Latest / Skinquiries / When Your Skin Sets the Agenda

Transcript

When Your Skin Sets the Agenda · Skinquiries

0:07
Speaker 1: Exmo was, I call her the dictator of my life
0:10
Speaker 1: back in the day. She dictated what I could wear,
0:13
Speaker 1: where I could go, who I could hang out with,
0:16
Speaker 1: what I could do. So I could have all the
0:19
Speaker 1: plans to hang out with my friends and go to
0:20
Speaker 1: the park. But if she, my eczema flared up, okay,
0:25
Speaker 1: we got to do some cancellations, maybe even do a
0:27
Speaker 1: little bit of lying as to why I can't join
0:31
Speaker 1: in on the festivities.
0:35
Speaker 2: Skin is rude. It has absolutely no respect for our calendars.
0:41
Speaker 2: It doesn't care what we've scheduled or spent weeks looking
0:44
Speaker 2: forward to. A school dance, a job interview, a vacation.
0:49
Speaker 2: Your skin has its own timeline and sometimes, let's be real,
0:53
Speaker 2: an attitude. When your skin can change without warning, it
0:56
Speaker 2: can be very hard to make plans, or even be
1:00
Speaker 2: fully present when you're always wondering what might set it off.
1:04
Speaker 2: So how do you live your life without always having
1:07
Speaker 2: to plan for the next flare-up? And how do you
1:09
Speaker 2: hold on to a sense of control when you have
1:12
Speaker 2: no idea what your body might do next? Hello, everyone,
1:17
Speaker 2: and welcome or welcome back to Skin Queries. This is
1:21
Speaker 2: a show about skin, but really it's a show about people.
1:25
Speaker 2: Because skin health, we all know, does not exist in
1:28
Speaker 2: a vacuum. It shapes how we're seen, how we see ourselves,
1:32
Speaker 2: and our experiences of confidence, identity, community, and care. I
1:38
Speaker 2: am your host, Dylan Marron. Today, we're looking at what
1:48
Speaker 2: happens when your skin sets the agenda. My guest today
1:52
Speaker 2: is Ashley Ann. She's an eczema advocate who has lived
1:55
Speaker 2: with atopic dermatitis for nearly her entire life. Growing up,
2:00
Speaker 2: Ashley didn't have the language to understand her triggers or
2:03
Speaker 2: the tools to anticipate what her skin might do next. Again,
2:07
Speaker 2: on its own calendar. She could only respond to each
2:10
Speaker 2: flare-up as it happened. But when the treatment she had
2:13
Speaker 2: relied on for most of her life stopped giving her
2:16
Speaker 2: the relief she expected, Ashley had to reconsider everything she
2:21
Speaker 2: thought she knew about managing her condition. Her story is
2:25
Speaker 2: about learning to recognize when something isn't working, finding the
2:29
Speaker 2: confidence to try a different path, and building a relationship
2:33
Speaker 2: with her skin that leaves room for uncertainty without allowing
2:37
Speaker 2: it to take over. To understand how Ashley reached that point,
2:41
Speaker 2: we have to go all the way back to when
2:44
Speaker 2: her relationship with eczema first began, when she was just
2:48
Speaker 2: a teeny, tiny little baby.
2:51
Speaker 1: So, I don't remember when I was diagnosed, but my
2:55
Speaker 1: parents have made it very clear that I was just
2:58
Speaker 1: a few months old when I was diagnosed with atopic dermatitis,
3:02
Speaker 1: also known as eczema. Mm-hmm. I do remember after a
3:05
Speaker 1: couple of years, the trials and the burden of living
3:09
Speaker 1: with this condition. I remember one even very specific scenario
3:16
Speaker 1: where I was at my parents, they owned a restaurant
3:19
Speaker 1: back in the day and I was about five years old.
3:22
Speaker 1: I walked into the kitchen and it smelled like seafood.
3:26
Speaker 1: And right away, my body went into a full blown
3:29
Speaker 1: flare up.
