Ep. 240: Navigate Discussing Personal Health Information Online

Influencer, content creator, and founder of xHealth Studio, Jenna Gestetner, shares how she tackles sharing her personal health information while fulfilling her goal of helping others. Jenna authentically shares her life with Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), food allergies, and autoimmune disorders.

Resources to keep you in the know:

• JennaXHealth
• Instagram: JennaXHealth
• TikTok: JennaXHealth
• YouTube: JennXHealth
• LinkedIn: Jenna Gestetner

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Transcript

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Caroline: Welcome to FAACTs Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone. I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast.

I am a food allergy parent and advocate and the founder of the Grateful Foodie blog. And I am FAACT's Vice President of community relations.

Before we start today's podcast, I just want to say thank you to ARS Pharma for their kind sponsorship of FAACT's Roundtable podcast.

Today we're sitting down with influencer and content creator Jenna Gestetner, who discusses how she tackles sharing her personal health information online while fulfilling her goal of helping others.

Jenna, in her very authentic signature way,

shares her life with mast cell activation syndrome, POTS allergies, including food allergies and autoimmune disorders.

Caroline: Welcome, Jenna, to FAACT's Roundtable podcast. I'm absolutely thrilled and delighted you are here. I've been waiting all week to talk to you because you're so fascinating and so interesting.

So welcome.

Caroline: Thank you.

Jenna: I'm so excited to be here.

Caroline: Wonderful.

Let's get to know you better.

So if you can tell us about yourself and then how you got here today. You're a recent college graduate and you're a popular social media influencer and you do a lot of interesting things.

So please share.

Jenna: Yeah, well, I guess, I guess technically I am a college graduate as of yesterday. But yeah, honestly, this is something I never thought I would do. I've always been very entrepreneurial, very creative, and I think my whole life I was just figuring out exactly, you know, how can I channel my passions into something that really does feed me and that is exciting and something that I can put all of my spare time into.

And before going to college, I started working in healthcare and my passion was really health innovation because I see that there are so many problems in healthcare. And, you know, a lot of people do think, like, because of what I share on social media about my personal health, that that's where it came from.

It came from my personal struggles, but it actually didn't because a lot of my health challenges that I've been through actually came after I was already interested in healthcare and I discovered this whole side of being able to work on these companies and in this world of innovation to really try and improve healthcare.

And so I started doing that and you know, I went into college thinking that that was what I wanted to do.

And then my sophomore year of college,

I took a filmmaking class and made a video about some of my food allergies. And my teacher was like, why don't you voice over the video and tell people about why you have to eat this way?

You know, tell them more about, about allergies, educate them. And I was like, nobody's interested in this,

but I did it anyways and turns out people were interested.

And that wasn't something I typically shared a lot before and you know, shared how it really affected my life.

And seeing that was very eye opening to me. And somebody jokingly said I should post it on TikTok and didn't take it as a joke. I did post it on TikTok and it very quickly started to grow into something that I could have never, ever imagined with different opportunities,

different people I got to meet and people I got to connect with online and start building a community of people who shared those experiences and the challenges that I was going through that I really didn't get to connect with people on in my everyday life.

Caroline: And now. So for people who are listening, who've maybe not seen your social media, what is it like? Like, what should they expect to see?

Jenna: For me, it's really all about normalizing.

This might not make sense, but normalizing abnormal as a normal life. And what I mean by that is like my life is very abnormal,

but also this is literally just my life. To me it is so normal. And so there's this weird paradox between I live my everyday life, when I'm alone, it feels normal, but then when I go out with other people, there's this disconnect that I feel in relation to other people because I feel disconnected from the situation and I often feel like an outsider.

I feel left out, you know, in a lot of social situations because of the different way that I have to approach something.

But it's not in the way that I feel the need to label it as like being different or being abnormal because this is my normal life. And so it's like bringing awareness to the fact that some people do live a very different life and to them it's normal and to them it's just their life.

And yes, we may use labels like chronic illness or, you know, certain diagnoses as labels to describe something and just to make it simpler in conversation. That doesn't mean that they're one thing and you're another.

Caroline: Absolute music to my ears. That is amazing and fantastic because that is kind of the theme here, right? We live differently, doesn't mean it's bad and celebrate it and find the solutions and just normalize it.

But you do it in such a fun way. There's such humor and listeners. I will make sure in the show notes I have links to the social media because I, I have to tell you, I giggle and at the same time I'm learning.

And that's a gift, I think that's really special and I think you've got a real special gift going on. So this is really exciting for me and other people in this world.

So now on your social media you just share openly and freely about your health conditions, your challenges, your successes,

can't do's and the things that you love to do. I mean you just share everything. It's just such a full gamut.

So can you discuss with us a little bit on how you navigate sharing your personal life online?

What is that like? It's very different from people who get on social media and they post maybe about a brand or they share about some information, but you really kind of get into that grit and so are there challenges or boundaries that should just never be crossed?

So if you can just talk to us about this whole process.

