Sick Boy’s Jeremie Saunders on Life Post Miracle CF Drug

Here’s a run down of what we discussed in today’s episode: Introduction Life With Cystic Fibrosis Food Challenges With Cystic Fibrosis Trikafta and the Metabolic Shift Becoming a Stranger in Your Own Body Body Changes, CF, and the Rise of #SkinnyTok Diet Culture Temptations and Disordered Eating When Wellness Culture Gets It Wrong Why “Natural” Isn’t a Moral Flex Humour as a Tool for Coping With Chronic Illness Self-Compassion Through Body Changes Gratitude, Growth, and Moving Forward Check in with today’s amazing guest: Podcast: Sickboy Instagram: @jeremiesaunders Youtube: /sickboymedia Disclaimer: The content in this episode is for educational and entertainment purposes only and is never a substitute for medical advice. If you’re struggling with with your mental or physical health, please work one on one with a health care provider. If you have heard yourself in our discussion today, and are looking for support, contact the free NEDIC helpline at 1-866-NEDIC-20 or go to eatingdisorderhope.com. • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •✨ Reach Your Weight & Health Goals — Without Dieting! Pre-order The Hunger Crushing Combo Method, Abbey’s revolutionary additive approach to eating well. Learn how to boost satiety, stabilize blood sugars, reduce disease risk, and improve your relationship with food — all while getting the best nutrient bang for your caloric buck. With 400+ research citations, cheat sheets, evidence-based actionable tips, meal plans, and adaptable recipes, The Hunger Crushing Combo Method is the only nutrition bible you’ll ever need. 👉 Pre-order today! 🛒 Where to Purchase: Amazon Barnes & Noble Amazon Kindle Apple Books Google Play Kobo Apple Books (Audiobook) Audible abbeyskitchen.com/hunger-crushing-combo • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •✉️ Subscribe to My Newsletters: Abbey’s Kitchen Newsletter 📘 Check out my FREE E-Books: Hunger Crushing Combo™ E-Book Protein 101 E-Book 👋 Follow me! Instagram: @abbeyskitchen TikTok: @abbeyskitchen YouTube: @AbbeysKitchen Blog: abbeyskitchen.com Book: The Mindful Glow Cookbook • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • 🎧 Don’t forget to subscribe on Apple Podcasts, Spotify, or wherever you listen — and leave us a review! It really helps support the show ❤️ 💬 If you liked this podcast, please like, follow, and leave a review — and let me know who you’d love to hear about next! ⭐ ⭐ ⭐⭐ ⭐ Learn more about your ad choices. Visit megaphone.fm/adchoices

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Speaker 00

  Now, more than ever, we need someone on our side. But Rob Whitman? Whitman's votes drove up costs, cut Medicaid, and risked 350,000 Virginians' health care to pay for tax breaks for himself and his donors. He's not on our side. Shannon Taylor will fight corruption, cut taxes, and bring down costs. This November, vote for Shannon Taylor. She's for us. Paid for by HMP, the HouseMajorityPac.com. Not authorized by any candidate or candidate's committee.

• 0:31Speaker 01

  There is this cloudy, confused version of ourselves that we see. When all of a sudden you wake up and your body is drastically different. That is a really jarring experience.

• 0:48Abbey Sharp?

  Welcome to another episode of Bite Back with Abbey Sharp, where I dismantle die culture rules, call out the charlatans spinning the pseudoscience, and help you achieve food freedom for good.

• 1:01Abbey Sharp?

  Today, I am very excited about our conversation and guest because I recently had the pleasure of appearing on his podcast, and we had such an amazing conversation. So I'm very excited to turn the tables and learn from him.

• 1:17Abbey Sharp?

  Today, we're going to be talking to Canadian actor, podcaster, and cystic fibrosis advocate Jeremie Saunders of the popular podcast Sick Boy, which builds on Jeremy's experience with cystic fibrosis in discussing living well with chronic disease. This conversation is not only relevant to folks who have been personally affected by chronic disease, but we're going to be talking about the disorienting experience of rapid body changes as it may relate to medication, illness, or stages of life. And I'll be offering some support on how to navigate this experience with compassion and grace. Now, a quick reminder that I would really appreciate if you would give Bite Back a follow

• 2:00Abbey Sharp?

  on Apple, Spotify, or wherever you get your podcasts by pushing that little bell icon so that you get notifications in your app when we've released a new episode. Also, my general disclaimer here that this content is never a replacement for personalized health care advice, and also a heads up that we will be briefly touching on disordered eating themes. So keep that in mind if deciding whether or not this episode is right for you. All right, let's get into it.

• 2:32Abbey Sharp?

  All right, Jeremy, so nice to talk to you again. I had just such an amazing time on your podcast, Sick Boy, and I'm just really excited to continue our conversation today.

• 2:42Speaker 01

  Yeah, me too. Thanks for, thanks for having me. And also, thanks for putting up with me and Taylor on that conversation on Sick Boy.

• 2:49Abbey Sharp?

  Oh, no, I loved it. I loved it.

• 2:51Speaker 01

  We had a lot of fun.

• 2:52Abbey Sharp?

