Latest / Skinquiries / The Everyday Work of Living With Eczema

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The Everyday Work of Living With Eczema · Skinquiries

0:01
Speaker 1: I thought I looked so cute. I pieced together a
0:03
Speaker 1: cute outfit.
0:04
Speaker 2: And this girl comes up to me, just sits next
0:07
Speaker 2: to me, telling me, oh, hey girl, I see your skin.
0:11
Speaker 2: I know what you're suffering with. I just remember feeling
0:14
Speaker 2: so just like distraught and.
0:17
Speaker 1: Like robbed of my time.
0:19
Speaker 2: When I finally freed myself of that conversation, the lights
0:22
Speaker 2: were coming on and the party was over, it felt
0:25
Speaker 2: like I had a sticker on my forehead that said
0:28
Speaker 2: she has X month.
0:30
Speaker 3: We've all been there, wanting to go out feeling cute,
0:34
Speaker 3: forgetting about all your problems and just existing in the
0:38
Speaker 3: present with joy. But when you live with a visible
0:41
Speaker 3: skin condition, that can be a lot harder than it
0:44
Speaker 3: needs to be. Hello, everyone, welcome or welcome back to
0:51
Speaker 3: the second season of Skin Quarries. This is a show
0:54
Speaker 3: about skin, but it's really a show about people because
0:58
Speaker 3: skin health doesn't exist in a vat. It's personal, sure,
1:02
Speaker 3: but it's also out in the world with us. Our
1:05
Speaker 3: skin is the first thing people notice when we enter
1:07
Speaker 3: a room, and it can invite concern and judgment and
1:11
Speaker 3: assumptions and yes, sometimes even silence. I'm your host, Dylan Maren.
1:17
Speaker 3: I am a writer and producer, and a lot of
1:20
Speaker 3: my work, including my other podcast, Conversations with People Who
1:23
Speaker 3: Hate Me, has been about what happens when people think
1:26
Speaker 3: they understand you before they know you, when they see
1:29
Speaker 3: one part of you and mistake it for the whole story.
1:32
Speaker 3: So this season on Skin Querries, we are exploring the
1:36
Speaker 3: story's skin can carry. We're talking about the visible parts
1:39
Speaker 3: that we try so hard to hide, the questions people ask,
1:43
Speaker 3: and the ways that all of those things can shape
1:46
Speaker 3: our confidence, identity, community, and care. Today we're talking about
1:58
Speaker 3: what happens when you're skin and is visible, but your
2:01
Speaker 3: full experience may not be. My guest today is Cynthia Korfa.
2:05
Speaker 3: She's a freelance journalist, EXEMA advocate, and the community builder
2:09
Speaker 3: behind Black Girls with Exema. Cynthia, Hi, it's really nice
2:13
Speaker 3: to meet you.
2:14
Speaker 1: Nice to meet you too. Yeah.
2:18
Speaker 3: Cynthia has always lived with exemma, but over time it
2:21
Speaker 3: became something that affected much more than her skin. It
2:25
Speaker 3: changed how she got ready, it changed how she moved
2:28
Speaker 3: through social spaces and how she understood the need for community.
2:32
Speaker 3: So her story is, yes, obviously about EXEMA, but.
2:36
Speaker 1: It's also about recognition.
2:38
Speaker 3: It's about feeling isolated in your experiences and trying to
2:41
Speaker 3: find people who understand what you're going through without having
2:45
Speaker 3: to explain every single piece of it. And let's be real,
2:49
Speaker 3: we've all been there. It's also about the magic that
2:52
Speaker 3: can come from building the kind of space you once
2:55
Speaker 3: needed for yourself and what changes when you finally feel
3:00
Speaker 3: Before we really get into it, let's go back to
3:03
Speaker 3: the start when exema first entered Cynthia's life.
3:08
Speaker 1: I think I entered my life with exzema.
