The Powerful Impact of the IBD Community Featuring Katie Neu — About IBD Podcast Episode 202

Leave a reply

Katie Neu and Amber Tresca talk over the results of the IBD Social Circle white paper, “The Power of Community in Inflammatory Bowel Disease.” A survey of more than 500 patients puts a spotlight on the ways IBD affects body image, relationships, intimacy, and mental health. Amber and Katie discuss masking symptoms, the difficulties of working a corporate job, and why having community is critical.

Chapters

  • 00:05 — Host Amber Tresca introduces the podcast and her guest, Katie Neu, who lives with Crohn’s disease.
  • 01:25 — Amber and Katie discuss the IBD Social Circle, a community for patients, caregivers, and healthcare professionals.
  • 04:25 — The conversation turns to the experience of “faking being well” to manage social and professional expectations with an invisible illness.
  • 10:17 — Katie shares her experiences with the stigma surrounding IBD, from high school and college to the workplace.
  • 13:59 — The discussion focuses on the significant barriers to maintaining a career while living with IBD, including needing accommodations.
  • 23:20 — Amber and Katie discuss the impact of IBD on body image, dating, and intimate relationships.
  • 31:26 — The hosts talk about why people hesitate to join support groups and the mental health benefits of finding community.
  • 37:08 — Katie shares where listeners can find her online, including her Instagram and Substack, to connect and learn more.
Sponsored by Johnson & Johnson

The IBD Social Circle White Paper: The power of community in inflammatory bowel disease

Find Katie Neu of Badass With a Bad Ass at:

Find Amber J Tresca at:

Find Mac Cooney (mix, sound design, and theme music) at:

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Transcript

Amber Tresca 00:00:05 I’m Amber Tresca and this is About IBD. I was diagnosed with ulcerative colitis as a teen and had surgery ten years later. Now I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen on about IBD. You’ll get real talk on symptoms, treatment, and life with IBD straight from patients, caregivers, and experts. You’ll learn, feel less alone, and even have a laugh along the way. My guest is Katie New of bad with a bad. She was diagnosed with Crohn’s disease when she was ten, had her first surgery at 15, and continues to live with strictures and fistula. Today she learned how to balance IBD throughout school, college, and her career, especially when it came to prioritizing rest. All of this while keeping her badass attitude. Katie, welcome back to about IBD. Thanks, Amber. I’m happy to be here. I’m so glad to work with you. I’m so glad to be working with you, especially on this new way of doing about IBD podcast. We’re like, we’re leveling up, we’re doing a new thing, and I really appreciate you jumping in with me.

Amber Tresca 00:01:16 When I asked you, you said yes right away. Didn’t really have a lot of questions you like, let’s do it. So that’s how I like to do about you. I love that about you.

Amber Tresca 00:01:25 I was also I couldn’t remember what we did last time about the name of your platform. Did we bleep it? I think we might have bleeped it. I think we did or I’m not sure what we actually ended up doing. I should have looked before we came. I don’t remember to believe it might have been a Bleep. So we have to bleep it again. Then you know we’ll make sure put everything in the show notes okay. So today we have a really special episode. We’re going to talk about the IBD Social Circle. And in case you don’t know because I know and you know the IBD Social Circle is an inclusive community of patient advocates, caregivers, and health care professionals dedicated to turning lived experiences into resources and tools for all who are impacted by inflammatory bowel disease. Part of the IBD Social Circle is in learning more about the lived experiences of people with IBD, sort of outside symptoms and treatment.

Amber Tresca 00:02:23 So Johnson and Johnson conducted an online survey of 511 adults who live with an IBD. Out of this survey came a white paper entitled The Power of Community and Inflammatory Bowel Disease. There are some really important insights in this paper. And Katie, that is what we are talking about today. I’m excited.

Katie Neu Yeah me too.

Amber Tresca So also white paper. I will put it in the show notes because it is really very impactful. And the IBD Social Circle, one of the things in the mission statement that I read was about how we’re talking about people touched by IBD. Right. And so that just doesn’t mean, like you and me are living with it. That means, like your husband, my husband, kids, family, anybody else.

Katie Neu Sometimes they’re the forgotten social circle piece of it as well, because it’s caregiver gets passed around. But there’s also the additional people in our lives that aren’t necessarily caregivers but are holding that piece of actual care for us. So it’s very interesting to kind of pull it all together.

