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When you're in the midst of a skin rash flare, or are going through Topical Steroid Withdrawal (TSW), loving your skin can seem like a pipe dream. But there are ways to navigate your chronic skin rash journey so that you can develop a healthy, affirming relationship with your skin.
Ashley Ann Lora, today's guest, was diagnosed with eczema (atopic dermatitis) as a baby. She suffered a lot growing up due to lack of education and awareness of management tips and treatment options. In 2016, Ashley began sharing her story publicly and turned patient advocacy into her career. Now, she works with brands, pharma companies, and healthcare organizations to help them better understand the eczema community. She's also a trained facilitator and facilitates a weekly support group for those living with eczema and going through TSW.
Whether its TSW or suffering from other rashes, what has helped you on your journey? Let me know in the comments what was as turning point for you!
Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android
In this episode:
- Ashley's long journey from baby eczema to adulthood
- What moment forever changed her outlook on her chronic condition?
- How she when from hating her skin to loving her skin
- The “work” that empowered Ashley to navigate her flareups with more grace
- What does healing look like now for Ashley?
Quotes
“My eczema and my body is really trying to support me. It's not trying to harm me. It's trying to support me in getting to the root cause of my inflammation.” [06:55]
“How I deal with my eczema is the same way of how I deal with my partner, how I deal with my friends, how I deal with my family. And I think that's the big switch that many people may or may not realize is how you treat your eczema could be a correspondence to how you treat other people and more importantly how you treat yourself.” [10:36]
“There are a lot of people who are walking around with clear skin who are not happy, which goes back to show that clear skin does not equate to happiness. So what does make us happy outside of clear skin?” [15:34]
Links
Find Ashley Ann Lora online here
Follow Ashley on Instagram | Facebook | LinkedIn
Watch Ashley's Instagram Reel on healing
Healthy Skin Show ep. 132: What is Topical Steroid Withdrawal? w/ Kathryn Tullos
HEalthy Skin Show ep. 131: Mindset: What To Do When Nothing Seems To Help Your Rashes
Healthy Skin Show ep. 200: Getting Emotional + Mental Support For TSW w/ Jing Rui Yeo
274: What Does It Mean To Heal (PERSONAL JOURNEY) w/ Ashley Ann Lora FULL TRANSCRIPT
Jennifer Fugo: Ashley, thank you so much for being here.
Ashley Lora: Thank you. I'm so excited to be here.
Jennifer: I know. I feel like we've gotten to know each other over this past year, and then we met in person at the Eczema Expo, which was such an amazing experience. And I think the one thing that I have really loved learning about you is how passionate you are in not only advocating for others but also for this almost like highest, most loved sense of self and bringing joy into your life. And yet you have eczema and this has been a long journey for you. Would you mind sharing with everyone what your eczema journey has looked like?
Ashley: Of course. It's been exactly that, just a journey. I was diagnosed with eczema, also known as atopic dermatitis when I was just a baby. And my parents who are immigrants from Dominican Republic didn't really even understand what eczema was, so they just really trusted anyone in a white coat. And I just feel like my journey throughout elementary school, middle school, high school, was just full of doctor's appointments, full of just taking one specific treatment option, really suffering and not understanding why am I living with this condition. I really, really hated my skin and I never met anybody who lived with eczema until I was 22 years old. So this whole time I'm thinking I'm alone. Nobody understands what I'm going through. My doctors are not really supporting me, at least not on a mental level, so I'm just going to settle. And that's exactly what I did for a long period of my time.
I just settled with this condition that this is how my life is going to be. This was my normal at that time until 2014 when I experienced one of the worst flareups I ever had in my adult life. And it was all because I entered a room that had carpet and two dogs, and as soon as I entered that room, I remember feeling that itchiness just crawling from my feet all the way to my upper body. And the treatment that I was using at that time just was not working. And so I remember thinking, “Okay, that's enough. There has to be more to this. I can't just be depending on this one treatment to save me each and every time I flare up.” And that's when I did a Google search and my life completely changed from that Google search because that's when I found the National Eczema Association.
