammation support. You're also can't take Tylenol. So you're basically like SOL on any type of pain relief, but you need to stay active. So it's not a great time. It is not a fun party. You do not want to go to this event. So I was in New York and I was like, I really want this bagel because I have to walk. I'm going to make myself walk two miles to get this bagel. And I was like, I'll make it a fun little YouTube video for anyone who's dealing with chronic illness. They'll get it. Pain days are the worst. So I walk and various times during this walk, I have to stop and sit down because I'm in pain. And we get to the bagel shop. It is literally just before close. I ordered my bagel and I'm like, I'm so happy I did this. Look at me. I can do hard things, which is something I

really told myself a lot during this journey. You can do hard things. So I was like so excited. I was like, let's just take a cab home so I can eat this laying down because physically I don't want to move anymore. So we get our bagel, we get in the cab, we drive home, I get home to the hotel. I'm filming myself unwrapping it. And it's not the bagel I ordered. It's not the bagel I walked two miles. Now to set context here, I'm having surgery in two days. I've been off of all of this medication that helps me stay regular in a lot of different ways. So I am a hormonal nightmare, right? I'm also in a lot of pain. So I just start bawling over this bagel, right? I just am like literally buckets of tears because I am, this is all the stress of my first surgery coming out. This is all the hormones that are rolling around in my body. This is,

this is everything coming out. This is the pain I'm feeling because it hurts. So I am crying over this bagel and I was like, I just wanted this bagel, right? And then the next day I ordered the bagel and that's the end of the video. And I'm like, I got it. It's fine, right? So they pick this video up and they make so many videos about fat girl cries over bagel. And they turn it into a fat girl doesn't get what she wants and so she cries they erase the entire part about the fact that it had literally nothing to do with the bagel the bagel was just the thing that i was crying about but it was like very bagel it's not about and this is what people started to

say. So people started commenting bagel gate and then started commenting, commenting. It was never about the bagel. So this turns into this whole thing where people are just talking about bagels vaguely around me. And I have no clue what's going on. Right. And, and they knew I was in surgery. They knew that I was having this major surgery. And that's the thing they decided to go in on is that I cried over a bagel. And I'm just like, y'all, I just had a major surgery. There was no compassion for me as a human being at all. And then I begin to wonder, you know, is it really worth going through this two or three more times? It's hard. Recovery

is a process. Even with the great results I had from the first surgery, recovery from a major surgery is rough. So everything's kind of on pause, right? And I even paused and moved my surgeries a little bit later. And I honestly, my doctor's going to listen to this and be like, you were considering not doing your other surgeries. I'm sure of it. But I was because, again, I thought I was delusional. I still at this point thought that this was a fake condition. Even though I was advocating for it and talking about it, I feel like such a scam. So I started to have really, really bad inflammation post the second surgery. And I've always had issues with inflammation.

It's always been part of the journey. But it became really obvious through this because they just took 22 liters total, so 50 pounds out of my body. And I was heavier than the day I went in for my first surgery. And that was crazy. That was unusual. So they had me go see a specialist in Tucson. Her name is Dr. Herbst. So Dr. Herbst is a board certified endocrinologist that is actually researching the genetics related to fat disorders like lipedema, for example. And if you know anything about lipedema,

she is the OG. She is the queen. She's the queen. And I go and see her. I'm still having all of this inside. I'm still debating if I'm going to do the other surgeries. I'm like, is this worth it? Is this just cosmetic? I'm starting to have with the inflammation, a lot of exhaustion and stuff like that, which is natural with inflammation. So she does two things that caused the aha moment for me. She's like, I'm going to do some, I don't know the name of this, but it is a thing where they do thermal imaging to see how congested your veins are. So they take pictures and it shows almost like a heat map where your veins are enlarged and trapped. So she does thermal imaging of my body, lets me see it, and I can see everywhere that I haven't had surgery is bright purple.

