About IBD Podcast Episode 168 - Why Representation Matters for the LGBTQ+ Community - Featuring Cass Condray

Why Representation Matters for the LGBTQ+ Community – About IBD Podcast Episode 168

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There’s a need for more research addressing social determinants of health in the inflammatory bowel disease (IBD) community. Cass Condray, an IBD researcher who also lives with an IBD, points out the lack of information and resources focused on the unique experiences of LGBTQ patients. Cass also talks about the significance of representation in research, and the impact that intersecting identities have on people’s health outcomes. Plus, we talk about Cass’ web site, PrideAndPoop.com, what his hopes are for the future, and what there is to do in Oklahoma.

Find Cass Condray at:

Find Amber J Tresca at:

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

Episode transcript and more information at: https://bit.ly/AIBD168

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Transcript (Machine Generated)

[Music: IBD Dance Party]

Amber Tresca 00:00:05 I’m Amber Tresca and this is About IBD. I’m a medical writer and patient educator who lives with a j-pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.

Welcome to Episode 168!

IBD doesn’t discriminate. It affects people of all ethnicities, socioeconomic groups, and gender identities. Many aspects of general IBD are still understudied. Which means that there are not always good resources or information available for people who are part of historically under-represented groups.

My guest is Cass Condray. Cass is an IBD patient and researcher. His research is on the impacts of bathroom bans on transgender people who live with a form of IBD. He is passionate about increasing patient care outcomes and awareness, because resources and tools for sexual and gender minorities who live with IBD are difficult to find.

As a patient leader, Cass found himself answering questions from the Pride community, because there were so few answers available. He created PrideandPoop.com as a centralized resource for LGBTQIA+ members of the IBD community.

One programming note: we do briefly discuss sexuality as it relates to IBD, in case you want to put on some headphones while listening, or take a look at the transcript.

OK, on to the show!

Amber Tresca 00:01:25 Cass, thank you so much for coming on about IBD.

Cass Condray 00:01:27 Happy to be here.

Amber Tresca 00:01:29 Oh, great. So first I want to start with an introduction. So our listeners get a little preview of who Cass is. So would you introduce yourself to us?

Cass Condray 00:01:40 So hi everybody. My name is Cass. I work in IBD research, but I also have IBD. And my main interests are, I guess, investigating like social determinants of health, particularly like disparities. IBD and like the LGBTQ community. Like how that impacts like a quality of life. And like like health care outcomes. And my current work focuses on, bathroom access and, like the impacts associated with that. And I currently live in Norman, Oklahoma. I’m a senior at the University of Oklahoma. I’m a microbiology major, so that’s completely different from the other research that I do.

Amber Tresca 00:02:27 So you have your fingers in a lot of different pies, I think is, is is where we’re netting out.

Cass Condray 00:02:34 I dabble in a lot of, a lot of science.

Amber Tresca 00:02:37 Yes, I, I love that, I love it, and the research that you do is so needed. And I also think it is super impressive that you are doing this work and that you are in this, in this profession that’s so demanding And yet you are living with the stupid IBD and everything that it brings. So I wonder if you would take a few minutes to tell us about, like when were you diagnosed, what that was like and then where you are now with your IBD?

Cass Condray 00:03:15 Sure. So, I was diagnosed, in middle school, actually. I think even that was so long ago. I think, like 2012, I’m like, I don’t even think of the years because it makes me feel old. Yes. and I’m like 23. I don’t even know why that makes me cold. like, I can only hold on.

Amber Tresca 00:03:36 I’m 51, so. Okay. Don’t even. All right. All right. Hello.

Cass Condray 00:03:40 Like, I’m aging, like gray hair.

Amber Tresca 00:03:43 But still. Yes.

Amber Tresca 00:03:44 Middle school was. Was a long time ago. Yes.

Cass Condray 00:03:47 So eons ago in middle school, when the dinosaurs were roaming, I, I was having a lot of bloody stools. Like I just constantly, just sometimes just all blood. this was going on for about two years. wow. And I was really, really good at hiding it. actually, like, nobody knew. I didn’t tell anybody, and I made sure to keep it a secret. Which. Do not do that. I mean.

Amber Tresca 00:04:21 Yeah.

Cass Condray 00:04:22 So now I don’t have to do that. but part of that was because I was scared. I guess because, around that time, my mother had passed away, from peptic ulcer disease. and we think she might have had Crohn’s disease. she actually never, felt comfortable going to the doctor. for these gastrointestinal, issues because of, like, the treatment that she had experienced in the past. So she had just, lived with it. and that excruciating pain. And I had watched her and helped take care of her and those last years.