3:12
Speaker 2: I was born with it, and my mom tells me
3:16
Speaker 2: stories of having to put socks on my hands to
3:20
Speaker 2: prevent me from scratching because there would be like blood
3:24
Speaker 2: on the sheets of my crib. I'm an army brat
3:26
Speaker 2: as well, so I've moved quite a bit, and every
3:30
Speaker 2: time I was moving, I was moving to a different
3:32
Speaker 2: climate and that impacted my skin differently. So I was
3:36
Speaker 2: born in DC and then went to Colorado Springs, and
3:41
Speaker 2: Colorado's known for dry air, mountain water. You know that
3:45
Speaker 2: very honestly, probably the best scenario for my skin at
3:49
Speaker 2: that time. It was like, you know, typical rashes in
3:51
Speaker 2: the common areas such as your arms, maybe my neck,
3:54
Speaker 2: behind my knees and then we got stationed back to
3:58
Speaker 2: Maryland and cherry blossoms, allergens, things like that were happening
4:03
Speaker 2: and so making my skin itch. Then we got station
4:06
Speaker 2: to Louisiana, which is the swamps and superhuman, super hot
4:12
Speaker 2: and just not supportive of my skin at all. And
4:16
Speaker 2: I recently got a new allergy test done, and every
4:19
Speaker 2: time the doctors open up my chart, they're just like wow.
4:23
Speaker 1: Like you are a bubble girl.
4:24
Speaker 2: Like you really should just like live in a bubble
4:27
Speaker 2: because I'm allergic to every single tree that we have
4:30
Speaker 2: here in Louisiana.
4:32
Speaker 1: So it's really challenging.
4:34
Speaker 2: But I live and love New Orleans right now, Unfortunately
4:37
Speaker 2: it's just not the best for my skin.
4:39
Speaker 3: We contain multitudes. We can love a city and understand
4:42
Speaker 3: it might not be the best for our skin. I
4:45
Speaker 3: love you as Bubble Girl because I feel like that's
4:48
Speaker 3: now a movie we should spin off from the Jake
4:52
Speaker 3: Jillenhall Bubble Boy into Cynthia's Bubble Girl. Yes, we're pitching
4:57
Speaker 3: that right after this call. I love it, Okay, So
5:01
Speaker 3: talk to me about being in your twenties in college
5:05
Speaker 3: in Louisiana and about that moment when exzema became such
5:10
Speaker 3: a big deal you couldn't miss it in your life.
5:13
Speaker 1: So essentially I went to LSU.
5:16
Speaker 2: So everyone else is like frolicking and living their life
5:18
Speaker 2: in college. Meanwhile I'm like scratching showing up to class
5:23
Speaker 2: with you.
5:23
Speaker 1: Know, itchy eyes.
5:24
Speaker 2: And it felt like this thing that was like slowly
5:28
Speaker 2: creeping up for me. I think it was around my
5:32
Speaker 2: twenty fourth birthday. It was my golden birthday. I went
5:36
Speaker 2: to Puerto Rico. I'm a big birthday girl, so.
5:38
Speaker 3: I'm insane, man, I join you in the birthday girl experience,
5:42
Speaker 3: so I support it.
5:43
Speaker 1: Yeah.
5:43
Speaker 2: Yeah, So I went to Puerto Rico and I was like,
5:47
Speaker 2: I want to wear a bathing suit.
5:48
Speaker 1: I'm trying to live my best life.
5:51
Speaker 2: And the whole time, you know, I was just so
5:53
Speaker 2: self conscious about my exma at the same time. That
5:58
Speaker 2: year was a year I just to stop using topical steroids,
6:03
Speaker 2: and the rashes were growing, like it was getting bigger,
6:07
Speaker 2: it was becoming just it was just taking over my
6:10
Speaker 2: whole body. And I was starting to learn more about
6:13
Speaker 2: TSW topical steroid WATRAL because of people on Instagram who
6:18
Speaker 2: are sharing about their story, and so I was like, Okay,
6:20
Speaker 2: maybe I could heal naturally, I'll be fine, maybe in
6:23
Speaker 2: a couple months, maybe a year or so. I could
6:25
Speaker 2: just suffer for a short amount of time. But that
6:29
Speaker 2: short amount of time did not end up short at all.
6:32
Speaker 2: I mean, it was truly a nightmare. I couldn't go
6:35
Speaker 2: to sleep without weeping through my clothes.
