Autoimmune dichotomy: holding grief and joy at the same time

In this heartfelt episode, Rachel sits down with Julia Edelman to discuss her ten-year journey with uveitis, an autoimmune disorder affecting the retina. They explore the roller coaster of emotions Julia has experienced through the medical challenges and numerous surgeries. She expresses difficult emotions, such as feeling like a burden to her caregivers during her procedures, but also shares uplifting experiences like finding creative outlets through her newsletter, dancing, and building online community spaces to support others facing similar health challenges.

😊 Julia's Eyewitness Newsletter: https://juliaedelman.substack.com/

🐙Julia's resource recommendations: 

• Between Two Kingdoms: A Memoir of a Life Interrupted by Suleika Jaouad
• Isolation Journals, Suleika Jaouad's Substack

🔥 Rachel's Substack, Inner Workings: https://raekatz.substack.com/

✨ Ladies Illness Library written interviews: https://raekatz.substack.com/s/ladies-illness-library

🎶Music "Upbeat Defiant Challenge Funky Groove" by Uroboros Music, licensed through Audio Jungle

Transcript

Rachel Katz: 

Welcome back to the Ladies Illness Library. This is a collection of stories about unconventional illness journeys, and in particular, we're focused on those that are riddled with mysterious symptoms, difficult to diagnose and strike in the prime of life. The illnesses we discuss here mostly affect women, and we don't really know why. And despite their growing ubiquity, these illnesses. Illnesses still live beneath the surface of our culture. So we're trying to change that. On this podcast, you're not going to find ten tips for getting better. We're not here to find quick fixes because they usually aren't realistic in these contexts. Instead, we're focused on honest conversations with insightful people. We're trying to get a view into the shapes of these journeys and the way that we make sense of them as humans.

 I'm Rachel Katz, a once ambitious Silicon Valley CEO turned mother. I have dealt with a range of health issues, from autoimmune disease, anxiety, infertility, chronic foot pain, fatigue, and, I guess just what I'll call gut stuff, my substac inner workings. And this special segment, the ladies illness library, can be found at Raekatz.substack.com.

Today I'm talking to Julia Edelman, who writes the Eyewitness Newsletter. Julia started seeing black spots in her vision when she was in college, and she was told in her early twenties that she has an autoimmune condition called uveitis and that she would eventually go blind. Facing this looming darkness, Julia shares with us her winding treatment journey, her experience with ecstatic dance, and how she thinks about the future. I'd love to just start with some things you're doing now because they're so interesting. I want to hear about the idea of tiny joys and what that concept is and how you developed it and how it shows up in your life these days.

Julia Edelman:

Yeah, I started with tiny joys mainly. I think sometimes there's always this need to really feel reminded of, like, everything that you're grateful for, which I think is always a very important practice. But I honestly really started it when it was. I remember it was, I just wanted to put out something on my substack, and I was, like, going through a really hard time where I was honestly really depressed, but I was like, you know what? I can't think of anything big that I'm grateful for, but there are a lot of really small things that get me through really rough days. And I realized, like, that was also worth mentioning. And so even if it was like a book that I was reading or just a phone call with a friend, I found that those were things that I still wanted to share with people, and so I started doing that. And then I think it was just a really good reminder to constantly keep looking at all the smaller things, because that is usually what I think has the most meaning of, like, those tinier moments in, like, everyday life that can bring you joy instead of, like, the big life changing things, you know, sustainable, I guess.

Rachel Katz: 

Yeah. It's almost more relatable, too, to be grateful for a phone call with a friend than my family or my health or these more abstract concepts that we, quote unquote, should be grateful for. I also noticed you host ecstatic dance and journaling workshops. Can you tell us about that? Because that really caught my eye. It's a combination I've never seen, and I'd love to hear what happens at those.

Julia Edelman:

Yeah. So I'm very passionate about this. So ecstatic dance also for those, if you don't know what it is, because a lot of times when I talk about it, people think I'm saying exotic dance. Maybe I'm slurring. Ecstatic dance. It's basically a kind of dance that, like, the four rules, I guess, or guidelines are that you dance and there's no shoes, there's no talking with other people. So it's kind of just pure dancing and, like, communicating with your body. No phones, so you can feel more, like, present there. And no alcohol or drugs, so it's also, like, a sober dance party. And. Yeah, I just. When I first I did it a few times, and every time I did it, it just brought something out in me where I was, like, it feels very primal or, like, the. 

And all the dancing is, I would say, also very weird. Like, it's the best way to describe it is, like, what it feels like to just dance alone in your room, but everyone's dancing like that, and no one really cares about, like, how it looks to other people. And I never felt so, like, alive in my body. And especially this past year, going through just, like, a big journey after being in, like, remission with my health, I went on, like, traveled for a few months, and there was a lot of ecstatic dance where I went. And I found that it grounded me in my body more than any meditation or any practice that I'd ever tried before. And from doing that, of, like, being so present and in my body, I had, like, so many thoughts that I wanted to write down. I would always, like, kind of, like, run off and run to my phone or notebook and try and scribble down everything that I had, like, felt after the dance. And then I felt like it would actually be so nice to share this, like, write it down with the people I'd shared the dance with and even share it with the other people there. And I've been working as a writer for the past ten years, so I was like, yeah, it'd be really fun to just combine them. So, yeah, so I first kind of, like, experimented with just journaling workshops and just doing that, and then started practicing as, like, an ecstatic dance dj and doing that for the past, started for the past year or so, and, yeah, then decided to combine them, and it's been really fun. So, yeah, we'll kind of start it off with, like, an hour, hour and a half of dance, and then kind of join everyone together afterwards for, like, a meditation and some writing prompts, and then people can share together afterwards. So, yeah, it's really fun.