Cass Condray 00:05:07 and when I, like, saw myself pooping extreme amounts of blood, I first told myself, oh, it’s just like lactose intolerance. Like, it should be fine. I’m not lactose intolerant at all. I don’t even know where I got that idea from. I.

Amber Tresca 00:05:27 I think it was a big thing at the time. It was probably discussed a lot at the time. Like. Yeah. Yeah.

Cass Condray 00:05:31 Everybody was like, oh, just cut out milk. Yeah. I’m not even lactose intolerant. I don’t even know where that idea came from. I can eat cheese. Then, one day, I forgot to flush the toilet, and it looked like I just pooped glass or something. It looked like a murder scene. It was very bad. and my dad saw it. and he understandably was like, why did you hide this from me? Or he cut. He didn’t say, why did you hide this from me? He was like very concerned. yeah. We went to my pediatrician, had a referral, to pediatric GI, had a scope, and then diagnosis of ulcerative colitis.

Cass Condray 00:06:15 There wasn’t really any information that was given to me or my parents, really, about what ulcer class was. it was explained as more of, like a a like it’s your diet, like just, you know, eat differently, blah, blah, blah. I had, like, a lot of allergic reactions, to, like, medications as prescribed, which was fun going through step therapy all throughout, like childhood, to find medication that, like, wouldn’t send me into anaphylaxis. I was essentially in a flare all throughout high school and middle school. I actually don’t know. I was looking through my records. I don’t know if I ever had like a CRP under 400. I just, but it was okay. I survived. and that was until 2020, when I had a cardiac arrest caused by a rare genetic heart condition that then I didn’t find out until three years later. Because of that, when I was in a coma, because of that cardiac arrest. I was, like, taken off of all IBD medications.

Cass Condray 00:07:24 I was only on one. but my IBD was very uncontrolled. and I was, in a severe flare as a result. I had an illness, you know, pain, colitis, the whole whole nine yards. I was then switched to biologics, which were great. Fix everything up. but the, heart condition does, Complicate things because I might be the only person in the world that has IBD, a aabc LGBTQ. You know all the acronyms. so I guess growing up in Oklahoma, like being. Like a teenager going through all the changes that a teenager goes through with IBD. But also being part of the LGBT community and like figuring all of that out and going. Through like those experiences. It was it was hard. like being on 80mg or. Prednisone for months at a time when you have a crush is like. Sucks. You know, my IBD is, much better controlled than it was four years ago. And. I’m able to, you know, do a lot more. I mean, there’s still good days and bad days.

Cass Condray 00:08:44 But, it definitely is something that there’s significant. There’s like really far reaching and considerable impacts when you have those multiple intersecting identities.

Amber Tresca 00:08:59 Yeah. For sure. And, you know, you experienced severe trauma. Like, I think it’s okay to just name that. And a couple of things standing out from your story. Is that the reason why your IBD was discovered by an adult was in forgetting to flush the toilet. And when I tell you how common that is, it’s really like like it should be studied. Yeah, because I’ve heard from so many people that that’s they were hiding it, not hiding. You know, I don’t know I don’t know how to really contextualize that, you know, necessarily, but that something was happening with them. They weren’t able to discuss it with anyone. And then that’s how it was discovered is just like, it’s really a wild thing. Although I think you were dealing with it for a lot longer than a lot of people. I can’t imagine what your colon looked like at that point.

Cass Condray 00:10:00 It was like it was who we were fighting demons in there, and we were like, oh, whoa. There was like, oh, I mean, yeah, that was that was a little more than lactose intolerance.

Amber Tresca 00:10:12 A little more than lactose intolerance. Yeah.

Cass Condray 00:10:14 I mean, but like when you’re if you’re like eight years old, ten years old, you’re, you see, you put blood, you’re you’re either you either think like, oh no, like I’m scared. and a lot of kids, when they’re scared, they’re like, I, they have like a few responses, curl up in a ball and don’t tell anybody or, like, have a defensive mechanism. and that’s what I didn’t. I curl up, I was like, I’m. I’m scared. And I tried to make excuses. I was like, oh, Lactose intolerance, blah blah, blah. It didn’t obviously it was.

Amber Tresca 00:10:50 Didn’t make sense was true. Yeah. But as a child you didn’t know. So I also found it interesting that you said I survived.

Amber Tresca 00:10:59 And I find that interesting because it’s for so many of us with IBD, that’s kind of our benchmark.

Cass Condray 00:11:09 Yeah.

Amber Tresca 00:11:11 You know, go. Well, I lived through it, and I’m here to tell the tale, and it’s all fine. Yeah. That’s how we talk about things. And it’s such a wild way to think about the situation.

