Finding Freedom Beyond Food with Jenna Gestetner

With only 14 foods she can eat safely, Jenna Gestetner could have built a life defined by restriction. Instead, she’s chosen to create one rich in joy, connection, and possibility. Living with MCAS, POTS, and multiple food allergies, she shares how she’s learned to honor her body’s needs without letting her diagnosis dictate her happiness. In this episode, Jenna shares how she navigates the mental health aspects of her medical needs, and why she focuses on what she can do rather than what’s off-limits. Her story is a bright reminder that thriving is possible and has little to do with how much is on the menu.

Find Jenna on all social media platforms @jennaxhealth
About me | Jenna x Health

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com

Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com

Transcript

Jenna Gestetner: 0:00

What if it's a possibility that you don't have to be afraid of things? What if it's a possibility that in a couple of years I could eat every food? What if it's a possibility that. Even though I got sick a few weeks ago and now my symptoms are worse, that tomorrow I could wake up and those symptoms could be back to the way it was before. Like it's, it's not dismissing the fact that that's my experience and that it's frustrating and that part of my brain wants to think in the negative way of like, well now this is my life. Like part of me wants to think that way. And okay, that's fine, but like also there's a possibility that that's not the case.

Speaker: 0:34

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..

0:55

Today we're continuing on the birthday theme from the summer and inviting Jenna Gestetner. You guys know her on Instagram as Jenna X Health. She just recently celebrated her birthday, Jenna's on the show here today to talk to us about living with any kind of chronic illness doesn't have to mean a small life. She lives with MCAS POTS and multiple food allergies, leaving her with just 14 foods on the table that she can eat safely. But what's remarkable is how she's chosen to focus on what's off the table. In our conversation, Jenna shares how she's learned to honor her body's signs and needs, build a full and rich life beyond the limits of her diet and protect her mental health. Along the way, we talk about creating joy that isn't centered on food, leaning into the things that she can do, and how she has cultivated a strong mindset and self-awareness to help her thrive despite her chronic pain and fatigue. Whether you live with food allergies, chronic illness, or know someone who does This is a conversation that will lift you up.

Amanda Whitehouse, PhD: 1:52

Jenna, thank you so much for joining me here on the podcast. I'm so excited you have such a unique story yeah. Thank you so much for having me. I'm so excited to talk with you. I appreciate it so much. I know it's, it probably gets tiring to give the spiel, how do you tell people about yourself in this like food allergy, medical kind of space

Jenna Gestetner: 2:09

I am 22, I'll be 23 soon. Um, so I just graduated from college and you know, I've always been very passionate about health and that's always been something that's been huge in my life and contrary to what a lot of people believe, because besides doing social media, I also work in healthcare and most people think I work in healthcare because of my health. But it was sort of the other way around. Um. You know, I, I've always loved health, like I said, and I've just always found it really interesting to be able to work in healthcare, to really help people. I think that's always been my, my life's purpose and, you know, I was working in healthcare and simultaneously starting to have these issues with my health and. Really figuring out how to navigate what was happening. I was having so many different random, complicated symptoms, not knowing what was happening, and it was hard. It felt very lonely. It felt very confusing. It didn't feel like I knew what to do or where I was going or what kind of answers there could be for me. And I think working in healthcare really did help me give me the tools to navigate that. And so. When I was about halfway through college, uh, somebody as a joke said I should post a video talking about how I can only eat nine foods. It was nine foods at that point. Now it's more than that. But you know how it, to them, it was interesting that there was so many foods that I couldn't eat that, you know, it was easier to list the ones I could. And I was like, nobody ever would ever want to listen to that. And that was the first time I really challenged that belief and I ended up. Posting something about it and it went viral and within a couple of weeks I had, or even a couple of days, I had 10,000 followers. And that really just showed me how many people are truly not only one interested, curious, um, but also how many people can actually relate. I had never met somebody else with the same condition or even a similar condition or a similar experience in my everyday life. And it was really valuable to. Um, you know, be seen by so many people in that way. Um, but the irony of it is, is that they were finding the content interesting because the content I was sharing was making them feel so seen. So, you know, it's that two-way relationship of like, we're both doing that for each other.

Amanda Whitehouse, PhD: 4:25

Right. That validation is so valuable from someone who knows and who understands something similar to people. So that's amazing you didn't set out to be like a social media star. You just posted a little thing and it blew up.

Jenna Gestetner: 4:36

No, and I've always loved making content. I'm a very creative person. I would describe myself as a creative entrepreneur. Like everything I do, I do so many different things. Like I said, I work in healthcare, I do marketing. I have a marketing agency for healthcare companies, and I also create content on social media. But really. I, I loved creating content. I loved being creative in that way, and taking photos, taking videos, and editing them together. And so really the only new thing was that I was sharing my life publicly online, which if you would've asked me five years ago, if I would've been doing that, I would've said, absolutely not. You're absolutely insane. And now I couldn't imagine my life any other way. Wow. So what was that first post?

Amanda Whitehouse, PhD: 5:15

Just listing the foods that you could eat?