Amber Tresca 00:03:27 Yeah. And I like to think of it as like the concentric circle idea. You know, maybe we’re I’m not one to say I’m at the center of anything, but maybe we’re as patients here at the center. And then there’s all these concentric circles of care that come around us. And then those people are part of the IBD social circle, too. Right. So. Yeah. Yeah. Great. Okay. But today, actually we’re just going to talk about the patient experience because I want to okay. So we know IBD is an invisible illness. And the IBD Social Circle white paper points that out. Rightly so. And I don’t know what you’re supposed to look like when you live with a chronic illness. I don’t know either. I’m not sure. Maybe neither one of us. I don’t, I guess not. I don’t, I don’t know. I don’t know. Is there a Simpsons character that they’re referencing?

Amber Tresca 00:04:20 Yeah. Like, where can we point to something? Is there an example, for example? Is it in the books.

Katie Neu 00:04:25 Like the original Grey’s Anatomy textbook of like what a chronically ill person is supposed to look like? I don’t know, maybe we’re just not aware of it, right? Because maybe we should be looking like that if we actually want to be taken seriously by people. But anyway, so we you do it, I do it. We all do it. Yeah. We fake being well. Yep. So I want to ask you about how often you find yourself faking being. Well. I mean, besides, it’s almost like revealing myself a little bit. of just even I think in day to day sometimes, you know, when you’re flaring, you start to do it a lot more than you realize. You can kind of start covering it up. I find myself doing it in those times when I don’t feel good and I have to still show up. Like, I have to kind of mask the pain that’s going on. Like, you won’t see it on my face. Like there’s a lot of indicators that won’t be there.

Katie Neu 00:05:24 And it takes, like, a very caring and a very like, you know, curious person to be able to pick up on certain traits of, like, you know, bags under the eyes or like a little less of an energy compared to, like, knowing me before, like kind of almost like seeing me in a different way and fishing out if I’m like putting on a good face for whatever I’m handling at that time. But I unfortunately find myself doing it more than I would like. I think I finally reached a point with my health where I know I’m going to be hitting a point where I don’t have to do that as much, but it it could always come back at any time. And so I try to value the time that I do have where I don’t have to do that as much, but I don’t think there’s any shame in doing it either. I think that’s just a skill that gets utilized and talked about in therapy.

Amber Tresca Yes, definitely talked about a therapy. And I think about that too.

Amber Tresca 00:06:23 Like whenever I go to see my physicians, like, do you show up? I don’t show up like this. No, I do not do the makeup and the whole deal. I kind of just like, show up that makeup. I mean, showered.

Katie Neu Yeah, but, like, I didn’t just roll out of bed, but, like, close to it. There’s been times when, like, I’m really sick and I’m like, is this as good as it’s going to get today? You know, like, especially if I’m going to like the emergency room, it’s almost like a roll out of bed situation. But yeah. No, I don’t go to the doctor’s looking super cute. Unless. Unless I have plans afterwards. And then I’ll say, usually I don’t have plans. Right. Right. Yeah.

Amber Tresca Me neither. Usually. Yeah. And so. All right. So flaring, you would say. Obviously you’re faking being, well a lot more often. And then when you are not in a flare.

Amber Tresca 00:07:18 And that isn’t a weird thing to say because sometimes it’s kind of like, well, when am I not in a flare? Right. but when you’re not in a flare, do you still think about that? Does that enter into your consciousness? How do I look right now?

Katie Neu It comes in waves, I think. Like, with the symptoms that I still experience, because having being flare and being in remission, quote unquote, doesn’t mean that you still don’t have symptoms. I think, like, because I’ve had it since I was ten, I’m always going to have a baseline of pain. So it’s like, is the pain a little worse that day? Or if I’m still having bathroom problems, it’s still kind of going to show up in different ways, but I do feel like a tapered down version of it, almost. Yeah, yeah,

Amber Tresca I was thinking about a time when I was at a conference with some other, the IBD Social Circle. Actually, not that I’m thinking back on. That’s who I was with.

Amber Tresca 00:08:14 And one of the other people in the social circle, patient, kind of pulled me aside and said, you’re doing all right. And, you know, I’m looking like this. I’m in my conference where I’ve got my makeup on, I got my hair done all of the things. And yet somebody else who lives with IBD could look at me and tell, like, the Energizer bunny was winding down like she saw it. And it was so interesting to me that she did because I was like, thought I was doing a good job faking it.

Katie Neu Yeah, yeah, yeah, it’s almost validating in that moment. And at the same time, it can be like almost intimidating. You get taken by surprise because you’re like, wait, that’s the person I put on today? That’s my, you know, level of professionalism or wherever you’re showing up. That’s my level of socialism, you know? And I actually was at a conference last week and it was a colleague that brought it out, brought it up to me where she’s very high up, but she, you know, is in the patient engagement sphere.