Cass Condray 00:11:23 Yeah, I mean, I was I was dead, and like, I, there’s so many things that I’m like, well, I’m living. Because it could be worse.

Amber Tresca 00:11:39 yeah. I was recently, the last time, I think it was in D.C. See and I, I think I, you know, had gone to like leave my luggage with the, with the baggage folks or whatever it was. And I remember walking up to the man at the counter and saying, good morning, how are you? And he said, I’m alive and grateful. And he like, no pause. He just goes, I’m alive and grateful. And I was like, you know what? That taught me something.

Amber Tresca 00:12:06 I was like, that’s that. I’m taking that forward with me.

Cass Condray 00:12:11 And like, I mean, after like literally like dying. I’m like, well, I’m like, I can’t do, like, there’s some things I can’t do. I guess, like, because of, you know, there’s something like things I’m limited in. but, you know, I just take it day by day and I’m like, you know what? I’m alive. I can do this. some things may suck extraordinarily disproportionately. they may be disproportionately bad. are harder for me than somebody else. But there’s people, I mean. Like, my mom isn’t alive because of, like, negligence. That and but and I’m like, you know, I guess it could be worse. It’s pretty bad. But I was dead one time. I guess it could be worse. And I survived. I’ve survived this long. Hopefully I survive longer.

Amber Tresca 00:13:09 Agreed. The research that you do plays into all of this your life experiences and then, you know, wanting to, to thrive like like I think it’s okay to say that we all want to thrive and not just survive.

Amber Tresca 00:13:26 And we know there’s a lack of research about so many aspects of IBD, and there’s more research being done now than, for instance, when I was diagnosed. So that’s very hopeful. But I work in other disease states, sometimes other than IBD. And I noticed the disparity that there are other disease states that have much more research and that’s, you know, money, all of that going into understanding how to how to better manage them. So and within the IBD community already, Under-researched is the LGBTQIA+ community under-researched in an already under-researched disease state. I’m going to ask you what, like why do you think that that is such a big problem?

Cass Condray 00:14:14 For me, I’m like, oh well, it’s obvious, but for people who are like who aren’t, you know, IBD researchers or who aren’t IBD researchers interested in like sexual and gender minorities, which is an easier way to say LGBTQ plus. it’s it impacts, you know, our like the quality of life and our healthcare outcomes. So like for example, like a cisgender, heterosexual female with IBD is going to have different healthcare needs, for example, than like a like a gay man with IBD or like a, like a transgender woman with IBD, or like a gay transgender man with IBD.

Cass Condray 00:14:57 So, like when there’s no research or data about like the the healthcare outcomes or like the healthcare interventions that apply to these, like these different patient populations, doctors are either left guessing or they they don’t know or like, they just throw up their hands and they’re like, oh, I can’t help you. they make uneducated guesses. and that that leads to bad outcomes for, you know, people like us, for example, like in, if you’re like a transgender person with IBD and you want to take gender affirming hormone therapy, but your IBD doctor has no idea. Like if that will have any impact on your, let’s say your lead levels are high or something like that, then you’re just left guessing. And then there’s like the research about like psychosocial psychosocial impacts, which are very important. And if we just like ignore like, oh my gosh, you know, and treat everybody like the same as this homogenous IBD, I guess patient population. we ignore the specific needs of this, like these, these patients.

Cass Condray 00:16:15 And then people get left behind and maybe can’t like, don’t get the help they might need. So but and then there’s like also something to be said about like, I don’t know seeing representation. so like being able to like see yourself or like seeing yourself in like research or, or and seeing that somebody cares About people like you. is is it seems not as important as the other reasons why increasing this research is is great. and it obviously doesn’t have like, real world like as much quantitative impacts and like real world impacts. But to be able to like know that there are people like there are doctors who treat IBD who maybe are like you, like who are part of the LGBTQ community, or who are just want to make like a concerted effort to help people like you or make your life better. It makes you feel like more included. It’s important. It’s for like people who are often left out of these conversations.

Amber Tresca 00:17:27 Yeah. And I you know, I think at the heart of it too, is maybe some hope, you know, some hope, which, you know, in the IBD community at large, of course, but then also some hope that in the patient population that you’re in that things can improve and you can get some answers because, wow, is there anything worse than going into your doctor? And they’re like, well, I don’t have any other patients that are like you.

Amber Tresca 00:17:52 Yeah. And with what you’ve got going on, I don’t know how to manage your IBD. Like that’s really very scary.