3:31
Speaker 2: Just at the smell.
3:32
Speaker 1: Just at the smell. I'd even eat the fish just
3:34
Speaker 1: at the smell. And I just remember being little and
3:36
Speaker 1: scratching and my mom taking me to the bathroom and
3:38
Speaker 1: trying to calm me down. So I remember like that's
3:41
Speaker 1: as early, I feel like, as I can remember.
3:44
Speaker 2: Right.
3:45
Speaker 1: But of course, my parents tell me stories of how
3:48
Speaker 1: I had to sleep with them so that they could
3:50
Speaker 1: hold my hands down, unfortunately, so I wouldn't scratch myself
3:53
Speaker 1: during my sleep because that's when it would be that intense.
3:57
Speaker 1: I know it was intense. And I give, I mean,
4:00
Speaker 1: the older I get and the more I understood this condition,
4:04
Speaker 1: I give all the credit to my parents for what
4:09
Speaker 1: they went through in dealing with me and my eczema. Mm-hmm.
4:14
Speaker 2: Yeah, it's a challenging role for the care. I mean,
4:17
Speaker 2: to not take any of the challenge away from you
4:20
Speaker 2: who was living with it. It is also uniquely challenging
4:24
Speaker 2: for the caregiver.
4:25
Speaker 1: One thousand percent. Yeah.
4:27
Speaker 2: It's a lot kind of for everyone. It touches everyone.
4:30
Speaker 2: So then how did this affect your time at school?
4:34
Speaker 1: Oh, I skipped plenty of school days back in the day.
4:39
Speaker 1: It was as soon as I felt an itch. It
4:43
Speaker 1: was just like, no, mom, can't go to school.
4:45
Speaker 2: Can't do it.
4:46
Speaker 1: I would say like my parents were super lenient on
4:49
Speaker 1: that and I love them for it. There were so
4:53
Speaker 1: many times even when I was at school that I
4:55
Speaker 1: would go to the nurse's office early on and have
4:59
Speaker 1: a full blown flare up and say, hey, just give
5:01
Speaker 1: me ice. Give me ice. I just want ice on
5:04
Speaker 1: my face. And they would call my parents and I
5:08
Speaker 1: would go to the derm or my doctor and at
5:11
Speaker 1: that time and skip school for the rest of the day.
5:15
Speaker 1: And so that was definitely part of the process. It
5:19
Speaker 1: was just, I was known as the child who was
5:23
Speaker 1: always out of school for purposes of my skin. Yeah.
5:32
Speaker 2: You talked a little about ice baths and you talked
5:35
Speaker 2: about going to the nurse, but walk me through in
5:38
Speaker 2: this age, how you're kind of managing symptoms as they come.
5:43
Speaker 1: Yeah, there is no management of symptoms as they come.
5:47
Speaker 1: I didn't understand anything about management. I didn't understand anything
5:52
Speaker 1: about triggers. I didn't even have that language. I didn't
5:55
Speaker 1: even know what those words meant for me. I just
5:59
Speaker 1: knew that I had eczema, specifically atopic dermatitis. And so
6:03
Speaker 1: no one had ever taken the time to explain to
6:07
Speaker 1: what I was going through or what this condition was
6:10
Speaker 1: or how to even manage it. I didn't know things like, oh,
6:14
Speaker 1: stress can be correlated to your eczema. So like, no
6:16
Speaker 1: wonder before, you know, big school exams, I would I
6:20
Speaker 1: would flare up. It just made sense because I was
6:23
Speaker 1: stressing myself out. So everything that I did was very reactive. Yeah.
6:29
Speaker 2: As a kid, it just sounds like you're kind of
6:32
Speaker 2: living it day by day and you're just like, OK,
6:34
Speaker 2: I'm responding to what's right in front of me. I'm
6:38
Speaker 2: wondering how how this affected your ability to make plans,
6:42
Speaker 2: how to like do anything. What did that look like?
