The Medical Detectives - Chan's Story: The Mystery of the Protruding Eye

Episode Date: February 5, 2025

This week on The Medical Detectives, we sit down with the incredible Chan, known to many as @chanplante on TikTok, to hear her harrowing medical journey from an invisible illness to a visible one. Chan takes us through the baffling medical experiences that followed her COVID-19 diagnosis—unexplained strokes, eye pain, and a frustrating maze of misdiagnoses that ultimately led to her losing vision in one eye.In this raw and deeply personal conversation, Chan opens up about the emotional toll of seeking answers in a healthcare system that often dismisses young women, the frustration of living with an undiagnosed chronic illness, and the resilience it takes to advocate for yourself when doctors tell you, "It's just anxiety."If you've ever felt unheard in a medical setting, struggled with a chronic illness, or simply want to hear an inspiring story of strength, this episode is for you.Join the conversation! Have a medical mystery or story of your own? Send it to [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

Hello, hello, Erin, how was your week? Hi, Fran. I had a great week and I actually I just couldn't stop thinking about the conversation that we had with Chan. A lot of you may know her from her viral TikTok account, ChanPlant, where she has described her journey of going from having an invisible illness to a visible illness and kind of the challenges

that come with having both types. Yeah, it was kind of wild for me because what her story really got me thinking about is how comfortable people are asking somebody about a visible disability. Like why are you like that? Like people feel comfortable asking that. And to have lived on both sides of the coin, I think both of them have their own restraints.

Obviously with like an invisible illness, you're constantly trying to explain to people why you don't feel good. But then with a visible illness, people feel like they're owed an explanation or reason why you are the way you are. And it's honestly got me thinking about a lot about that kind of dichotomy. And I think probably one of the hardest things is when you have a visible illness, but you don't have the answer as to why you have that illness. And we're going to get into that with Chan in just a little bit. So yeah, it's a good one. Can't wait for you guys to hear all about it.

I love me some Chan. I'm a Chan stan. Before we jump into the episode, I just want to remind you all to send us your stories. We are always looking for stories and you can send them in at stories at the medicaldetectivespodcast.com. This is your opportunity to have your voice heard. Hi, Chan. Welcome to the Medical Detectives. Hello, besties. How are you? You guys missed it, but we had a little like get to know you with Chan before we started recording and we are now all best friends.

There is a girl trip in the chat. This is true. We're all going to hang out after this. I can't wait. I had a little head start because I have known Chan for maybe a year now and I am a huge fan of Chan. So kick us off kind of how things start. Oh my gosh.

Yes, absolutely. So a little bit about my health history. As far as I know, I was a totally healthy person. I had no prior medical history. I famously never got sick. Kind of a flex. No unusual medical history in the family. Like, I was the one that never had to deal with any weird stuff prior to contracting COVID in December of 2020. So when I got COVID, I was like, okay, this is scary, but I'll probably be okay. Yeah. And then in February, I was living in Arizona at this time,

still in school, finishing out my last semester of college online. And I started experiencing some strange symptoms. So I started getting numbness and tingling kind of like when your foot falls asleep. Okay. All throughout my forearms and my hands, it kind of got worse when I got anxious. And I started getting headaches, which I never had before. Well, I didn't think much of this.

I was like, okay, this is what people go through. I mean, I'm stressed. Like I wasn't really freaking out about it. So one day my tongue goes totally numb in my mouth. And I'm like, okay, that's strange. What does that feel like? Like, how do you, I don't know, I just can't imagine, like is it like you just had dental work? Yes, exactly. Exactly, like you just had dental work.

It was pretty quick. It was like it lasted maybe three minutes and then it was gone. But I was just kind of like, what was that? What was that? So I go to my mom and I'm like, I think I actually need to go to the ER. And this is around March. It's like a super COVID-y time in Arizona. And I think everywhere. And my mom's like, we're not going to the ER. Exactly.

She was like, absolutely not. And I finally convinced her, yes, we need to go. And when we get to the ER, I start exhibiting some really weird symptoms. Like my blood pressure is crashing. I can't hold my left arm up. And the nurses are looking back and forth at each other. I'm like, what are they thinking? What are they thinking?