Cass Condray 00:18:00 Yeah. Or like when they say they open the door, like, I don’t know if I’m going to be able to help you. Oh, I’m like, okay. Right. And then to be able to know that there are people who will make an effort, even if they don’t have, like, the answers right now to be able to help you. They want to find a way. It’s just such a common theme. I’m not like in people with IBD and especially in people in LGBTQ people with IBD. It’s so common to see people who are like, I just don’t go to the doctor anymore because it’s I don’t feel like they listen. I don’t feel like they know anything about my identity. I feel like they don’t care.

Amber Tresca 00:18:48 Yeah, we don’t want that. That’s really. That’s really awful to feel that way. So. All right, so there’s a lot of work to be done.

Amber Tresca 00:18:57 So I’m asking you, Kass, what kind of research would you like to be done on IBD that would help the LGBTQ community?

Cass Condray 00:19:09 So, I mean, there’s there’s a billion things.

Amber Tresca 00:19:14 there’s a giant question.

Cass Condray 00:19:17 but I think definitely like the psychosocial impacts of, not only things like bathroom bans and like all of that because that’s the whole thing. that’s what I do. but the IBD itself. If you have periodontal disease or if you have like a periodontal fistula or peri peri anal abscesses as a result of your IBD, and you are an LGBTQ person who prefers to engage in introspective intercourse like that really can have a massive impact on your like, like mental health and quality of life. Yeah, and like same with like if you have to have like an IPR or like an the, the Barbie or Ken, but I believe they call it. Yeah. Like just like the things like that. and like or an ostomy all of the time people are like, I don’t think I will like, should ever have sex again.

Cass Condray 00:20:19 I haven’t ostomy like I was like in things like that. Like I don’t feel comfortable. and when your, your butt has like, like a cyst on it and you’re like, oh, that I mean, it’s understandable to feel like uncomfortable. Like sad, or so I think that is something that isn’t addressed. I think there’s some research on it, but not enough. And, it’s something that is really, impactful and important. I think that is something that I would definitely, prioritize or I think would be, important. And then, again, the people who are, who think that because they have IBD, they can never have sex again, like so many. I feel like every day I have to tell people, people I don’t know who’s telling them if it’s their doctors. Yeah, sometimes it is their doctors that because they have IBD, they cannot have sex. And I’m like, okay, I guess research about, how that happens and interventions to prevent that. Or I guess sex education.

Cass Condray 00:21:35 IBD yeah. Because obviously there’s safe measures. And like, you know, you don’t want to, you know, go wild. I’m like I’m never like, oh, I’m like like don’t like I’m like never like.

Amber Tresca 00:21:48 Yeah. I mean, I think you have to acknowledge the IBD. The IBD exists and it might impact your sex life. So, but, but here’s a solution that we can get to so that you can have a better quality of life.

Cass Condray 00:21:58 There’s a happy medium. Yes. Right. Like we like. We don’t like. We’re not we don’t have to be like, you know, but we aren’t. You don’t have to be, like, celibate because you have IBD. If you want to be, that’s totally fine. But if you are somebody that wants to have sex and you think that because you just got diagnosed with IBD, that you are banished forever. That impacts your mental health. You’re like, oh my gosh. You’re like, yeah, like so I think that would be important and obviously.

Cass Condray 00:22:35 Increase research about like, like gender affirming hormone therapy. Across the United States, there’s, lots of legislation, that’s curtailing like, gender affirming hormone therapy. And it might be too intersectional. because we’re we are barely getting research about the, the positive impacts of or about impacts of gender affirming hormone therapy on IBD. So I think research about the impacts of curtailing gender affirming hormone therapy on people, IBD might be too niche. Yeah. So might be like for my be thinking from a very small population. Right. But I think research on, gender affirming hormone therapy on different IBD, like therapies, because entyvio is not the same as Laura, as methotrexate, is, etc., etc.. Yeah. so I think, that would be important because we have that research for other medication interactions, but we don’t have it for, hormone therapies. So I think that would be more research about that sort of quality of life and like sexual and mental health, sort of, impacts of IBD. But I guess, I guess at the end of the day, there’s a parody in the research, surrounding LGBTQ people with IBD compared to their cisgender and heterosexual patients with IBD.

Cass Condray 00:24:04 And that leads to misinformed, patient care and worse outcomes for people like us. So.

Amber Tresca 00:24:15 Yeah, a lot of wonderful, research topic ideas there that hopefully, hopefully there’s somebody listening who has some.

Cass Condray 00:24:24 I’m like, I’m like, I’ll over my email. Who loves.

Amber Tresca 00:24:28 The ability? Yes.

Cass Condray 00:24:30 Can you just reach out to me? I would love to collaborate. I have some personal experience. Right. I live in Oklahoma. Let me up. Thank you.