Katie Neu 00:09:14 And she actually, like, touched my arm. And she was like, are you okay? She was like, and she just whispered it. She was like, you seem a little down. And I was like, oh, I was like taking it back a little bit. And I was like, I’m just tired, you know? And I like kept my face the same way. I just was like, I haven’t processed this much information in a while. And I was like, I just had to stare at a wall last night. And she was like, I wanted to just check in. And I was like, whoa, that shows that, like people even that are in like a corporate pharma sphere can kind of like pick up on like, patients and where their like points are of like low energy and fatigue. Yeah.

Amber Tresca That’s a good conference buddy.

Katie Neu Yeah. Yeah. Yeah, definitely. It was. Yeah.

Amber Tresca Up next, Katie and I talk about some of the biggest barriers to having a career when you live with an IBD.

Amber Tresca 00:10:17 In the white paper, Katie, there’s a stat that 84% of adults with IBD feel a sense of stigma. And this takes many forms, everything from our careers to our social lives. So I’m wondering if you could talk about some of the ways that you have been experiencing stigma, and you’ve been living with this since ten.

Katie Neu So it’s been it’s been a few years. I think that the stigma was quite different when I was younger. Like, I think where we were science wise, where we were, you know, as a world, as people like. We just weren’t there to, like, accept this form of chronic illness. And now that I’m older, I see like it’s more readily accepted. But in the meantime, like, you know, high school was quite interesting and, you know, try because I started high school at the age of 17 because of my when I had my first surgery. And so it just delayed everything. And so navigating not only that, but also just being with peers who are like, what do you mean? You have like a disease? What’s a disease? You know, like it was really like granular, like getting down to the foundation of it and even like, my best friend to this day, like, we remember a fight and I, like, yelled at her that she was stressing me out and she was going to cause me a fistula, you know, like, I was like, you’re going to cause, you know.

Katie Neu 00:11:41 And she still remembers that to this day of, like, she’s like, really sorry on that one. Yeah. She was like, no, but it’s just like she was someone I could be open with. But there was the other side where it was just like I would get tired of talking about it or navigating it, but it set me up for entering into college, where I was seeing other people get stigmatized, and I was like, oof, I don’t want that. And I’m an open book. So I was like, let me just be the open book and say, like, I have Crohn’s. And the more I own the narrative, the more like people understood my age. But it was also causing other people to come out of the toilet, as I coined, like to me at college. Like if they would be like very quiet about it, they would be like, you know, I’m trying to get, you know, my roommates to understand why I’m in the bathroom so much or I don’t know how to, like, present it to, you know, my peers at all.

Katie Neu 00:12:38 And it was something that I really had to navigate of, like, you know, this is how you have the conversation or this is like what I’ve learned. I think the unfortunate place where I started to have like, the most stigma to overcome was the workplace. And I think it just was something I wasn’t really prepared for because I thought as long as I succeeded in college and that I was able to navigate it socially, I was like, oh, that that’s going to translate into corporate. Like, I went to a business school. So I was like, all right, this is pretty much as simulated as it’s going to be. Like, this is going to be something I can navigate in a group project. So that’s going to translate into corporate really well. Like I really thought I had the tools and I wasn’t prepared for like what would actually happen. And I think it was also just not knowing what my rights were at that time. Yes. Plus, pre-COVID and post-Covid, I think are completely different in the workplace.

Katie Neu 00:13:34 And I was navigating 2019 and 2020 in the workplace. And it was something where, you know, unfortunately, you know, Covid played a role in me becoming an advocate. And at the same time, you know, that was the big piece of it was like, there’s there’s something here. And why isn’t this talked about more? Yeah, that makes sense. So, Katie, you were just.

Amber Tresca 00:13:59 Alluding to and something that I say all the time on this podcast and everywhere else where I can get people to listen to me, that IBD touches every single aspect of our lives. missing work, missing school. Both of us have done that because of our IBD. but I want to give another stat because I was a little surprised at this one. The one about 84% of people experiencing stigma. I was like, okay, I kind of I don’t love it. That’s high and that’s rough. But yeah, I got it, you know? So this one was that people miss a median of about five days of work each year, and 10% missed 30 days or more.