  Yeah, the, the, the talk, I, I was really thrown off by the, the IVF drink come to, to get pregnant. I was like, we didn't try that. Like, all the research I did, like, I don't even think I'm that gullible, but like, I was really diving deep into like, did I read that somewhere? Like, did I just decide it was a no-go? Like, I wasn't like, it was like, no flies now. Like, I was just like, no, no, no, we'll just, we'll go straight to the, the $10,000 IVF before we try drinking come.

• 3:21Speaker 01

  I think my favorite part of that was, so I do that, I mean, this is a consistent thing I do to Taylor quite often on the show is I'll say, I'll say a complete, full-on lie about Taylor to our guest. And usually Taylor's response is to step in and go, that's not true. And he's, and, and I think he got the point this time. And finally was like, you know what, I think it's funnier if I just don't say anything. But then I started to realize, I was like, oh, no, I think Abbey might have bought that.

• 3:51Abbey Sharp?

  I fully, fully bought it. I mean, to be honest, like, Eddie, like, you know, for, for, for my friends who are listening, who've been in the IVF or the infertility world, like, you know that the things that we see in like Reddit threads and like, you know, Facebook groups to do is just so wild. And, you know, you're just so desperate. You're like, oh, yeah, that's, I'll try it. Like, whatever. So I was totally like, I wonder what that does.

• 4:17Abbey Sharp?

  Well, today, we're not going to talk about drinking come. Unfortunately.

• 4:23Speaker 01

  You might not be. I can't speak for myself.

• 4:25Abbey Sharp?

  Right, right. Who knows where the rest of your day is going. But, okay, so like, I wanted to kind of dive in. Obviously, you need to kind of catch some folks up to speed. Because I love your podcast. I love how you approach the challenges and, and the, the, the, the world of like, living with chronic disease with like, humor and light, which I'm just, I'm sure it's just so helpful for so many who are listening. And you're diagnosed with cystic fibrosis in infancy. So this is something that you've, you know, been living with virtually your whole life. For those who have never heard of cystic fibrosis, do you want to give like a quick little elevator pitch as to what it is, what it entails?

• 5:07Speaker 01

  Sure. Yeah. I mean, I think the, I think the like, the most common elevator pitch is it's a genetic lung disease. That's what most people will know of or hear when they, they think about cystic fibrosis. But in reality, it's actually, it's, it's a little bit more complex than that. A little bit. I'm not a doctor, so, so take what I say with a grain of salt, but it is a genetic disease and it's a disease that affects the entire body, multiple organs within the body. Pretty much any of the organs within the body that produce mucus are affected. So it's, it's mostly most commonly known as a lung disease because of the, the, the typical

• 5:48Speaker 01

  symptom of cystic fibrosis being that your lungs fill with this thick, sticky mucus and that mucus provides a breeding ground for bacteria and leads to the, the slow progression of the lungs starting to lose function to the degree where eventually they just stop working entirely. But also a big part of, of living with cystic fibrosis for a lot of CF patients is the fact that the pancreas is also affected. And so what's happening there is that due to this genetic mutation in my body, my pancreas does not produce the digestive enzymes required to break down food, to digest food. So every time I eat, I need to take oral enzymes

• 6:32Speaker 01

  in order to replace the enzymes that I don't produce. And then another interesting fact about the, the sort of malabsorption nutrition problems that CF patients have, that mucus that lines the intestinal tract also prevents the body from being able to absorb a lot of the nutrients that I would take in, right?

• 6:53Abbey Sharp?

  Right.

• 6:53Speaker 01

  So, yeah, that mucus is kind of just all throughout the body and it causes a buttload of, of interesting problems. A little, and I'll, I'll wrap this up by saying one little kind of interesting tidbit that maybe not a lot of people know is A very high percentage of of people born with CF, specifically males, I think it's 98% are born are born sterile because we are born without a vas deferens. So the vas deferens doesn't actually form in utero, which is a part of cystic fibrosis. So yeah, CF is it's a lot more than just a lung disease, but if you were to kind of give it the high level overview, a lung disease with some malabsorption issues.

• 7:34Abbey Sharp?

  Right. And speaking of, I mean, obviously, that that's kind of where I come in because, like you said, like nutritionally, one of these implications of cystic fibrosis is that it can result in failure to thrive and malnutrition and growth restriction and generally just a a lot of difficulty gaining or maintaining weight because again, you're not absorbing those nutrients that you're consuming. So take me back to kind of your childhood, young adulthood, living with cystic fibrosis before we had terkafta, which, you know, is the new cystic fibrosis miracle drug, and we'll talk about that soon. But I'm curious, what did your kind of relationship with food and your body look like growing up?

• 8:19Speaker 01

  My relationship with food growing up was, it was pretty fun.

• 8:26Speaker 01

  Some might say. My relationship with weight was always one where I struggled. So, you know, in the bodybuilding community, which I am not in, I would be considered a hard gainer. I have a really hard time gaining any weight. So for me, I mean, my entire, really, my entire life up up until maybe three years ago, I have my, my, my primary sort of objective is to maintain weight. Losing weight, very easy, but I'm going to try to not do that as much as I can. Gaining weight, next to impossible.

• 9:03Abbey Sharp?

  Right.