Jenna: Yeah, like I said, I worked in healthcare before and a big part of what I did and the work I did,

I have a marketing agency and I only work with healthcare companies. And a huge thing that I focus on is education and misinformation and disinformation. I think there's so much misinformation out there.

And the interesting thing about the idea of misinformation is that there's not always right and wrong information. And I think when it comes to healthcare there are a lot of extremes of people saying, well, we can only share evidence based information for this reason, you know, and I understand that.

But I also think there's value in personal experience and nuance and something that somebody tries, that somebody else might think is like not proven by science. And,

and that's where I think it gets really difficult because it's like, you know, we want, we want everybody to be able to speak freely online and freedom of speech, we can't stop people from talking, but we also want to protect people and protect people's safeties as much as we can and as much as it is our individual responsibility.

So for me, the general approach I take is that it's about Sharing my experience and my perspective and more about how I approach something rather than what I'm doing. So for example, there's a vlog that I shared one time where I was going to the doctor to try a new medication.

I have mast cell activation syndrome. And so for people who know,

they know what medication I'm trying, it's pretty obvious. It's like the most common one that people try where, you know, you have to go into the office and you have to wait 30 minutes afterwards.

So I'm not trying to hide anything, I'm not trying to keep a secret.

And if you know, you can guess. And I consider that like, that's fine, but it's not the focus because that same experience could apply to so many people in much, in a much broader sense, to many other things.

And so for me,

it's actually more beneficial to share about the experience generally how it makes me feel, what it's like, rather than like this is the medication I'm going to get. These are the side effects.

And I'll mention maybe I got some side effects from it. I might mention that, but I'm not really listing it in that way because my purpose isn't for doing that.

Something that I is a definite must not do for me is sharing medication information and dosages publicly online.

I mean, I think that's one specific thing I see a lot of people doing.

I think that they don't mean harm, but something that I've come to think a lot about is not just the information itself, because, you know, if a doctor gave me these dosages,

then that's like medical information, right? So people think that's accurate, that's safe.

But you can't just think about whether or not that information is evidence based and scientific because you also have to think about the context not only in which you're sharing the information, but in which the person on the other end is receiving the information.

And so even if I'm taking an over the counter medication,

which there are a couple over the counter medications that I take every single day,

I would never want to share that specifically and share that this is the medication I'm on with this dosage. Because somebody else could go out thinking that that means it's safe for them to do and do that, and that could be harmful.

When I'm posting online, that could go to hundreds of thousands, potentially millions of people and I don't know what situation they're in.

You know, if somebody does privately DM me, I'm much more likely to share different information, because I can understand more the context in which they're coming to that situation.

And it definitely is challenging though, because I am very privileged to be able to have access to the kind of care that I have and access to the kind of information that I have.

And I acknowledge that. And that is why I'm able to have the kind of care that I do and have this information.

And so I want to be able to share as much as I can, and I don't want to gatekeep that information.

But I also do really want to be careful about potentially sharing information to somebody who might be in a situation where they might take it in the wrong way, and that might potentially be harmful.

Caroline: That is just so critical that you do follow back up around with, you know, this is your process versus this is what you should do. And here's my dosing and here's my item, because everyone is so different.

And I think that is a fear within the healthcare community that people hear things online and then they take it and run and put themselves in a bad situation.

So that's some really solid advice. And again, I love how you find, follow the process and you share the process, because a lot of people don't talk about that. And that's really exciting to see this new approach in healthcare.

I mean, I think you're very cutting edge. I think this is pretty exciting.

And so now, what tips do you have for people who do share their healthcare journey on social media? I mean, you just gave a huge tip right there. But is there anything else?

Jenna: Yeah, I think one of the things that a lot of people want to do when they're sharing online,

any type of content creator, they want to be authentic, they want to build a community.

And in that, a lot of people say, you know, pretend like you're talking to a friend.

And I think that's really amazing.

But I also think that you also need to think about actually,

you know, who you're actually talking to, which is potentially many different people,

potentially people who are coming from many different contexts and might not have the kind of background knowledge that you do.

And I think it's just about reconsidering what you're saying and taking a step back and considering whether or not that information could potentially be harmful and just being careful, because I think you'd hate to share something and for it to be harmful like that, you know, it's, I think it's,

it's all about just thinking.

It's thinking about it, thinking about it from a different perspective and really Just taking that into consideration.

Caroline: Very solid advice.

Now, have you ever encountered negative or aggressive individuals who've become like, irate with you? And then how do you handle the negative posters or people who might be DMing you negatively?

Jenna: I have. I get a lot of negative comments.

Most of them honestly don't really phase me. A lot of them are expected.

You can't always have everybody like you. You can't always have everybody agree with you.

And that's why I also, I heard this one time that, you know, if you're sharing information online,

what was it they said?

Share about scars, not wounds. And the idea is that you're sharing about something that has sort of already passed. And I try and consider that sometimes, because if I'm in a situation where something is very fresh, I'm still very impressionable on it.