Amber Tresca 00:14:39 so I thought that was really huge. in my life. Absolutely. I mean, I missed months and months of high school and then held on to college by the skin of my teeth, probably when I shouldn’t have been there and just like, was toughing it out. And same with work. so you have been through it. You’ve been very open on your platform regarding, your career and seeking accommodations and then having, should we say, varied levels of success with that?

Katie Neu 00:15:11 Yes, yes. Very. Yes. So varied.

Amber Tresca 00:15:14 What would you say are some of the biggest barriers of having a career while living with the stupid IBD?

Katie Neu 00:15:22 Comes down, unfortunately, to that stigma. Again, it brings back to the piece of how do you present yourself? How do you look? If I’m showing up to the job interview and I’m highly energetic and I’m, you know, quick on my feet that day and able to answer all their questions, that’s who they, you know, hire and who they expect.

Amber Tresca 00:15:42 And I think that there needs to be this, you know, lack of a biased, you know, judgment of like what a human should be able to handle in a capacity sentence. I also think there is a foundational missing piece as a patient, like you have to know it before you can ask for it. So you have to know, like what you need in the role at the job that you’re working, before you can even go through the accommodation process to get help for the job. I think the barrier there is, they look at it as like, oh, why did you wait this long to get, you know, talk about it or, you know, why didn’t you come in with these requests? And a lot of it is just like, well, I, I didn’t know until I didn’t know. It’s a dynamic disability and dynamic disease. And so my capacity changes day to day. And I had to learn what I could and couldn’t handle with a job. And there’s a lack of understanding of how much time it takes up as well, where like the five days kind of shocks me because it’s like I would miss more and more time of work because everything happens within business hours of a 9 to 5 or 8 to 5 or 8 to 6.

Katie Neu 00:16:59 And the doctor world. And you have to go into your doctors during that time. And it depends on where you’re living and the transportation and if you have kids or not. And there’s so many like, different aspects of it that the the logistics of it are insane. So I would miss so much work just from going to like North Shore Boston to in the city Boston like for my doctors. And they would just be like upset of me, like having to miss that work or like having to like navigate. And I just was like so out of my control. I wish I could do it all, but I’m not I’m not superwoman, unfortunately.

Amber Tresca 00:17:38 Oh, but you are, which I wish. Sometimes if a woman has to go to the doctor. I mean, I have three doctor’s appointments next week. Yeah. You know.

Katie Neu 00:17:47 It’s also like I was in therapy full time with my corporate job, and no one likes that conversation. So a lot of people like, just do it virtually from home now and don’t talk about it.

Katie Neu 00:18:00 You know, they just block their calendars. And that’s a stigma in and of itself. Or like we’re trying to get over this mental health stigma, yet we can’t talk to our bosses and state like, oh, we have therapy every week on Tuesdays at one. And that’s just because that’s the time that works for my therapist. It’s virtual. I’m going to be out of office, and some days I might need an extra hour afterwards. But that’s unacceptable in the corporate world. And that’s wild to me, right?

Amber Tresca 00:18:26 Yeah. Yeah, that’s totally true. Yeah. Especially when there are. I hate to put it this way, but sometimes it seems like lip service, right? It’s like there’s a checking the box situation that’s going on is that, we want to talk about mental health. We want to talk about also physical health. You know, Covid brought that into a sharper relief. And yet, there’s usually not a lot of accommodation when it comes to, like, that 40 hour workweek.

Amber Tresca 00:18:58 I worked for a publisher years ago that actually had a 35 hour workweek that felt like winning the lottery because and then also we got certain like extra days off. It was the best because it was a family owned company, and that was how they decided they wanted to do business. And it fit so well with what I needed that I actually I took a pay cut to go to this company because because the benefits were were there and would support me better. And I never had to do that dance of I got, you know, I got a doctor’s appointment. Another one. Were you just at the doctor’s, you know, x number of days ago. And it’s like, well, yeah, because I have more specialists than my 80 year old grandmother, you know? So it’s like, yeah, I just I didn’t I, I was able to work around it, However, like I said, I took a pay cut, so it was like costing me money.

Katie Neu 00:19:51 There’s always there’s always like a trade off. I feel like there’s always that trade off. There’s always there’s that other step that has to be navigated, and there needs to be a way to get rid of that to make it easier. And I think it’s having that conversation, like with your doctor as well, of like just a well-being check of like my well-being at work is now. Well, I think my doctor was shocked when she, like, was filling out the work accommodation paperwork for me. And she was like, wait, I haven’t done this in years. And she goes, why haven’t I done this in years? And all of a sudden she was like, wait, what are my patients doing? And she’s like looking at me and she like knows I have the platform. So I was like, it’s easier to quit than to have the hard conversation of like, oh, I have IBD and I need this additional support. And she was like, that’s yes. And I was like, oh, yes, I know. And she was just like, what? You know, I just.