Jenna Gestetner: 5:18

No. So there was like a. A time period before that. So what actually happened was I was in a class where we had to make a video for our assignment. It was a filmmaking class, and my group decided to make a video talking about the foods that I can eat and why that was the case. And so that was what sparked that initial curiosity around the topic. And then know the idea around sharing my life online or sharing these things online came up. And so two to three posts were. Different thing. You know, this is like about health, what whatever it was like, I was just getting comfortable with what you even say when you bring out your phone. What do you even say when you're talking to your phone to post publicly to everybody in the world? Like, um, that and. My first video that did sort of well was a more trending style, a trend that was happening, uh, and I, my take on it was around pots and how like I eat a lot of salt, like an outrageous amount of salt. And that was the first time I realized that, that there is so much value on social media of other people having the same experience as you and being able to relate even when it is sort of funny. And I think I. I like to be very lighthearted about things and very positive and just take a positive spin on things. But I also definitely do think that humor is part of my coping mechanism. And so when that took off, I made another video, describing what I eat in a day as somebody who can only eat nine foods. And that was the one that really took off and really started, this journey. Yeah. So

Amanda Whitehouse, PhD: 6:55

before we dive into that, would you mind telling everybody what did you go to school for and what's your, healthcare work?

Jenna Gestetner: 7:01

So I originally started working at a big hospital system and I was working in their innovation department. So I was working with these new companies that were creating solutions to help people in so many different ways. Some of them were tech solutions, some of them were surgical devices. Some of them were like staffing platforms. So many different things. But I had always been passionate about healthcare, but. Knew that I didn't want to be a doctor or a nurse or a practicing clinician. I didn't want to have that kind of interaction with patients. And I honestly just disregarded that passion in of healthcare because I really thought that was the only option. And so having that internship in high school was the first time that I saw this whole other side of healthcare. And so. From then I knew that was what I wanted to do. What I studied is my major was arts technology and the business of innovation, which is really just a fancy way of saying design and business, but I really focused on healthcare and my senior capstone, they don't call it a capstone, but that's basically what it is, was all about basically, researching and understanding and presenting on. Why? I truly believe that the thing that could make the biggest change in healthcare is marketing. I think marketing is a very underused tool in healthcare as an industry, and I think it has the biggest potential to create change because of how much people value community and being seen and being understood. Just like I was talking about what I do with my content, I think companies can do that too. And I think sometimes they don't think they have the power to do that, but they really can. Mm-hmm. And so. I focused on that in college and that's also what I do with my marketing agency.

Amanda Whitehouse, PhD: 8:51

I'm not on that end, obviously I'm in mental health. I don't know a lot about business and marketing, but that seems so true to me of every health area. All of the things that we're gonna talk about today, like food allergies and, and POTS and all of these chronic medical things that people deal with, I think have a marketing issue in terms of getting people to understand new research that's coming out and new practices and what can help them. And would you agree,

Jenna Gestetner: 9:13

yeah, and I think this was something I found a lot in my research as well, which I already had a inkling that this was the case, but I think. Especially in healthcare compared to other industries, marketing has been seen as sort of like an icky thing. Like why are they trying to sell me on something that I, that's like essential to my life or my health? And I think there are two things. One, not every part of healthcare is essential. There are a lot of choices that we make. Even if it's essential for you to take a medication or do a treatment, there might be multiple options. And I think it's company's jobs to present those options in a way that's exciting and enjoyable for us and to educate people. And I don't think marketing has to be all sales. It's, it's education, it's community, it's connection.

Amanda Whitehouse, PhD: 10:02

Yeah. And validation, like you said, as part of that connection. So is that what you're planning career wise? Are you continuing on in that route? Do you have a new job that you're starting now, that you've graduated?

Jenna Gestetner: 10:13

I mean, I basically tell people that it's not really that much different. People have been asking me, how does it feel to, you know, be graduated, when are you starting work? And I'm over here being like, I've been working full-time for almost a year and a half already, so not really much is changing besides having a proper weekend because I now actually have the time to take a weekend because I don't have school on top of everything. But I'd say three main things I'm doing now is one is the marketing agency, two social media, and then I'm also starting, uh, another health app, which. We won't get into that, but

Amanda Whitehouse, PhD: 10:41

coming soon. Okay. Coming soon. We will follow you and we'll talk later about how people can find you so that they don't miss that. And you have an accent that sounds to me like you're not originally from Los Angeles.

Jenna Gestetner: 10:52

Yes. So I was originally born in London and I moved to Los Angeles when I was pretty young, and I've lived here ever since. And I decided to stay here for college. I went to USC, so I, I love the weather on the West Coast.

Amanda Whitehouse, PhD: 11:07

Why don't you tell everybody why is there this young woman here who can only, now it's not nine anymore, you said it's up to how many foods can you eat now? 14.