Amber Tresca 00:24:40 So. But that’s only part of this situation, though. Because you’ve described how there is, some distrust in the pride community when it comes to working with health care professionals. And that’s even just, you know, going to the doctor. Okay. We’re not even talking about research, which is a whole other situation. So if researchers do want to engage with the LGBTQ community and fill some of those research gaps, how can they go about that?

Cass Condray 00:25:21 Sure. I mean, I think just treat like everybody else or like you would want to be treated.

Cass Condray 00:25:28 And remember that we’re not a homogenous community. so somebody like a gender female who’s who identifies as a lesbian. It’s going to be different than a transgender like male who identifies as, like, homosexual. Like, we we have different, experiences and different, different ways we go about life. like, it’s a, it’s a blanket, like, it’s a, it’s a group term. but there’s so many vast differences, within the community. And I think just remembering that everybody has and even within those individual identities, everybody has a really unique experience with both their identity and both with IBD and with healthcare. So some people have had a great experience in healthcare, and that’s awesome. And really like I’m we’re very happy for them. And some people have had a terrible experience with health care, and I know people who just don’t want to go to the doctor like they have IBD, they have like severe Crohn’s. And because of how they’ve been treated, based on their identity, they won’t go. and I’m like, I can’t fault them.

Cass Condray 00:26:45 Like, I, I’m like, I, I get it. Like, I especially in places like Oklahoma, in Texas, it’s it can be extremely, extremely hard to find somebody that, treats you with respect. So I just, just understanding the historical background of and the context in which you approach people, is really important. And especially transgender patients, there’s a particularly troubling history with, like research and medicine. So there’s it’s understandable. for, like, patients, the approach to be apprehensive. So I think just understanding like these like historical injustices and the current, like, situation, you know, and just being respectful and understanding if somebody says no. Yeah. And understanding why that is. because that might be just as important for your research as somebody saying yes, honestly.

Amber Tresca 00:27:57 Wow. No, that’s that’s a very important that’s a very important point in engaging people in research, because it’s not always about what you want to learn. In the process of putting together a research study and trying to get a certain outcome out of it.

Amber Tresca 00:28:19 You may actually find that the research goes in a different direction. Because we’re dealing with humans.

Cass Condray 00:28:26 Yeah. I’m like, if you have an experiment that goes like exactly the way you want, whether it be in cell biology, chemistry or like applied research with humans or something is wrong. Like no user could ever, ever go. Exactly right. I actually like I don’t think I’ve ever had an experiment go exactly how I planned. If it did, I. Something has gone horribly, horribly and like. And I need to do it again. Yeah. I’m like, I need to check something. So call the CDC.

Amber Tresca 00:29:00 Call the CDC.

Amber Tresca 00:29:03 All right, Cass, you’re out. You’re you know, you’re doing the work. And you have also developed a website. I love the name of your website. It’s called pride and poop. Aside from the obvious or maybe the obvious, what made you start your website?

Cass Condray 00:29:17 There’s two reasons. Part of it is like a little bit selfish. I started partially for myself because I, I had a question and I was like, I googled it and I couldn’t find an answer.

Cass Condray 00:29:29 and then I would get on, you know, social medias as you do. and I would I would see so many questions that were LGBTQ pupils, IBD asking questions like or just posting like, oh my God, I was just saying this to Crohn’s, I’m gay. Things like that. Or asking like what they can do or and then asking just questions that were heartbreaking at the same time. And then when you Google it, you’re like, oh my God, there are no resources. There’s nobody answering these questions. That isn’t extremely terrible. Like, I think if you Google gay men and IBD, you get a paper that says homosexual men are twice as likely to have IBD. So I’m like, if that’s what you’re googling when you Google, I’m gay and I have IBD. Yeah, you’re going to be like, okay, so this is my fault. I haven’t had the time. And that’s when I, when I was diagnosed, I was like, is this my fault? Yeah. and that’s half of the half of the posts are like, I’m gay.

Cass Condray 00:30:42 And I was just diagnosed with diabetes. That’s my fault. and and I’m. And so I’m like, oh my God.

Cass Condray 00:30:50 No.

Cass Condray 00:30:51 Breaks my heart every single time. Because people are they’re like, profusely apologetic for asking questions that nobody should be sorry for asking. Just like I’m like, I want you to like, I want to have sex. I’m gay. And like, they’re in complete remission. But their doctor’s like no. And I’m like I’m. And I preface preface it with I’m not a doctor, but I’m following like, common sense. You know, guidelines. The impacts, like I don’t know, is externalized or internalized. I guess discrimination. Has had to where everybody was like thinking just really incorrect. It was incorrect and bad. so I was like I I’ll make this to like help, help answer I guess some of these questions because it came to the point where then people were asking me and I was like okay. Oh I’m not I’m not a doctor. I just, I just kind of know some things.

