บทถอดความฉบับเต็มของ What Changes When You Understand Eczema

all of these spots and things. So I was very self-conscious. being on a stage and then trying to put makeup, especially around my eyes, which is where I had a lot of it, trying to get my makeup to stay. It would be cakey, it would be flaky. So it just became a nuisance and very, very self-conscious of it. 00:07:07 Speaker 2: Yeah, of course. 00:07:08 Speaker 1: All I want to do is look better and feel better for my job. Right. I ended up going to this onshore dermatologist and And I remember her saying, I know exactly what you need. She was very reassuring. And she ended up throwing like the kitchen sink at me. I had a topical steroid. I had a kind of immunosuppressant ointment given to me. I was given, I believe, an antibiotic oral, an antifungal oral, and I think an anti-itch pill. Whoa. It was so many things. 00:07:44 Speaker 2: These are all at the same time. 00:07:45 Speaker 1: All at the same time. And then I was told to use a cooking lard as like an emollient on my skin. 00:07:51 Speaker 2: And then from kitchen sink prescribed to you, you go back to the cruise ship. Yes. Was this helping at all? 00:07:58 Speaker 1: Oh, it helped tremendously. I finish out that kitchen sink and I go to my second contract for this cruise ship company. Yeah. Then my skin kicks off again. And it's even in more different places. So then I get put back on the kitchen sink and I stay on that for a bit longer. And once my third cruise ship hits, I didn't really stop that kitchen sink. And they even tried to put me on an immunosuppressive drug because I just couldn't get my skin to calm down. I loved what I was doing, but it was really deteriorating my health. And at that time, I was also getting married. 00:08:38 Speaker 2: Whoa. Oh. A lot is happening in life. 00:08:42 Speaker 1: A lot is happening. 00:08:43 Speaker 2: Yeah. 00:08:46 Speaker 1: Once I had gotten married, this is September of 2014, my skin just seemed really upset at everything. It became a central focal point of how I managed everyday life. What could I wear? Could I go in the pool? All these things I never used to have to think about before is now at the forefront of every decision plan that I have to make. 00:09:12 Speaker 2: And so now after the three contracts, you decide to not go back to the cruise ship. It obviously sounds like such a dreamy job. How did it feel to leave? I mean, I imagine that wasn't easy or fun. 00:09:25 Speaker 1: No, it was horrible. I'm a very positive person. And so I just thought, oh, I'll be able to find a job like this on land. I would do auditions for other places so that I could be in a more controlled environment. like be at my home and things like that instead of on a cruise ship. But it was very difficult to leave because, you know, my partner was also on the cruise ship. That's what he did for his job. And so for him to have to find another job as well with me, it was just a lot I felt like I was having to take a back seat kind of and let my skin take the wheel and it just it's never nice like I had finally gotten to somewhere I had wanted to be and I felt like I wasn't making the decision my skin was making that decision Yeah. 00:10:20 Speaker 2: It's a mind warp when that happens. How were you healing your skin in this time, in this time that you say it got quite bad? 00:10:27 Speaker 1: I was still on the concoction, like the kitchen sink. 00:10:31 Speaker 2: Gotcha. 00:10:31 Speaker 1: And it got ramped up to the point where the dermatologist wanted me to try a stronger steroid. And that's when I remember my mother just kind of being really iffy about me taking all of this stuff for such a long time. 00:10:45 Speaker 2: Yeah. 00:10:46 Speaker 1: And I I agreed with her. So what we were going to do is I was going to take a break. And that's when things got really wild. It spread all over my back. My pelvis region was getting really red. My eyes got really puffy and red. My wrist area. I remember us thinking, am I allergic to something? Like what happened? And so from that September, 2014 to December 2014, it was a conundrum of trying to figure out what was happening while I was also trying to be certified as a personal trainer, trying to sign a new apartment that we were going to move into. I remember just feeling so ill. I had to call off teaching a couple dance classes at the new city that we were going to be moving to and kind of Googling these symptoms, which is Which is when something called Red Skin Syndrome and topical steroid withdrawal had popped up. So my partner and I had moved in to our new apartment January 25th of 2015, and that was the last time I touched a steroid. 00:12:00 Speaker 2: If you feel comfortable, I know this is not fun to relive, but what were your symptoms when they were at their worst? 00:12:08 Speaker 1: It was red from head to toe. I had very burning skin, very bone deep itch. Like you could just claw at yourself and pray that you reach bone. I couldn't sleep. I had horrible insomnia. I had oozing. Like it's just like this like plasma. And to me, it smells like wet dog. Like it's so disgusting. And it was coming out of my ears. It was coming out of like- Everywhere. Just everywhere, honestly. And- I was sticking to things. Um, I had thermal dysregulation, so I would feel very cold and lots of, you know, I'd be in a blanket, but I'd be emanating heat. Um, I lost my hair. So I, I documented myself shaving my head because I had lost so much hair. Like I didn't have a hairline, like just, it was all back here. Hair was everywhere. Um, and I was shedding profusely. Like I even started collecting my skin that was shedding. I had it in a glass jar because I was like, this is wild. I started taking photos and things and I put up a blog. I think after about a month and a half or two months, I was petrified. I was so scared to even tell people in my life that I was going through this because I was embarrassed. I was so embarrassed. You know, we use a steroid to cover our