Rachel Katz: 

That is awesome. I'm really smiling very wide right now. I love that you said it was the most present you've ever felt like, what you might be going for with a meditation. I really like hearing about alternatives to meditation to bring me or us into that place, because sometimes I feel like the project of sitting silently and trying to get there, especially if you have a certain brain like mine that's, like, a perfectionist who wants to do it perfectly. Right. That can be actually really difficult to make that practice work for me. So this super resonates that maybe some kind of actually wild movement would bring me or some folks there maybe more easily or in a more joyful way.

Julia Edelman:

Yeah, no, totally. I think it never even occurred to me until I just kept trying it more and more. And then. And it was funny. I was like, even along that same time, I was even staying at, like, a monastery with monks and trying to work on meditation, and I was like, okay, this is what's going to help me. And, like, because I also had that same kind of brain where it's, like, very hard to sit still and to feel calm, and. And then I found that, like, actually the thing that helped the most was, like, walking meditations or something where there was some movement. And then once I started dancing, I was like, oh, this is, you know, it's. Yeah, it's just meditative in its own way. And, yeah, now that just changed my life. Now it's like, even sometimes when I, like, want to work something out, I'm like, okay, I'm gonna push myself to go to a dance that's so cool.

Rachel Katz: 

What kind of music is it?

Julia Edelman:

You know, it's really such a range. It's like, I guess, a lot, I would say it's a lot of, like, world music is the best way to describe it because it's just from all different cultures, I'd say, but. And then it's a big, like, there's always a big, like, kind of, like, works up gradually and kind of likes. And it's kind of slow in the beginning to have people comfortable and warming up through their bodies, and then, you know, in the middle of it, it's like, yeah, all different kinds of genres, and then it's kind of slow again at the end to have people kind of, like, wind down, but it's. It's almost too many different kinds of music. It's overwhelming.

Rachel Katz: 

And the idea that it would unlock writing makes a lot of sense to me, too, because some. Anything that kind of gets you out of your normal screen focus. I love that. Let's go back in your journey a little bit and fill in some of the gaps. So you mentioned that the past year has been a time of kind of rediscovery, and after a period of remission. Tell me about what happened over the last year.

Julia Edelman:

Yeah, I mean, yeah, I could also take you to the beginning as well, if that helps put things more into focus, but. Perfect, but, yeah. But basically, about ten years ago, I was diagnosed with uveitis, and it's a pretty rare kind of autoimmune condition that makes you eventually lose your vision. And so I was told that if I didn't find some sort of medication or fix to this, then I would eventually go blind.

Rachel Katz: 

How did that start? Like, what? What happened that brought you to the doctor?

Julia Edelman:

I started seeing just black spots everywhere that I went. So it's. It's cut. The best way I can describe it is, like, when you look at a car window and there are all these dirt spots on the window, and you just can't, like, get them off. But it was like that everywhere that I looked, and, like, in every direction, the spots would move. So one day they just appeared, and it just got. It was when I was in college, so I was trying to ignore it. I was like, maybe I just drank too much. And then I, like, I was like, yeah, this is normal. This happens to all college kids.

Rachel Katz: 

Like the freshman 15. Like, the black spots in your eyes, right?

Julia Edelman:

I'm like, yeah, that's fine. And I remember even, like, I mentioned it to a friend, she was like, yeah, it's fine. Like, you've just been going too hard. I'm like, yeah, okay.

Rachel Katz: 

Oh, my gosh. The things we are able to tell ourselves when we're funny.

Julia Edelman:

Yeah, it's really scary. And then I kept being like, it's fine, but I was, like, not able to read or do my schoolwork because it was just like, every time I try and follow a line in a book, the spots will follow me everywhere. And then finally, I came home for Thanksgiving, and I remember I told my mom, and she was like, no, we're. We're gonna go to a doctor. That's not normal. God bless moms for forcing you to. I was like, okay. And we went. And thankfully, my neighbor, he was an ophthalmologist, and so we got. We. He saw me right away, except when it was closed around the holidays, and he, like, looked in the back of my eyes, and he's like, oh, like, you tore your retina. And so he had to, like, laser it that day. And because if. If I hadn't gone that day or waited any longer, I could have. My retina could have fully detached, which is, like, the worst thing that can happen, because you'd have to, like, go to surgery to reattach it. So it's really bad. So basically, he was able to laser it so it hadn't gone to that point. But that's when he was like, you probably got this because you have something called uveitis. So that's how I was first diagnosed. But it was a point where he was like, you could just kind of start putting in kind of these, like, steroid eye drops and just, like, watch and see what happens.