Jenna Gestetner: 11:17

14, okay. And why is that? So I have a condition called Mast Activation Syndrome, and Mast cells are part of your immune system. The most common knowledge around allergies is around histamine, right? And basically what happens is the histamine gets released and that causes all those symptoms that cause an allergic reaction. But in people with mast cell conditions or MCAS, which is what I have, the mast cells release histamine among with hundreds of other mediators that there are. Um, but they release them way too often in response to way too many things that should be safe. It's like your body is misinterpreting things as being dangerous, and so it causes me to react to most foods. But it's not just foods. I react to fabrics. I react to certain fragrances. I can react to temperature changes, pressure changes, so many different things. And it makes me have all these different symptoms that can happen in any system of my body, in response to so many things. And it can change as well, like from one day to the next, I could get sick and it could get worse. And it's very complicated and. I think that's why, one, it's so hard to diagnose and two took me so long, I don't know if I mentioned this, but I had these problems since like basically the day I was born I had these strange mystery unrelated, health issues. But when I was 18, that's when I really got a diagnosis and figured out that these are all explained by MCAS. And you know, it is just so hard because they relate to so many different. Systems of the body, and I think MCAS and Mast cell conditions have gotten a lot more recognition over the past few years. But before that, I think commonly allergists would see allergy symptoms and they either say you have allergies or not. And because I had never had anaphylaxis, my allergy symptoms were not considered allergies. They were considered Sensitivities or intolerances when in reality they weren't, they were allergies. It was my immune system responding, not my GI system, but it didn't get recognized because it wouldn't come up on skin tests.'cause they weren't IgE mediated allergies, which is what all those skin and blood test tests for. They were Mast cell reactions and, and that's what took so long for it to get diagnosed. That's what, you know, makes it so hard to, to see and it is invisible. You can't see that. The old diagnostic criteria was very outdated and I actually wouldn't have met the old diagnostic criteria. So that was part of the problem, was that when I was going to allergist, a lot of them were, even though they, the new diagnostic criteria was approved, they were still following the old one, which I didn't meet. Um, and I believe the new diagnostic criteria might have come out, been published in 2020, maybe 2019. And I was getting diagnosed. Early 2021.

Amanda Whitehouse, PhD: 14:10

Okay. Yeah. And that's around the time when I started hearing people talk about MCAS, even though I've been working in food allergy since like 2012, you know, not medically, but mental health wise. I don't feel like I heard people talking about it until around COVID time, it

Jenna Gestetner: 14:22

seems

Amanda Whitehouse, PhD: 14:22

like. Yeah, exactly.

Jenna Gestetner: 14:22

And I think part of that actually came from, there have been studies done on, uh, long COVID and MCAS and some connections between that. And I think that probably helped the fact that there was being research done on that to bring more awareness to Mars cell conditions.

Amanda Whitehouse, PhD: 14:37

Okay. So despite not meeting the criteria, what was going on when you were really young? That was, that seemed unrelated and unexplainable. I mean, it was

Jenna Gestetner: 14:45

just lots of different things the way that we framed the stuff back then was very different because we didn't have this information. But now looking back, it was. You know, having a lot of eczema and, and having very sensitive skin, having a very sensitive stomach. Um, always reacting weirdly to things. When I was a baby, I couldn't tolerate anything at all. Um, having constant ear infections, always getting sick, like all these, just things that, that just really made me get labeled as like sensitive, But it was never a big problem. It was never severe enough. And that's the thing that I always say, and I think this is a very hard place for people to be in. Um, and I have a lot of empathy for people who are in this place where, and this, I still experience this. Sometimes it's, you know. The problem's bad enough that something should be done and that it significantly impacts your life. But it's not bad enough that anybody feels they have to do anything. It's not bad enough that I'm in the hospital, it's not bad enough that if they don't do something, I'm gonna, have a terrible thing happen, but it's bad enough that if they don't do something, my quality of life's gonna decrease. And I think that's a really hard place to be in because rightfully so, like doctors, they, they don't have the time or the experience necessarily to fix everything. But when there's a big pressure on them and something has to be done, they're more likely to do it than just not really knowing what to do.

Amanda Whitehouse, PhD: 16:09

Yeah. Yeah. You fell through the cracks for a long time. Did did things also get worse at some point when you were older?

Jenna Gestetner: 16:15

Yes. When I was around 12 or 13, things got a lot worse. Before I could basically eat every food with some tiny exceptions, that's when, every month, every couple of months, I would suddenly not be able to eat a bunch of foods. And at that point it didn't make sense. I was like, well, what do you mean? Like, I could eat that food a few days ago. Now I can't. Now we know. That's why in hindsight explaining this is very different than when I was experiencing it and how I would've described it. But, um, MCAS can, the baseline of the condition can level up, and get permanently worse in response to stress on your immune system, whether that's physical or psychological stress. So I can actually pinpoint specific times in my life that were physically or psychologically stressful and correlate that with. Suddenly starting to react to a whole new group of foods.

Amanda Whitehouse, PhD: 17:03

Was it hard to track it down? Was it really clear and immediate when you would start reacting to a new food that that was

Jenna Gestetner: 17:08

called? No. Sometimes it was really hard, and I think that was the mental burden of that was hard as well, because. I would be like, there's something doing this to me. I'd suddenly realized there's something doing this to me, and then I'd realize that this had had actually been happening for months and I hadn't really realized, or I'd considered it my new baseline, to realize that it's not normal to have headaches every day to realize that it's not normal to have stomach aches every day, to realize that, all these different things and things that I didn't even realize, like how bad my anxiety and my OCD was. W actually related to some of that, right? Like now that I don't have that, and a lot of that had to do with this like downstream effect of Mast cells activating,

Amanda Whitehouse, PhD: 17:48

I was gonna say all that. Oh my gosh. All that histamine in the body because so many things that feel like anxiety, what we call anxiety. It's really a physiological response. Who was the miracle doctor who finally was able to help you have a name for what was going on?