On my hands, my feet, my face, and the places I had surgery, I have no congestion. So she looks at this thermal imaging and she's like, wow, you're super congested. We talk about some of the areas I have pain. We can see corresponding congestion in that area. She points to a bump on my arm, which I thought was a fat roll. I thought it was a fat roll. It's right here, like where you can see kind of like a bump coming out of my arm. And she goes, I don't think that bump is fat.

And I was like, oh, it's got to be fat. And she goes, no don't think that bump is fat. And I was like, oh, it's got to be fat. And she goes, no, no, no, no, that's not fat. So she pulls out an ultrasound and she shows me what's going on under there. And it is a vein that is, I guess, leaked. And sitting under here, and this is an area I haven't had surgery at, I'm having in January, is just a giant pool of plasma that is just sitting in my body, and you can see it. It's wild. And that's when it clicked for me that this is a real illness, that this is a real thing, because I saw in my body the congested veins, and I saw the pooling out in my arm. We also ultrasound a variety of different places that were not surgical yet and saw that all of the lower veins in the body have been compressed and are not able to work. And the blood is traveling through the top veins, which have now expanded and are getting gorged.

So that's what's causing a lot of the pain and congestion in my body is because my blood is moving through one eighth of the veins that should be moving through. Probably ties back to your anemia. Yeah. Well, we're going to keep going down this because we're not done. So she's looking at all this and she goes, let me take a look at your thighs. And she looks down at my thighs and she's like, oh my gosh, it's like teeth. I've never seen this before. And this is where I just had surgery. So I produce very quickly, or at least we see from this ultrasound, scar tissue.

I produce scar tissue at a rapid rate because I had literally had surgery three weeks before. I should not have had the level of fibrosis that I had in my legs. And she literally like, this is the woman that's seen every lipidema patient on the planet, looks at it and goes, oh my gosh, I've never seen this before, which is not what you want to hear, by the way. Never a comforting feeling. No, not a great feeling. And then she goes, I want to talk to you about your genes. And this becomes the first time I begin to understand what these genes do. So she pulls her computer aside. She sits me down. She says, I want to talk to you about your genes, and she goes, you have two very interesting variants, and they're both related to the same thing,

and she goes, they're related to apoptosis, and I'm like, well, what the hell is that, and I will tell you, if you ever have a geneticist explain to you what something is, their dumbed down version will still be too hard to understand. Because I literally had to be like, can you give me an even dumber version? I have absolutely no clue what you're talking about. But from what I gathered, my dead cells do not properly leave the body and they cause havoc. So that would explain scar tissue forming. It would explain estrogen that was supposed to be taken out of the body, not leaving properly. It would explain inflammation problems, not having clear routes to getting things out of the body. Well, what's interesting is, and it may be something different, but I don't think so, but apoptosis.

Oh, that's what it is. Yes. Okay. Okay. Sorry. So apoptosis is the process in which a cell dies. Yes. That's it.

Sorry. I honestly don't know anything else. And how the body clears the cells. No, no. You are actually explaining it perfectly. And it is normal for all of our cells to go through this process of dying and then regenerating. That's in our bone marrow, right? That's where we generate new cells. And so it is normal for our cells to die. There are other cells in our body, primarily it's called the macrophage.

She said that word. Which is part of the immune system. This is how she tried to explain it to me. Yeah, that then gobbles up those dead cells and then they go through the rest of your body and they're cleared. But a problem with apoptosis means that those dead cells don't actually get cleared in the proper way. And so probably all of the cellular material is then what is contributing to the fibrosis, which for people who don't understand what fibrosis is, it's like a thickening and like a hardening of the tissues, almost like a woody characteristic, I guess would be the best kind of way to describe

it. Similar to scarring. Scarring is supposed to be a regenerative process, right? It starts by you have a cut, you recruit inflammatory cells. If you don't recruit those, and that's why it gets a little raised and red and swollen, that's actually normal. That's part of the normal process. And then over time, that scar starts to thin out, soften over the period of a year. So there's an evolution and it's all based on individual cell mechanisms that help with this evolution. So it, you know, really does, as I said, a lot of it, I think, goes back to the genetics, which we're only at the point where we are able to identify a lot of the issues. Now the next challenge is to say, okay, so now what do we