6:39
Speaker 1: I would wake up just like my face like crust
6:41
Speaker 1: it over.
6:42
Speaker 2: Sometimes my eyelids crusted shut, like literally having to separate
6:47
Speaker 2: my shirt from my body because it had stuck to it.
6:50
Speaker 2: You know, while I was sleeping, I lost the ability
6:53
Speaker 2: to grow hair. So like my eyebrows stopped growing. I noticed,
6:57
Speaker 2: like even some of my body hair stop growing. I
7:00
Speaker 2: could not recognize myself in the mirror. I could not
7:03
Speaker 2: recognize myself in photos. It was like whack a mole.
7:07
Speaker 2: It was like what am I going to experience next?
7:10
Speaker 3: So you're kind of trapped, right, You're like, you're between
7:14
Speaker 3: the steroid, which does help but could potentially have consequences,
7:20
Speaker 3: and then you try to go the natural route and
7:22
Speaker 3: that doesn't really help either. Talk to me about the
7:25
Speaker 3: day to day living with exema. Between I was going
7:29
Speaker 3: to say, between these two options, between these two lack
7:32
Speaker 3: of options.
7:33
Speaker 2: Yeah, I mean I was doing everything, like I'm wrapping
7:36
Speaker 2: myself in gauze to try to soak up some of
7:40
Speaker 2: that weeping, trying every natural thing I could, but it
7:44
Speaker 2: was starting to feel like obsessive, and it felt like
7:46
Speaker 2: I couldn't even like think or do anything. I went
7:50
Speaker 2: from being this person who loves I love taking photos.
7:55
Speaker 2: I'm also a journalist and a social media influencer, and
7:59
Speaker 2: so being this and being seen were all parts of
8:02
Speaker 2: my platform and my identity, and so to not be
8:07
Speaker 2: able to feel like comfortable to do that was extremely hard.
8:11
Speaker 2: Like it just felt like I was the shell of
8:13
Speaker 2: a person and it felt like I just wanted to hide.
8:16
Speaker 2: Like being touched, you know, was something that was very hard.
8:21
Speaker 2: Like I even now like I'm like when people like
8:23
Speaker 2: touch my hand, I kind of like flinch a little bit,
8:25
Speaker 2: you know, because I'm just like, oh, I don't want
8:27
Speaker 2: them to feel.
8:27
Speaker 1: My skin and the texture and everything.
8:30
Speaker 2: I was really only able to hang out with people
8:32
Speaker 2: who felt safe, and so it's like I could either
8:35
Speaker 2: sit here, be depressed and my baggy clothes and my
8:38
Speaker 2: weepy skin, and you know, sit and suffer and silence
8:42
Speaker 2: and no one will ever know, and I'll just roll
8:45
Speaker 2: over and die, you know, for lack of better words.
8:48
Speaker 2: But I'm a natural optimist. I gravitate towards joy. I
8:53
Speaker 2: just could not stay bogged down for much longer. Basically,
8:56
Speaker 2: that like cloud of depression, I kind of like burst
9:00
Speaker 2: through it and was like, through this, I'm going to
9:02
Speaker 2: like do something about this. I just refused to let
9:06
Speaker 2: my condition keep me from living and thriving. And so
9:10
Speaker 2: that's what led me to just bursting out of my
9:12
Speaker 2: bubble and healing out loud instead of suffering in silence.
9:16
Speaker 3: Okay, I love that healing out loud. That is okay,
9:20
Speaker 3: maybe we have a title. Thank you for sharing? How
9:23
Speaker 3: it affected like self image? How is it affecting your
9:27
Speaker 3: social life?
9:29
Speaker 2: So the first story that comes to mind is when
9:32
Speaker 2: I first started dating my now fiance. We went to
9:36
Speaker 2: this party, you know again New Orleans has amazing DJ.
9:40
Speaker 1: It's an amazing night live scene. And I tied.
9:43
Speaker 2: This little cute, little silk scarf as a top and
9:46
Speaker 2: had like my back out and some little silver pants,
9:49
Speaker 2: and I.
9:49
Speaker 1: Was just feeling myself. I thought it looked so cute.