6:46
Speaker 1: So I will say that. Eczema was, I call her
6:51
Speaker 1: the dictator of my life back in the day. She
6:53
Speaker 1: dictated what I could wear, where I could go, who
6:57
Speaker 1: I could hang out with, what I could do.
6:59
Speaker 2: Yeah.
7:00
Speaker 1: Because it was really all about checking my skin first
7:04
Speaker 1: and then choosing what I could do that day. Yeah.
7:07
Speaker 1: So I could have all the plans to hang out
7:09
Speaker 1: with my friends and go to the park. But if she,
7:12
Speaker 1: my eczema flared up, okay, we got to do some cancellations,
7:16
Speaker 1: maybe even do a little bit of lying as to
7:18
Speaker 1: why I can't join in on the festivities. But that's
7:24
Speaker 1: how it was. I missed a lot of even gym
7:27
Speaker 1: days at school or gym sessions because I'm like, nope, can't,
7:32
Speaker 1: can't sweat.
7:32
Speaker 2: Yeah.
7:33
Speaker 1: My eczema is going to flare up. And so. It
7:36
Speaker 1: was just like you said, I took it day by day.
7:40
Speaker 1: I was definitely in survival mode. Yeah. something that's very
7:44
Speaker 1: common in the eczema community is we don't remember a
7:47
Speaker 1: lot of our childhood and our memories because we were
7:51
Speaker 1: in such survival mode. So it wasn't until later on
7:54
Speaker 1: in my life when I met my husband and I'm like, wow,
7:56
Speaker 1: you remember a lot about your childhood. I'm like, what
8:00
Speaker 1: happened to me? I don't remember anything.
8:01
Speaker 2: Because you're so in the moment remembering what- Because I
8:04
Speaker 2: was so in the moment. Yeah, I totally get that.
8:07
Speaker 2: I love that you've feminized your dictator. It feels very
8:11
Speaker 2: like some like, very dark, twisted form of feminism that
8:15
Speaker 2: you're like, no, no, no, my dictator is a woman. She, her,
8:19
Speaker 2: you know?
8:19
Speaker 1: You know, we have turned into best friends now. Oh, whoa.
8:23
Speaker 1: We have boundaries. Okay. It's a whole new relationship.
8:28
Speaker 2: I love this.
8:29
Speaker 1: We've gone to therapy together. You know what I'm saying?
8:32
Speaker 2: This is restorative justice for your dictator.
8:35
Speaker 1: Oh, 1,000%.
8:37
Speaker 2: I wish the world worked that way. Imagine that. So, okay, now, okay,
8:45
Speaker 2: can you tell me about the moment that your management
8:48
Speaker 2: tools suddenly went away? A big moment for you.
8:51
Speaker 1: Yeah. So for the majority of my life, I had
8:55
Speaker 1: been using topical steroids. I was very dependent on it.
9:00
Speaker 1: And I would not leave my house without my tube
9:03
Speaker 1: of steroids at that time. Mm-hmm. Even when I was
9:06
Speaker 1: at school, if I accidentally left them at home, oh, geez,
9:09
Speaker 1: it was panic. Mom, go get me my two creams.
9:12
Speaker 1: I need them now because I was so dependent on them.
9:15
Speaker 1: And so fast forward to November of 2014, I had
9:20
Speaker 1: a huge body flare up again, was itchy from head
9:24
Speaker 1: to toe. And I applied to topical steroids like I
9:28
Speaker 1: normally do when I'm in moments of crises like this.
9:32
Speaker 1: You know, I normally wait about 30 minutes and I'm like, OK,
9:35
Speaker 1: so this is not working. And so I applied again
9:39
Speaker 1: and waited another 30 minutes. And I'm like, this is
9:43
Speaker 1: not going down. What is what is going on here?
9:46
Speaker 1: And that's when the anxiety kind of kicked in because
9:48
Speaker 1: I was like, what is happening? My entire world and
9:53
Speaker 1: idea of what it was to manage my eczema at
9:56
Speaker 1: that time completely crashed. That's when I started doing research
10:02
Speaker 1: for the first time and really Googling eczema and what
10:05
Speaker 1: that meant and found blogs and found National Eczema Association.