Jenna Gestetner: 18:02

There were a lot of. Doctors in the mix. I had seen so many allergists because I, thought that was like the way to go. Around that time I'd heard about Mast cell conditions and so I was sort of pursuing that in a way. But I had been shut down so many times and I definitely was very discouraged and my pediatrician, who I had really trusted, and she's an amazing doctor and. I came to her one day and, and told her that I truly felt like my intuition. I knew that all of this was connected. Um, and she basically said to me, she turned around and went, you know, Jenna, you'll never find an answer that explains everything. And she said that point blank to me. And that was one of the most shocking things I had heard, because I had never expected her to say that. And that definitely discouraged me. And it wasn't until I saw, This gastroenterologist I was just seeing him for general things. It was not to diagnose this problem because I didn't think there was a problem at that point. I'd been, you know, told that that wasn't the case. And from the moment that I stepped into his office, I knew that experience was going to be different from a lot of the other doctors. I'd been seeing, a lot of the allergists I'd been seeing. He asked me questions like, what do you think it is? What tests do you want me to do? And really let me lead the, the interaction and the experience, and that made me comfortable enough to, at the end of the appointment, this thing came up into my head or this thing that had happened, and it was like irrelevant. Like it felt irrelevant, but something in me was telling me to tell. So I told him, and it was this thing of where I went for a walk in the morning and I had gotten hives and I'd gone to my doctor,'cause it was during COVID. So my mom wanted to make sure there wasn't anything wrong. She mentioned that sometimes she sees kids get in and usually it just happens once, never happens again. And it's a process in your body called mastocytosis when the mast cells released histamine. And so I went home and as I did, I googled what mastocytosis was. And, you know, I saw that mastocytosis is yes, a process in the body, but it's also a condition. And I read about it, but I knew I didn't have that. And so I never thought about it again. But then when I had said that to him, to this new doctor, I said to him, you know, this thing happened. It's unrelated. And he's like, no, no, no. I want, I want to hear. And we were actually about to walk out of his office and he, he went and sat back down because he, he wanted to listen to me. So I told him this and he, and as soon as I said the word mastocytosis, I saw a light bulb go off in his head and he turned around to his assistant and he said, can we order one more test? And he asked if that was okay. He asked permission, he said, is it okay if I order one more test? And he explained why. He said, there's this condition called Mast cell activation syndrome. And it sounds like a lot of the things that I'm saying could align with that. And he warned me that it's rare and that. Even with people who know they have MCAS, sometimes the test doesn't even come back positive. But he was like, I just won't order this. Like we're already ordering all these other tests, might as well. Long story short, it came back positive and I found he was like, look, I am not an expert. I can't diagnose you with it, but I think this is a really good start. And if it wasn't for him, I would've never. Found a doctor who could diagnose me. During COVID I found an MCAS specialist, which at the time was very difficult. Now there are a lot more people. At the time I found two, one in la, one in on the east coast, and the LA one had like a nine month wait. So yes, I did end up flying, flying to New York in the middle of COVID.

Amanda Whitehouse, PhD: 21:33

It was probably worth it though, to get some answers finally, after your whole life of wondering. So I follow you on Instagram. I'm too old. I'm not an Instagram person. I wanna sit down and like talk about the whole thing. So people will see a lot of this in your content, but can you just describe to us day-to-day life now that you know what you're dealing with, how well managed is it, and what do you have to do to stay feeling as healthy and well as you can?

Jenna Gestetner: 21:56

I think in the past year I've really realized how much of an impact your mind and your psychological, mental, and emotional health has on your physical health, especially with stress. I've always known that I've had anxiety, and I think that anxiety gave me this sense of control that I really needed, and that sense of control is the only thing that I felt was keeping me safe. And it made my life very, well, I, I felt like it was very good, but it made my life very, what's the word? I mean, look, I probably would've said consistent, but now looking back, I wouldn't use the word consistent, I said no to a lot of things, especially in college. I said no to a lot of things. I felt like I couldn't do a lot of things. I kept myself very sheltered because I was worried that anything I did outside of my daily routine could be a risk. And not only did I feel like it could be a risk, but the mental burden of trying to figure out, like say I did do something different out of my routine and then. Something happened, it triggered a symptom or something, then I would rack my brain and spend all this mental energy trying to figure out what it was, and that was exhausting. And so I just decided that it was better not to do things. And I think over the past year I've really acknowledged that there are a lot of experiences that I had, especially around the time where I was having these problems and they were getting worse and I was getting diagnosed that I developed these unhealthy ways of thinking or ways of coping, um, that at the time, like I'm not, and I don't try and think of them negatively. Like I don't try and, say, oh, I shouldn't have done that, or I shouldn't have been that way. That that is what I needed to do at the time to keep myself safe and feel like I was safe. It was a co like that's what a coping mechanism is, right? Um. But just realizing that I don't need them anymore. About a year ago I had this moment, or you know, it was like over the course of a month, but these moments of realizing that I'm in a place now where I don't need those anymore. I don't need those things to protect me. And that's not to say that my health is so much better. Like honestly, my health is similar, maybe even a little bit worse, but I've realized that. No matter what my health is at, I can make my life better by working with my brain and working with what I have. Like the example that I always like to use is, I like the control thing. I've said this many times. You wrote 10 down. I like control. It is a very natural human response. It's just to validate that for everybody. We all feel better when we have control. Exactly. But I realized that I was getting very, this was probably my second year of college. I realized like how hard it was for me that I was constantly felt like my life was outta my control. Symptoms were getting worse. I'd get sick. I got COVID and I got really bad, like MCAS flared up, pots flared up all this. I felt so out of control, so I realized. Okay. I can't ruminate on trying to get myself that control'cause I'm not gonna get it. Like, gotta just surrender that. I'm not gonna have that. Okay, so how else can I give myself control? So I started developing these habits in my life and changing my lifestyle, like going for a walk every morning. First thing I do, go for a walk, whether it's one mile or three miles, whatever I can do, it's something because one that gives me that sense of control. It gives me that sense of routine, it gives me that sense of consistency. Also, I know going for a walk is gonna make me feel good, even if I wake up not feeling that good. I know it's the best thing for me. You know, small things like that, that I implemented into my lifestyle, that gave me that control because I knew I needed it. It's like acknowledging that I need the control, not trying to push away the part of me that needs that, but doing it in a way that is actually