9:52
Speaker 1: I pieced together a cute outfit and we're dancing.
9:55
Speaker 2: We're having a good time, and I think we honestly,
9:59
Speaker 2: we had barely just got there.
10:00
Speaker 1: I think we were late, and so we.
10:01
Speaker 2: Had just stepped outside and this girl comes up to me,
10:06
Speaker 2: just sits next to me, telling me, oh, hey, girl,
10:09
Speaker 2: I see your skin.
10:10
Speaker 1: I know what you're suffering with.
10:12
Speaker 2: And proceeds to talk to me for like a half
10:15
Speaker 2: an hour, about maybe to an hour.
10:18
Speaker 1: I don't even know it was so long.
10:20
Speaker 2: I just remember like feeling like I got stuck in
10:22
Speaker 2: a time warp and she's just telling me what I
10:24
Speaker 2: should be doing, you know what's wrong with my skin.
10:27
Speaker 1: Blah blah blah blah blah blah blah blah blah.
10:31
Speaker 2: And I just remember feeling so distraught and like robbed
10:36
Speaker 2: of my time, and like, I kid you not, when
10:39
Speaker 2: she finally, like when I finally freed myself of that conversation,
10:43
Speaker 2: the lights were coming on and the party was over.
10:46
Speaker 3: That is criminal. A crime was committed, A crime was committed.
10:50
Speaker 2: It really was like I felt so like what I
10:53
Speaker 2: tell you, I was so angry because yes, she really
10:57
Speaker 2: stole my joy. I genuinely came there with the mind
11:01
Speaker 2: of dancing, feeling good, looking good, not being bothered by
11:05
Speaker 2: anything or my condition I was like, for once I
11:08
Speaker 2: could just put this condition on a shelf and not
11:11
Speaker 2: think about it.
11:12
Speaker 1: And it felt like I had.
11:13
Speaker 2: A sticker on my forehead that said she has EXMA,
11:16
Speaker 2: she is going through TSW talk to her.
11:19
Speaker 3: Yeah, that's it's so interesting too, because it's always helpful
11:23
Speaker 3: to learn the line between care and boundary crossing, because
11:29
Speaker 3: not to build empathy for this woman, but I can
11:33
Speaker 3: imagine that she actually didn't think she was causing you harm.
11:36
Speaker 3: I think she probably thought that she was like helping. Yeah,
11:41
Speaker 3: how do you define that boundary for the people who
11:45
Speaker 3: care and want to help and might be a little
11:48
Speaker 3: misguided in how to provide that care and help.
11:52
Speaker 1: It is really really sticky, you know.
11:55
Speaker 2: I am in the EXMA community now, this is a
11:59
Speaker 2: big part of my life life, and so when I
12:01
Speaker 2: see people out with EXMA out and about, I'm like, oh, look,
12:04
Speaker 2: I get excited and I want to be like, you know,
12:06
Speaker 2: especially like if it's a black woman with.
12:09
Speaker 1: Like you know, and I just want to like connect
12:11
Speaker 1: with them.
12:12
Speaker 2: And then I have to stop myself and I think
12:14
Speaker 2: about how I felt when people have come to me
12:17
Speaker 2: and you're just having a good day and you're thinking,
12:18
Speaker 2: no one sees no one knows and and then you
12:21
Speaker 2: then they clock you, you know, and it's just like
12:23
Speaker 2: so embarrassing. I would say, the one thing if you
12:27
Speaker 2: are trying to approach someone and show them care about
12:31
Speaker 2: their condition, the one thing that's going to give you
12:34
Speaker 2: credibility is if you have the condition.
12:36
Speaker 1: Like so I'm like, you know, like it's like, first
12:38
Speaker 1: of all.
12:39
Speaker 3: I have read about exzema, and therefore I am empowered
12:42
Speaker 3: to tell you about it.
12:43
Speaker 1: Yeah, exactly, exactly.
12:45
Speaker 2: Not that it's a really thin line, honestly, but I
12:49
Speaker 2: would just say approach it with care and only if
12:51
Speaker 2: you really have something to offer genuinely, because I can't
12:55
Speaker 2: tell you how many times I receive a DM of
12:58
Speaker 2: someone who claims to have the cure to my exema.