That's when I found out that I wasn't alone, that there were over 31 million Americans living with this condition. And that's when I read blogs of other individuals who were living with eczema, going through topical steroids withdrawal. So it was like all of these limited beliefs that I had grown up with in regards to my eczema and my relationship to it were completely shattered in that moment just because of one Google search, just because of awareness and education, which I think at that time is where really that spark came in with why I do what I do now and really supporting others living with this condition and supporting the health organization's pharma brands, and really understanding who we are and what our needs are.
Jennifer: And do you still have eczema now?
Ashley: Oh, absolutely. I did go through my trial of going through topical steroids withdrawal. I was on Dupixent. I got on to Dupixent back in 2016 during their clinical trials. Because it was doing so well for me, I said, “You know what? I want to try and get off of it.” So I was my own little guinea pig for about two years, and I eventually got off of it in 2018 and then was doing really, really well for years. And then little by little it started to appear here and there and right now it's most prominent on my hands and my arms I would say, and even on my face. And so it's just dealing with it. It's just like, “Okay, I see that you're back. Talk to me.” Like I mentioned before, I really hated my eczema growing up and now she, I call her she, she has turned into my best friend where anytime she's flaring up, I'm like, “Okay, what's up? What is happening? What are you trying to share with me that I can't see that I'm not really paying attention to?”
And it's really a loving relationship I would say. I find myself oftentimes, even in the shower or even outside, just really touching my skin and just sending it almost affirmations like, I see you, I love you, heal with me. I'm here with you. And so like I said, it's been a journey and I feel like it'll always continue to be a journey until the end of the day.
Jennifer: Yeah. So that's so interesting is you said, “I started out hating my skin. I started out hating eczema,” and now you're in a very different place. It's almost like flipping a coin and you're on the other side. Somebody might be sitting here listening to this who literally is still in that I hate eczema camp. I'm sure there's many people listening to that. Was there any particular thing or inspiration or just anything that helped you start to see that you could change that relationship?
Ashley: I think it really started when I was going through topical steroids withdrawal, because that was one of the hardest moments in my life where I felt like my whole life shattered into all of these puzzle pieces. And little by little I had to find myself and I had to ask myself, “Well, who am I if I don't have clear and beautiful skin? Who am I if I lost all my hair at that time?” So I said, “If I don't have my curls, then who am I? If I don't have eyebrows, then who am I?” And so just really picking up the pieces as to what matters and really answering that question, who am I? And realizing that my skin, my eczema does not define me. I also went through a lot of therapy and spiritual work and emotional intelligence work that helped me realize that what was happening to me is not against me. It's for me.
That my eczema and my body is really trying to support me. It's not trying to harm me. It's trying to support me in getting to the root cause of my inflammation. And so once I realized that we were in partnership, we're one and one, this eczema thing is part of who I am, so why not work together to make it better? And there's the saying that I've always heard that what you resist persists. So the more angry I would become at my eczema, the more I hated my eczema, my eczema would give me that same energy back through flare ups, through itchiness, through anxiety. But once I counteracted that with love and appreciation and gratitude, then I felt like my skin gave me love and appreciation and gratitude in return through clearing up, through getting better. And so I see my eczema as almost a person, and it's like, how would I want to treat my best friend? I would want to treat her with love and care and respect, and I know that's the energy I'm going to get back in return.
Jennifer: Yeah, that's a really beautiful … But I mean, that takes a lot of growth. I'm going to be very honest. I just want somebody-
Ashley: One hundred percent.
Jennifer: …. listening to this, we're not saying you just flip a switch. There's work.
Ashley: And I've done the work and I'm doing the work. The work never stops. When I flare up now, it's not like it's all birds and sunshine. When I flare up sometimes I'm like, “Oh gosh, what's happening now? Why am I flaring up?” But then it's that switch of everything that I've learned over the years of like, okay, let's go back to the basics. Breathe. Go into what I call my resource bag where I'm breathing. Okay, what's the next step? I put my hands underwater. I try to relax and calm down. So just making sure that I always have my resource kit, it's a mental and physical thing. And then just going with it each and every time and I try not to take my flareups as an event that … How do I explain this? I tried to explain this to my support group before where it's like I'm trying to always see it as a new moment so that it's not like I'm taking my emotions of the past of how I've dealt with eczema and when eczema flares up into the new moment so that when I flare up I'm like, “Okay, this is a new moment,” to what is taking place versus going into this cycle of, “Oh, it must have been what I ate.