Cass Condray 00:31:58 And so I created that website and I sort of pieced together what I could think of. So I started from, you know, like, safe sex. You know, when I, when you go to the doctor, like, what to do at your first appointment, what to expect at your first appointment. resources, for, like people. People like us. Places to find, a supportive doctor, and stuff like that. and now something that obviously, like, I never had growing up. So that’s kind of why I made it, because I was like, I, I wanted to make something that, like, one would help people because, you know, obviously. And so, like, help fill these gaps because, like, nobody should like, think that, like they’re doomed to a life of like, I don’t know, nothingness because they’re gay and like to, like, make something that when I was 15 in high school and like wishing I was wishing I wasn’t LGBTQ, wishing I didn’t have IUD.

Cass Condray 00:33:06 And a lot of times I wish I didn’t have IUD. maybe I shouldn’t, but because it is hard. The combination of these two things, like these three things, I guess, with the heart and all of that, does make things harder. So I think making that, was a way to help other people, but also helping yourself. Yeah. Like, I guess, you know, my inner child, I’m like, it’s corny, but I was. I was born on the cob. That was really cool.

Amber Tresca 00:33:42 I think that’s valid, though. Yeah. I mean, I, I, you know, you you you yourself had an issue that needed to be solved. And then you saw how many other people also had an issue that needed to be solved. They’re not exactly the same. Yeah, but they’re in the same neighborhood at least. And so, you know, you took action to be the person that you would have looked for when you were 15 years old. Yeah.

Cass Condray 00:34:07 So and like, I mean, I think it’s really important for other LGBTQ people with IBD to feel seen.

Cass Condray 00:34:14 Yeah. because I didn’t think there’s anybody else like me. Yeah. Ever until, like, I went to D.W. and I was like, oh, my God, there’s other people. so I think, like, there’s like, there’s a really important aspect of feeling seen. every time I’m like, like, I, I see the impacts, like positive impacts for representation for like other people. I’m like. And I know representation is good. Like, I know it. Like I know it is a fact. But like every time I’m like, oh my God, when it happens to me, I’m like, oh wow, that was that was nice. So like like it does improve how you feel about yourself, to see your representation of people like you and that I know it does get better. even if it is, like, hard at the time.

Amber Tresca 00:35:09 Yeah, 100%. And. All right. I was on your website, of course, in preparation for speaking to you today. And listeners already know that I very much enjoy practical advice.

Amber Tresca 00:35:22 I, you know, I like to end things with. Okay. We’ve pointed out the problem, but where is the solution? So I want to ask you, how do we help the new IBD patient that’s a member of the LGBTQIA community. What are your tips to keep in mind? Because we want them to go to that first appointment with the gastroenterologist. So how do we help them through this?

Cass Condray 00:35:50 I think one of the most important things, and it’s it’s definitely under-recognized as a community, whether it’s just like friends or like some random person on social media. I mean, I know social media’s is bad in excess, but just reaching out to somebody who is is also LGBTQ and it has a IBD and, you know, telling them, hey, like, I’m about to go to my first appointment and having them, they’re like, well, over the phone, like, or Snapchat or whatever. And like being able to walk through that with somebody, and have that support because like, this is not a disease you don’t have to go through alone because like, even like if you’re aren’t, in the private community.

Cass Condray 00:36:42 And it’s harder if you are LGBTQ. So I think just like having a friend, if you can’t bring them with you, bring them with you over the phone or like text or whatever, and then like something I try to do and I’m, I always forget to do it. But like I write down, I write down like my chief complaint. Like if it’s like my tummy hurts or like I’m pooping blood for two years. No, I’m like, maybe we should talk about that. and I need to be a better advocate for myself. I’d say I’m like, I’m the worst person about this. But, like, if if they try and write you off, if they say, oh, probably just anxiety, I’m just stressed. which, if you’re peeing blood or if you’re pooping blood, it’s probably not stressed. I’m not. I’m not a doctor. I can give me advice. But but if if there’s blood coming out of your body, you know, I wouldn’t take. You’re just anxious as an answer.

Cass Condray 00:37:52 You know, you don’t have to take. Take that, as an answer. Don’t be afraid to, you know, seek like, a second opinion or go to a place that you do feel heard. because if you don’t feel You like affirmed or are comfortable in your health care like interaction. It’s not going to be effective in any way. Like you’re not going to feel comfortable going there. But you’re probably also not going to get, effective treatment. You know, it can be really hard to find that, in some places. So, I mean, try not to give up. Easier said than done. And again, it’s so corny, but I was born on the cob. But it does get better. I mean, one day, like your IBD won’t be as bad.