So they call a little crash car. I go to get onto it and I completely crumple. Like I lose consciousness for a moment. And at this point, we're all confused. No one knows what's going on. So that first hospital visit, I had just fainted. No one really knew what was going on. I remember coming to, you know, regaining consciousness and I was in the stretcher

and all I could hear was my mom crying in the hallway. And it was such an out of body experience. In a way, it was validating because I knew something was wrong with me. You know, I knew the numbness was a legitimate health concern, but also I started to feel really scared about what this actually was going to be. A few more hours went by and then a nurse came in and told me that this was all just a vasal-blable synchopo episode caused by anxiety. And any validation I had felt previously

kind of went out the window. And all of a sudden I felt like I was being totally overdramatic. Like I was not understanding myself or my body because I truly didn't feel that anxious. OK, what is that? Please explain. Please. Yes, Dr.

Nance can speak to this because it's something that a lot of women have probably experienced. So a vasovagal experience is fainting. OK, that's that's a medical term for for fainting, Okay, that's that's a medical term for fainting, for you know, to simplify it. Fasovagal experience. Correct. It has to do with the nervous system that controls your body's function. And so it can happen if you stand up too quickly, right? And you get dizzy and all of a sudden you faint. If you are really dehydrated and you lose kind of your senses and faint, if you see the sight of blood and you faint, that is considered a vasovagal experience. My little, my fainting spell was attributed though to anxiety.

Like I was too anxious, therefore I must have fainted and that's why all of this happened. I swear I'm seeing a trend in this show, which I do not love, which is that women just are stressed out and don't have health issues. Not to be mad about it, but I swear it's a common thing that we hear. Anyway. Right. Right. And so that was a really big part of my medical timeline because it delayed my care. They sent me home with anxiety meds. So after my initial episode that was misdiagnosed as anxiety, I continued to have symptoms like within a couple of days.

I didn't think much of it. I kind of just assumed they'd eventually subside. I definitely didn't expect to have a huge episode again. I didn't expect for my tongue to go numb or anything of that nature. I thought by taking anxiety meds, maybe I'd make myself better, or just taking myself out of stressful situations. I could stop that numbness and those headaches from happening. But of course, that wasn't actually what was going on. So everything kept happening. And then eventually, I did have another big episode. So three months

go by, same headaches and numbness. And then by June of 2021, I'm hanging out with a friend and the entire left side of my face starts drooping. I'm tired, I'm out of it. And my friend is seeing my face droop. And he starts freaking out. He's like, we have to go to the hospital now. And I'm like, no, no, no, we're totally fine. It's just anxiety. And he was like, No, you need to go to the

hospital. So we went and the ER was still really not taking it very seriously. So luckily, my friend who I always mentioned was male, because I think that's relevant was able to be there and advocate for me and be like, No, we really need to run an MRI. And truthfully, I don't know if they would have if he hadn't been there. Can we take a pause and just shout out to a guy that asked to listen to a woman? Shout out very rare, very rare, very rare. They run an MRI. And a nurse comes in, and she just starts apologizing to me. She's like, I'm so sorry. There's something really serious going on. This is like late at night, you know?

And so they bring in the doctor on call, like via a TV screen. I get them on FaceTime. And at this point we're all confused. No one knows what's going on, but this turns out to be ischemic stroke. What is a stroke? So there's two main types of stroke, per my understanding. Feel free to correct me at any time.

There's the ischemic strokes, and then there's hemorrhagic strokes. An ischemic stroke is not something you're typically seeing in a 21-year-old. That's usually, it means that your brain's not getting enough oxygen. So usually it's from like built up debris and your arteries or like a blood clot.

And so that takes time to develop. So it's very strange that someone, someone this young would have been experiencing that. And he very seriously tells me that I need an angiogram, which is like a procedure where you can see the blood flow in your brain. So an angiogram is what they do is they inject dye into your bloodstream. And then they're able to project images where they can see how the dye travels

throughout the arteries throughout your body and they will map and trace where all of the kind of think of it like a superhighway and see that all of the exits are flowing properly. Gotcha. So that's not even like the solution to the problem. It's just trying to find the problem. Correct. It's more of a diagnostic tool. Okay. Right. And also I just want to say it's so nice for you to be

asking these questions because when you've been in hospitals for so long, you kind of learned to like, I'm like stenotic and angiograms and all these things that probably people don't know. But I've just had to learn because doctors won't take me seriously. Some of them won't. Some of them are really great. But so, you know, this is where we're at. So I had the angiogram done.