Rachel Katz: 

And so what happens with uveitis? What. What's going on in. In your body?

Julia Edelman:

So, basically, the. The reason that, to me, it was for me personally, because there are different kinds of uveitis, it was attacking, like, it was inflammation in the middle of my eye, and so all of the cells were being inflamed. But also, I also had vasculitis on top of that. So the veins in my eyes also were being damaged, and the vasculitis is the part that makes it vision threatening. So plenty of people have uveitis, and it's not as vision threatening for them, but the combination, basically, that added with all of the cells that were blocking my vision were making it much worse for me personally than other people with the condition.

Rachel Katz: 

Got it. So, basically, your immune system was attacking the part of your eye, and then that was causing inflammation.

Julia Edelman:

Yeah. And that's why it was confusing is because it was just like, you know, there were so many tests done and it was just attacking my eyes and no other parts of my body, which was.

Rachel Katz: 

So it wasn't caught.

Julia Edelman:

Right, exactly. So it was like, you know, it was a good thing that other parts of my body were being affected, but also it was harder to decipher what to do because it was so localized in my eyes.

Rachel Katz: 

Got it. Okay. So you get this really scary diagnosis. You're what, you're in your early twenties?

Julia Edelman:

20? Yeah, 20.

Rachel Katz: 

So. So then what'd you do?

Julia Edelman:

At first I was just told kind of to wait and see and kind of try these. Use these eye drops and keep seeing it, trying to find a doctor that can help and see if there's anything else to be done. And I kept. But at that point, I had just known about the uveitis. And I also was, I think, also at that point, I was a little bit not in denial, but I didn't really want to talk about it with anyone or share because I myself, wasn't really sure what was going on, I think. So, you know, it was really confusing. I think I was like, okay, I have this weird eye condition. It sounds bad, but at that point, I was almost getting.

 I was getting used to the floaters because it was just a part of my life. Like, they never went away. And I noticed they would get worse when I would drink or have gluten sometimes. But beyond that, they were just with me forever. And so I tried sometimes, like, changing my diet, seeing if that could help. And then it wasn't until, like, I moved back to New York and I was seeing this one doctor, New York, for, like, two years. And he was just like, yeah, we'll just keep doing some routine tests and, like, changing up the eye drops again because my mom pushed. She was like, I think we need to see someone, like, who really knows what they're talking about. So we took a trip to Massachusetts to see this doctor who was like, kind of like the. I don't want to say the king of Uveitis, but he's, like, written all of the books on it, you know, like, he has his own.

Rachel Katz: 

The godfather of Uveitis.

Julia Edelman:

Yes, it kind of. Yeah, that was the first time I was like. Like, I remember walking in and, like, I was just like, oh, this is like a whole world unto itself. You know, like, seeing all the. Like, there are, like, brochures and support groups for people with Uveitis. And it was a whole building just dudding into that and it was. I don't know. I remember it was just, like, really shocking to see because most people don't know what it is. There isn't a lot of, like, any awareness of it. So I think just to see a whole, like, center dedicated to it was really crazy to me.

Rachel Katz: 

Right. And it sounds like in your life up to that point, it had been kind of this thing in the background that you're kind of trying to ignore and you weren't really telling your friends about it, and you're just kind of letting it lie and maybe trying to ignore it a little because you were in your twenties, right?

Julia Edelman:

Exactly, yeah.

Rachel Katz: 

And there's this whole building. It's like the center for Uveitis.

Julia Edelman:

I'm like, oh, shit. I think this might be, like, a real problem.

Rachel Katz: 

Is that a scary feeling or a relieved feeling or.

Julia Edelman:

I think I was really just really surprised. And also, like, I think also comforted in a way. I was like, okay. Because at this point, I also was still searching for answers, but also didn't want to be there, you know? Like, I. Like, I didn't. I barely wanted to be at that center in the first place. But I could also recognize that the doctor that I was seeing wasn't helping me. And we went to the appointment, and that was the first time I had this test done called an angiogram, where they, like, inject you with dye, and that way it goes straight to the back of your eyes so that they can see the health of your vessels. And that's when they first diagnosed me with vasculitis.

 So that's when they knew that it was vision threatening. And it took two years just to get to that place, which is how I was able to understand. It was a lot more serious than I realized. And I think that's also part of, like, the frustrating whole. A lot of big aspects of this health journey is just like. Like, it felt like, in a certain way, like those past two years had been wasted because I was like, okay, those two years, I could have maybe started treatment for this part of my disease that no one knew to check for. So I think that was another thing. It was also, like. I think it sort of began this kind of need for me to, like, I never really trust the doctors. When I met them, I was like, okay, are you checking for everything? Because if you don't, then it could really hurt me in the long term, because I get it. There are a lot of patients and doctors don't have a lot of time. But, yes, it was really scary to learn, like, oh, there's a whole other aspect to my diagnosis I had no idea about. Yeah. And so I remember I didn't want to. Like, at that point, I was just on eye drops because I was told that it was okay, but at that point, they told me to go on methotrexate, which is like, just a form of chemo.