Amanda Whitehouse, PhD: 25:52

realistic. Right. Distinguishing what between what you can and what you can't control. Yeah. And then controlling the things that you do have influence over that can have a positive effect on you. So simple, but it's such a struggle for so many of us because of course we wanna control that uncontrollable thing. Right?

Jenna Gestetner: 26:08

Yeah.

Amanda Whitehouse, PhD: 26:08

Do you think it's the extreme nature of what you were dealing with that forced you to realize like, that's just not gonna happen. I'm never gonna be able to control this?

Jenna Gestetner: 26:16

Yeah, I think it is.. I would consider myself to be in a pretty good place right now, and it's really easy to. Think back and think, well, why didn't I adopt this mindset before? Why didn't I think of this before? Like, somebody listening, being like, okay, well then why can't I think that way? I don't think you can just tell somebody to make these switches. I think you have to really be ready. That's just how it is. I think you can put yourself in a position to be ready for that, but ultimately it's just like this switch that happens in your brain. And I think just being open to that happening like now, I've had that a lot more because I'm just open to it happening., I'm open to allowing myself to change my life instantly.

Amanda Whitehouse, PhD: 26:57

Yes, and that's such a good point. I can attest to that as a psychologist, obviously sitting and talking for people for long periods of time where I can see that from the outside. But of course it's so complicated inside from the perspective of as a parent, for all the parents listening, you can't just say this to your kids or make them listen to Jenna talk about it here and have it magically click. It has to be at the moment when their body and brain and emotions are receptive to it. So thank you for pointing that out. Forcing optimism and positivity and choice on someone is not effective or really soothing.

Jenna Gestetner: 27:28

I think the mindset shift that's helped me is like that. It's a possibility it's not the option, it's just a possibility. you can be healed. What if? What if it's actually a possibility? What if it's a possibility that you don't have to be afraid of things? What if it's a possibility that in a couple of years I could eat every food? What if it's a possibility that. Even though I got sick a few weeks ago and now my symptoms are worse, that tomorrow I could wake up and those symptoms could be back to the way it was before. Like it's, it's not dismissing the fact that that's my experience and that it's frustrating and that part of my brain wants to think in the negative way of like, well now this is my life. Like part of me wants to think that way. And okay, that's fine, but like also there's a possibility that that's not the case.

Amanda Whitehouse, PhD: 28:13

I love that. I love the way you're describing it to me it has that idea of like forcing or resisting versus acceptance and then allowing for two things at once you're talking about holding space for both of those at the same time, which is hard, but I think that's why what you're doing is so effective for you. Yeah. I work with a lot of people managing food allergies, and it feels hopeless. It feels terrifying. They feel very much like it's overwhelming what's on my plate in terms of how this affects my life, or what's different about me, or what my needs are compared to other people.

Jenna Gestetner: 28:45

I think there's two parts to it. There's like the internal part of you and your life, how you feel about your life, and also the people that you surround yourself with. I think starting to really understand yourself.'cause I truly believe, like in everything that I do, whether it's like personal work, everything, communication is the most important thing. So I think learning to listen to yourself, learning to understand like what the symptoms are and also your emotions, and really listening to that and really honoring that. And then also being able to communicate that with other people. So for me, in my life, that means, um, really listening to my symptoms and what my body is trying to tell me, and also listening to how I feel about things, what triggers me, like maybe understand why it triggers me. Um. Because I do think that in the past, and I'm sure people in my life probably wouldn't say this, but at least the way that I feel is like, maybe I wasn't the best friend. Maybe I wasn't the best like daughter or the best sister because I was handling, I was dealing with so much, like yeah, I was impatient, I was stubborn. Having. Empathy for myself in the past that I didn't do that because I was trying to be a bad person or trying to, um, negatively affect or impact other people, but that I was dealing with so much that I didn't understand and that other people couldn't understand and that they couldn't understand because I couldn't understand and articulate it with them, and like really understanding that. And so now trying to change that and understanding what's happening in myself so that I can communicate that with other people and. Hoping that the people around me, and I think that it's a privilege, but also a choice, like surround yourself with people that do understand that and even if they don't, are open to trying to understand that. Um, because I think it just makes your life so much better'cause like you were saying, some people feel hopeless, and I've definitely had moments of that, but it's, again, it's the possibility. It's like, okay, well why don't we just like deal with how we feel right now. Deal with what we can do right now and do it because there's a possibility that this might be something different in the future.