All I remember was that a surgeon came in and told me that most internal carotid arteries are four millimeters in diameter and mine were 0.5. And that scared me really badly. I was in the hospital this whole time for like a cool two weeks. It was my first time, my first long stent in the hospital. And I was nervous for the first time ever that I could actually die. Like, is this what dying feels like? I guess so.

And that was a really scary feeling. I am put on high dose corticosteroids, which is like kind of the standard of care for most weird inflammatory things. So I'm put on prednisone and that doesn't really work. So then I have stents placed in my arteries to keep the arteries open. And though they don't know

what caused a young healthy person to have these strokes they think that this will fix it. I had just graduated college despite all of the medical stuff I was going through and I wanted to move on. I wanted to do something big with my life. I had studied magazine journalism and I was to do something big with my life. I had studied magazine journalism and I was going to do something with my degree. Like, I had just gone through this pandemic, I'd gone through this illness, I was ready to move on. And for me, the way to do that was by applying to jobs from my hospital bed. So people ask me all the time how I got the job at People and I tell them LinkedIn because

that's the truth. I literally just applied through LinkedIn, submitted my resume, didn't know any contacts or anything like that, and I got the job. I was going to be working as the editorial assistant for the editor-in-chief, and that was the biggest deal ever to me. It sort of signified that I had a future and that my career was still an option for me and life hadn't just disappeared because I got sick. And I was really, really excited about that. So I got a roommate. We spent a really long time looking for apartments virtually.

Anyone knows that's like a nightmare in New York City. And we found this amazing apartment like right by Central Park and Carnegie Hill. We absolutely could not afford it. I don't know what we were thinking. But I just really wanted to move on and be like successful again. But to be honest, I don't think I ever really shook the feeling that like, I was still really, really sick. Like a month later, I started experiencing some burning and

numbness behind my eye this time. Uh-oh. I'm burning a numbness behind my eye this time. Uh-oh. Da-da-da. So I get myself over to the hospital and they find like a little mysterious mass of inflammation behind my eyeball. They tell me it's most likely I'm an angioma,

which is like a fairly treatable brain tumor. Okay. And I'm like, yes, we can treat those. Like, okay, like we have an answer. And I understand how that sounds, but truthfully, when you have chronic illness, mystery, health issues, you're like, whatever it is, I will take it. If I can name it, I can treat it. So I was super grateful to just put a name on it and feel like maybe I was going to be able to take care of this. They're not particularly malignant, I don't think. They're not malignant at all. So they're benign, but they cause symptoms and they can be very symptomatic.

So being told I had a brain tumor, I was like, okay, well, I need to go back home to be with my family because I'm not going to be alone in New York City. Broke, you know, I'm still 21. broke, you know, I'm still 21. Yeah. I'm really scared in the middle of COVID. Like, I'm just not doing that. I need comfort. I need support. I need advocacy. A lot of people disagree with this decision

for me to fly back home to Arizona to be with my family and my doctors at this time. But like, it was something I needed to do. If you feel like you could have stayed in New York City alone, that's amazing, but you're a liar. Here's what I'm going to say. It's really easy for people to tell you what they would have done when they never have to experience the actual illness. 100%. It is really easy to say, I wouldn't leave my dream job until you have to live with what that is. And that too, like I already felt like a failure because I was having to sort of abandon this dream job of mine where there were like pretty high expectations and I felt like I

was letting everyone down. So I fly back home to Arizona and I wake up in the morning with no vision in my right eye. Uh-oh. Uh-oh. Uh-oh, uh-oh. But I don't think this is gonna last. Like no one wakes up with no vision and thinks, well, that's it for me.