• 9:04Speaker 01

  I was basically told my entire life to live by the the CF diet. And the CF diet, because of this malnutrition issue, is high fat, high calorie. And and to the degree where where my my medical professionals, my, you know, my registered dietitian, the cystic fibrosis clinic, They're basically going, hey, look, you need calories, like you need double the amount of calories a normal person needs in a day. You need high amounts of fat. So we don't really care where you get it. And you also don't really think about it too much. Don't care where you get it. Just get it. So if you want to slam Big Macs, eat pizzas and,

• 9:46Speaker 01

  you know, chew on a stick of butter, go for it. Right. And to be honest with you, like I, I, it was awesome. That was awesome. It was so fun. It was, it was kind of a point of, uh, it was always a conversation starter. It was, it was always something that I felt kind of, uh, not proud of, but sort of like, uh, this is kind of fun. I don't have to like, I don't have to feel guilty about these things that I do. I'm doing it to live. Totally.

• 10:12Speaker 01

  But, but the part that was kind of frustrating was eating like an absolute garbage truck and not, not adding a single ounce of weight. Right. I mean, even when I was, I remember when I was really young, I was probably, oh God, I don't know, 12, 13. Uh, my, my father was, my father was like, hey, Jared, listen, when you turn a hundred pounds, I'll give you a hundred bucks. How about that? Maybe in like 11 and I, and I was like, oh my God, that's, that'll be amazing. I can't wait. I was maybe like, I was close, right? I was, I was getting there and, and maybe around 91, 92 pounds. Right. And that journey from getting from 90 pounds to like a hundred pounds felt like

• 10:56Speaker 01

  a frigging eternity, especially with a hundred dollar bill kind of dangling on a carrot. But that was basically my whole life. My parents just being like, look, we gotta, we gotta like slam food into you and you need to be physically active to, you know, sustain your lungs and you need to be eating like a Michael Phelps to sustain your, to, to just maintain your weight.

• 11:16Abbey Sharp?

  Right, yeah, no. And I mean, let's kind of fast forward to today because we now have a kind of revolutionary drug here. It was, I believe, became, we got access to Tricafta in 2021 in Canada.

• 11:32Speaker 01

  Yeah.

• 11:32Abbey Sharp?

  But this drug is apparently effective for about 90% of people with CF, which is massive. But of course, like correcting these issues as this medication does means this abrupt shift in your metabolic needs and how your body effectively, you know, can utilize and absorb nutrients and calories, which obviously is an amazing thing for our health. This is, this is what we want. But I'm sure felt quite jarring, just to kind of that, that huge shift in experience and how you perceive food, what you know about food, how your body, you know, utilizes food and what kind of foods your body needs and is helpful for you. Do you want to talk a little bit about that shift?

• 12:15Speaker 01

  It was pretty epic. It's, it's really hard to convey how drastic of a change that this one drug has, has had on my entire existence. My, you know, from, from my physical body to my physical health, to my mental health, to my, my understanding of, of spirituality and, and existence. Like, it's really, really mind boggling.

• 12:43Abbey Sharp?

  Wow.

• 12:44Speaker 01

  To give you a little bit of context as to what this, this miracle drug is, it's called Tricafta. It's, it's a gene modulator. So like I said, cystic fibrosis is a genetic disease. What's happening there in my body is that I have this genetic mutation where there's a particular protein within my body that's, that's shaped the wrong way. It was just, it just wasn't built to fit the rest of the building blocks that make up my body.

• 13:12Abbey Sharp?

  Right.

• 13:13Speaker 01

  And so this pill, Tricafta, it doesn't treat the symptoms of cystic fibrosis. It literally treats at the source. So I take this pill and somehow through whatever miracle of science that this little pill does, it goes down to the molecular level to that protein, that one singular type of protein, and it folds it into the correct shape. So I still have cystic fibrosis, right? I still have that genetic mutation. But the cause, or at least the, the, the, the symptoms that, that are at the root of my illness have, for the most part, sort of dissipated.

• 13:52Abbey Sharp?

  Right.

• 13:52Speaker 01

  Um, and so because of this now, uh, my lung function, when I started taking the drug, right before I started taking Tricafta, my lung function was 50%. It was probably the lowest it had ever been. It was on a pretty steady trajectory downward. Two months after taking this pill, my lung function skyrocketed up to 85%. The highest it had been in over a decade.

• 14:15Abbey Sharp?

  Wow.

• 14:17Speaker 01

  At the time of taking Tricafta, I was maintaining a steady weight of around 138 to 140 pounds. It was kind of like where I've sat most of my adult life.

• 14:30Abbey Sharp?

  Right.

• 14:31Speaker 01

  Anything below 135, I would start to get worried because like that's where, you know, I might need to do some work.

• 14:36Abbey Sharp?

  Right.

• 14:37Speaker 01

  And anything above 140 was a completely different foreign language. I don't understand what that means.

• 14:43Abbey Sharp?

  Right.

• 14:44Speaker 01

  I started taking Tricafta and in two months, uh, I was, I was 175 pounds. I was like, you know, creeping up to 180 pounds and like.

• 14:54Abbey Sharp?

  Mind blowing.

• 14:55Speaker 01

  Oh my God. Like it was, I, I started to see my body in the mirror and I was like, oh, oh my, oh my word. I'm, I have love handles. Like I can see, I can visually see fat on my body.

• 15:09Abbey Sharp?

  Right.