10:10
Speaker 1: I found itsan.org that talks about TSW, topical steroids withdrawal.
10:16
Speaker 1: And then I realized, wow, I think the medicine stopped
10:20
Speaker 1: working for me and my body was just going through
10:23
Speaker 1: maybe a withdrawal process.
10:25
Speaker 2: What did that withdrawal process look like? That was horrendous.
10:30
Speaker 1: That was probably one of the hardest things I ever
10:34
Speaker 1: had to go through. And I just want to give
10:38
Speaker 1: a shout out to the TSW community in general who
10:42
Speaker 1: is going through this. And there are so many people
10:44
Speaker 1: who have been going through topical steroids withdrawal for years.
10:48
Speaker 1: It takes a lot of courage, bravery, tenacity, resilience to
10:54
Speaker 1: It takes a lot of pain to go through something
10:57
Speaker 1: like that. And when I went through it, we didn't
11:00
Speaker 1: have the community that the community has now. There was
11:05
Speaker 1: nobody online really talking about it. I read through it
11:07
Speaker 1: on blogs. But at that time, I lost all of
11:10
Speaker 1: my hair. I lost all of my eyebrows. My skin
11:14
Speaker 1: looked like it was like 100 years old. Whoa. And
11:17
Speaker 1: everything happened just so quickly. And so... It was definitely
11:22
Speaker 1: a challenging time. However, I will say, I always knew
11:26
Speaker 1: that I was going to get better. I always knew
11:31
Speaker 1: I had the belief that, okay, I know this is temporary.
11:35
Speaker 1: You're just one day closer to your healing, Ashley. So
11:38
Speaker 1: having that mentality and that belief in myself and my
11:41
Speaker 1: body that I knew I was going to heal, I
11:44
Speaker 1: didn't know how, but I knew I was going to
11:46
Speaker 1: get better. That's what kept me going.
11:49
Speaker 2: I guess... How do you kind of have that faith
11:52
Speaker 2: without knowing exactly when it's coming?
11:56
Speaker 1: I mean, that's exactly what faith is, right? Faith is.
12:01
Speaker 1: Following this path without being able to even see what
12:05
Speaker 1: the path is. And when my world crumbled apart during TSW,
12:12
Speaker 1: I had to put the puzzle pieces little by little
12:16
Speaker 1: back together. And I had to ask myself, who is
12:19
Speaker 1: Ashley outside of the skin? because I did not recognize her.
12:23
Speaker 1: When I looked in the mirror, I was not me.
12:26
Speaker 1: It was a whole different person. So I had to
12:29
Speaker 1: really dive deep within myself and ask myself, who am
12:33
Speaker 1: I outside of this condition? And I was like, well,
12:36
Speaker 1: I'm a person who has a lot of faith. I'm
12:38
Speaker 1: a person who believes in who she is and how
12:43
Speaker 1: powerful she is. And so just had to put the
12:46
Speaker 1: little puzzle pieces back together internally and To figure out
12:50
Speaker 1: who I was. And again, that's that's what drove me.
12:53
Speaker 2: Wow. Thank you for sharing that.
12:56
Speaker 1: Yeah.
12:58
Speaker 2: Aside from the symptoms and what it looked like in
13:02
Speaker 2: the mirror, how did this affect your life, your plans
13:07
Speaker 2: for your life after this moment?
13:10
Speaker 1: Yeah, it affected everything. I mean, right out of college,
13:14
Speaker 1: I had all these high hopes of going to law school.
13:17
Speaker 1: And so I was studying for the LSAT. And then
13:19
Speaker 1: that's when my health took a turn. And that's when
13:23
Speaker 1: I went through TSW. And so it stopped all of that.
13:28
Speaker 1: I mean, I didn't have the capacity to think, to
13:32
Speaker 1: do anything, to be in service of anybody. It was
13:36
Speaker 1: a challenging time. Again, my world was turned upside down.