Amanda Whitehouse, PhD: 30:57

That's so well said. Thank you for expressing that. I love all of it, but one part that I think doesn't get said enough is underscoring the importance, why does it matter if I pay attention to how I'm feeling? Right? Why is it important for me to understand what's going on within myself, but how can you possibly express your needs if you can't understand it yourself?

Jenna Gestetner: 31:15

And how can you expect other people to know what you need? If, if they don't, if they don't know

Amanda Whitehouse, PhD: 31:21

Right. They're, they can't figure it out for you

Jenna Gestetner: 31:23

if you can't. Exactly. I always use the example my family has been so amazing now that we all have this information in, in really like sort of like rewriting some of the things that have happened in the past and like and truly proving the sentiment that people do have, like your best interest in mind, and the reason that they might act a certain way that might make you feel upset or make you feel like they don't care is only because there's some misunderstanding going on. And the example I always use is I used to. You know, when I was learning to drive like my dad would we, we'd be going out. Okay. Like you drive, right? Makes sense. Like parent wants the kid to practice to drive common sense. But I would always get really upset because I didn't want to drive and I would say, I don't want to drive. I don't want to drive. He is like, well, why don't you wanna drive? You need to learn to drive'cause I'm tired'cause I'm tired. Like that's an excuse. Right? So that was seen as an excuse.'cause you're tired. Well, everyone's tired. Right. When really what was happening was I had so many of these chronic symptoms and I genuinely was so exhausted, so fatigued, my brain, like brain fog. I really like felt like I couldn't drive, but I didn't know how to express that. And I also think because I had had so many problems that went unvalidated, that I even invalidated them in myself and thought, well, this isn't a problem. Everybody feels this way. Right? And now that kind of situation wouldn't happen because. I have the understanding, which means other people have the under understanding and that, and it's not, oh, you don't wanna do something'cause you're tired.

Amanda Whitehouse, PhD: 32:51

Right, right. But how would you know if Yeah. Every doctor you had ever seen told you that's, that's not what's happening or that's just normal. Everybody feels that way. What, yeah. Adding to that, what else would you say to parents of kids who are dealing with some complicated stuff like this?

Jenna Gestetner: 33:06

You know, I think about this a lot because I wanna have kids and I think about like how I would. You know, approach that. And I think it's about communication. Again, it's like understanding if something's going on that you don't think is normal, it's, you know, they're misbehaving or they're acting outside of who they usually are. I think it's really easy to jump to conclusions, and I think opening up that language is really helpful and. Even if it's not to find the answer or solve the problem, it's like, okay, hold on a second. You're telling me you're tired, but like, can we take a pause? Can we, can we understand? Can you like describe what's happening? Can you, can you tell me more? Like how does this feel? And I think even if it doesn't change the outcome, it took me so long to develop that language. And I think if somebody would've facilitated that in myself. That could have helped me develop that language because the first step is within yourself. Like the first step was me developing that language in order to communicate to somebody else. And I think sometimes the fear is okay, but what if they like make it up? Like what if they're saying they don't wanna unload the dishwasher? And then you go and ask them and they make up more excuses. And what I would say to that is, I don't think inherently children like. Are trying to make up excuses. Um, and especially if you open that language and they genuinely feel that you care and want to help them. I personally, look, I know I've, I was very well behaved child. I, I will admit, like I was always very well behaved, um, and my parents had a lot of trust in me. So I think some of that stuff like did go with that. But I think inherently, especially if you start at a young age. Then there would be no reason to make up excuses because they know that when they need something, their needs will be met. So when the needs aren't as extreme, they don't feel the need to like try and get something out of it because there's that balance there,

Amanda Whitehouse, PhD: 35:16

right? And they know that you're going to listen and create the space. Then they have the room to develop that safely and then they develop that trust in you that you are going to listen and take it seriously When there is something up they're trying to explain and you'll be better connected to your kid to know the difference. Right. You've spent enough time listening to distinguish between that.

Jenna Gestetner: 35:33

Exactly. And I think there's this coping, there's this protective mechanism that I certainly had, and sometimes do still have, but if you are around people that where you know that your needs will be met if something happened. Like I think a lot of people think like worst case scenario, whether they're aware of it or not, when you're around people where you know, if the this worst case scenario happened that you would be fully taken care of, you're much more likely to be open, not only to enjoying an experience, but also to giving some of your resources, whether that's time, energy, mental space, whatever it is. Because you don't have, you don't feel like you have to conserve it all for yourself just in case. And I think that's why a lot of times I was very reserved because I felt like I had to conserve it all in case because nobody else would be there. And that obviously wasn't the case. Like it wasn't that nobody else would be there, but it's that I felt that because I didn't know how to articulate my own needs, so I didn't have that assurance that other people would be there for it. And I think that's like something that we have to remember. Whether it's a friend or a child or really anybody really understanding what that person might be experiencing and not just assuming things.