• 15:09Speaker 01

  I've never seen this before and it was, it was awesome. Like it was awesome. I was like, holy, yes. All right. Like I want to, I'm going to fatten up. Like I'm going to, I'm going to feel what it feels like to just like put on a bunch of weight.

• 15:22Abbey Sharp?

  Totally.

• 15:25Speaker 01

  And then, and then, uh, that, that novelty wore off pretty quickly. Um, because I started to feel different in my body.

• 15:32Abbey Sharp?

  Mm hmm.

• 15:32Speaker 01

  I started to feel not so much the way my body looked. I was actually really, I was, I was kind of like, hey, yeah, like, you know, 36, like I've, I've always kind of, it would be so fun to have a dad bod for once.

• 15:44Abbey Sharp?

  Right.

• 15:44Speaker 01

  You know?

• 15:44Abbey Sharp?

  Right.

• 15:45Speaker 01

  Um, but really it was, I started to feel different in terms of the way that I moved through the world and, and the, the amount of energy that I had and it was. It was so drastic. It really kind of threw me for a loop because I've never once in my life, I really took for granted how much energy it takes when you have to think about what you're putting in to your body and how that has an effect on things like your weight or your energy. Right. As much as cystic fibrosis is a horrible thing, and I would never wish it upon, you know, my worst enemy.

• 16:24Speaker 01

  Boy, it's, it's pretty damn nice to just kind of have this one thing that you do and it doesn't really change a whole lot. Yep. And, and the only thing that you have to really worry about is when you start to get sick in other ways, because that's the way that you'll have this like negative effect on, you know, your, your, your, your weight or, or the things that you have to think about when it comes to nutrition. It really added a whole new layer to my day to day in terms of how much mental capacity I need to be now putting into nutrition and diet and just thinking about like, you know, what feels good for my body, what doesn't feel good. Right. I think it also woke me up too, to like, to this, this notion of eating like a garbage

• 17:08Speaker 01

  truck, like just going, oh, like what's this thing on the ground? Yeah, cool. I'll eat that. Like, like not even just like zero care, zero awareness. It started to wake me up to how, when I, when I, when I started to change that and I started to think about, okay, what does, what does more conscious, healthy eating look like for you now, now that you have this new body? And when I started to implement this, then I started to almost wake up out of this fog where I went, oh my goodness. Oh my God, all I've ever known was just eating like just copious amounts of, of calories and fat. I've never really had the opportunity to, to feel internally what it feels like to eat healthy. Right.

• 17:51Speaker 01

  And, and that was a big kind of jaw dropper for me.

• 18:09Abbey Sharp?

  This is so interesting that you seemingly overnight became aware of diet culture in a lot of ways and what so many people have to think about all day, or they do think about and obsess. And you said this, the mental energy, the mental burden of having to think through every meal and look in the mirror and think, oh, I need to, you know, should I have the bun with that burger? Where you came from a place where you were thinking, oh, I need to put more bacon on that cheeseburger. Like, how many patties can I fit into my mouth? Like, I can imagine that's that's jarring. That's, that's, that's a lot of body data to kind of try to catch up on

• 18:51Abbey Sharp?

  almost overnight. And, you know, what you've, what in the past, you know, felt good to your body, which was basically just like as many calories as possible, so that you had enough energy to like, live your day to day, to now I'm to kind of recalibrate what kind, what fuels you? I'm sure that kind of felt like a bit of a, you know, you're a stranger in your own body in some ways. So, I mean, yeah, that, that, that must have been a lot to kind of go through. How, how long did you feel like it took you to feel like you had a good grasp on, on your new body cues? Or is that something kind of like you're still working through?

• 19:32Speaker 01

  Yeah, I'm, I'm still trying to figure it out, you know, I, um, uh, yeah, like, it's, it's still, it's still kind of foreign to me, to a degree. Again, so, you know, when I, when I, when I first took that first dose of Tricafta, I was, I think I was 33, or maybe I was just about to turn 33. I'm now 36, I'm just about to turn 37. And so, that's, I mean, that's a long time. That's the, that's the entire time I had been alive, where I was living in this one way. And then all of a sudden, I find myself living in this new body, this, this, this new life, you know, like, Up until Tricafda, I had no tomorrow. I was not saving for retirement. I was not thinking

• 20:17Speaker 01

  about my future because to me, I had no future. And then all of a sudden I get this drug and it's like, okay, well, first of all, you're gonna have a future, right? So there's that. Figure out that real quick. Secondly, you're you're gonna now know what it feels like to be able to breathe and to be able to just go out for a walk with your dog without having to get winded. So that's fun. Enjoy that. Third of all, you were you were totally down and totally engage, like embracing this idea of death. That's not going to come for quite a while. And then also, you are going to gain weight very quickly because of the way you're eating. So you're gonna want to change that. And then on top of that, because you're going to be living potentially, I mean, you know, I could go hit get hit by a bus today, who knows, but but statistically

• 21:02Speaker 01

  speaking, based on the the lifespan that I now have, the way that my disease is sort of manifesting, you you're gonna want to start to think about what that means for your body as you begin to age, as you begin to reach, let's say you hit 50s, your 60s, your 70s. And so like all of this information, all of this information just slamming into me in in the span of really like a couple of months. I mean, I had to start going to therapy. I'm still trying to unpack this stuff like it is, and it's, I can only do one layer at a time, you know?