do? Exactly. So essentially this is the person that is most experienced in this who has never seen this gene before, this pairing of genes. And they are both related to apoptosis. There's limited information, i.e. there's no medical research written about it. It's either been hypothesized or tracked in some way, but it's not like it doesn't, there's no knowledge of like, other than it's related to this function, what it actually does. So now we know that these genes caused all my symptoms, the weight stuff, the anemia, the lipedema, the tumor, the thyroid issues, but we can't really do anything about it. So the conclusion of my story now, and then it's kind of a sad conclusion, but at least I have a team of people

looking into it, is that I am, as it stands right now, I don't want to say a one-of-one because there's probably somebody out there that's also dealing with this, but for most of the people I'm working with, I'm the only person they've seen with this. So this is all likely genetic, which was great to hear, but a little bit scary because it means it's more complicated. So we've begun the process of sequencing my genes to start, and I'm going to mess this up because again, this is so out of my depth of understanding, but they're starting to try different pathways to try to understand how my body reacts. This makes sense. They keep saying, we're going to run these pathways on it. And I don't know what that means, but it means that they're going to test and see, I guess, if they do this, does my genes do

something different? I don't know. But the goal is to see what is happening with that. What was the word? Apoptosis. I keep calling it apoptosis and I have been calling it the wrong thing. So apoptosis. Apoptosis. They want to see where else that's having issues, but they think that it's causing me to have stored estrogen. They think it's causing me to have that weird fibrosis that grows just really,

really quickly, which explains why I kept gaining weight even when I was not having behaviors that would drive weight gain. And it's also potentially a different way of getting lipoedema because it's genetically related versus potentially hormonal. I mean, it's all genetically related, but it's a version that they haven't seen in this capacity. So it's an atypical case. I guess that's the easiest way to say it. And it is unresolved.

But at least we know it's related to apoptosis. And anything I'm going to be doing at this point will help other people with issues with apoptosis in the future. Again, that's not a common thing, but hopefully, you know, finding a geneticist that actually will look into it is amazing because that's hard. I was told I would never find one. And then also having the resources to financially be able to afford all of this. And I think, you know, I hope as this series goes on, we talk about that a little bit too, because a lot of these things are not accessible and not affordable and not covered by insurance, definitely not covered by insurance.

So how does it feel? I know it's been very, very recent. Knowing that your whole life, all of these struggles have been related to a genetic condition, something that you literally cannot control and had nothing to do with a lifestyle choice, or if you just had better habits. I am still coming to terms with that. Even though. I can only see the times in my life when I should have done better. I still, even with all of this, even though I now have accepted the condition, even though I now have this genetic insight and all of these other things. I still see every moment in my life when I could have done better. And there's still so much guilt and shame around choices that I thought could have been better. And I have been publicly pushing myself to make choices that I once

perceived as bad because I think that I need to learn how to get over that shame. Because it's not healthy to carry that burden. Even knowing it's not my fault, I still feel like it is. There is a community of doctors who still do believe that obesity is the individual's fault. And it's not like 10% of our population is overweight. It's like 60% of our population. All these people are getting overweight. What is going on? Our genetics could be changing. Our food could be changing. Our environments could be changing. Our socioeconomic situations could be changing. What is causing

people to gain weight? So let's take the morality out of it completely. Like let's take the choice out of it and say it's not a person's choice. So if it's not their choice, if nobody would choose this, we have to start looking at this as something that's actually a medical issue versus punishing people. I have gone at great lengths to share my medical journey, which at times I've really regretted, to be honest, like it's hard. And even with some of the best doctors in the world voicing in on this, people still don't believe me. And sometimes I don't believe it, even though I do, like, it's just, it's this, I can't explain it. When you, when you realize you're just this, your body is unusual. You're like, did they make a mistake? Did they,