Rachel Katz: 

They told you to go on a form of chemo, huh?

Julia Edelman:

Yeah. And it's like, methotrexate, it's like a small dose pill form of chemo that they hoped could, like, reset the immune system. And that was sort of the first serious treatment, I guess, that I was on to try and tackle it.

Rachel Katz: 

We're going to keep going through the, going through the story. I want to hear then what happens. But before we do, let's pause right there. So you're like, and now out of, just out of college, you are on this chemo drug. And, yeah, you've written that you spent the first seven years of this whole journey hiding it from everyone except your family and just a few friends and that you didn't want to share in particular because you're afraid of being a burden. And I think that that is very common. I had a kind of parallel timing wise thing. My first health thing was a foot issue that started around exactly the same time when a doctor basically told me I had this foot issue. And at some point it's going to start chronically hurting. Just wait and see. Then it did. 

The way it manifested my life was I was always worried about how far I was walking and whether I was going to, you know, walk too far to overextend it and then have all this pain and not be able to walk and all this stuff and similar age. And I remember the main thing I felt was just so self conscious about how I was just constantly asking how far the next thing was or just trying to, trying to tough it out, not tell anyone. And I remember particularly resonating, I read a quote about how, you know, the pain is so real to you, but everyone else, like, forgets it really quickly, basically. And that was really a big part of my experience. And I had this just huge fear of burdening everyone with my thing. So that really resonated. And I'm curious how that felt for you and how that evolved for you over time in terms of starting to tell people or not keeping it a secret. How did you manage all that?

Julia Edelman:

Yeah, I mean, look, it's honestly sometimes still something I have to, I think, unlearn a little bit because I think it was so ingrained in me for so long. And I think also, sometimes it's really hard when you have an invisible condition as well, because, I don't know. I think it's almost easier to hide. And people also assume that you're fine because they can't physically see what's going on. And so I think it's easier to just pretend or put on this facade that you're okay. And. And I think I. I had this thought that I think, especially with my eye condition, it felt so rare and hard to understand. Like, every time I tried to explain it, people would like, be like, oh, can't you just, like, get Lasik? Or I would try to, like, can't.

Rachel Katz: 

You drink tea for that?

Julia Edelman:

Yeah. I'm like, oh, I never thought of that. Or, like, and this still happens to this day. I'll be like, explain this very rare autoimmune condition that's caused me to go blind. And people are like, would try to relate, and they'd be like, I totally get it. Like, sometimes I put in my contact wrong and, like, it's so hard to see. And I'm like, I have to. I have to try really hard to, like, be patient. Be like, okay, sure, yeah, but. And just not say anything because I don't want to be a bitch, but, like, very, very different.

Rachel Katz: 

It really is like a human. It must be just, we want to relate, so we'll think of anything. Like, I just did it, too. I was like, oh, I had my journey, but, like, yeah, people just want to relate, and it just so often lands so wrong. We just need to practice kind of just listening.

Julia Edelman:

Right? And that's the thing. Like, I want to. I always give people the benefit of the doubt because it's like, yeah, when someone tells you about this really weird eye condition that you have no. And you have no idea what they're really talking about. Like, yeah, they're going to try and say something to, like, that is the closest anyone can think of is, like, putting in a contact, weirdly. But it was. But to hear that over and over again, I was like, at a certain point, I think I just kind of, like, shut down. And I was like, I think I'm just gonna just keep this to myself also, because, I don't know. I think at that point, I really was just sharing it with my mom. I mean, people in my family knew, but my mom was really the one who, like, was going with me to doctor's appointments and, you know, helping me figure things out. And I mean, I would tell, like, some good friends or, like, the roommates I was living with at the time because they would see me going to doctor's appointments, but I would give them just, like, the bare, brief, like, synopsis. 

Like, yeah, I have a side condition going to the eye doctor today because I just, I think there's a part of me that maybe was in denial, but also I just didn't want people to also see me differently or see me as, like, weaker. And I think I was also afraid that people wouldn't understand, so I just didn't share it at all. But now, like, thankfully, I. I see it so much differently that, like, sharing parts of yourself is actually just a huge part of just being alive. And you shouldn't feel afraid of or ashamed of, like, these weaknesses or these parts of yourself or even to see them as weaknesses. But I think for most of my life, especially, yeah, early twenties, I wanted to feel, like, strong and capable. And everything about my illness made me feel so distraught, really. And also the emotional effects of it. Like, I just was so. Felt so isolated and depressed from having such a rare disease that no one understood and even my own doctors didn't know how to fix. So, yeah, I think in my mind, I was like, it's better not to burden people with these heavy emotions and just, it's stronger to just keep it to yourself. Like, that was, it was protecting the people in my life in some way.

Rachel Katz: 

It's kind of counterintuitive that you'd, in that context, try to protect the other people. But I think we, that's really, really common and supernatural. It's especially, you know, in, at that age, I mean, this happening in your twenties versus in your forties is a totally different experience because at least in my life, there weren't people around me who were going through kind of the types of experience that make you face your mortality, for lack of a better word. Like, it sounds like you got this news that you are going to go blind, probably. How did you kind of process that at the time? Did, were, were you thinking like, oh, I have a certain amount of time left to see? Were you thinking, nah, I'm in denial? Were you, what, how did that work in your mind to hear that at that point?