Like I was like, okay, I'm gonna go to the hospital and they're gonna fix me because that's what doctors will do for you, they will fix you. So I was also texting my parents like, hey, like, should I even go to the ER? Like, I don't want them to think I'm being over the top. I'm a drama queen. Right. And what's funny is my dad was like, ah, maybe like wait it out.

And my mom was like, get an Uber right now. They're both at work. Get an Uber right now and go to the hospital. So I get to the ER, again, it's a disaster zone because of COVID. I wait there for like 12 hours because the only ophthalmologist they have on call is reserved for traumas.

So like if you've been punched in the face or something like that, so I'm like, okay, should I throw myself down the stairs? Blink once. They're kind of like, we're not gonna tell you no if that's what you wanna do. Like this is the state of healthcare. Whoa, whoa, whoa, whoa, whoa.

At this time. This really happened? This really happened. People couldn't get seen unless they were like in like a fight? I'm assuming at this time just because the hospital's so overrun with life or death COVID cases that to take care of something that was not a life or death eye emergency probably wasn't on their priority list.

But I would find that to be very unusual to have new onset of loss of vision to not be able to see the eye doctor on call. And with the history of a stroke and having stents and connecting the two. It's hard. I have such complicated feelings about it because on the one hand, you guys are totally right. Someone should have seen me sooner, but also people were dying literally all around me.

And with a lot of just in general, these stories that we are telling, it is very easy to Monday morning quarterback a lot of these situations when you know what the end of the story is. And so I think a lot of our conversation, we can have a balance of giving physicians, you know, grace for what the situation was,

but then also recognizing that for you personally, it had some serious consequences. Absolutely. There were no resources for the physicians, for the people in the healthcare system, and that's kind of where I suffered in terms of my medical care. So at this point, I go to a different hospital against medical advice, AMA, which dings your insurance, but who cares, right? This one's bigger. It's a teaching hospital.

There's more people who can do things for me, but I'm still on so many blood thinners and steroids from my stroke that no one can really operate on me. So they admit me, kind of, you know, let me hang out for a bit. And they schedule craniotomy, which is basically when they drill into your skull so that they can take a bit of whatever's behind my eye, debulk it, try to biopsy it, and this is how they tell that it's not malignant. There was a mass behind my eye, but it ended up not being a meningioma. This was not a brain tumor, this was not a brain issue,

but it also comes back as just like, general non-granulomatous inflammation. Like it's not really telling them a whole lot about what I'm dealing with. So all they could tell me was they should probably go away with steroids. So they give me steroids again. I'm really not happy about that.

And they do nothing. I am a hater of corticosteroids, specifically prednisone. I was on high specifically prednisone. I was on high dose prednisone, 60 milligrams for about six months in one year, which is quite a bit to be on. And a lot of people actually like steroids because they offer some pain relief, they help with symptoms,

prednisone, corticosteroids, they didn't do that for me. I proved to be, or the mask behind my eye anyway, proved to be quite steroid unresponsive. So for me, I was experiencing all of the side effects of this medication, which include things like weight gain, mood swings, trouble sleeping. I mean it literally changes the entire way that you look. It changes the way that your fat's distributed in your body, it changes your water retention, it makes you extremely irritable, it can cause psychosis in some people. So this is really not a med you wanna mess around with

for a long period of time. And I know six months doesn't sound that long, but for high dose corticosteroids, it really is. And it was driving me crazy. And I looked like a totally different person. Like I had already lost so much control over my health and now I had lost complete control over my appearance too. And that was so brutal on my mental health.

And I felt like no one was listening to me. I was like, this isn't gonna make me better. I could tell you right now, you're just gonna put me through hell and it's not gonna do anything for me." And this is where they start to tell me, okay we don't really see this because steroids usually get rid of any kind of inflammation quickly. Eventually I go to the Mayo Clinic because no one has any answers for me. I get, you know, spinal taps, testing, craniotomies, biopsies, like more steroids, antibiotics, because maybe it's

an infection, like everything you could possibly think of. At some point I get radiation therapy to see if that would help. Like every, everything, we're just throwing spaghetti at the wall and seeing if it'll stick. That is the worst place to be. Emotional. It is. Because emotionally, yes.