13:01
Speaker 3: And that's hard, and that's hard.
13:04
Speaker 1: Yeah.
13:05
Speaker 3: So, okay, I want to set up a hypothetical for you.
13:08
Speaker 3: Let's set the scene. You have an invitation to a party.
13:13
Speaker 3: It is tonight. You want to go to this party.
13:16
Speaker 3: It's going to be a mix of friends, acquaintances, total strangers,
13:20
Speaker 3: strangers you're excited to meet. What is your prep to
13:24
Speaker 3: go to this party? What are you doing at home
13:28
Speaker 3: before you go?
13:29
Speaker 1: Yes?
13:30
Speaker 2: So, for me to feel ready and like my skin
13:33
Speaker 2: is like sealed clean, moisturized. I'm going to take a bath.
13:37
Speaker 2: I'm a big bath girly. I know, as exema girlies,
13:40
Speaker 2: we're not supposed to take hot baths, but I'm working
13:44
Speaker 2: on it so we can allow ourselves all sorts of
13:48
Speaker 2: things in this life.
13:49
Speaker 1: Life is short. You deserve hot paths.
13:52
Speaker 3: Thank you coming into You're welcome. That's all I'm here
13:55
Speaker 3: to do. I've got a log off now, I just
13:57
Speaker 3: wanted to give you permission.
14:00
Speaker 1: Okay, So post.
14:01
Speaker 2: Bath, post bath, immediate moisturizing, and then I'll put on
14:06
Speaker 2: like an ointment on top to like really seal it in. Yeah,
14:10
Speaker 2: we're doing like a sensitive skin makeup routine.
14:14
Speaker 1: And then the hardest part.
14:16
Speaker 2: I would say is picking the outfit, because we all
14:20
Speaker 2: struggle with picking that out Yeah, come on, then you
14:23
Speaker 2: have exma, full body ezma trying to pick an outfit
14:27
Speaker 2: that's a whole another beast. And so really my outfits
14:30
Speaker 2: are dependent on my skin condition. Like at that day,
14:35
Speaker 2: I'm five ten about long legs and unfortunately these long
14:39
Speaker 2: legs are covered in eczema, and so usually I'm going
14:44
Speaker 2: to aim for pants or just something that's going.
14:47
Speaker 1: To cover up a little bit.
14:49
Speaker 3: But is it just the cut that you're thinking about
14:51
Speaker 3: or is it also fabric and airiness?
14:55
Speaker 2: And thousand percent definitely it's about the fabric.
14:59
Speaker 1: I love fashion and I love clothes.
15:01
Speaker 2: Unfortunately though nowadays they're making everything out of polyester and
15:05
Speaker 2: those can be very irritating and have less breathability, so
15:09
Speaker 2: I do try to think about that as well. Like
15:11
Speaker 2: the other day was my skin was just in shambles
15:13
Speaker 2: and I was like cotton only. So I'm definitely always
15:16
Speaker 2: looking for first coverage and then breathability and then itchiness
15:23
Speaker 2: as well. Like sometimes a certain fabric one day it'll
15:26
Speaker 2: be fine and then the next it'll like just make
15:29
Speaker 2: me so irritated.
15:30
Speaker 1: So it really depends day by day.
15:33
Speaker 3: So thank you so much for sharing the physical prep.
15:36
Speaker 3: What are you doing to emotionally prepare to go to
15:39
Speaker 3: this party?
15:40
Speaker 2: Lots of podcasts, Lots of lots of podcasts.
15:45
Speaker 1: I love that. Yes, I listen to.
15:47
Speaker 2: I mean really, just as many things as I can
15:50
Speaker 2: consume that are gonna like fuel my cup and like
15:53
Speaker 2: assure me like I'm good as is, I can show
15:57
Speaker 2: up just as I am, and my life it's going
16:00
Speaker 2: to shine through regardless and even some little mantra music
16:04
Speaker 2: like I just.
16:05
Speaker 1: Go super wellness, super woo woo.
16:08
Speaker 2: I'm just trying to like armor myself to go out
16:10
Speaker 2: to fight the world.