Amber Tresca 00:38:41 That’s totally true. I think at the heart of it, that’s always something to remember. One day your IBD will not be as bad. Yeah. Yeah, 100%. Especially if you can find effective care, which is not easy to find.

Amber Tresca 00:38:55 And unfortunately, most of us, in any capacity, but especially in the pride community, do have to work towards getting the care that we need and asserting that, no, it is not lactose intolerance. It is not something I ate. It is not because I’m stressed out. It is something else and I need more care.

Amber Tresca 00:39:19 So yeah.

Cass Condray 00:39:20 Obviously not IBD, but like my heart condition. Yeah, I it’s a genetic heart condition. that is like cardiac arrest and arrhythmias are caused by exercise. For years it was blamed on me like it was blamed on like my gender identity. and they did so many, like, so many STD tests. They never did. And when I went somewhere that, like, I felt hurt, like, you know, affirmed all that. they’re like, yeah, you have a genetic heart condition. And I was like, oh, okay. Oops. Like, Like, it’s when I’m seeing like when you’re seeing as a whole person, not as just, oh, you’re just having chest pains because you’re anxious and not because you’re having arrhythmias.

Cass Condray 00:40:13 There’s something to be said about finding a provider that is, I don’t know, accepting.

Amber Tresca 00:40:22 Okay. I’m going to ask you now about what your future goals are. It’s a question that I always hate, but, but what do you hope to achieve? And not that you have to do anything else. You put pride and poop together, and it’s a great resource. But what do you hope for your website?

Cass Condray 00:40:40 I mean, I just hope, like if it helps one person, like that’s all I want. if it can make one person feel less alone or isolated in their IBD, or answer their questions, because again, me, Google, you either get a bunch of Reddit threads or like papers are like, if you’re gay, you’re going to get IBD. so I think just I just wanted to answer their questions, and make them feel heard and seen. I mean, I guess in like a broader term like my future, like long term goals, like I just want to, you know, again help people with IBD like and you know, obviously I think outside of the IBD community and like I do obviously have like a passion I guess people and like, gastroenterology like in that affects like marginalized communities.

Cass Condray 00:41:45 so I think just if I can like, increase the quality of care that people can receive, that would be that would be nice. just being able to make life better for people like us or would be my main goal. I’m super lucky to work with the people I do and have incredible mentors and people that I looked up to and like what I said earlier about representation. Like the first time I read a paper, I was still like working in a microbiology lab, and the first time I read a paper that, had mentioned, like the LGBT community and IBD, I was like, oh my God, not to be, you know, corny, but I was like, this is like kind of like changed things for me. That was like when I switched, from doing bench research to doing what I do now. I want to continue doing that. I’m lucky to do what I do and work with people I do and have, the mentors and friends and the IBD and IBD research community that I do.

Cass Condray 00:42:58 Hopefully I get to have a long, long life to doing that.

Amber Tresca 00:43:03 Oh yeah, I mean absolutely, absolutely. And I’m just going to put it out there. I would like to see you get some funding. I am just going to come out right out and say it. I would like to see you get some funding.

Cass Condray 00:43:15 That was I you know, I love that. I don’t mind some funding because.

Amber Tresca 00:43:22 Yeah, because you’re providing valuable resources and great tips from from yourself and your own personal experience. And then what you’ve learned and working with the people in the community. But also what I’m taking from what you were just saying was that it can also be inspirational. And if people with IBD who are part of the pride community are thinking that so many, so many avenues are closed off to them, that seeing your website could inspire them to go into research, to be to start doing the research that we’re talking about, that we want to see. Like, you just don’t know what’s going to happen, what’s going to happen there.

Cass Condray 00:44:08 Yeah. There’s so many times that I was like, I can’t find any research on this, so I’ll just do it myself, you know? And I you can’t be. And there’s something to be said about representation, right? Like you can’t be what you can’t see. Yeah. But for sure there’s there’s times where I was like, I, I don’t see it. I’ll do it. I’ll, I’ll create the research because there’s a gap, I’ll fill it. And there’s so many people, in IPD research that were inspired to do IPD research because of their own experiences.

Amber Tresca 00:44:44 And if people if, you know, patients might not know that, but, you know, we know that to be true from working with the people that we work with and going to like big medical meetings and, and hearing the stories of the people that are in this space. So, I think that’s valid. I think that’s really valid. Yeah. So. All right. Kass, I want to you know, we got into some heavy topics that’s necessary to talk about these things.