Because every time you try a new medication and it doesn't work or a new treatment and it doesn't work, it is so destructive because it just takes a little bit more of your hope when you're like, oh, it's going to be this one. And it's not, there's only so many times you can say that before you start to like, right. Treat yourself as the problem. I think that's like, I like, right, yourself is the problem. I think that's like, I'm just right. Right. From my own experience. I don't want to put that on you. No, I agree.

But I feel like it's only sometimes you can hear that. Right. Right. And every single time people will tell you that this is the answer. It's a different doctor. It's a different expert. It's a different hospital. It's a different treatment. It's a different medication. It's a different doctor, it's a different expert, it's a different hospital, it's a different treatment, it's a different medication, it's a different procedure, this is going to be the one this person knows best. And then you look and you're like, I have nothing but medical bills to show for everything I've done. And maybe if only I had tried harder, or if I'd found the right thing, or if I had cut out gluten, you know, and he really, it really does turn on you and yourself. And that's a really heavy burden to carry.

And Chan, I want to ask you because we are doing a podcast and not everyone will have the ability to podcast and not everyone will have the ability to visualize. But can you describe for the audience also what you looked like during this period of time? Yes, absolutely. So to paint you a picture, I've really been out this for a while. My eye stops moving for one, so I can't look in either direction, up or down, left or right. So previously you had full movement in the eye.

Correct. Okay. So now it's not moving. It looks a little bit like a lazy eye and now it's bulging. So there's something like 26 or 27 millimeters of proptosis, which is the medical term for like an eye bulge. Thank you for that. Which is a lot.

Given speak. Yes. It looks like with all the kindness and love to my former self, it looks a little bit like a frog or like a little lizard. So the entire under eye is also red because due to the mass, which we call a pseudo tumor, the mass behind my eye, there's no blood flow happening, there's no drainage happening. So I've got this big red inflamed eye,

absolutely bulging, drooping, kind of like dragging the right side of my face downwards. I think that's a pretty accurate description. And it's painful as all get out. I describe it kind of like fire because it was a type of nerve pain ultimately. When I had flare ups and the mass behind my eye would grow bigger, sometimes it would press up against my facial nerves and cause that fiery pain all throughout my face. It literally felt like my face was melting

from the inside out. It was excruciating. And they diagnosed me with something called trigeminal neuralgia, which is just extremely painful nerve pain. Extremely painful nerve pain, okay. But it was really debilitating and it was really scary because it would happen like

at the same time every single night and wake me up out of my sleep and it was disorienting and it put me in a really bad place mentally. Pain turns you into a different type of person and makes it really hard to be joyful, to be kind, and that's something I really didn't like. I could feel myself kind of becoming cruel, and not because I wanted to, but because it was ruining me. And I think that's something that's extremely difficult to work through, and that kind of motivated me to try to find something, anything, that was going to make it better, even if it meant removing my eye. I remember most recently going to a very

well-revered cancer hospital in Texas and a rheumatology specialist telling me that they've never seen a patient like me. And in a way I was like, oh my God, thank you so much. But in a much realer sense, I was also like, how is that possible? Like how has no one seen anything like this? It's deeply frustrating and now I just want someone to tell me why this happened more than anything.

So that's when I start looking into long COVID. I started researching it on my own just having known that I had COVID and then I had a stroke. It's not a bar jump and I'm not trying to attribute every single thing I went through to COVID, but that was at least a starting point for me to research and I started connecting with more people who were dealing with complications from COVID and that started giving me just a little bit more closure, a little bit of an idea, a little bit of comfort that yes, other people are dealing with complications. They might not look exactly like yours, but you are not alone by any means. And that was huge for me. So January 2022, I'm exhausted after all of my hospital stays. I actually got COVID for the second time from being in the Mayo Clinic.

So I had to go back to the Mayo Clinic to seek care because I had such a massive flare-up. So I'm tired of all the hospital stays, all my biopsies are coming back blank, I just want to be a normal person. And what's frustrating is that even the Mayo Clinic, like the top standard that we have in the U.S., doesn't really have answers for me. They're kind of debating is the mass behind your eye inflammation or is it an infection? That's kind of like the main debate they're having at this point. At one point in time they were debating whether there was actual COVID particles behind my eye but that turned out not to be the case. So they're thinking IGG-4, sarcoidosis, like, Tulosa hunt, all these different kind of rare issues.