16:11
Speaker 3: I get it and I support it. Okay, So that
16:16
Speaker 3: is that is the before the party. Now I want
16:18
Speaker 3: to tell you about this party. You had a great time.
16:21
Speaker 3: There was no woman that cornered you. You had the
16:24
Speaker 3: time of your life. And even still, what is the aftercare?
16:29
Speaker 3: What do you do when you get home?
16:30
Speaker 2: Strip it all off, take it off, like there's nothing
16:34
Speaker 2: better than like, yeah, oh, masking, so yeah, immediately coming home,
16:40
Speaker 2: putting his bonnet on, covering up all this hair, Okay,
16:43
Speaker 2: washing this makeup off, putting on like a deep you know,
16:48
Speaker 2: moisturizer or something a little bit more thick and penetrating,
16:51
Speaker 2: because just in case, I like stripped my face of
16:54
Speaker 2: a bunch of moisturizer after the makeup and the cleansing.
16:57
Speaker 2: So just like I look like a glazed donut typically
17:00
Speaker 2: when I get home, iconic.
17:02
Speaker 1: Yeah, who doesn't want to look like a glazed donut?
17:04
Speaker 1: That's incredible.
17:06
Speaker 2: I love it so and then yes, the most comfortable
17:10
Speaker 2: clothes I can find, you know, nothing cute, baggy old
17:14
Speaker 2: T shirts, cotton, cotton pajamas.
17:17
Speaker 1: I would argue that's cute.
17:18
Speaker 3: I would argue, cotton cozy is a cute look. And
17:22
Speaker 3: I say that hoping that when I am rotting on
17:24
Speaker 3: my couch, I am turning.
17:26
Speaker 1: A cute look. So, yes, you're right, You're right, Yeah, Okay.
17:29
Speaker 1: I love that. I love that.
17:34
Speaker 3: It is clear that you and everyone dealing with egzema
17:40
Speaker 3: is dealing with a lot. There's like a lot of
17:42
Speaker 3: social considerations, a lot of emotional considerations, a lot of
17:47
Speaker 3: mass that you need to be doing to know how
17:50
Speaker 3: to even exist in the world. But there is another
17:54
Speaker 3: layer that you are dealing with specifically, which is the
17:58
Speaker 3: fact that you are dealing with this as a black woman.
18:01
Speaker 3: And one of the many things that make this different
18:05
Speaker 3: for you is that documentation of skin conditions. It's often
18:11
Speaker 3: typically documented in lighter skin tones. So would you mind
18:15
Speaker 3: sharing with me a little about how exema affects you
18:18
Speaker 3: specifically as a black woman.
18:21
Speaker 1: Definitely, it is so complex.
18:24
Speaker 2: There's just so many little nuanced things that I feel
18:28
Speaker 2: like differentiate a black woman's experience with EXMA versus another person.
18:35
Speaker 2: For instance, the hyper pigmentation, so the skin color change.
18:40
Speaker 2: So like whereas EXMA, on a white person might appear
18:45
Speaker 2: red and pink, and you know, everyone could visibly tell, oh,
18:49
Speaker 2: that's exsma. Oh they're having a rash or something like that,
18:52
Speaker 2: whereas on me it might appear like I just have
18:55
Speaker 2: like a darker skin tone. People who don't know me,
18:58
Speaker 2: they might just think, oh, she's got you know, darker
19:00
Speaker 2: skin or whatever. It might be, not knowing that this
19:04
Speaker 2: is my skin and it's inflame state and that this
19:06
Speaker 2: is hyper pigmentation.
19:08
Speaker 1: It also as far as.
19:10
Speaker 2: Like the social aspect, like I feel like culturally, you know,
19:14
Speaker 2: black people, black women, we want to be moisturized. We
19:17
Speaker 2: are We've got this melanated, gorgeous skin. We historically have
19:22
Speaker 2: kept our skin moisturized with butters, oils and all these things,
19:26
Speaker 2: and you know, we're expected to shine and glisten in
19:29
Speaker 2: the sun.
19:29
Speaker 1: And when you have exima.