Amber Tresca 00:20:50 We were. What do we do here?

Katie Neu 00:20:51 Yeah. And she was like, I need to start asking that question myself. And she took it upon herself to be like, I need to ask, like, how is work going? Like, do you need accommodations? Like that’s okay. And I was like, yes, you should. Scary. Yeah.

Amber Tresca 00:21:07 Yeah. Definitely scary. You know, and then that’s more work on their part. And that’s part of the system. And that’s unfortunate as well. But I will say that only my gastroenterologist and also my therapist have ever been the people who were like, do you need me to write a letter to somebody, you know, and especially when you’re very young and you don’t realize that that’s how this all works? Yes. You know, so that was really very helpful. But it, you know, it’s it is more work for them, which is unfortunate. But also that’s the kind of support that we need.

Katie Neu 00:21:39 Right. I think it’s starting to become more automated, at least at this point. Or like more like I know my doctor has like tons of the letters saved, you know, like one for an appeal, one for this, one for that. Like, it’s a lot of, like, she’s very operational, but she’s like streamlined that work for herself. So I would hope that they see that more as like less work worked for them down the line. If it’s like full health care for the patient.

Amber Tresca 00:22:04 Yeah, that makes sense.

Katie Neu 00:22:05 Yeah.

Ad 00:22:15 For adults with Crohn’s disease or ulcerative colitis symptoms, every choice matters. Tremfya offers self injection or intravenous infusion from the start. Tremfya is administered as injections under the skin or infusions through a vein every four weeks, followed by injections under the skin every 4 or 8 weeks. If your doctor decides that you can self inject trim via proper training is required. Tremfya is a prescription medicine used to treat adults with moderately to severely active Crohn’s disease and adults with moderately to. Severely active ulcerative colitis, serious allergic reactions, increased risk of infections, or lower ability to fight them, and liver problems may occur before treatment.

Ad 00:22:56 Get checked for infections and tuberculosis. Tell your doctor if you have an infection, flu like symptoms, or need a vaccine. Explore what’s possible. Ask your doctor about trim via today. Call 1-800-526-7736 to learn more or visit. Tremfya.Radio.com.

Katie Neu 00:23:20 Katie — we were both diagnosed young and so the IBD has been there for a lot of milestones. You know, high school, wedding, you know, all of the things. And the white paper gives us more stats that I find are interesting. So and there are two of these and I find them concerning. The first is that 75% of women with IBD experience body image issues. And the other is that 40% of people say that IBD gets in the way of their intimate relationships, and you just gave a very audible sigh. So my question was going to be, does this surprise you? I feel like probably this does not surprise you.

Katie Neu 00:24:02 No, it doesn’t surprise me. And as someone who was like literally asked as a child if I had an eating disorder because of how skinny I looked with my Crohn’s, like by medical professionals, mind you, like knowing I had Crohn’s, that it’s got it’s outside of my control and it’s more so of like once more of that stigma and like the society expectations of like, this is what a body is supposed to consistently look like.

Katie Neu 00:24:28 And it’s BS, like, it fluctuates and it changes and it’s very unfortunate. And it’s scary when you go through those bouts of not recognizing yourself in the mirror, but like, it’s very important to be able to like, ground into the idea of like knowing that other people go through that as well and talking to them about it. I think like when I, no matter how many times I go through it, like I made a TikTok about it, actually, and I got it went a little viral. And like so many people were responding about like their prednisone experience of just like, oh, like my face got puffy or oh, my legs are so puffy or just like different parts of their body. And I was like, oh, that’s super helpful. I forgot about that. Or they were like, then all like the water weight came off. I was like, oh, I forgot about that, you know? And you get reminded of like what is actually happening. and that you have to, like, learn how to just go with the flow.

Katie Neu 00:25:25 And something my therapist actually said was she also has IBD, and she was saying that she keeps like different sized clothes for different times in her life. And I was like, oh, that’s actually really smart. So she’s like, I have my friend in his own business clothes. I have my not, you know, she was like, it’s just different, you know, seasons under my bed. And I was like, genius, kind of take that. And the intimacy aspect, I mean, like intimacy and sex can be, you know, interchanged and are not exclusively the same thing. Yeah. I think that, you know, sexually, when I was in the dating world and I had fistulas, I think it was very interesting because I was scared of how, like, men would perceive me. and they didn’t care. They didn’t care. So they don’t care. And like to me that really showed one who I was dealing with. And to it just was like, okay. Like it kind of released that like pressure I had on myself.