Julia Edelman:

I think it. I think sometimes I would try and push it from my brain. And then when I went back to doctor's appointments and they were like, every time, it just was always progressively worse news, I would feel the weight of it again. And because the best way that I remember when I first saw the king of uveitis that one time, and he put it in a way that was like, it was very visual, but it's the best way that it's stuck with me since, where it's kind of like water on rock, where it's like it's just slowly eroding. And he was like, you're not going to go blind today or tomorrow, but gradually your vision will be deteriorating to the point where if you don't do something, it will be gone. So I knew it was, it was always just kind of like this cloud hanging over me. Like, I knew it was coming, but I was seeing doctors so actively that I was like, okay, there's going to be a way to fix it. And then progressively, no, every medication didn't work.

Rachel Katz: 

And, yeah, let's go. Let's go back to the, to the story. So you, after the chemo, that sounds like that didn't work. So then what happened?

Julia Edelman:

So I was on that for a few years, and then it just was, yeah, I was just feeling nauseous. It was affecting my kidneys, but it wasn't helping my uveitis, so they took me off of that. And then after a few years, I switched care so many times because I was just always looking for someone to give me the answer of what to do. And no one ever really knew. At a certain point, when I was told that the, like, methotrexate wasn't working anymore, I was living in Los Angeles, and it was also during, like, peak Covid. And so it was kind of like a, like, my doctor told me that my vision was getting worse. Like, everything had just shut down. It was like March 2020. And I was like, okay, I think I'm just going to fly back home to New York for, like a week and just be with family and settle myself. And I went, and I just never went back to LA for, like, like, I stayed there for the next two years. I had very classic Covid stories. Exactly.

Rachel Katz: 

Flew across the country, never, never went back. And then when I went back to.

Julia Edelman:

New York, I was like, okay, I'm going to try and find better care in New York. And me and my mom found this doctor that I'd seen once before when I lived in New York, that was in Johns Hopkins in Maryland. So we would make the drive every month and a half to go see him, which is 8 hours every day, which is, it's a long drive to do in a day with doctor's appointments, but we would do that. And it was a lot of trying different medications, putting me on different immunosuppressants for the next year and a half, until eventually he had tried every single immunosuppressant that he could think of. And so the only last option was surgery. And so about a year and a half into being in New York, they decided to operate on my eyes. And then I was, for the next year or so, going through eye surgeries and recovery for that.

Rachel Katz: 

Oh, my goodness. And it was Covid.

Julia Edelman:

Yeah, and it was Covid.

Rachel Katz: 

There's something that's really terrifying about the idea of COVID where it's like suddenly you can't touch anyone, you can't breathe. The air is dangerous, going inside is dangerous. And then also at the same time, like, your world going black, literally. I mean, I can't even imagine.

Julia Edelman:

Yeah, it was the combination. Also being in hospitals, like, so often, you know, just, you were like. You were already always in mass, and then it was like, added fear when you were in the hospital, and you.

Rachel Katz: 

Probably had bandages on your eyes a lot.

Julia Edelman:

Yeah, it wasn't. It wasn't a good time.

Rachel Katz: 

Yeah. You've written about how you couldn't think about the future because it was like, too. You said, I. I'm incapable of thinking of the future because I'm worried about what happened to me, what might happen to me. My health could change at any moment. That idea of worrying about the future is very familiar, but for you, I think it's been way more constant and heightened and kind of acute because of how just, like, concrete, the process of losing your vision is. I mean, it's just so kind of visual, for lack of a better word. Like, it's so concrete and it could be used as a metaphor for any other illness. Right. Like a slow darkening. Yeah. I'm curious, in that period, kind of how you thought about the future and how that's changed to today.

Julia Edelman:

Yeah, I think it's been a gradual change. I think in that time of peak Covid surgery, seeking treatment every day to find ways to save my vision, I was really obsessed with escaping, or, like, I told myself that I was going to move to France and that I was going to. Like, I kept telling myself the surgeries were going to end soon and my eyes were going to be okay and I could have a fresh start somewhere else. And then every time I thought that I was better, something else would come up and I would have to stay and go back into surgery or having something else get taken care of. And so I think at a certain point, I just was fixated on, like, having a plan, even if I knew it wasn't going to happen. But also. And I think in a certain way, like, I don't know, I. Yeah, I was focused on this plan, but at a certain point, I. I couldn't plan anymore because everything kept falling apart so often that I just stopped planning altogether. Like, I think I just didn't want to be disappointed anymore or have any expectations for my future because every time I would build up an idea or get excited in my head, it would fall apart. And I don't want to say I still feel that way in the sense that I don't. 

Like, I truly do believe that things will work out. And I always think you have to go into things with a positive attitude of, like, so you know that things will go right if you're trying something new. But also, when I still plan something, I just know that nothing's ever a given because I think I'm. I've had so many things change due to different medical issues that it's hard for me to see beyond the present moment because I never have. I do always have this underlying fear that one, I'll need to go back to the doctor or the hospital for something, or that my health will get worse. And it's hard. I don't want to navigate from a place of fear that things will get worse when they've been better for the past year. And I'm so grateful for that. But it's also a very real thing that, like, you know, I know my health could change at any second. So it's hard to sometimes plan beyond the next, like, week or month, because I don't want to be disappointed that something will work out.