19:32
Speaker 2: I mean, let's be real, you know, like and when
19:34
Speaker 2: you have exima, that's just not always the case. And
19:37
Speaker 2: so I personally have felt a lot of shame and
19:40
Speaker 2: like just like yeah, like it's as if it's taken
19:44
Speaker 2: my beauty away to an extent, because like I'm naturally drier.
19:49
Speaker 2: I can put moisturizer on one second and literally five
19:53
Speaker 2: minutes later, my skin just literally like sucks it up
19:56
Speaker 2: and it looks as if I didn't even moisturize at all.
19:59
Speaker 3: There's a lot you're dealing with at the same time.
20:02
Speaker 3: Because of this, you created Black Girls with eczema. Talk
20:07
Speaker 3: to me about what inspired it, talk to me about
20:10
Speaker 3: creating it, and talk to me about the community you're
20:13
Speaker 3: building through it.
20:14
Speaker 2: So when I was twenty four, I was going through
20:18
Speaker 2: TSW early stages of it, and I had started this
20:22
Speaker 2: page called pretty Itchy was the Instagram handle at the time. Incredible, incredible,
20:29
Speaker 2: And so while I was talking about and while I'm looking,
20:32
Speaker 2: I'm looking for other women who look like me, and
20:35
Speaker 2: it just I just wasn't seeing many. And so that
20:38
Speaker 2: I think was what planted the early seed in my mind,
20:41
Speaker 2: like hmm, there's a void here. And so I ended
20:44
Speaker 2: up going to my first EXMA expo that National ExM
20:48
Speaker 2: Association host every year, and I think I went in
20:52
Speaker 2: like twenty twenty two, and I was just like just
20:57
Speaker 2: shook by the amount of black women who had EXMA
21:02
Speaker 2: and who looked like me, like as far as their
21:04
Speaker 2: skin texture, like down to the same region. The first thing, like,
21:08
Speaker 2: after we had done some discussion topic, I went up
21:11
Speaker 2: to a handful of black girls in the room and
21:12
Speaker 2: I was like, Hey, I know this is weird, but
21:15
Speaker 2: can I take a photo of our hands? Because I
21:17
Speaker 2: just have never seen people's hands who look like mine,
21:19
Speaker 2: you know. And I was just like so excited about
21:22
Speaker 2: it because again, like representation, like it really matters, like
21:26
Speaker 2: on such a deeper level, because it feels so isolating,
21:30
Speaker 2: you know, living with this condition, and so to see
21:33
Speaker 2: it in real life for the first time just broke
21:35
Speaker 2: something open in me. So I kept going to XMA expo,
21:40
Speaker 2: and I think the second one I went to, I
21:42
Speaker 2: wanted to host a black girls support group, and that
21:45
Speaker 2: first Sister Circle was like poppin', Like it was full.
21:50
Speaker 2: They were just we could not end that conversation, and
21:54
Speaker 2: like we were just talking, talking, talking, We talked about
21:56
Speaker 2: the struggles of getting our nails done, just all of
21:59
Speaker 2: those nuance experienced pieces of being a black woman with EXMA.
22:03
Speaker 2: And so this last EXMA Expo that I went to
22:08
Speaker 2: in Arizona in twenty twenty five, I did the Sister
22:12
Speaker 2: Circle again and it was full to where they had
22:15
Speaker 2: to like add seats, and people were like standing up
22:17
Speaker 2: and like.
22:17
Speaker 1: It was just a packed room.
22:19
Speaker 2: So I was like, so, I'm thinking about starting this
22:22
Speaker 2: thing called Black Girls with EXMA. Like, I think we
22:24
Speaker 2: should have a digital community and then we can have
22:26
Speaker 2: in person events as well. What do you guys think?
22:28
Speaker 2: And they were like immediately yes. When they said that,
22:31
Speaker 2: I went ahead posted a reel on the Instagram and
22:35
Speaker 2: it just took off from there and now you know,
22:39
Speaker 2: I think it's about like nine hundred or something followers,
22:42
Speaker 2: but we have monthly support calls. People from Senegal, India, UK, like,
22:49
Speaker 2: people from all over the world are joining us, and
22:52
Speaker 2: I just never expected that it would grow like this,
22:55
Speaker 2: just seeing the way that we just were thriving talking
22:59
Speaker 2: like I mean, I keep them an hour for a reason,
23:01
Speaker 2: because we don't limit them to an hour we might
23:04
Speaker 2: be talking.