eczema because we don't want the world to see it. And now I'm just head to toe like a tomato. So yeah, it was really hard to kind of make that decision of not only am I going to document it, but I'm going to share it. 00:13:44 Speaker 2: And God, I can only imagine that this like severely affects relationships in your life. 00:13:49 Speaker 1: I wasn't social anymore. 00:13:51 Speaker 2: Yeah, of course. 00:13:54 Speaker 1: Couldn't function, you know, very gregarious person used to be out and about. I was kind of stuck at home. 00:14:02 Speaker 2: Yeah. 00:14:03 Speaker 1: More so because I was like a zoo animal. So it was really hard just being out in the world. And then when it came to my partner, intimacy was completely off the table. 00:14:13 Speaker 2: Of course. 00:14:14 Speaker 1: And we were so affectionate. And to go from that to nothing was really difficult. 00:14:30 Speaker 2: So, I mean, this sounds like a truly, truly hellish time. How were you able to get support? 00:14:39 Speaker 1: I mean, I can say I feel very lucky in the sense that my family They believed in what I was going through because when I went to a dermatologist nearby, they did not have any words on... Redskin syndrome, topical steroid withdrawal. This is back in 2015 when this was barely spoken about. So looking back on it, I can understand then maybe the pushback of it, but there was just no sympathy towards it. So I just really had my partner at the time. I had my family who didn't live near me. My mother would drive up sometimes. And then I had a friend or two that would visit every so often, which is kind of, Yeah. Yeah. 00:15:49 Speaker 2: How did that eventually lead to the idea for your documentary? 00:15:53 Speaker 1: I just kept hearing that this is rare and that people are being told they're one-offs. And a part of me was getting very annoyed with this narrative happening. And so I remember being on a call one day and I remember just throwing it out there going, what would happen if a documentary was made where multiple stories were brought together? 00:16:16 Speaker 2: Yeah. 00:16:17 Speaker 1: And of course, they were like, yeah, that'd be fabulous. That'd be great. And then when parts of my life after about a year started to fall apart, I started to cling on to the documentary and the process of making it as a lifeline for myself. 00:16:33 Speaker 2: Only in as many details as you're comfortable sharing. What do you mean when you say your life started to fall apart? 00:16:39 Speaker 1: I had already lost my job. So my career was basically in the trash. 00:16:43 Speaker 2: You were no longer dancing. 00:16:44 Speaker 1: No longer dancing. I could barely move. And no one could tell me when this was going to be over. And I had hoped by a year I'd be better, and I was nowhere near better. And it started to wreak havoc on my marriage. Within that two years of us being married and me starting this journey through withdrawal, we ended up getting divorced. And

I had lost what I felt was my path, my identity, my independence. I was living with my mother in her guest room. I'm having her cook and stuff for me. It was so life altering. And the only thing I could think of doing was putting every single ounce of energy into this film. 00:17:34 Speaker 2: Now, what happened after you released the film? 00:17:39 Speaker 1: I had an in, like there's a flood of messages, but I will never forget the one that completely threw me, which was the National Eczema Association president wrote me an email and she was like, the Eczema Association would like to endorse it. 00:17:58 Speaker 2: It's incredible. 00:17:58 Speaker 1: That blew my mind. That blew my mind because of the work that I had put into wanting to ensure that That anything I put into that documentary was backed by evidence, was backed by science, research, to have patient voices as well as like championing dermatology voices. 00:18:18 Speaker 2: That's so cool. Congratulations on that. I mean, that truly deserves like real acknowledgement of how cool it is that you were able to turn this into something new. that is acknowledged by like the head of this huge organization and is a healing balm for people. That's really cool. So how are you managing your health then? And how did you kind of manage your health for the next few years? 