It must have been this, it must have been that.” And going through just this cycle of trying to find answers when in fact, sometimes and most of the time for me, the answers don't matter. What matters is, how am I dealing with it now? How can I get better as soon as possible? Hope that makes sense.
Jennifer: It does. It does. And I'm just kind of curious. You have this shift in your perspective, has that impacted your relationships with other people from the person of the I hate eczema and being extremely frustrated and feeling stuck and maybe even at times extremely angry. I mean, we go through this full spectrum of emotions at times to now where you are … How has that impacted just relationships, whether it's with your parents or now your fiance or friends?
Ashley: Oh, it's impacted it 100%. I mean, because how I deal with my eczema is the same way of how I deal with my partner, how I deal with my friends, how I deal with my family. And I think that's the big switch that many people may or may not realize is how you treat your eczema could be a correspondence to how you treat other people and more importantly how you treat yourself. And so it goes back to making sure that I'm showing it love when chaos happens in life and even on my skin in the form of flareups, how do I handle those situations? Do I handle it with calmness or do I handle it with anxiety and hate and I don't know what to do next. And so that has definitely worked hand in hand is how I'm dealing with my eczema, is the same way of how I deal with my relationships, both personal, professional, et cetera.
Jennifer: Okay. Well, I wanted to ask you this because you have some amazing content on your Instagram, and you had posted something a Reel specifically, which I will, for those of you listening to this, I'll put the link directly to it in the show notes. But you talked about healing and how healing … and I never thought of it this way to be honest with you. So you even taught me something, that we have these ideas of what healing looks like and that it can change. So can you share a little bit about that? What did healing look like to you when you were in the I hate eczema space versus now being like, “All right, well, you're my friend. You're my best friend.” What does healing look like? And what does that journey look like for you?
Ashley: No, thank you for bringing that up. And this was just something that came up that I just shared right away. When I was growing up, healing looked like clear skin. Healing looked like not having to worry about my eczema. Healing looked like hanging out with my friends, wearing the clothes that I wanted to wear without concern of my eczema. And as I grew into the person that I am now, my definition of healing has changed. It has changed to healing looks like loving my eczema no matter what state she's in. Healing looks like wearing the clothes I want to wear even when I'm flaring up. Healing looks like empowering my community and seeing the light bulb go on for other individuals. So my definition of healing has changed over time. And I hope even through this conversation and those who are listening to this, that you reflect on what does healing look like for you?
How are you defining healing? Because even your definition of healing can be hindering your healing in the first place. So yeah, that is something again that I know I preach on my social media. I share with my support group so that we are constantly aware of our own expectations as to what healing is supposed to look like.
Jennifer: Yeah, I would imagine that it's so empowering to say, “You know what? I could change this.” If we break it down, this is what this whole conversation is about, that these things that we take as we assume they are, it's like this is how it is, it's a fact. But you said no, it wasn't necessarily a fact. Maybe it was your mind telling you it was a fact. Because I never thought to ask myself these questions. When you said this, I watched your reel. And for anybody who's not on Instagram, it's like a video. I watched that 10 times and I was like, “That is such a powerful thing to realize that you could change the definition and choose what you would define as healing.”
Because, I mean, agree. When my hands were covered in dyshidrotic eczema, I just wanted it to go away. I hated the way my hands looked. I was so embarrassed and ashamed by it. I almost dropped out of grad school because I was like, “Who's going to want to work with me? I clearly look dirty and gross.” I had all of the worst negative things to say about myself because I thought that that embodied this awful side of me. And it wasn't. There's just something about what you have shared here. And this goes, to be honest with you, beyond eczema. I feel like anyone listening to this conversation, whether they have psoriasis or they have hives or rosacea or whatever, this is something that people could connect to.
Ashley: Absolutely. There's this quote that I always share, and it goes into saying there are a lot of people who are walking around with clear skin who are not happy, which goes back to show that clear skin does not equate to happiness. So what does make us happy outside of clear skin? What can we work on while we're dealing with our flareups, while we're managing it on a day to day basis, what can we work on outside of our eczema that will bring us joy? And I think one of the things that really has supported me up until now is that I'm doing the things that I love to do, even though I have eczema, even though sometimes I'm flaring up because it's in those moments when I'm doing it that I feel like my eczema goes away. I don't feel itch. I don't feel ugly. I don't feel any of that negativity. I just feel presence and love and joy and beauty.