23:04
Speaker 3: It's like twenty five hours.
23:06
Speaker 2: Yes, exactly, exactly. We still all have lives to live.
23:09
Speaker 2: So that revealed to me that it was so necessary
23:13
Speaker 2: to meet in person, because really, community is so healing.
23:18
Speaker 2: October is EXMA Awareness Month, So I decided I'm going
23:21
Speaker 2: to host a retreat in October.
23:23
Speaker 1: Black women Deserve a Retreat.
23:26
Speaker 2: Black Women with exzema deserve a retreat, and we deserve
23:29
Speaker 2: to live and experience luxury and joy and sisterhood and
23:34
Speaker 2: nourishment as well.
23:35
Speaker 1: So that's exactly what we're going to do.
23:37
Speaker 2: And I anticipate lots of tears, lots of hugs. I
23:41
Speaker 2: want to do a little cute photo shoot with all
23:43
Speaker 2: the exzema girlies and just again show that representation like
23:47
Speaker 2: we are beautiful too. We get to experience things like
23:50
Speaker 2: this too, and we don't have to stop living just
23:53
Speaker 2: because we have exema.
23:54
Speaker 1: I love this.
23:55
Speaker 3: I think it's so cool you've made this community.
23:57
Speaker 1: Thank you.
23:59
Speaker 3: So my final question here is where is your exema today?
24:05
Speaker 3: And how do you define healing? How do you define
24:09
Speaker 3: healing right now?
24:10
Speaker 2: In this moment heavy question, my exema is it's just
24:18
Speaker 2: so unpredictable right now.
24:19
Speaker 1: To be honest, it is. I am nowhere near healed.
24:24
Speaker 2: Like I thought I EXO would be a thing of
24:26
Speaker 2: the past, but it is not. And so right now
24:30
Speaker 2: I'm still very much inflamed, i am still very much itchy,
24:36
Speaker 2: I am experiencing hyper pigmentation. I've got chronic hand exuma
24:41
Speaker 2: that I talk about often. I'm at a place where
24:44
Speaker 2: I am just like trying kind of at all.
24:46
Speaker 1: Still, I am trying.
24:48
Speaker 2: Traditional Chinese medicine, so I'm in that journey. I started
24:52
Speaker 2: doing therapy because I do think there's a you know,
24:55
Speaker 2: a mental health component to this, and I definitely believe
24:58
Speaker 2: like my chronics contributes to my exema. It's a trial
25:03
Speaker 2: and error and I never claim to have it all
25:05
Speaker 2: figured out, So I am just healing in real time
25:09
Speaker 2: and sharing my journey leaning on my community. I mean,
25:13
Speaker 2: the Black Girls with EXZMA community supports me and pours
25:16
Speaker 2: into me just as much as I pour into them,
25:18
Speaker 2: like they're always sharing resources with me at the support calls.
25:22
Speaker 1: So it's a journey. It's a journey. Yeah, well that
25:25
Speaker 1: is so cool.
25:26
Speaker 3: Cynthia. Thank you so much for taking the time to
25:29
Speaker 3: talk to me today, and I really appreciated getting to
25:32
Speaker 3: know you.
25:33
Speaker 1: Yes, it's been a pleasure.
25:38
Speaker 3: Thank you so much for being with us for Cynthia's story.
25:41
Speaker 3: There is still so much more to come this season,
25:44
Speaker 3: but until then, may we all moisturize generously and embrace
25:48
Speaker 3: our most incredible glazed doughnut selves. Skin Quarries is a
25:53
Speaker 3: production of Ruby's Studio from iHeartMedia. Our producer is reem
25:57
Speaker 3: El mcgraby, Project lead is Maria Saint Auban and sound
26:01
Speaker 3: designer is Sam Sega. I'm Dylan Marin and we will
26:05
Speaker 3: see you next time.