Katie Neu 00:26:26 And at the end of the day, like if they did care I was like, oh I don’t want to be with you anyways. Like if you care, like it’s not even worth my time to like talk to you type of thing. and I think the intimacy piece of like someone actually understanding, like what your body goes through or like living with you and like seeing like how many times you do go to the bathroom and sometimes you’re not aware of it, but they they are and they’re like, whoa, you okay? And you’re like, oh, why? You know, like.

Katie Neu 00:26:59 Why do you ask? Why’d you ask? and I think there’s just comes a point where, you know, obviously, once you find the right person on an intimate relationship basis, like they’re going to care and they’re going to learn about your body and they’re going to learn about the disease, and they’re going to be there for you during like, the really gross and down side of it and like dark days and the good days.

Katie Neu 00:27:21 Like, that’s what like a real partner is for. But I think that breaking that stigma, helping with, you know, talking about it as much as possible and like being open to having a conversation with each other of like within the community of like, you know, like, yes, I’ve had sex when I’ve, you know, had fistulas or when I’ve had kittens and, and this was my experience. Or yes, I find sex painful and this is the reason why. Or you know, this is what helps me. Like, we’re only ever going to get better by talking about it. Unfortunately, whether that’s privately in DMs or texts or whatever, or, you know, publicly on a platform like this where it just does have to start getting talked about more.

Amber Tresca 00:28:04 Yeah. I think we’re getting there. We’re still not all of the way opening up everything and dealing with a lot of these stigmatized issues. And what was said to me once about a relationship I had that I had a sudden realization that I knew that things were probably going to get worse for me.

Amber Tresca 00:28:26 I didn’t know when, I didn’t know how, I didn’t know what, what form that would take. But I knew the man that I was seeing was not going to be there for any of those things. Right. And so that was rough, you know, that was rough. And then when I. I never said that to him, like I never said to him, look, I, you know, I don’t know what’s going to happen with my stupid colon and I don’t even know how to put it in terms to make you understand. Like, I just didn’t even have the language, so but, you know, for him, it was like, I of course, I’m, you know, he, you know, he thought that he would be up for it. And I was like, I really I can’t see it. I can’t see it. and so that was hard. But that opened the door to me meeting my husband, who’s been with me through, you know, two surgeries and three pregnancies and one pregnancy loss and like, like all of this and, yeah, it just would have been very different had I tried to hold on to that relationship of a person that really wasn’t for me.

Katie Neu 00:29:35 So it does. It’s unfortunate when you have like those experiences. I definitely have had them in the past of like thinking someone’s like the right one and then realizing that, you know, looking back at it, my health was in jeopardy. The entire relationship where it just was never put first. It was never prioritized. It was talked about. It was it was understood, but it wasn’t giving me the support to rest or like take a weekend off from partying or like anything. It just was like this, this what I thought was a healthy dynamic until I met, like my current husband. But like, you know, you really have to be with someone that’s going to like, watch you, watch you throw a fit about not getting your Dunkin Donuts when you’re in the hospital because the Uber lost, you know, like they have to be able to handle that phone call. And it’s a very special kind of phone call. And it’s the last straw, literally. And it’s just something that like takes a special kind of person to be like, wow, that was a lot like, you know.

Katie Neu 00:30:41 But I love you, and you’re going through it, and. Whoa.

Amber Tresca 00:30:46 But also, I mean, we’re in New England. Come on. Everybody’s got to have their Dunkin.

Katie Neu 00:30:50 I was like, come on. That coffee, I was like, why is everyone making a big deal about this? Like, I’m crying in a hospital hallway. I don’t think you’re taking this seriously. Not. It was like I always got the Uber right there. I was like, Uber Eats. You betrayed me. Someone else took my Dunkin. I was like, Yeah, they called it the Dunkin incident. I was like, that’s fine. I was like, come on, I was on steroids. I just wanted my coffee to do my iPad art. Leave me.

Amber Tresca 00:31:26 Coming up, Katie and I talk about why it’s so difficult to get involved with community.

Amber Tresca Katie, you and I both know how important community is. You created badass with a badass, which may or may not be bleeped. When I produced this episode, I created about IBD, but in the IBD Social Circles survey, 60% of people said they were afraid to take the first step in joining a support group.