• 21:39Abbey Sharp?

  Right.

• 21:40Speaker 01

  So in terms of like my my my nutritional journey, or my like my overall sort of health journey, my relationship to food, the one thing that I did find really helped me kind of get grounded was to find a sort of element to my life, my day to day, that allowed me to hone in on one aspect of my nutrition, that was kind of similar to to the the CF diet that I was given, right? So and I don't mean this by like, you know, so I went out and I found the Atkins diet. And I was like, okay, this is it. No, what I mean is I, you know, I was like, okay, I am going to age. But I think this entire experience sort of opened my eyes to this notion that unbeknownst

• 22:24Speaker 01

  to myself, I think I might have been carrying some like ageism and like almost like a phobia of Old people, you know, like that I that I was holding on to that I didn't even realize. So now I have this idea like, oh, I'm gonna get old. That scares me and I'm scared of old people. I don't want to experience that. So how can I, in the very least, take some control over this and experience that in a way where I will be in a body that feels as good as it can feel at that time? And so I started to focus on my physical fitness. And I started to get on a routine at the gym. So I have a good friend of mine, Brian, who's who's the co-host of Sick Boy with me. And and he's he's a very, very fit fella.

• 23:08Speaker 01

  And he used to competitively lift and and he's always kind of asking me to go to the gym with him. So I said, you know what? I'm gonna do it, Brian. I'm gonna start coming with you. So since that time, I've been going to the gym five days a week. Getting in there five days a week. And and in order to maintain a five day a week, high volume, high intensity workout routine. Well, I need, I can't eat like a maniac, right? And and I and I have to eat enough.

• 23:33Abbey Sharp?

  Right.

• 23:33Speaker 01

  So so that has been sort of like this new modality at which I now focus on my diet in a way that is kind of similar to the CF diet. In the sense that it's like, you need enough, you need enough nutrition to to just push through, to be able to get to the next day. Because if you're, if you're working out this hard and you're not, then you're gonna have a really hard time with all the other activities that you like to take part in during the day. With CF, it was, you know, your resting heart rate is 100. You, you know, you, you, you're not absorbing your nutrition. So if you want to live, you need to eat enough to get you through the day.

• 24:15Abbey Sharp?

  Right.

• 24:15Speaker 01

  And so I think I've kind of shifting that mentality from survival to, I guess, quality of life.

• 24:23Abbey Sharp?

  Right.

• 24:24Speaker 01

  As opposed to, you know, quantity of life. Has been the thing that that has really kind of shifted my focus to make this transition, I guess, a little bit more, a little less overwhelming. And a little less focused on like, where I'm getting my food and how and and, you know, what what's at the heart of that food in terms of its nutritional, you know, breakdown, the calories and the and the fat and the sugars. You know, trying to step away from that and just going, okay, what feels good? What feels good to get me through to the next day?

• 24:57Speaker 01

  Because I know if I go to the gym five days a week and you know, on day three, I don't have, I you know, I'm too busy. I don't eat breakfast.

• 25:03Abbey Sharp?

  Right.

• 25:03Speaker 01

  And I have maybe a little thing for lunch and I get to the evening and I'm famished and then I slam myself full of food. The next day I wake up and I'm like, I'm not going to the gym today.

• 25:12Abbey Sharp?

  Right. No recovery. Yeah. You, you, you've, you've started to kind of learn that those body cues and that, that takes like a lifetime for a lot of people. So I mean, I can imagine you, you had to compact all of that body knowledge into such a short period of time. And I'm, I mean, I'm sure this is such a common experience for a lot of folks in the CF community who, like you say, have like spent their whole life eating these high calorie foods and like maintaining a low body weight and like a six pack. I think you told me like everyone's got a six pack from chronic coughing and then they see this huge, you know, leap in quality of life from tricaftan that comes, of course, along with this hike in body weight. I'm curious, like as somebody in the CF community,

• 25:57Abbey Sharp?

  you know, especially in this age of Ozempic, when skinny talk and you know, despite all of our advances in the body positivity, body kindness space, there's, there is so much of this pro thin, pro, you know, skinny content out there. In the CF community, have you seen a rise in like extreme weight loss conversations after, you know, now that people are on tricaftan, experiencing just what it feels like to have to think about their body weight?

• 26:28Speaker 01

  I mean, I, I think the thing that I've been seeing, especially in the CF community and, and with a lot of the conversations that we've had on Sick Boy with CF patients post tricaftan. It's more of a rise in dialed up body image, almost body dysmorphia type, type, uh, not, not to say that, that we all are suffering from body dysmorphia, but, but there's this like cloudy, confused version of ourselves that we see in, in the mirror and, and it's so not what we're used to. You know, it's, it's like, um, I would, I would, I would assume, this is an assumption because I've never experienced it, but, but I would assume it's, it's very similar to what it might feel like when you are someone who

• 27:12Speaker 01

  You know, has to go on on a high dose, maybe a little longer term dose of prednisone. Right. And you start to like, you're you're you start to experience moon face and you look in the mirror and you go, wait, whoa, like, this is not me. I don't look like this. When all of a sudden you wake up and your body is is drastically different, you know, from one day to the next. That is a really jarring experience. Yeah. A lot of us don't actually feel what that what that feels like because regardless if you're losing weight fast or slow or gaining weight fast or slow. More often than not, that is over a span of time that Yes.