Amanda Whitehouse, PhD: 36:53

I am sitting here smiling at you as you're talking because I know you've got your plans laid out and you know what you're good at and you know what you love, but you'd make a really good psychologist, Jenna, if you ever have any interest or decide to change gears yeah, you seem like you just have a natural knack and maybe, maybe that's one of those unexpected strengths that you've developed because you've spent some time sifting through all of this,

Jenna Gestetner: 37:13

I do think that that skill has been strengthened because of all of this.

Amanda Whitehouse, PhD: 37:18

Yeah. Yeah. It's, it's obvious. I love the way that you're wording these things, I can tell already is gonna be a good episode, not just for parents to listen to, but like, Hey, let's sit down and listen to this one together. Let's go for a drive. I want you to listen to this girl, Jenna. Because it's different when it's coming from someone like you, like you said, who, who gets it and has lived it.

Jenna Gestetner: 37:34

And I'll also be the first to admit that it's hard to be open and communicate with people. It can be a very vulnerable thing. And like, I'll even say that. I think part of the reason my parents and people in my family, or even my friends or people in my life have so much of an understanding now is because of some of the work I've done with social media, whether that's like they see a video of me talking about something that I probably wouldn't talk straight to their face about or. Like on a podcast and they'll listen to it and they'll say something and I'm like, wait, did I tell you that? And they're like, yeah, you said it on a podcast. And I'm like, that's crazy that I like told however many people could listen to this that, but I wouldn't tell you. I just think it's, it's sometimes it's hard to do that and it's hard to challenge like beliefs of a situational beliefs of what somebody else might think or what you might think. But I can promise that. It's worth it and if there's like a bad response to it, then it's actually worth it because then you know that person. It doesn't have your best interest in mind.

Amanda Whitehouse, PhD: 38:34

Absolutely. Uh, you make a great point too, about the power of indirect communication. You know, you're talking about listening and, but sometimes it's really hard, especially for kids, but for everybody, if someone just sits down and says, tell me what's going on, how are you feeling? Right? And for you, you found that indirect way to say it through some of the social media work that you're doing, but with, with kids, to allow them to write it down to play with kids indirectly, I think touches on what you're saying Letting it out in a way that feels a little bit less vulnerable because Yeah, it's hard to just sit down and pour it all out right to somebody. Yeah. We haven't talked about the POTS piece of things yet. Do you mind sharing a little bit about that piece of

Jenna Gestetner: 39:11

things? Yeah, so I use the term pots because it's what is well known, but. I would say that my symptoms more align with like the general dysautonomia. So dysautonomia is like the umbrella term that POTS falls under. Um, and for anybody who doesn't know, dysautonomia is, the dysfunction of your autonomic nervous system. So the autonomic nervous system controls all the things that happen without you trying, like breathing, digestion, heart rate. All those different things. And pots is postural orthostatic, orthostatic tachycardia syndrome. So essentially, you know, when you go from sitting to standing or you go from lying down to sitting up, your heart rate tends to, spike much higher than most people's and it can cause an imbalance in your system. And oftentimes that's due to different factors like blood pressure and, all these different things. The way that I see it and what I've been, I know some people believe in, different theories or, based on different evidence that they've seen, but how I see it, is that it's very connected to MCAS and that, there are Mast cells everywhere, nobody including in the lining of all your blood vessels. And I definitely noticed that when my MCAS flares up, my POTS symptoms flare up and it's directly correlated. And that oftentimes an MCAS flare up or Mast cell reaction for me includes OMI symptoms. And yeah, it definitely affects, a lot of things in my life. And it affects generally like the way that I feel, the way that I live. It can affect my energy levels. It also can affect like how I feel mentally. Especially when I feel like your heart rate, blood pressure, all these different things are spiking in you having these like. Adrenaline spikes and things that can definitely affect like your emotions and the way that you're able to think about things.

Amanda Whitehouse, PhD: 41:00

Yeah. Well, and your body interprets physical symptoms as emotions. So as we talked about before, it's great that there's all this awareness of depression and anxiety symptoms, but sometimes a racing heart symptom is a physical, symptom physical condition. And yet our brain will still go, I feel so anxious and uptight. What's wrong? And try to search for the mental explanation.

Jenna Gestetner: 41:20

Sometimes our brain interprets physical symptoms as more than that, and I had actually been working out like every day high intensity workouts and I felt great. And it wasn't until somebody said something, It made me question, I was like, what if the adrenaline that I get from working out is sort of giving me a false sense of energy and a false sense of like wellbeing? So I stopped working out and the first few days were horrible, felt terrible, and then it started to turn around, around like the second week and I realized, I think what was happening was. My body was so used to having adrenaline pumping throughout my body because of all these reactions and inflammation and this and all this stuff that was happening that I had never really given my body a chance to have a break. And I took some time off of working out. And when I started to go back to it, I noticed that. When I would do any kind of cardio, even like on a, you know, an elliptical machine where it's completely low impact, you can control like how high your heart rate is going by the speed. Even when my heart rate would start to go up a little bit, I would start to have these like adrenaline, like rushes like that, you know that feeling when like your heart, like your chest tightens and you feel that adrenaline and um, and I didn't like it. I was like. I don't like that feeling. Um, and it's been about six months now, and I'm just starting to get back into it with like a real focus on being very mindful of how my body's responding to exercise. You know, practicing things like, uh, the like methodology, um, that comes from like yoga and a lot of those like. Eastern medicine practices where you only breathe in and out through your nose and if you have to take breaths through your mouth, you know, you know you're going too hard to like focus on not putting stress on my body. And that's really helped, but it's also given me like a new perspective on. On what like health is and what healthy things are like. You think exercise is healthy, cardio is healthy. But I think when your body has been in this state of like fight or flight in this state of constant stress, you actually don't even realize it anymore because you're so used to it. And sometimes you need to take that step back,