But I still don't have a definitive diagnosis. And this goes on for years in and out of the hospital. And no one having any real answers for me. Some doctors do say they think it's likely COVID related but there's really just no way to know for sure and so I just live this way with my eye slowly pushing further and further out of my head. I don't think I actually started to consider my eye removal until 2024. I really, you know, wanted to believe that I could get my vision back, which was never going to happen, but that's okay. And if I couldn't get vision back, then I could at least make the eye look And if I couldn't get vision back, then I could at least make the eye look

quote-unquote normal again, and I'd be able to like keep that part of myself. So, you know, I was trying to restore this relationship with my eyeball, which was actively pushing further and further out of my head and causing me all this pain. But I was so convinced that I was going to be able to live with her. I wanted to like her. I kind of felt bad for her because she was going through just as much as me. And I really started to develop this appreciation for the eyeball and, you know, ultimately the eyeball is representative of a part of myself that I could have just chosen to hate forever. But we developed a really good

relationship and I really wanted to try to save her and inadvertently a part of myself. And it was really hard to accept that like I wasn't going to be able to. And so that's why it took me all the way up to 2024 when I had another flare up despite being on these super strong immunosuppressants and biologics, you know, methotrexate and Rituximab, they just weren't working. Like it was still getting worse. And at this point I'm like, okay, I can't keep doing this. I'm 24. I want a family.

I want kids. I clearly want a career really bad. And I deserve that. And the eyeball also deserves that. It sounds silly to say, but that part of me also deserves peace. And it was a tough decision, but the right one. Chan, I'm curious if it actually was coming from you to be the one to want to remove your eyeball or if you were the one more pushing for, let's try everything we can do to salvage

it. I pushed back on removing the eye for probably about two years, so from 2022 to 2024. I had one doctor in the ER tell me that he could have it removed in two hours, so from 2022 to 2024. I had one doctor in the ER tell me that he could have it removed in two hours. And I was like, I'm so sure you could, but you're not gonna. Because I wasn't ready, like it's a part of yourself and people might not understand,

like if your eye looks so awful and feels so horrible, like why wouldn't she just get rid of it? But it was after a recent flare up in 2024 when I realized this was going to be my life forever unless I did something about it right then and there. And so I made the decision with my surgeon here in Arizona who is very kind and very lovely and really took an active interest in my case and was able to remove it with a gentleness and a care that I think is a little bit rare to see in terms of like surgery because sometimes that can feel a little more cold and like clinical.

So it was a really lovely way to end the story. So Chan, I'm curious because what I find will be very, I think, very powerful for people listening to this episode is that there are not a lot of long COVID stories that there are physicians acknowledging even that long COVID is a thing, that there are long lasting symptoms, that we don't even necessarily know why it happened or what's to come. And one thing that I am curious about is what I found, I guess probably scariest in the very early goings of COVID is why were some people dying and some people didn't even know they had it, right?

They were asymptomatic. And my question for you is, what is your relationship with just the fact of knowing, like, do you wonder why did this have this effect on me? A healthy 21-year-old woman with no medical problems and for other people, medical problems and for other people, no effects? That's such a good question. I think a lot about long COVID, which has over 200 different symptoms at this point, it's basically an umbrella term, but it's definitely valid. And so many people are experiencing it.

And so many people still haven't recovered from COVID to this day, which we don't talk about enough. But I think about COVID a lot in relationship to ME-CFS, which is more commonly referred to as chronic fatigue syndrome, although that's not the preferred term. It's a post-viral illness that you can get just from the flu or something like that. And most of us recover from the flu, right? We're totally fine. But for some people, they get the flu or some such virus and they're completely disabled essentially for life. And there's no cure and there's abysmal funding