13:39
Speaker 1: I didn't know who I was. So yeah, I just
13:42
Speaker 1: really had to figure myself out. And I do recall
13:46
Speaker 1: this one moment where I was in bed and I
13:49
Speaker 1: had all of these LSAT books in front of me.
13:51
Speaker 1: And I just remember looking up and I'm like, God,
13:53
Speaker 1: is this really what you want me to do? Yeah.
13:56
Speaker 1: Is this really my path? And for some reason, I
13:59
Speaker 1: got a clear no. I closed that LSAT book and
14:02
Speaker 1: never looked back.
14:04
Speaker 2: Never looked back after that. I love that. It might
14:08
Speaker 2: not have felt like it in the moment, but I
14:09
Speaker 2: think that was a big gift for you. Oh, 1000%.
14:14
Speaker 1: I will say that my path and my career path,
14:18
Speaker 1: my journey has transformed into something so much better than
14:23
Speaker 1: I could have ever imagined. And it's so much more
14:25
Speaker 1: aligned to who I am as a person. Yeah. So
14:28
Speaker 1: it only made sense. Okay.
14:30
Speaker 2: I love that for you. And thank you, universe, for
14:33
Speaker 2: all that you did.
14:33
Speaker 1: Thank you.
14:35
Speaker 2: Thank you. So it's wild to ask this question with
14:39
Speaker 2: a smile. It's so fun to talk to you that
14:41
Speaker 2: I'm asking these heavy questions as I'm like elated. You
14:46
Speaker 2: obviously feel not just physically isolated in this time, you're
14:51
Speaker 2: emotionally isolated too. How are you dealing with that?
14:56
Speaker 1: Um... As best as I could. I will tell you
15:01
Speaker 1: that I was super sensitive to light. So the house
15:07
Speaker 1: was always dark. I always had the shades down. I
15:11
Speaker 1: never looked at myself in the mirror to avoid the
15:15
Speaker 1: trauma feeling. of like, oh my God, that's me. So
15:19
Speaker 1: I would avoid mirrors. I would avoid wanting people to
15:23
Speaker 1: see me. So I tried to stay as hidden as
15:26
Speaker 1: possible all the time, whether it be with clothes, with lighting,
15:31
Speaker 1: with not surrounding myself with groups of people. And so,
15:36
Speaker 1: like you mentioned, it was definitely isolating in every way.
15:39
Speaker 1: And I intentionally isolated myself Because of just how I
15:45
Speaker 1: felt and what I looked like. And I didn't want
15:48
Speaker 1: people to see that.
15:49
Speaker 2: Yeah. And then how long was this period?
15:53
Speaker 1: About a year and a half until I found an
15:58
Speaker 1: online advertisement that got me into a clinical trial for
16:03
Speaker 1: a biologic, which was like wild.
16:06
Speaker 2: Okay. You gave us our best little cliffhanger hook.
16:10
Speaker 1: Okay.
16:10
Speaker 2: Amazing.
16:11
Speaker 1: Perfect.
16:11
Speaker 2: Perfect. Tell me about it.
16:14
Speaker 1: Yeah, it was originally for asthma. Oh. And because I
16:20
Speaker 1: had the trifecta, I had the eczema, allergies, the asthma.
16:24
Speaker 2: And we love this trinity.
16:25
Speaker 1: Yes, that's the trinity. I had it all. And I
16:30
Speaker 1: remember the doctor seeing me and he's like, oh, no,
16:34
Speaker 1: I think you would be better for a different clinical trial.
16:38
Speaker 1: And at that time, it was for a biologic. And
16:41
Speaker 1: I was like, okay, you know, I've been suffering for
16:45
Speaker 1: a year and a half. I am willing to do
16:48
Speaker 1: this if it means that my community has a better
16:52
Speaker 1: option for them. And that's all I needed.
16:57
Speaker 2: I love that. Now you get to brag. Exactly.
16:59
Speaker 1: Exactly.