Amber Tresca 00:32:07 I get it. It’s scary for a lot of different reasons, but the follow up here is that 44% of people who do connect with community find their mental health improves. I think that’s huge. so I’m wondering, what’s your advice for these? What did I say? 60% of people, they said that they’re nervous about finding or joining a support group. I, you know, either online or in person. People just aren’t doing it right. So what would you say to those folks?

Katie Neu 00:32:44 It’s it’s scary to come out in like actually go to something or even virtually to sign up for it, because I think in that moment you’re accepting something. You’re accepting that, like, you really do have this diagnosis and you’re taking it to that next step of like, oh, I’m implementing it now in my life. Oh, I might get support. And that means, like, I’m going to have to face certain things. And for me, that’s why I created bags for the badass that might get bleeped, that like I was looking for community for my perineal fistulas, because at that point I had friends who had Crohn’s, but I didn’t know anyone who had fistulas, let alone peritoneal fistulas.

Katie Neu 00:33:26 So I had the punny idea, came to Instagram, found people like you, and like started to talk about my fistulas. And I was like, wait, there’s like a lot of people out there. and I started to be able to navigate like things that were like really confusing to me on, like, you know, an emotional level or a physical level and start piecing together of like, oh, like now I feel like I can go out and talk about this more. I feel more seen or I never thought of it like that. Maybe I should bring that up to my doctor or like, That needs to get researched and talked about more. Oh, we’re all experiencing this, you know, like I started to gather more of that information. I think that there are days that have been extremely dark for me, and I think that if I didn’t have anyone that had IBD in my life, I wouldn’t be able to navigate those days. I think that no matter how close I am with the supports in my life, there comes a point where it’s like someone else has to know the pain to be able to see the pain and understand the pain.

Katie Neu 00:34:35 And I think it’s, you know, navigating to the right people. People who have had, you know, experience on patient advisory boards or have been talked to or have been online for a long period of time, like yourself. And it’s coming to those people with like the question of, I don’t know how to do this. And I think, like a lot of people don’t realize that so many of us are open to have that conversation or we’ll get to you. You know, sometimes my I don’t get to every message. It’s a lot. It’s a lot. But I make make the effort to at least like, connect them to someone or be like, this person I know has, you know, the exact fistula that you’re talking about. Like you can talk to them about it or navigating them to at least Crohn’s and colitis. But like taking that first step I think helps get you into the door of the support group as well.

Amber Tresca 00:35:30 Yeah, it’s well, it can be intimidating to send a message to a stranger. So I get when people don’t want to do that.

Katie Neu 00:35:39 I don’t know, I’m from the Tumblr and like the Omegle or whatever it was here. So it’s like I’m used to strangers on the internet, so I like have fun. I don’t know, like we, we DM celebrities for fun all the time. Or at least maybe just me. I don’t, I don’t know, but like, it’s just to me I’m like, hey, I’m going to hit you up and be like. Love your content. Like and I think like I always people have just asked me like straight up, like I saw you took this medication. I’m taking it. Can you help me? And that’s fine. Like I’m going to be like, okay. Questions. So go for it. Like I’m never going to be like, no absolutely not. And I think that that’s also, you know, taking that step forward. We live in a more digitalized age. I think it’s helpful in that way.

Katie Neu 00:36:26 But also like remembering that there’s different demographics and being able to get to them as well.

Amber Tresca 00:36:32 Yeah.

Katie Neu 00:36:33 Oh, okay. Like we’re all here fighting for our own personal reasons, and it’s for a patient. At the end of the day, whether it’s ourselves, someone we love, someone in our social circle, like it’s it’s happening like it is coming or is already here. But I think that it’s going to be more and more and more.

Amber Tresca 00:36:55 Agree. Agree. Yeah. We’re seeing it. It’s happening. Yeah. We’re part of the sea change thankfully. So tell me what you’re up to. Tell me about probably bleeped badass with a bad ass. And where everyone can find you and all of your brilliant, scintillating authenticity.

Katie Neu 00:37:17 Thank you. so, yeah, you can follow me on Instagram. So it’s badass. Bleeped dot w a dot. You know the rest. you’ll find me. It’s. Sometimes the SEO, though, has been like people are looking me up at, like, when I’m meeting them and they’re like, I can’t find you. Yeah. So I need to work on that.

Amber Tresca 00:37:38 You know what I think we did last time? I think we spelled it out.

Katie Neu 00:37:40 I think we did too. Yeah. So you can find me under my name, Katie. New now. And so the bat everywhere and reach out with questions about fistulas, Crohn’s of any sort. Ulcerative colitis. I’ll send you to someone I know. Like always reach out.