Amber Tresca 00:45:07 I really appreciate your willingness to do so. I want to know a little bit more about you, though. So, what, what do you do out in Oklahoma for fun? What what kind of hobbies? What kind of.

Cass Condray 00:45:20 Things do.

Amber Tresca 00:45:20 You get up to?

Cass Condray 00:45:23 Like fun. What’s that? Well, I haven’t, like, I go to school. I really like. I like to read. so in Oklahoma, there’s there’s not a lot to do here. I’m going to be honest. there’s, like, some cows, I guess. I mean, I love to go get food with my friends. We got from a few weeks ago. There’s just like, But I really like. I like going outside. I try to touch grass occasionally. I like music. listening. I cannot make music. I have, a miniature schnauzer. He’s my dog. he’s he’s blind. He has a heart murmur. He has. He is. He’s invincible. he got hit by a motorcycle. He just walked off.

Cass Condray 00:46:20 Oh my gosh. He. Gosh, I love him. He ate a bunch of chocolate, and we we took him to the vet the first time, but like, every time, he just. He’s like, he just loves to eat trash. he’s like, my dad feeds me grapes. And I was like, oh, my God, you cannot feed him grapes. And he was like, you lost him and he’s fine. It’s weird. Dogs invincible. So yeah, that’s my dog. Love him. His name’s bear. Oh, I like to draw. I forget about that. I guess I was kind of good. I, I want some awards for that in high school, so I guess that was kind of good. I did AP Art my senior year and got a five on it. Wow. After never doing anything with art. Never took an art class. but I also, I’m realizing I’m really, boring in my hobbies. Like, I’m really nerdy. Like, I’m like, I like reading.

Cass Condray 00:47:15 Writing. My dog is okay, and I like coffee.

Amber Tresca 00:47:21 yeah. Well, listen, I can get on board with all of those hobbies because they’re just about the same for me. Except that I have cats and not a dog. But knowing what I know now, as I said on a recent episode, I would have gotten a dog. Had I known that. it’s one of those things that there’s research showing. Yeah, I.

Cass Condray 00:47:41 Know, it’s crazy. I’m like. Hey, obviously you didn’t work for me. I’ve had, like, I grew up with hunting dogs. like my grandparents. I have, beagles. I have dogs my whole life.

Amber Tresca 00:47:52 Yeah.

Cass Condray 00:47:53 It’s all turned out this way. So it doesn’t always work.

Amber Tresca 00:47:58 It doesn’t always work, you know? But, Hey, why not give it a chance? And then also, you have a great friend in the process. So win win. Yeah. All right, Cass, let’s tell our listeners where they can find you online so they can follow your work and where they can find pride and poop, which I think is just pride on poop.

Amber Tresca 00:48:17 Com. Yeah.

Cass Condray 00:48:18 I’m like, I think it’s just so I think I don’t know if the domain name is LGBT, IBD or pride, but if you Google pride it will come up. Cool. I’m on LinkedIn. I am a Google Scholar, and most of the time I’m the only person in the world, I think, with the name Cass Andre. so if you just type that in, you’ll find me.

Amber Tresca 00:48:43 That’s good. A unique name is like. Yeah, super super helpful.

Cass Condray 00:48:47 Yeah. Nobody can ever pronounce it. but which is where I’m like, it’s fairly phonetic. I’m like. And but when? When my dad goes through, like the drive thru or something, he’ll give them like a fake first name. And I was like, I was like that. That’s not your name. And he was like, no, I’m tired of getting called Gary or something. Like, just the weirdest thing, so.

Amber Tresca 00:49:18 Well, you know, it doesn’t hurt anything and makes his life a little easier.

Amber Tresca 00:49:21 So there you go.

Cass Condray 00:49:23 But it’s funny.

Amber Tresca 00:49:25 That is funny. Okay, Cass, thank you so much for agreeing to put this episode together with me and for sharing all of your hard won information and resources, and I really look forward to seeing what you do next.

Cass Condray 00:49:42 Thank you. The the lack of research, and the disparities, this community faces.

Hey super listener!

Thanks to Cass for working with me to create this episode and for the work he’s doing to support the LGBTQ+ community. As he described, there’s still so much work to be done. You can find information, resources, and tools on PrideAndPoop.com.

As always, links to a written transcript, everyone’s social media handles, and more information on the topics we discussed is in the show notes and on my Episode 168 page on AboutIBD.com. If you are changing your relationship to social media, you may want to sign up for my email newsletter. If you go to AboutIBD.com, you’ll see a pop up asking you to subscribe, or you can head to AIBDNewsletter.AboutIBD.com to sign up. You only need an email address, I will never share your information, and it is free to access.

Thanks for listening, and remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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