17:01
Speaker 2: Okay, so you do this clinical trial. What happened to
17:04
Speaker 2: your skin?
17:05
Speaker 1: So right away, my skin started improving. And mind you,
17:10
Speaker 1: this is a blind study, meaning that I don't know
17:13
Speaker 1: if I'm actually receiving the drug or not. However, after
17:17
Speaker 1: an injection, I would probably wait a few minutes, maybe
17:20
Speaker 1: like 30 minutes or so, and I would feel a
17:22
Speaker 1: decrease in itchiness. And I was like, huh, I haven't
17:26
Speaker 1: experienced this in a long time. And so- As the
17:30
Speaker 1: clinical trial continued, that was the same experience. And I
17:36
Speaker 1: knew that something was working. I didn't know what it was,
17:39
Speaker 1: but something was working. And that's when I eventually got
17:44
Speaker 1: to another phase in the clinical trial where they actually
17:48
Speaker 1: give you the medication for a longer period of time.
17:51
Speaker 1: And once I had it consistently, that's when everything changed
17:55
Speaker 1: for me. I felt a difference in the beginning of
17:59
Speaker 1: the clinical trial. After I got into a different phase
18:03
Speaker 1: of the trial, now I saw a difference.
18:05
Speaker 2: Whoa.
18:06
Speaker 1: Now I could physically see my skin healing and improving.
18:11
Speaker 1: And Dylan, when I tell you... I felt like a
18:17
Speaker 1: baby calf learning how to walk in this new skin.
18:22
Speaker 2: Oh, my God.
18:23
Speaker 1: I went on like three vacations that summer.
18:27
Speaker 2: Of course.
18:28
Speaker 1: I wore shorts during the wintertime.
18:31
Speaker 2: You have to.
18:32
Speaker 1: I was like, everybody is going to see these legs.
18:35
Speaker 2: Yes.
18:36
Speaker 1: Because I've been in hiding for so long.
18:38
Speaker 2: Come on. You have to show. You're catching up.
18:40
Speaker 1: Oh.
18:41
Speaker 2: I had to.
18:43
Speaker 1: Show off Dylan. And so I sure did. And it was,
18:47
Speaker 1: it was the absolute best time of figuring out who
18:51
Speaker 1: is this Ashley who can now go out and enjoy and,
18:56
Speaker 1: and even go to a bar with friends, which I
18:58
Speaker 1: didn't have the ability to do. And so It was
19:03
Speaker 1: just a whole new world.
19:05
Speaker 2: Okay, perfect. Now I'm going to go wear shorts and
19:07
Speaker 2: a crop top outside everywhere I go. Simply just being
19:11
Speaker 2: inspired by this conversation.
19:12
Speaker 1: Yes.
19:17
Speaker 2: How has your relationship with your relationship to medical professionals
19:22
Speaker 2: changed throughout this?
19:24
Speaker 1: Oh, it's completely transformed. And this is something that's very
19:28
Speaker 1: common in our community where... At some point, and you
19:33
Speaker 1: can talk to anybody, I'll speak from eye, but for
19:36
Speaker 1: a period of time, I gave up on doctors because
19:40
Speaker 1: my experience would be the exact same thing. I would
19:44
Speaker 1: flare up. I would go to the doctor, wait in
19:46
Speaker 1: the waiting room for 10, 15 minutes, go into the office.
19:49
Speaker 1: They look at my skin and just prescribe me a
19:52
Speaker 1: topical steroids or a stronger topical steroids. And that was it.
19:55
Speaker 1: There was no conversation. There was no questions or no
19:59
Speaker 1: interactions whatsoever. And so I was like, why am I
20:04
Speaker 1: going to go to the doctors if I have the
20:06
Speaker 1: cream right here that's been working for me? I don't
20:08
Speaker 1: need to go. So for a period of time, I
20:11
Speaker 1: stopped going to the doctors. However, after the clinical trial
20:16
Speaker 1: or during the clinical trial, when I was building this
20:20
Speaker 1: relationship with this allergist who provided me a treatment that
20:25
Speaker 1: was life-changing and I started to see him completely different
20:28
Speaker 1: and that's where the relationship really changed because I realized, oh,
20:33
Speaker 1: there could be interaction here. I can ask questions too.