Rachel Katz: 

I guess it makes sense why you came to these concepts and practices of tiny joys and ecstatic dance because those are just so in the moment, they're, you know, not in the future. I mean, for at risk of sounding cliche, it's like, basically you. Sounds like you naturally gravitate, gravitated toward these certain things that bring you super into the present instead of a master plan for world domination. Ten years over. The ten year plan.

Julia Edelman:

Yeah, exactly. Like, like, for today, I'm like, I'm all in, but five year plan, ten year plan. The idea that terrifies me because I'm like, I have no idea what. I mean, no one knows what their life will look like tomorrow also, or in a week or a month. But I think after so many years of my life changing so precariously, I. Yeah, it's very hard to plan for anything too far in the future still.

Rachel Katz: 

So you mentioned that the last year has been better. And where we left off, you had tried every medication, you had had all these surgeries, you're in and out of the hospital. So fill us in, what happened between then and now.

Julia Edelman:

Yeah, so, essentially, for the quick synopsis, I had about, like, five eye surgeries. And so in total, they basically. So the way that they were able to calm my uveitis was they inserted something called reticert, which is like a steroid in the back of my eye. So it releases. It's like a. It releases steroids in the back of my eye, so it calms down the inflammation. And on top of that, they were also. They also put in cataract lenses because the steroid was just within a month or two, the steroid was so powerful that it would have given me cataracts. So they just, within the same surgery, also gave me cataract lenses. And then they also did something called vitrectomy, which is where they removed all the cells that I was seeing. So all of those black spots that I was seeing. So for the past seven years, they, like, physically removed them in the surgery, which was, I think, honestly, the craziest part of all of it, because, I don't know, I guess being told so I was going to lose my vision. It only felt the most tangible when I could see the spots, and because it felt like, literally like a danger warning. Right. Which was constant.

Rachel Katz: 

A constant.

Julia Edelman:

Which was constant, yeah. So being able to, like, open my eyes after surgery and not see floaters was really, really crazy. And on top of that, the fact that the surgeons were, like, shocked at how many floaters there were in the back of my eye, they're like, I don't know how you were functioning. So it was such a relief to hear other people be like, oh, yeah, I saw that thing that only you've been able to see for seven years. Wow. I'm not crazy.

Rachel Katz: 

That is. That's really profound to have that. Yeah.

Julia Edelman:

So that was really nice. And then on top of that, they also had to do. They had to insert glaucoma valves to just kind of control the pressure in my eyes so that the steroid doesn't make the eye pressure go too high, because that can also cause vision loss. They do about five surgeries, but it was over the course of about a year and a half because they had to do one eye and then, like, I'd have to wait, recover and do the other eye. And so it kept going back over and over. And, yeah, I mean, that experience also itself was very isolating because I was. I moved back in with my parents because I couldn't do any. Like, after the surgeries, I couldn't lift anything. I couldn't really see. After each surgery, I. I had to regain my vision slowly over a few weeks, so I needed a lot of help. So it was really nice to be taking care of my family, but it was also tough to just be, like, you know, lying in bed a lot of time or not being able to do as much as I wanted to. And then after I was eventually given the okay that my eyes were more stable, like, at that point, I was seeing a doctor every day to every week and maybe every once every two weeks. And then finally once it had gone to every three weeks, I asked if I could travel and leave New York, and they said yes. And at that point, a friend of mine was going to Bali, and so I was like, okay, it's a long shot, but I went. And, yeah, I tried to go for, like, a few weeks, and then I ended up staying there for, like, seven months.

Rachel Katz: 

Yeah, you've written about kind of that choice to leave the place where it all happened and kind of how the experiences were tied to that place. And I'm curious to hear more about that, what it meant to you to kind of get out of dodge and what that did for you and the recovery process.

Julia Edelman:

Yeah, I mean, it's really funny because in leaving, when I was leaving and when I was traveling, I remember, you know, when people ask where you're from, and I'd say, New York. And people be like, oh, New York, so cool. Like, you're gonna go back there when you go back? And I would just always say, like, I'm never gonna live in New York again. Like, I never wanted to go back because I had such horrible memories of, like, you know, just. Just non stop medical appointments and surgeries. And then when I came back from traveling, I ended up getting another diagnosis for Ms, so I had to end up staying in New York again. So that was the other thing. Like, it felt like I was always in New York against my will, you know, like, I didn't. Like, I think I. You know, I probably would have loved being there if I wasn't in surgery or if I was choosing to be there of my own accord. But because I was always there because I needed to stay there for medical treatment, it started to just feel like a prison a bit. But then, I don't know, I guess a funny thing happened where this time around, 

I guess I had to stay in New York this time to wait to get an infusion approved, and it was taking a really long time. And so again, I just kind of put off any planning for the future. And I was like, I don't know when this infusion will be improved, so I'll just stay here and embrace being here. And then I think I finally was able to enjoy it in a way of trying to see it differently. And also, turns out New York can be great when you're not in the hospital. But I'm shocked. But I don't know. I mean, it was an interesting thing when I think first navigating it, there are certain streets or areas of New York, if they're near the eye hospital, that I still won't go too because I'll just, it, it's too hard to see. But I think over time, I think we've been able to recreate new memories there and find new communities, and that's been really surprising, but really nice.