So how can we try to imitate that in our environment on a day to day basis? How can we create an environment that really brings us joy, including in our careers, including in our relationships, including in our finances? Because as we know, stress is a huge trigger for many of us living with eczema and other chronic conditions. So how can we ensure that we're setting up a calm, peaceful, joyful environment?
Jennifer: And part of this has been you starting a support group, which is an amazing community. And I was a guest one of the weeks. But what prompted you to start a support group? And if someone's listening out there and going, “Wait, there's support groups for these types of things?” Why might a support group be helpful for someone going through this?
Ashley: Yeah. I actually just came back from a conference and someone on a panel said that 50 to 80% of individuals living with an illness don't know that there's support out there. And so this is a great example to showcase. There is support out there. For me personally, I chose to do a weekly support group at the beginning of this year that honestly has humbled me and brought me so much joy in a way I could have never really expressed because anyone that is here with me now and has joined me all the way up until this point, I feel like I have seen them grow and blossom and see how their relationship with themselves, with their family, with their eczema has changed just because we're able to talk it out. And so sometimes we'll talk about anything. We'll talk about relationships, we'll talk about intimacy, what that looks like when dealing with eczema. We'll talk about insurance and getting access to care.
And so it's just really depending on what the need of that support group is at that moment. And I'm just there to support and facilitate the conversation and ensure that everybody is feeling heard, that they are feeling empowered, so that even after the support group, now they can feel empowered to go to the doctors and possibly ask for a specific treatment. Now they can go to their insurance and fight back whatever it is, but making sure that they feel empowered outside of the space.
Jennifer: And also to be able to talk to people I think that really get what you're going through. Because one thing I've learned, and I don't know if you've had this experience, is that not everybody … You have to talk to the right people and share with the right people. And sometimes we want to share, but we're sharing to the wrong people who don't necessarily support us in our lives. And sometimes it can be apparent or somebody close and we want them to support us but they may not have the capacity to hold space for us in the way that we need. And having a support group can be so powerful in being able to just share, to get it out what you need to say without feeling judged or ashamed or even that somebody wants to fix it.
Ashley: Right. We're all very vulnerable. And it's one of those things, even from the very beginning in January when I put this together, our first meeting, it almost felt like I was meeting cousins and it felt like family right away. That's how the Eczema Expo always feels for me. It feels like a family reunion even though I haven't met most of these people. But it's one of those things where as soon as you're in the same room with someone who you know has the same condition as you, there's a level of connection that is just inexplainable. It's deep and ingrained into our bodies. And that's the power of having a support group where we have shared things in that support group that I would not necessarily feel comfortable sharing with my partner, with my family, with my siblings. But that is the power of being in a space where people just get it. We understand.
Jennifer: Yeah. And it's just a beautiful, beautiful thing. I just want to thank you so much for coming on here today and sharing what your journey has looked like. Like I said, it's just been such a pleasure to get to know you and going from, we were Instagram friends and then meeting at the Eczema expo and meeting your fiance and just getting to see you in action in so many different ways has just been incredibly … I really am grateful for this whole community and I've already encouraged my listeners next year in 2023, Eczema Expo will be back. The details are not out yet, but stay tuned. But if you are struggling with atopic dermatitis, I think it's a great opportunity for kids and adults, and I just am so appreciative that you were willing to come on and share today and people can connect with you.
I know that you've got your Instagram account, but then you've also got your own website, ashleyannlora.com. Is that the best way? And I don't know when someone will hear this, so if you are still running your support groups, is your website probably the best way to stay in touch around the support group situation?
Ashley: Yes. My website as well as my Instagram, just because I feel like the majority of my audience is on Instagram, and that's where I really share tips and even my own personal journey of living with this condition. And so either one works for sure.
Jennifer: Awesome. Well, thank you so much for being here today.
Ashley: No, thank you, Jennifer. I appreciate it and I appreciate you.
Well this is another way to see eczema. Very interesting.