20:38
Speaker 1: It was just awesome after that.
20:40
Speaker 2: Yeah, it's always like a really important moment to remember
20:44
Speaker 2: that like so many of us feel so powerless in
20:48
Speaker 2: doctor's offices because we're kind of just like, okay, this
20:50
Speaker 2: is the expert. I'm going to take what they give me.
20:52
Speaker 2: And I heard somewhere and I don't have the attribution
20:57
Speaker 2: for this, but like the importance of being able to
21:00
Speaker 2: like tell your own story to the doctor so that
21:03
Speaker 2: you can like, you know, bring them into what you're
21:06
Speaker 2: dealing with. I think it's like a it's obviously a
21:11
Speaker 2: hard one lesson. But a very cool one because we're like, well,
21:15
Speaker 2: we have some power in this situation, too, which is nice.
21:18
Speaker 1: Yeah. And I didn't know I had that power. And
21:23
Speaker 1: that was all I needed to almost like take my
21:29
Speaker 1: power back from like the condition itself, from excellent, from
21:33
Speaker 1: this dictator.
21:34
Speaker 2: That she heard dictator.
21:36
Speaker 1: She heard. Yeah. Yeah. that took over my life. And
21:39
Speaker 1: so even years later, I found my dermatologist who also
21:45
Speaker 1: changed my life in beautiful ways. I found another allergist
21:49
Speaker 1: in my area. And so I do my best to
21:53
Speaker 1: bridge that gap because the community has so much distrust
21:59
Speaker 1: with HCPs, healthcare professionals, I do my best to share
22:06
Speaker 1: both sides and acknowledge that, yes, I have been to
22:09
Speaker 1: doctors who didn't make me feel seen and heard. However,
22:13
Speaker 1: I've been to other doctors that have just left me
22:17
Speaker 1: feeling empowered and inspired and ready for more healing. And so, yeah,
22:23
Speaker 1: I just I do my best to share both sides
22:26
Speaker 1: to my community to let them know, hey. maybe the
22:29
Speaker 1: doctor you have right now isn't the most supportive but
22:32
Speaker 1: just like keep going get a second opinion ask questions
22:37
Speaker 1: tell them how you're feeling which it goes back to
22:39
Speaker 1: what you said about like bring them into your world
22:43
Speaker 1: of what it looks like to live with this condition yeah.
22:46
Speaker 2: That's it's cool it's cool um Have you had any
22:51
Speaker 2: recent brushes with eczema?
22:53
Speaker 1: Oh, all the time. I mean, eczema is a part
22:56
Speaker 1: of my life every single day. My biggest one, I
23:00
Speaker 1: was just on vacation in Dominican Republic and my armpits
23:05
Speaker 1: started flaring up and my hands started flaring up with eczema.
23:10
Speaker 1: And I was like, OK, here we go. You know,
23:12
Speaker 1: just again, because I have everything that I need to
23:17
Speaker 1: support myself, I'm like, OK, Let's go through the healing
23:20
Speaker 1: process like we always do, Ash.
23:27
Speaker 2: How has your relationship with your flare-ups changed over time?
23:31
Speaker 1: When I was younger, as I mentioned, I was very
23:34
Speaker 1: reactive to my flare-ups. They would put me into this panic,
23:38
Speaker 1: anxiety mode of like, oh my God, why me? Why
23:42
Speaker 1: am I going through this? And just not having the
23:45
Speaker 1: tools or the language to support me. Now, fast forward,
23:50
Speaker 1: a flare-up to me is... It's like nothing. It's like, OK,
23:55
Speaker 1: here we go. Let's let's go into our routine and
23:59
Speaker 1: do what we need to do. And there's just a
24:02
Speaker 1: confidence within me that I know I'll be OK, that
24:05
Speaker 1: I know this is temporary. It's a temporary feeling. And
24:11
Speaker 1: so emotionally, it's it's it's a 180 where before I
24:15
Speaker 1: felt totally defeated by my flare ups and now I
24:19
Speaker 1: feel confident and resilient to manage them.