Rachel Katz: 

Wow. Yeah. Quite the return home story there.

Julia Edelman:

Yes.

Rachel Katz: 

And then I returned home changed. It's so funny how, like, similar these arcs can be. It's like, I think it's really beautiful, personally, that so many people can go through so many different crazy experiences with health, and, I don't know, this, like, this shape that it takes tends to at least echo each other. There are some similarities and some ways we can connect even when the particular illnesses are super different. Yours obviously is really unique. How would you characterize your state of mind now?

Julia Edelman:

I guess being able to more lately, I've been able to learn how to hold grief and joy together because I think so much of the time, especially, like, you know, focusing on the tiny joys, it's, I think after everything that's happened and there's been a lot of hardships. So I always think, you know, it's good to stay positive and to focus on all of the good things in my life now that I'm thankful that I'm in remission. But then sometimes I also still get really sad and there are still moments where I still feel really triggered or overwhelmed by tiny things that shouldn't get me so upset, but I think are just, you know, related to just being traumatized for ten years.

Rachel Katz: 

Like what?

Julia Edelman:

Just, like, just, like, seeing any eye doctor, like, just buying glasses, I'll just, like, burst into tears. And it's, I guess it's sometimes a reminder like, that it's okay to feel both grief and joy at the same time. And it doesn't, like, my grief doesn't negate the other because I think sometimes I just. I don't want to feel, like, ungrateful for how far I've come. But I also think it's okay to allow myself to feel these bits of grief or, I don't know, sometimes even though. And maybe it's a small. It's a small thing because now I have my vision, but, you know, from all the surgeries, like, my eyes sometimes will look, like, really red or. Or just, they have, like, still scars from the surgeries that. It's funny, no friends or family will ever say anything, but when I'm somewhere where it's, like, a total stranger, they'll be like, what happened to your eyes? To the point where I'm like, okay, so everyone, my life is just, I think, really polite. Because then when I ask friends, they're like, I promise you, no one can notice when I go somewhere and meet someone. I don't know, they're like, are you okay? And. Or. But even my own eye doctors, like, I've had eye doctors where I see them, and I'm finally so happy that my eyes are better. And, like, they'll look at my eyes and they'll be like, ugh. Like, this makes me so sad to look at. And I'm like, thanks. But also, you're offering no solutions because it's just too late from the surgeries. So I think sometimes I still feel a bit. It's like a. It's weird, I guess now it's like the. The condition isn't as invisible, but there's still the scars from afterwards that I still sometimes make me a bit sad. But it's hard to hold that with also these feelings of, like, joy for being better and to hold them side by side. So I think it's. Sometimes it's just a practice to. To be like, yeah, you can feel both those things, and that's okay.

Rachel Katz: 

I think you also run a community for people with Uveitis or you run support groups, is that right?

Julia Edelman:

Yeah. I started running a support group that. When I was really, like, a bit, like, really in the midst of treatment and that we haven't met quite as often or kind of turned into more of, like, an online group. But I'm also part of a more active support group just for more, just chronic illness in general, with about eight other people, and that one is a bit more regular. But I found that being part of both those support groups have really changed my life because for so many years, I wasn't sharing any of this with anybody. And then I've been able to find, you know, the first group of just the one with people with different chronic illnesses led me to wanting to create this group for people with Uveitis, because at first I found, like you said, like, so much, I was able to relate so much to the other people in the autoimmune groups, even though they didn't share my disease, that I. I remember thinking, like, wow, what would it be like to speak to other people that also have uveitis, even though it's harder to find? I guess sometimes with the Uveitis groups, it would feel. It feels hard sometimes for me also to. 

I guess I always have this urge to want to help and or, like, solve the issues. And when I hear of other people, because there's so many different kinds of uveitis, and I think sometimes when I'd hear everyone's different, particular issues, I'd feel kind of really helpless hearing all the different ways that people were suffering, and I had no real way to help. I had recommendations for different doctors or maybe different things that they could try, but it was almost. I actually found it was almost harder to be in a support group with people with uveitis because it felt so personal. And I felt, I guess, it was hard to not be able to find solutions for people that I knew were, like, suffering in the same way that I was.

Rachel Katz: 

Yeah, I think support groups can be so helpful, and at certain times, they can also be damaging. I mean, to have a lot of exposure to other people who are going through problems that may feel too close or too similar, but I personally have had super, super positive experiences with support groups, too. I'm curious, just because listeners might be interested how the chronic illness support group is organized, is that through an organization or how it's set up so that in case people want to replicate something like that? Can you just describe how that works a little bit?