I haven't quite decided for myself what to think. I'm going to be much more impressionable to anything anybody says, not even just negative.

So I consider that when I am thinking about what to share,

I get asked a lot. You know, there are sometimes people that say, this isn't real, or that condition doesn't exist, or this, you're making this up. And the reason that I find that funny and the reason that those things do not faze me in the slightest is because I'm so secure with my diagnosis.

I'm so secure. And this is exactly what,

what I believe and this is what I choose to identify with. And so whatever you say is what you have to say. And that has nothing to do with me.

But that there was certainly a time where I didn't think that and that those kinds of comments might have affected me a lot.

Caroline: Such a positive,

mature attitude. You're wise beyond your years. That's all I have to say. You're very, very wise. It's a really good point.

And so now after following you on Instagram, I mean, you have great humor, which I enjoy thoroughly, and I'm sure the listeners who are already following you do as well.

But you're also very vulnerable. You're very relatable. You have this kind of curiosity about you. So looking at this,

what is your motto for life? Like, how do you stay so focused in that beat? You kind of hinted at it a little bit with that confidence. But what's your motto for life?

Jenna: I think I haven't always been extremely positive and I think there was a, there was a big time where, you know, I would find myself saying things as like, you know, a 10, 11, 12 year old saying things to my parents, like,

when will somebody be able to fix me? Like, you know, when will we find somebody that can fix me? And being in that mindset of, like, feeling very broken and feeling like I was on the outside, and I think that's a very tough place to be in.

And I don't think that is, you know, as easy it is as it is to say, like, switch your mindset. I don't think we always have, like, control over doing that.

And I've allowed things to happen in my life and to get me to the place that I am now. And as much as I've had sudden realizations about the way that I should think about something or approach something,

I know that if I would have told myself that same information five months before I realized it, I probably wouldn't have been able to accept it because I came to that realization on my own.

So I will say that. But my parents, and especially my dad has always been very, like,

positive and optimistic and really helped me focus on what is in my control.

And over the past few years,

I really discovered, like, this other side of health. I think when you're so occupied by,

like, the catastrophic type of care of, like, there's something where I need to fix it, you can often miss out on,

like, the other parts of preventative health because, you know, you're so preoccupied. Rightfully so. But doing these really small things for my health and incorporating habits into my daily life have helped so much.

Even when I've been at the worst place with my health, I've felt the best about my life. And it's just having that consistency and that control that I can give myself, like waking up early every morning.

The first thing I do in the morning is go for a walk.

Whether that's one mile, whether it's three miles, whether it's 10 minutes, if that's all I can do,

it's going for that walk, getting the fresh air, getting some movement. I know that that's going to make me feel good, even if I don't in the morning and not waiting to live my life.

I mentioned to you before we started this after graduating, I'm going to travel for a few months.

I think I've always been scared to do things, and I really did let fear control my life a lot of my time in college. And now that I'm graduating, I don't want to do that anymore.

And that's not to say that I don't still have that fear. And that's not to say that I not do things Because I have that fear. Because the fear is there for a reason.

But it's like second guessing it. When I have that fear, it's second guessing it and questioning it.

It's saying like, is that valid? What's the,

what's the risk versus reward? Is this something I want to do? And just questioning it again and really asking that question and just making it work with whatever I have.

Caroline: What a great motto. I really appreciate you sharing that because there's so many interesting little nuggets to take away from that. But you're just so inspiring, so live.

And I can't believe our time is already done and so our time is coming to an end here. I could just talk all day with you. Well, this has been fantastic.

You're so inspiring and I just can't even believe that our time is coming to an end. I feel like this has just been a blink and I hope to have you back again on the podcast.

But is there anything else that you want to share with our listeners today?

Jenna: Well, I'll add something to what I just said, which, you know, I said I've learned to not wait to live my life and just to do whatever I can with whatever I have now.

And something that I articulated recently and I think I've always thought this way, but really having it concretely said and being able to say this to myself in my daily life has really helped, which is that you can absolutely love your life and love where you are now and still hope and want something different for the future.

I think in society,

especially when it comes to, I'll just give the most concrete example of like health and fitness and physical looks.

People are so bent on hating themselves and hating the way that they look.

And I think that people do that because it's sort of like motivation for the fact that they want to look a different way.

But it's like, who's to say that we can't love the way we look right now, but also have goals and want to actively work on potentially looking slightly differently?

And I just think that's not told enough. And I just want to say to anybody who is listening, not that they need permission, but maybe, maybe they just need to hear it.

Like, give yourself permission to be happy where you are right now,

even if you hope that in the future your life might look differently.

Caroline: Those are just the perfect words to end our podcast.

Thank you so much for your time. Congratulations on graduation.

Have a fantastic trip. I'm sure we can follow on social media and watch your adventures and just again, thank you so much and congratulations.

Caroline: Thank you.

Jenna: Thank you so much for having me. I really enjoyed talking to you.

Caroline: Before we say goodbye today, I just want to say thank you one more time to ARS Pharma for their kind sponsorship of FAACT.

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