Amber Tresca 00:37:58 Yeah. Great I appreciate that. I also want to point out that you have a Substack.

Katie Neu 00:38:01 Oh my god. Yeah I don’t know anything about myself. I have a Substack. I’ve been trying to get that more up and out. But I have always found a creative outlet in writing, and I find that Substack is honestly challenging to my attention. And so I like to go on there to be able to make sure that I’m taking in more information and reading for longer periods of time rather than scrolling. So I found, like, a lot of solace in Substack and also and just sharing my story, sharing a little bit of my past and just kind of just connecting that way.

Katie Neu 00:38:33 I’ve found it to be like a really cool outlet and really, authentic. And I’ve been working with the Crohn’s and Colitis Foundation as well. I’m a social media ambassador for them, and I think that’s everything I’m doing right now.

Amber Tresca 00:38:47 That’s all I know about. I just wanted to make sure you’re talking about the Substack. Yeah, I do love getting. I am a subscriber, so I do love getting the emails and seeing what you have written, and I enjoy trying to get it out, putting it in my own email newsletter so that other folks can find it. Katie, you’re such a joy. I am so grateful that I was trying to remember what was our first point of contact.

Katie Neu 00:39:14 I don’t.

Amber Tresca 00:39:14 I don’t remember.

Katie Neu 00:39:15 And that’s how it is with, like, all of us and like, we know who, like all of us are, but like, you know, a lot of like the, the big advocates. And it’s really funny where like, we’re starting to come to a point where it’s like I meet people in industry and it’s just like everyone’s on a first name basis.

Katie Neu 00:39:30 They’re like, oh, Amber. Yeah, I know Amber, or I know so-and-so and I’m just like. It’s so strange.

Amber Tresca 00:39:35 And we all know each other.

Amber Tresca 00:39:36 Yeah, and we all know each other. But I’m like, I don’t know how we know each other. But like, thank you for, like, referencing me and like, I’m like, hey guys, thank you so much. Like, someone just said that you sent them my way. Like, wow. Like. Thank you.

Katie Neu 00:39:49 That is one of the very unexpected things that have has come along with doing about IBD is that I have met such a wide spectrum of patients, people that I’ve reached out to, that I’ve chased maybe a little bit here and there, and clinicians. But then also past couple of years, folks have been coming to me and asking me to showcase their voice, which has been just amazing and a lot less work that I have to do. But also that means that I now know so many patients that if someone comes to me and says, I have this specific situation, I know somebody.

Katie Neu 00:40:31 It’s kind of wild that that’s. It’s like the Rolodex. You know, like, people don’t know what a Rolodex is anymore. But, you know, it’s like.

Amber Tresca 00:40:39 Watch Mad Men.

Katie Neu 00:40:40 It is like what it is. Like, I it’s so strange where it’s just like, I can recall someone that DM’d me, like, three years ago, and I’m like, wait, they had that weird complication, and I’m like, hey, you could talk. Try it, try it out. I’m gonna hit them up first. But like, you could go over there and talk to them. And I think that that’s like the magic in it.

Amber Tresca 00:41:00 Yeah. Well, thank you for doing this with me. Of course, for the first time that we’re doing this in this way. And you were the perfect person for it. I knew it right off the bat. And, I was right again to my husband, as I often am.

Katie Neu 00:41:14 So mine too. I mean, like, recorded line.

Katie Neu 00:41:15 Hey, honey. Always right. Even when I’m wrong.

Amber Tresca 00:41:20 I’m absolutely. A super listener. Check the show notes to find links and information about the topics discussed in this episode. Plus, get a written transcript and much more on my website about IBD. If you enjoyed this episode, please consider sharing it with someone else or leaving a rating in your podcast app. Reviews and ratings help me grow this show and bring you more great content. Thanks for listening and remember, until next time, I want you to know more about IBD.

About IBD. Is a production of Mal Intel Enterprises. It is edited, written, produced, and directed by me, Amber Nixon. Sound design is by Mack Cooney. Theme music is from Cooney Studio.

Katie Neu 00:42:15 Coming up, we will be talking about my two buttholes.

Amber Tresca 00:42:16 You never know what I’m going to do with this. I’m sure you don’t care.

Amber Tresca 00:42:19 Oh, I don’t care. As long as my name’s in it, I really don’t care as.

Amber Tresca 00:42:23 Long as you tag me. [Laughter]

Leave a Reply

Your email address will not be published. Required fields are marked *