was the genetics off? Was, you know, like what happened? Right. I guess I just don't want it to be true. And I think the harder part about this is like, I thought when I started the lipidema surgeries that it would just magically solve everything, or at least I'd get the body that I wanted and had tried for. And I will get that body for some time, but because of the way my body builds fibrosis, it may not be for as long as I want it to be. And, you know, I'm going to keep trying everything that the doctors suggest to me and encourage me to do but when I really think about it it's like I'm going to share something really sad and I'm sorry I'm going to end this on such a sad note but I was talking with someone the other week and they were like you know you're getting older are you concerned about not having kids? And I was like,

I don't want to give them this. And the reality is I can. And that's a hard thing to think about. That your genes are bad. And I often sometimes, and I, sorry, this is so sad. This is so depressing, but I sometimes think about like, am I meant to be alive because all these things don't work? And I know that that's just, you know, me coming to terms with this, right? And dealing with this. And like, obviously I live at the time I do because I am meant to be alive and I'm meant to probably do this. But I still feel every day conflicted. I don't know if that'll ever go away because it's not, there's nothing I can do. There's nothing I can do better. And that sucks. And as a type A person who just wants to optimize and fix, I can't optimize and fix this. Maybe I'll get lucky and someone will have a breakthrough, but maybe I won't.

It's out of my hands. It's out of my hands. Well, if I could jump through the screen and give you the biggest hug, because it takes true bravery to be this vulnerable, to be this public in order to serve the greater good by sharing your story so that maybe one person won't feel alone. And there are so many just themes that for people who may not necessarily have lipedema or a genetic condition or an autoimmune disorder, just about what it's like living with a chronic illness, what it's like feeling judged by your doctors, what it's like having to find new doctors that I think so many people will be able to resonate with and really feel like their own feelings have been validated. I think if I could end on a positive note,

because I just feel like I just cried at the screen for a little while. I cried at the microphone for too long, and now I need to turn it around. Even though everything has been a lot, and it's, you know, I found all of this information out in about a year and a half, and that's a lot in a very short amount of time. I don't regret doing it because if we go back to that first doctor's appointment before we knew any of the other things we know now even just my initial blood work I may not I may not have made it through

without some help I would have been in the hospital and it would have been a much different journey so even though the end result may not be exactly what I wanted, I live a more full life now because I allowed myself to hear hard things. And I think that's the thing I take from all of this. I don't regret it. I don't regret it. I don't feel like I wish I didn't know because at least now life makes a little bit more sense. And at least now I have resolved the issues I can resolve, right? Sometimes there is no magical solution to health things. Sometimes it's about persevering and learning to adapt. And I think that's where I'm at right now. And so it's kind of a hard situation to be in to have to tell this

story at this point, because the reality is there may never be a finite end to this. But at least I know and at least I have people around me who are supporting me. And I think that the thing that really clicked for me is I saw my parents maybe a couple weeks ago and they were literally all on the weight loss train most of my life. And just having my dad look at me and finally go, I finally get it. He's like, I finally get it. And I'm sorry, I didn't listen to you. And I'm just like, you know, maybe this story will help people see people in bigger bodies

a little bit different. And again, it's none of my business what your health is. It's none of my business whether you're healthy or unhealthy. And the reality is, is I don't have the information to make that decision from someone. And if I can pass on a story that, you know, competes with the norms that we're taught, maybe, maybe people will just be kinder to each other. That's the hope at least. Maybe they'll be kinder to themselves. Well, I think that's a perfect way to wrap up. And I am so honored to share this platform with you and to get to be able to shine a light on other people's stories that are really going to make a huge difference. I just can't wait. Like going

into this, I feel like it just is exactly what I wanted to do. Right. I exact it's like, I want people to feel less alone in these journeys. And I think we just have an amazing opportunity to do that. So I'm excited. All right. Well, until next week. Until next week.