• 27:51Speaker 01

  is kind of drawn out. It's like when you look at your dog at three years old and you think, my goodness, like, I I don't remember when you got so big. Right. We oftentimes experience that when we look at ourselves. It's you see this change, but then you look at a photo from maybe last year and you go, whoa, whoa, whoa, whoa, wow, that's huh. And then you start to see yourself maybe in this different light. I mean, it's literally like overnight, you know, to to a degree where it's so rapid. That all of a sudden you're looking at yourself going, what the fuck? Like, who is this? And I think I feel very fortunate that for me, I found I found a lot of levity and kind of fun and play within that. I think that's just my sense of humor. Right.

• 28:33Speaker 01

  But I know that there's a lot of CF patients that that really struggled with that. All of a sudden, now they're having to deal with like body image issues that are kind of swinging from one side of the the pendulum to the other. You know, a lot, a lot of people with CF growing up, they see themselves in the mirror and they they might think, okay, well, you know, I'm I'm slim, but like, it's hard for me to gain weight and I wish, you know, maybe I for males, I know for myself, when I was growing up, I was like, I wish I was a little bulkier, you know, that'd be kind of, that'd be kind of nice. Right, sure. I always loved my my sweet six pack. That's the best part of having CF, I would say. But but to have a little bit of bulk would be kind of nice. And then all of a sudden, you're you find yourself, you're getting balked up and you're

• 29:16Speaker 01

  balking and balking. And then you're like, okay, okay, okay, okay.

• 29:19Abbey Sharp?

  Right.

• 29:19Speaker 01

  I'm good. We're good. So I think there's, there's been a lot of discussion around just the, the mental anguish that can come with all of a sudden being kind of slapped across the face. And when you open your eyes, you're, you're in a new form.

• 29:33Abbey Sharp?

  Right.

• 29:34Speaker 01

  I wonder with the Ozempic thing, because I, I mean, I don't know anyone who's on it or who's taken it. But from what I gather, that also seems to be a pretty fast transition.

• 29:43Abbey Sharp?

  Of course.

• 29:44Speaker 01

  I'm really curious. I'm curious about from a, from a mental health perspective, or like a sort of mental awareness perspective, how that must feel for some people. I'm sure for some people, they're like, oh, thank God, I've been waiting for this. And I'm sure for some, it's kind of like, oh, geez, this is a little bit jarring. It's a little bit uneasy, you know?

• 30:04Abbey Sharp?

  Well, yeah, I mean, I think we so whether it's through illness, medication, like you mentioned, life stages, like it's, it is jarring to see your body change rapidly, you know, even myself, like going through pregnancy and postpartum and you, you know, one day, like you're, you look in the mirror and you're like, my, my face doesn't look like my normal, my pregnant face doesn't look like my normal face. And, you know, my body feels different. And, and there are comments that come up from people, you know, constantly. I mean, I don't know if you experience any of that. Obviously, I'm sure in a lot of cases are well meaning, but especially if you are struggling with body image in that moment, that that jarring experience of like,

• 30:48Abbey Sharp?

  holy shit, this is not the body I know. This is not the person I know in the mirror. Like, did you ever feel triggered by people saying, oh, you know, even if it was like in a joking way, like, oh, you know, you're packing on the pounds there, bud, or you know, like, look at you kind of thing, like, did you ever, or was that kind of taken in jest for you just because of, you know, your personality and your ability to kind of manage those things?

• 31:12Speaker 01

  I think it's often taken in jest. I mean, you know, the one thing that I did experience quite a bit was,

• 31:20Speaker 01

  This was more of a generational thing. If I saw anybody that was, you know, a family friend, you know, a friend of my mom's, or maybe like an aunt, or a family member who's a bit older, I would always get, oh my goodness, look how healthy you look. Oh my goodness, you're packing on the pounds, aren't you? That's so, look at that, so nice. And I always, you know, I personally, I always just smile at that. And I think that's, I know it's, I know, I know that probably wouldn't, that doesn't fly with some people. And I probably should say, hey, you know, I don't mind. Right. Maybe don't say that to just anyone, okay? Totally. But I don't do that. So, so, but I do find it kind of endearing.

• 32:03Speaker 01

  And to be honest with you, I do feel healthier and I do look different. I do look healthier, you know, like I look a little less, you know, gaunt. So, so I take it. I take that and I enjoy it. But here's the thing, you know, there's, there's been a number of studies out there that have pointed to the fact that compliments, no matter how, you know, positive they are in intention, no matter, no matter what the compliment is, oftentimes compliments, and I'm not talking just about like compliments about your looks or compliments about your body. I'm even talking about compliments about your ability to, to create something or your, how proficient you are at a certain skill

• 32:46Speaker 01

  or confident about your performance at work. Compliments across the board oftentimes are, are causing more harm than good. And, and the reasons for that are, are kind of complicated and surround our psychology mostly about the ways that we think about ourselves or talk about ourselves. So, you know, you might give a compliment that is, hey Abbey, you know, I just read your book and I really love the, the chapter about, you know, yada, yada, whatever. And you might hear that and go, oh, thank you so much. That means a lot. Unbeknownst to you, there's this other like little fucking part in your brain that starts to chime in and talk about, you know, what, what, what I might have actually thought about it or what you thought about that chapter because, you know, you didn't really, it's like,

• 33:31Speaker 01

  it would have been better if it, if it looked like this or whatever. And then all of a sudden, it's now had this negative impact on you. And in reality, I was just trying to say, hey, I like this thing that you did.