00:18:49 Speaker 1: Still unwell. I was a bit better, but I was still very much trying to figure out now, what do I do about my health? How do I move forward? How do I integrate myself back into the world and those kind of things? So after that, I really tried to just get back into what I considered normal life. And I was a dance and theater teacher by that time. 00:19:10 Speaker 2: You were healthy enough to be able to do that. 00:19:13 Speaker 1: Yeah. And I say healthy enough. It was a challenge. I mean, I would wake up some days with like things stuck to my face and I just had to like get on with it. I remember I tried stem cell therapy. Like I really had an injection. I paid thousands of dollars for that. I tried traditional Chinese medicine for about five to six months, but then it was eating away at my bank account. I tried a few different naturopaths and registered nutritionists. So by the time 2022 hit, I was in a real state of like... I think I was almost seven years into this withdrawal process. And I think I was just mentally... done. I was having a really, really hard time just continuing to push through, trying to use alternative methods that I finally took a risk on myself. I quit my job. It was just taking way too much of my energy that I think I needed to put back into my health. And I decided to go on a biologic drug, which changed my life for a year. And within that year, I applied for film school here in Scotland, and I began shooting my second documentary on this. 00:20:32 Speaker 2: So considering your journey with steroids, it must have been a little spooky to go back to a medication. How did that feel? 00:20:43 Speaker 1: I mean, in all honesty, not only did it feel scary because I wasn't sure if it would help or not, but back then, and it's very much a changed mindset from then to now, was I felt this responsibility to the community to not go back on a drug. And I kind of realized you live your life for you. You got to do what you need to do. And it's no one else's business how you're going to deal or manage your health, especially if you're Sanity is tanking. 00:21:14 Speaker 2: Yeah. 00:21:14 Speaker 1: Um, so I, I was nervous about it for that multitude of reasons. Um, but I, I weighed the cost, you know, and the benefit of it and the benefit just outweighed for me. Cause I was like, my body needs a break. 00:21:31 Speaker 2: Like the way it. 00:21:32 Speaker 1: Is, I am functioning now cannot be healthy. 00:21:35 Speaker 2: Right. 00:21:35 Speaker 1: So why not just try this? Cause I can always stop taking it if I, if I needed. Right. 00:21:44 Speaker 2: So you've been through this whole journey with eczema. Where is your eczema today and how is it affecting your life? 00:21:51 Speaker 1: Right now, I'm in a very good place. I'm on an immunosuppressive drug. I'm able to go out, live life, eat certain foods, be out in environments that might have triggered my skin beforehand. I love to be active. I'm in the gym. I'm running. I will be starting a PhD next year. 00:22:12 Speaker 2: Whoa. 00:22:13 Speaker 1: On like topical steroid withdrawal and the psychosocial burden of it. So it's really nice to like keep going. 00:22:20 Speaker 2: Yeah. 00:22:21 Speaker 1: In this journey. 00:22:22 Speaker 2: Of course. Brianna, that's so cool. 00:22:24 Speaker 1: I'm dating again. And I find my skin does... Does tell me who I can and can't date. This isn't going to sound crazy, but I'm allergic to certain people. 00:22:37 Speaker 2: Oh. 00:22:38 Speaker 1: Yeah. 00:22:38 Speaker 2: Okay. 00:22:39 Speaker 1: If I end up kissing someone, my body will tell me if it likes it or not. 00:22:44 Speaker 2: Oh my God. 00:22:45 Speaker 1: Yeah. 00:22:45 Speaker 2: It's almost, that sounds so helpful to me because I think we're all like somewhat allergic to some people. And this feels like your body being like, no, no, we're going to make it clear. 00:22:56 Speaker 1: Sometimes it could be a tiny swollen eye with some swollen lips. Or it could be two swollen eyes, swollen neck, rash. Yeah, it's really wild. 00:23:05 Speaker 2: You literally get allergic reactions to people. 00:23:09 Speaker 1: My body will talk. She will tell me. She will tell me. 00:23:12 Speaker 2: Oh, my God. The body really does keep the score. 00:23:16 Speaker 1: Wow. 00:23:18 Speaker 2: So what does healing mean for you now? 00:23:22 Speaker 1: I think it has a lot to do with accepting that power. of how we are going to respond to the things that happen to us. And so healing is a verb. And so I think for me, it's just finding that headspace of like, okay, not everything that happens to me is in my control, but I have control over how I'm going to respond to it. And accepting where that is doesn't mean I have to tolerate it, but I think healing has to do with accepting where you are and and creating a space for yourself to respond to it in a way that feels grounded in a way that feels right for you whether that's expressing needs having boundaries those kinds of things i love. 00:24:03 Speaker 2: That and that is such a perfect note to end on um brianna thanks so much for hanging out with me today it was such a pleasure to talk to you. 00:24:12 Speaker 1: No you've been wonderful oh thanks. 00:24:17 Speaker 2: Thank you so much for being with us for Brianna's story and for joining us throughout this whole season of Skin Queries. We've heard a lot about what can change when an experience is finally given the attention, language, and understanding it deserves. That understanding may not make healing straightforward, but it can help us make choices that feel right for where we are now. So until we meet again, may we trust what our bodies are telling us, advocate for what we need, and give ourselves the grace to heal in whatever direction healing takes us. Skin Queries is a production of Ruby Studio from iHeartMedia. Our producer is Reem El-Meghabi, project lead is Maria St. Abung, and sound designer is Sam Seguet. I'm Dylan Maron. We will see you next time.