and there's not even really that much research, not a ton of doctors or researchers know about it. A little bit more now because long COVID and ME-CFS are thought to have some connections, but like I said, it doesn't affect everyone. And you know, for a lot of people, especially in the U.S., they don't regard COVID as a threat at all because it didn't affect them that way, just as a lot of us don't think the flu is that big of a deal because we're just going to get over it. But the reality is post-viral illness is not novel. It's been around for a long, long time. You just haven't heard about it because we don't fund it. We don't teach people about it. And we silence, actively silence the people who are going through it. The same goes for long COVID in my mind at least. And we can't let that happen, right? Like

any virus is a threat. Anyone could have an autoimmune issue. Anyone could have weird genetics. Like I said, I had no prior medical history, but this happened to me. I don't know if there's something weird in my genetic sequence. I'm sure there's probably a blip somewhere. But, you know, this could happen to anyone. Anyone could have a blip. Anyone could experience complications. And anyone might not, you know. The rest of my family also got COVID and they were totally fine. So. So, honest question. When you were telling a story, I thought you getting COVID was just like, when it started, but they actually feel like COVID is

the thing that kicked this all off. I mean, I don't have any definitive answers. And I try to be careful about how I answer that because I don't want to like, I just don't want to be used as a gotcha moment because COVID's such a like political thing now. Girl, I'm fat on the internet, I get it. But in my mind, absolutely COVID is what sent me down this strange autoimmune spiral. Yeah. At the very least, you know,

I'm aware of what an anchoring bias is. I'm not trying to attribute every single thing I went through to COVID, but I got COVID and three months later I had a stroke. It's strange. It's in the differential. It's in my differential for sure. And I don't necessarily sit here and say like,

long COVID is the answer to everything. Do I think I'm still experiencing complications? Potentially. Yes, potentially. I've talked about this before where I think we have to value patient experience similar to how we value what the medical system has put in place to help care for patients. Because doctors, at the end of the day, we're just doing our best to work within the bounds of what we know. And a lot of what was going on in early COVID times, when we're talking about Monday morning quarterback, right? Yes, it's easy to look back now and say,

oh, I can't believe we did these things, or I can't believe we didn't know about these things. You do what you do with the information you have at the time. And I think that's a lesson for today, but also to understand that not everything has a diagnosis. And that's what's probably the most frustrating part of your story, Chan. I imagine that to this day, you've seen how many doctors and can you definitively say, you know, what was wrong or what caused this? Right. I can't really. And people still ask me all the time, like, how did you lose your eye? Like, what's wrong with you? What disease did you have? And I can't give them a small answer.

But like you said, it's not a bad thing because even if I had something, a label, right? Like say, Tulosa Hunt. Yeah. Tulosa Hunt was one of the things they thought I might have. It doesn't really give you a ton of clarity about what's actually going on or how you can actually fix what's happening.

I had so many doctors tell me that they could fix me, tell me that there was a solution and I'm appreciative to them for giving me hope. I'm not trying to bash them in any way, but what I've kind of learned over the years is that there's really not a magical solution when you're dealing with such a mystery illness. That's not going to stop me and others from pursuing it because who knows, right?

Maybe there is a magical diagnosis and treatment that could solve all my problems. I know that other people have found it, but that's not really what I'm interested in anymore. Like I'm interested in not so much putting a name to what's going on with me, but just finding a way to make it livable and make it better. Not fixing it completely. I just don't even think that's a possibility. In a way, I don't even think we have like all the research and all the answers as to what's going on with me just yet. And it's almost comforting when people admit that they don't know what's going on and they haven't seen someone like me. Because based on everything I've seen, that's the truth.

That's the truth and we need to start there if we're going to have an honest conversation, an honest and productive conversation about what's actually going to work. Giving me six more months of corticosteroids, that is standard of care for inflammation, but I can tell you right now, it's not going to make me any less blind. It might have worked for someone else though, and that's important to know. These aren't bad providers, these aren't bad doctors. It's just frustrating, like not everyone can fix you. You have to figure out how to be okay with that and how to advocate for yourself at a

certain point. So I'm not super mad that I don't have a really clean, pretty diagnosis. I have a sense of what's going on. We've been able to say possibly COVID related, possible pseudo tumor. We've been able to cut it out. We've been able to say it looked like wet cement

behind your eye. So that's good enough for me. It's no longer there. I'm happy. And now I have for I know people can't see me but I have tons of fun eyeballs, little sparkly prosthetic eyes. I wondered if that was like sparkle or like that is cool. Can I see? Yeah. Oh my gosh. Absolutely.