• 33:40Abbey Sharp?

  Right, yeah.

• 33:42Speaker 01

  You know, and that's not to say, don't give compliments. I think it's just, it's, it's more of a statement of like, hey, just every so often, check in with the way that you are communicating with someone. If it's about them or referring to them in any way that is either negative or positive. And, you know, maybe you don't have to give a compliment.

• 34:01Abbey Sharp?

  Of course, yeah.

• 34:03Speaker 01

  Maybe you don't have to take it out on yourself for the fact that you don't take compliments that well. You know, like, we're always just like, oh, you know, I really don't take compliments well. Yeah, good. Don't be, don't, don't worry about that. You shouldn't be.

• 34:13Abbey Sharp?

  Right.

• 34:14Speaker 01

  I don't think anybody really is.

• 34:15Abbey Sharp?

  For sure.

• 34:31Abbey Sharp?

  One of my messages to everyone, especially, you know, as we see a lot of people, you know, family members and things like that, again, these comments are typically well meaning. But I always try to remind people, like, try your damn best to refrain from making comments like that, because you actually never know how that's going to affect someone. If you were to tell somebody, oh, my gosh, you look so much healthier. In somebody's mind, especially when they are kind of struggling with, you know, getting into kind of disordered eating or, you know, body dysmorphia, beliefs or thoughts, that might be interpreted as, well, I didn't look healthy before. Or that might be thought as like, okay, does healthy mean I'll now look fat?

• 35:14Abbey Sharp?

  Or, you know, like, you, you just never know what's going on behind the scenes. And, and that could very easily trigger somebody into some very, you know, very scary territory when they might just kind of snap and like, okay, now I need to kind of like, I need to lose that weight back. And, and, you know, I can't speak for the CF community specifically, especially because I know that, you know, tritophate is still a relatively new medication. But we do see in, you know, other conditions that do, that Does do cause like rapid weight gain, for example, like PCOS. We do see heightened risk of disordered eating and eating disorders. Likely because that that experience of your body changing so rapidly is so jarring that people,

• 35:58Abbey Sharp?

  you know, think they know themselves one day and the next they don't and they automatically kind of snap and they go into, okay, what kind of extreme diet can I do to fix this, to go back to the way I was, to change? And I'm listening to you talk thinking, you know, a lot of these these changes have been met with some kind of like a little bit of pride, like, you know, the the bulking thing or like, you know, you know, there's like a little bit of, uh, hey, you know, like, I'm getting bigger after all those years of being the, you know, like, little little guy in class or whatever. I wonder how those comments may be interpreted by differently for for women. Who's, you know, you know, typically our our whole identity is tied up into

• 36:44Abbey Sharp?

  being petite and being, you know, small and and, you know, not to say that diet culture doesn't affect men because it absolutely does. But I, there's no question it disproportionately affects women who have more pressure on them to be smaller, to be thinner, to, you know, for for that kind of to be wrapped up in the idea our ideas of femininity. So I I I wouldn't be surprised if as we kind of move forward, you know, again, this is still a relatively new drug, new experience for people, but I wouldn't be surprised if we start to see data on that rapid shift increasing, suddenly increasing disordered eating, you know, extreme diets, a lot of that kind of stuff.

• 37:30Speaker 01

  Yeah, yeah. And I could see it. Like, I think I have a really like, well, some might argue unhealthy, but but I think I have a pretty healthy viewpoint on my body in in the first place and and even to the degree where like I can very easily laugh and and find humor in things that maybe some people might not if it was if it if the tables were turned. But I think that's just me and that's who I am. But but I will say this, I have found myself a couple of times looking at myself in the mirror and and saying, I kind of miss that. I miss that six pack a little.

• 38:00Abbey Sharp?

  Right.

• 38:01Speaker 01

  Like, but of course, like, I know that that's not going to, like, that's that moment I say that, and then that sort of dissipates and it goes away. And, you know, it is what it is. I know that that's not going to lead me to.

• 38:11Abbey Sharp?

  Go off your medication.

• 38:12Speaker 01

  Dipping it dipping out on a couple of meals, you know, to like, try to so, so, but, but if I'm having that thought, and, and somebody else has that thought, there's a possibility they don't have that same mentality where they go, they can just brush that off.

• 38:25Abbey Sharp?

  Yep.

• 38:26Speaker 01

  And it becomes something that's bigger and insidious and leads to something that's, you know, quite unhealthy. So, yeah, I think you're, you're absolutely right. And again, when you look at Tricafta and the, and the unbelievable amount of ways that it's having an effect, this thing that we're talking about is literally just one little tiny piece of the puzzle. And, and when you take that one tiny piece of the puzzle, and you, you kind of pull back and you see the entire scope of that puzzle, there's too much to be focusing on to perhaps notice how much you're struggling in one element of this or the other. So, you know, folks might be just like totally drowning in the, the body image issues and, and the, the, the weight gain, or, or the, you know, the, the, the shift in, in the way that they, they see

• 39:11Speaker 01

  themselves in the mirror. But they don't even notice because they're so wrapped up on the fact that now they can, they can have an accidental pregnancy because their cervix isn't clogged with mucus anymore, or the fact that they feel survivor's guilt because their close friend who had CF died before they could get their hands on Tricafta. Or, you know, I mean, you name it. There's just so many aspects to this that are so unbelievably overwhelming, that it would be really easy to just lose sight of the parts of your, your life that are in a state that really needs some focus or attention, because you now have been given a whole new life.