24:23
Speaker 2: That's amazing. What do you want people to know about
24:28
Speaker 2: what it's like to live with a skin condition that
24:31
Speaker 2: can change day to day?
24:33
Speaker 1: I would tell anybody who's experiencing eczema symptoms that, one,
24:39
Speaker 1: they're not alone. There are hundreds of thousands of us
24:43
Speaker 1: who are living with this condition. In fact, there are
24:45
Speaker 1: over 31 million Americans who live with eczema. And so
24:49
Speaker 1: you're not alone. Number two, I would tell them that
24:52
Speaker 1: there are so many more options nowadays to support them
24:57
Speaker 1: in healing. If one thing doesn't work, guess what? You
25:00
Speaker 1: can go ahead and try something else because there is
25:02
Speaker 1: something else out there for you. And then two, to
25:05
Speaker 1: just be graceful with yourself. Your body is changing and
25:11
Speaker 1: you're transforming. And so Really support yourself with like mental
25:17
Speaker 1: practices that can keep you at bay and can remind
25:21
Speaker 1: you of who you are as a person outside of
25:23
Speaker 1: your skin, which I think is the most important part.
25:27
Speaker 1: And that we are our biggest critic. People, we constantly
25:31
Speaker 1: think that people are looking at us and they're judging
25:34
Speaker 1: us for our skin. And anytime I hear another eczema
25:38
Speaker 1: warrior talk about that, I'm like, honey, when this person
25:40
Speaker 1: is on their deathbed, the last thing they're thinking about
25:43
Speaker 1: is you and your skin.
25:45
Speaker 2: So you can just ignore that. We can put a
25:49
Speaker 2: pause on that.
25:50
Speaker 1: We can put a pause on that. You don't need
25:52
Speaker 1: to worry. They're not worried about you. So I have
25:58
Speaker 1: a beautiful community now of eczema warriors who are just
26:03
Speaker 1: really living their full lives out there, even while they're
26:07
Speaker 1: flaring up. And that is something I wish I saw
26:11
Speaker 1: when I was a child growing up with eczema. I
26:14
Speaker 1: didn't know that I could still be confident and still
26:17
Speaker 1: flare up at the same time. That I could be
26:21
Speaker 1: powerful and joyful and happy even though I was flaring up.
26:25
Speaker 1: I didn't know those two things could exist in the
26:27
Speaker 1: same space. And now that I do know that, it's like, ugh.
26:31
Speaker 1: I'm good. I'm good.
26:32
Speaker 2: That's so cool.
26:34
Speaker 1: Yeah.
26:35
Speaker 2: Ashley, it has been truly such a pleasure to talk
26:38
Speaker 2: to you today. Thank you so much for sharing everything,
26:41
Speaker 2: sharing your story. And it genuinely feels inspiring and cool.
26:46
Speaker 1: To hear from you. Thank you so much, Dylan, for
26:48
Speaker 1: facilitating this beautiful conversation. I appreciate you.
26:57
Speaker 2: Thank you so much for being with us for Ashley's story.
27:00
Speaker 2: There is still so much more to come this season,
27:03
Speaker 2: so stay tuned. But until then, may we trust that
27:07
Speaker 2: even when the path isn't clear, that we can still
27:10
Speaker 2: find our way forward, preferably in shorts during the winter.
27:15
Speaker 2: Skin Queries is a production of Ruby Studio from iHeartMedia.
27:19
Speaker 2: Our producer is Reem El-Meghabi. Project lead is Maria St. Aubin.
27:23
Speaker 2: And sound designer is Sam Seguet. I'm Dylan Maron. We'll
27:27
Speaker 2: see you next time.