Amanda Whitehouse, PhD: 43:38

right. And teach your body a new a healthier normal for you. Yeah, but that's so hard because that is so contrary to, working out and exercise and push it harder and transform your body. Right. And especially I would imagine more so for someone your age who's so active on social media, there's so much of that out there.

Jenna Gestetner: 43:58

Yeah. I think that's the funny thing, if people ask like, oh, you create content, what kind of content you create? You know, I'm not gonna get into the whole thing. So I'm just like, oh, I create health content. And they're like, oh, like I'm such a wellness girly, I love going to the gym and taking supplements. And I'm like. Yeah, sure. That's what I, you know, like that's definitely not what I talk about. I think health is so subjective. Like the idea of healthy is subjective. Somebody might look at me and say, you are not healthy. But I think of myself as healthy because to me, health isn't not having health problems. It's about your lifestyle. It's about like the things that you are doing and how you're treating your body, not necessarily like the state of your body. Um, like. I do think some definitions of healthy is like the absence of disease, but I see it as more the way that you're treating your body. Because I would consider myself to be healthy. Um, yeah, I have problems with my health the way that it functions, but I'm healthy.

Amanda Whitehouse, PhD: 44:48

What else do you want people to know about you?

Jenna Gestetner: 44:50

Really everything I do all comes back down to helping people and helping them live their best life and being able to see life more positively and approach it more positively and making them feel seen. Whether that means someone else seeing you or you seeing yourself the interesting thing about my life is that I would say my life is normal, but somebody else might be like on earth. You talking about your life is not normal. And I think. The thing is, I don't center my life around the conditions I have. I don't center my life around the fact that I can only eat 14 foods. Some people love to say that on social media, that that's like my only personality trait. And I'm like, well, you know, you wish you knew me in real life then. Um, but you know, there's a reason I share that online. But in reality, this is literally just my life. Sometimes I forget that like, I mean, I don't forget, I can only eat 14 foods, but I forget that that's like not a normal thing. Like, I forget that you can just go to a restaurant and pick something off the menu. I forget that you go to the grocery store and don't buy the same thing every time. I honestly forget like this is just my life. Like I'm just just living like this.

Amanda Whitehouse, PhD: 45:59

Right. Acceptance like you talked about before.

Jenna Gestetner: 46:01

Exactly Tell people where they can find you. So on Instagram, YouTube, and TikTok at Jenna X Health and anywhere on the internet, I guess.

Amanda Whitehouse, PhD: 46:12

Wonderful. Your mindset and your positivity tricks I think, are gonna resonate with a lot of people. So appreciate you so much for being here. I,

Jenna Gestetner: 46:20

I hope so. And thank you so much for having me. I really enjoyed talking to you.

46:25

I hope this episode leaves you feeling as positive as I am after listening to Jenna Not because any of us are denying our challenges, but because we can learn how to live in partnership with our bodies and whatever is unique about them. Jenna's ability to focus on possibility instead of scarcity. To choose joy without ignoring the hard parts is such a powerful reminder that our mindset shapes so much of our experience. I hope you'll take away from today's chat, the idea that honoring your needs and focusing on what's in your control isn't giving up. It's building the foundation for the life that you want to choose. So here are your three action steps for following up with this episode. Number one, I want you to learn to check in with your body, this is a really simple routine that you can start to pause early in the day is better. And notice how your body's feeling. Ask yourself. What do I need right now? And pay attention to what arises in your body and where, and what it feels like or what thoughts pop into your head, and then find a way to follow through. Even if you can't do that immediately, if your body is telling you that it needs rest, hydration, connection, quiet, solitude, movement, those are all things that you can acknowledge and then find the time to do them when you're able to, even if you can't, right at that moment. Number two, if you're not already following Jenna, You can find her, as she said at Jenna X Health. That's her website and her socials. Wish her a happy birthday there and check out her videos if you haven't already. You might find one of my recent favorites, which she just recently shared of her making a three layer birthday cake with her safe foods, which was amazing. And number three, I'm celebrating my birthday with Jenna here as the summer is winding down and if you are finding the podcast helpful, I appreciate you listening and it would mean so much to me If you would rate a review of the show wherever you get your podcasts, and if you would share it with somebody who needs it or share it on your socials, it really means a lot to me to put the time in and to see the show continue to grow and reach more and more people who are finding it helpful. So thank you again for listening. It means so much to me and I'm still basking in the glow of the first birthday of the show, and all of the growth. That has happened in the last year. the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.