I'd like to get into a little bit of a backtrack into why Chan has this collection of amazing eye patches because she is a beloved figure on TikTok with hundreds of thousands of fans who have followed her on this journey because she had the courage to show up as someone with a visible disability on TikTok and really bring people along on this journey. Chan, what's your account?

I'm following you right now. I'm Chan, C-H-A-N, plant, P-L-A-N-T-E on all platforms. Tell us about your decision to make this story public and take people along on your medical journey. Yeah, it's so funny because I initially started making TikTok videos specifically in 2021 when I was in the Mayo Clinic just to kind of update my friends and family because it was a much different space on that platform. And just, that was really a place where I felt safe to like be silly and relatable. Like I wasn't going to post on Instagram, like me with my head all bruised up and, you know, I wasn't feeling or looking my best.

So that platform was where I decided to just be honest and real. And one of them accidentally went viral one day and I was like, oh, this is nice. And actually I was able to connect with so many people within the chronic illness and disability communities, which was so helpful for me because I didn't know what I was doing. I didn't know what MPO meant. I didn't know any of the medical terminology. I didn't know about advocating for myself.

These people really taught me so much about just how to stay strong, how to be resilient and how to navigate the system because it really is such a skill. And it's helped me tremendously in a very tangible way. So I've tried to continue to tell my story and tried to maintain some of that authenticity. And I've kind of maneuvered over to beauty as well, beauty content and you know showing off some of my differences, some of my visual differences having one eye and even when I had an eye that looked a lot different

you know I was doing makeup on that too because I wanted to love myself and I wanted to show people that they could love themselves too and again the community has been amazing and I feel like if you go through the comments we've cultivated like such a kind corner of the internet which is very unusual especially like I work in media and it's just you never see that like oh people are being nice to someone who um you know looks a little bit different. And you feel good now? You feel good? I still feel really um sick like I still get energy crashes a lot but the pain is gone and the quality of life is 10,000 times better than what it was. So I'm very happy. I'm trying to navigate chronic illness life. I don't think I'll ever stop.

Well, Chan, anything else you want to let our listeners know about? We have a lot of people, women in particular, who are really on a frustrating medical journey themselves. What piece of advice would you give to them? It's really hard to stay positive. I think that's one of the things I've been trying to be good at throughout this journey. And it really just starts with the little interactions. Chronic illness is such a roller coaster, especially when you aren't getting the answers you want. And it really beats down on you,

and it can really strip you of the hope we were talking about earlier. So, you know, be nice to your barista, have those kind interactions with your nurses, fly home to be with your family if you need to. Those were the things that ultimately kept me going and I wasn't cheery and sunny all the time. I definitely had really dark moments, but you need to find light, you need to find support if you're going to get through it. Like you can't white knuckle

it without any kind of joy, without any kind of levity. Nothing. I don't want to say nothing is that serious because it really was very, very serious for me, but like we still found time to like laugh in the hospital. And even when I was in so, so, so much pain, like there were some good moments in that too. Pain kind of transforms who you are as a person. Yeah. It makes it really hard to, oh, be silly and goofy, but little things, little things every single day.

It's so helpful and it's what got me through because this was a lot and I'll be dealing with it for the rest of my life. Well, thank you so much Chan for sharing your story, for being so vulnerable and being such a role model for people of all ages and all abilities to show that you too can turn lemons into TikTok stardom. I really hope that everyone follows Chan and connects with the episode.

You both are too. It was so lovely meeting you Anna and Dr. Nancy. I feel like we're besties now. We're all besties. After that, I'm so sorry I kept you for so long, but like I just am obsessed with both of you and this was genuinely so, so much fun. I really appreciate you guys. The Medical Detectives is a Soft Skills Media production produced by Molly Biscar, sound designed by Shane Drouse. If you have a medical story you'd like to see featured on The Medical Detectives, please

email it to stories at medicaldetectivespodcast.com. The information provided on The Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor-patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact Emergency Services immediately or consult a qualified healthcare provider.