Julia Edelman:

So, yeah, so with the UVI, this one, that one is organized through WhatsApp. So anyone could contact me if you have uveitis, and I'd be happy to add you to that group. And then with the other chronic illness, one that was actually started with. From a friend. A friend from Los Angeles actually invited me to it, and it just started as a group of friends that knew each other from Austin and then grew because they would add other friends that they. Other, like, friends that they found that also had autoimmune conditions. And so it slowly grew, and it still is pretty small, but it kind of, yeah. Started as a group of friends, and then slowly the circle widened to just because, you know, a lot of really interesting women in their twenties apparently all have chronic illnesses.

Rachel Katz: 

Well, and hence the thesis podcast. Yeah.

Julia Edelman:

Yeah. I don't know why.

Rachel Katz: 

Interesting young women with autoimmune diseases.

Julia Edelman:

Yeah, I mean, the support groups are always great. They're very entertaining. I don't know why. Chronic illness loves really fun women, but, yeah, that's the general theme.

Rachel Katz: 

Awesome. Well, if anyone listening wants to try and connect with people to do something like that, just make a shout out in the comments. It might be a good place to connect. And, I mean, there's so many more things we could talk about, but we're kind of on this theme of finding community, finding information, and just ways to relate to other people, not feeling so alone and, you know, you're a writer. I'm curious if you can talk about any other writers who. Who have influenced you or just kind of also bolstered that sense of knowledge and understanding and connection and relatability for you.

Julia Edelman:

Yeah, I mean, I. That's part of one of the reasons I really loved being on Substack. At first, I only started my newsletter because I wanted a way to share what I was going through instead of just repeatedly texting the same update to a handful of friends. And then I think after being able to share, like, through writing and be able to connect to more people, I think that's led to me being able to read so many great sub sachs and realize that there's a whole community out there. And one, I mean, I've really been loving Salika Juad's like, substack and her book between two kingdoms, I think really, I don't know, expresses. Even though she discusses her battle with leukemia, I think it covers so much of the emotional turbulence that I've felt and can relate to, and I like that. She also, on Substack, has this way for everyone to show gratitude as well every week. So I think it's. I really enjoy that. It's a way for, I don't know, other readers to join in and find that community that way. But honestly, I am always searching for more ways to connect with people in the autumn community just because it's hard, like you said, when everyone can have their own specific illnesses and they all echo the similar stories, but even if they're not exactly the same, I think there's so much to be learned from each other. And so I am always looking for a better way for. For people to connect. And so sub sac has been great for that so far, but yeah, always looking for new ones.

Rachel Katz: 

Cool. Well, thank you so much, Julia. You can find Julia's Substack at Eyewitness newsletter and we will link to that in the show notes along with the other sub stack she recommended. I really appreciate your honesty on all of these topics and your willingness to come on and share your story. I think people will find it really resonant in a lot of ways. I know I have. Well, after talking to Julia, I am definitely inspired to think about how to hold grief and joy at the same time. I love that idea and it's a little bit counterintuitive because I think it's easy to let one of those emotions push the other out instead of having both exist simultaneously. Actually, it does seem like ecstatic dance and journaling might be a great place to start holding grief and joy at the same time. In reflecting on Julia's concept of tiny joys, I think that I can learn a lot from my two and a half year old son who takes such immense joy in the littlest things today. He shrieked with joy when he saw that his favorite red striped undies were clean and available for him to wear. So I am going to work on channeling that energy today. You can find more on my substack inner workings at raekatz.substack.com. Julia's newsletter and additional recommended resources are in the show notes. See you again soon. I think my favorite thing you said was, like, that, wow, it's crazy. Autoimmune disease love. Really awesome women in their twenties.

Julia Edelman:

It's literally true. Every autoimmune, like, every woman I've ever met with an autoimmune condition is, like, so cool and interesting. I'm like, okay.

Rachel Katz: 

I also think that, I mean, this is, like, I'm obviously biased. I'm, like, interviewing people. But I think that these diseases make you more interesting, too, in that they force you to, if you have a curiosity, you know, they force you to become someone like that you may not have otherwise been and may not want to be and definitely not like, oh, thank God, I had this disease. Now I'm like this great person. But I do think they push us, like, in terms of how we think about the world, how we think about relationships and their future and goals and everything. And so I do think, like, people who, like, are inclined to think deeply and then get an autoimmune disease, like, tend to be, like, super, super, super interesting. I agree with you.

Julia Edelman:

Yeah. I mean, it's funny, like, I always. Now I always say, like, as much as, you know, I don't. I'm not happy that I have this condition, but also, if this hadn't happened to me, I don't. I think my life would honestly be a lot worse for it because I think it's also opened up my heart in ways that I think I never would have done if it hadn't been for this condition. And also, I don't know. I think it's made me learn how to lean on people and be more vulnerable in a way that I think I would have kept to myself a lot more if I didn't, like, literally need help and was forced to ask for it. And that was part of when I got the second diagnosis for Ms, I was like, my first thought was like, maybe I always am trying to find, like, a reason for something, but my first thought was like, okay, what is the universe trying to tell me with the second diagnosis? And a part of me was like, I think it's just helping me deepen my practice and learning how to reach out to people and listen to my body, and that's just, like, the journey that I'm on.