• 39:52Abbey Sharp?

  Right.

• 39:53Speaker 01

  And on one hand, that is amazing. But on the other hand, I think a lot of people fail to recognize, boy, as awesome as this is to be given a second chance at life, it is also extraordinarily confusing.

• 40:04Abbey Sharp?

  Yeah.

• 40:04Speaker 01

  And so I, I really do feel for those that are in that position where they're having an extra hard time with the on paper positives about this drug.

• 40:14Abbey Sharp?

  Right.

• 40:15Speaker 01

  That, you know, in practice, maybe not so positive on the outset.

• 40:20Abbey Sharp?

  I think this is, you know, a good time to remind people who are struggling with, you know, just the challenges of whether it's tricaftan or really like any other kind of big life experience like this, like so important to get support when it comes to therapy, talking to somebody. This is a lot to unpack and it's a lot to unpack in a very short period of time. It's a real mind fuck, I'm sure to to kind of think one day, oh, I'm not going to have a future. I might like YOLO to thinking, wow, I might have a family. I might, you know, buy a house for this family. I might like think of all the things that, you know, you've got to catch up on basically. And that goes so far beyond food,

• 41:04Abbey Sharp?

  beyond body, beyond weight and, and all of these things. I'm sure for a lot of people that are experiencing these rapid weight gains and, you know, rapid changes in their body, that it might be very easy to kind of hyper focus on these very small insignificant details in life. When you think about the grand scheme of like what you've been gifted, what you've got here, you know, at your fingertips now. So again, very important to kind of to get to get some kind of one-on-one support there. But this was so interesting. And I am sure it has been so helpful for our followers who are listening. So thank you again, Jeremy, for chatting. Of course, for everybody who's listening, definitely

• 41:45Abbey Sharp?

  check out my interview with Jeremy on his podcast, Sick Boy. And give the whole podcast a listen. There's so much amazing content over there. Thank you so much, Jeremy.

• 41:55Speaker 01

  Yes, thank you. This has been an absolute treat. Thank you so much.

• 42:00Abbey Sharp?

  I love that. I could literally talk to Jeremy all day. He's such an incredible beacon of light and an amazing asset to the chronic disease community. And while Jeremy's experience living with cystic fibrosis is relatively uncommon, the uncomfortable experience of a changing body is something that so many of us can relate to, especially when diet culture teaches us that our adult body is supposed to look and operate the same as it did in high school. But weight or body changes can feel even more disorienting when they seem to happen overnight. Whatever your experience, we can work towards making peace with a new or changing

• 42:44Abbey Sharp?

  body we don't recognize. One of my favorite techniques for practicing self-compassion in situations like this is to reframe our negative comments as you would for a close friend. So for example, rather than thinking to yourself, "Oh my God, I cannot believe my body looks like this right now," you might remind yourself, "Hey, friend, it's okay to feel overwhelmed right now. That is all part of being human. But your body is going through a lot right now, and it deserves some patience and care." So let's prioritize some activities that bring us some comfort and joy. I also find it helpful to remind myself what I've gained through the process or purpose of my body changing.

• 43:28Abbey Sharp?

  For folks who are experiencing significant weight gain from medication, think about the overwhelming boost in quality of life that you will get to experience from that medication. Likewise, for my moms who may be struggling with pregnancy or postpartum changes, consider the beautiful gift that comes with your new body. I understand that diet culture will always try to cloud our appreciation of what we may gain from a changed body, especially when it feels unfair to get the hand that you've been dealt, like with chronic disease. But trying to find ways to cultivate gratitude in small, authentic ways can bring us moments

• 44:08Abbey Sharp?

  of peace and help shift our perspective without invalidating our struggles. Remember, bodies are not meant to stay stagnant. They are meant to grow and evolve as they take on new experiences and teachings. And if we can learn to navigate these experiences with compassion and self-care, we will be able to enjoy the gifts that our body has given us to their full potential. And that is all that I have for you guys today. Thank you so much to Jeremy for helping me bite back against diet culture. Again, I will be leaving links to his podcast and social media in the show notes. And if you enjoyed this episode, I would love if you would give Bite Back a little five-star review and a comment.

• 44:52Abbey Sharp?

  It really does make me so happy, and it helps get evidence-based content out to people who need it most. Signing off with Science and SaaS, I'm Abbey Sharp. Thanks for listening.

• 45:12Speaker 00

  Now, more than ever, we need someone on our side. But Rob Whitman? Whitman's votes drove up costs, cut Medicaid, and risked 350,000 Virginians' health care to pay for tax breaks for himself and his donors. He's not on our side. Shannon Taylor will fight corruption, cut taxes, and bring down costs. This November, vote for Shannon Taylor. She's for us. Paid for by HMP, the HouseMajorityPact.com. Not authorized by any candidate or candidate's committee.