A Roundtable Discussion On A Year of Triumphs, Trials, and Lessons in Advocacy and Podcasting

Speaker 1:
0:03

Welcome to Indobattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and health while navigating the world of endometriosis and adenomyosis, from personal experience to expert insights. I'm your host, elana, and this is Indobattery charging our lives when endometriosis drains us. Welcome to Indobattery's one year celebration. Thanks for ringing in your two of this podcast with me. Like every great birthday, my guests and I celebrate with two episodes. Join us as we unpack part one of this celebration. Let's get started. Welcome back to Indobattery everyone. Today is a special day. It's a really special day because it is the one year of Indobattery's existence. This year has taught me so many things, and I've recounted that before in my last podcast, but one thing that I have said and will always say is that it has taught me the strength of this community, and this community would not be as strong without the people joining me today. These people have their own podcast, so they know exactly what it's like to do it. But they don't just do the podcast, they're advocates as well, and they've done it at various lengths of time.

Speaker 1:
1:38

First, I want to thank Kimmether Redman for coming on. She's amazing. She's from Wendell Thickevitt with her husband, brandon, and we have Kathleen King, whom I have been forever wanting to have on, and she's amazing, and she just started a podcast, jarg. And then there's Amy. Amy, as many people know, has been doing a podcast for a long time. It was amazing and she is in 16 years of Indo. Thank you, ladies, for coming on and joining me today. I am so excited to have you all here, so excited. Thank you, I'm happy to be here. First, I want to start off by saying, just because we've all had a podcast for varying lengths we should probably talk about that how long we've done our podcast, but we've also been advocates for a long time. Kathleen, how long have you been in the advocacy world for endometriosis?

Speaker 2:
2:33

Oh, some people would say too long. It's 25 years. Floss at this stage. Yeah, I think I've worn people up over the years, but yeah, 25 years now since my diagnosis. I joined the UK charity and then the Irish charity after that and have been involved with a lot of online groups and I was very fortunate, within weeks of trying to get a diagnosis, that I found Nancy Peterson and Heather Grudon online and they sort of molded me, I think, into the advocate that I am now and I'm very fortunate for that. So, yeah, it's been a while. It makes me feel old. That's the only thing.

Speaker 1:
3:12

You're forever young in my mind, but your podcast, you just started, your podcast.

Speaker 2:
3:20

Yeah, so the podcast Jarragh is only going since really the 1st of September and it's something that I had thought about for such a long time. But we have such amazing endometriosis podcasts out there, including Kimethers and Amy's and your own as well, and it's like am I adding anything of value? But then I'm sort of thinking we have a very specific Irish community and while a lot of the problems do overlap that we have in Ireland with everybody else in the world, there are some things that are quite specific to us, including our healthcare system, with a lot of people traveling to Europe and traveling to the UK as well. So there's some very specific local quirks, I suppose you'd call them, that would be good to cover. So far, so good. I'm still really learning and, like I say, learning from the best, so it's been great to have all you guys ahead of me to sort of learn from, but it's been fun.

Speaker 1:
4:12

Yeah, it's been amazing. Kimethers has been not as long in the advocacy world as Kathleen, but you've been doing this now for what a year.

Speaker 3:
4:25

Right. So I started probably with advocacy working out Can't even say it was advocacy, I think it was just really just introducing myself to the endometriosis community and expressing appreciation for them, just welcoming me as a fellow endopatient as well as a clinician who's just really as passionate about social justice issues within healthcare. So I've been doing advocacy work related to social determinants of health and minority health disparities for 20 years but I am still very much a baby to the endometriosis advocacy world. But I've been. I really just appreciated how supportive people have been to me, wanting to just offer what I can to this area that so desperately just needs as many clinicians and outspoken advocates really raising awareness.

Speaker 3:
5:21

And with the podcast, my husband and I started the podcast just this year after the endometriosis summit.

Speaker 3:
5:28

Sometime after the endometriosis summit, maybe a few months later, it was actually Amy's recommendation who said you guys should start a podcast Because we mentioned that we used to podcast and it was marriage related. It was just about couples living life and just trying to figure out this marriage thing. And we took a break from it when I started not feeling well and I was so concerned about getting back to it and didn't know exactly how to frame it and he's like you could do something that's like related to dealing with chronic illness, and I was like that's actually a good idea, because when we tried looking for those resources we couldn't find it. So we decided to start EndoThick of it and it is a podcast for couples who are navigating chronic illnesses like Endo and it has been very well received and we are really excited about it. And it's very informal. For the most part it's just people coming to the kitchen table having a conversation that Brad and I would have had anyway on our own, so it's been nice to invite people to those conversations.

Speaker 1:
6:30

Yeah, it's so good too. It's so good, oh my goodness. Elliot and I have listened a lot to your podcast and have gotten a lot of good information. But really just like connection, I think you do such a great job at connecting people and making them feel part of that, especially in the relational realm. Amy, you have been an advocacy and you've been doing the podcast the longest. How long have you been doing advocacy and how long have you been doing the podcast?

Speaker 4:
6:58

Yeah, hi everyone, thanks for having me here today. My name is Amy. I've been podcasting for almost five years. At this point It'll be five years in December 2023. I'm starting a new podcast in Spanish, which is also about living with endometriosis. So I'm really really excited about that because I think I'm taking.

Speaker 4:
7:18

You know, when I started podcasting, kind of like Kim with her said, I wasn't really an advocate, I just wanted to. I had my best friend, brittany, who's my co-host, and she doesn't have Endo that we know of, but she has a lot of also period problems, health problems, things like that. So we just wanted to get together every week and just talk and laugh and kind of de-stigmatize and take away the shame from all the things that society tells us is shameful, right, like menstruation and urinary problems and digestive problems and yeah. So we just kind of wanted to talk about how can we live well with this illness, right? And how can we, how can we just I don't know not move on in our lives, but how can we like not get stuck in all the difficulty that is this illness and how can we try to build a life worth living?

Speaker 4:
8:11

And so it started as that and then, as we kind of, you know, we're meeting every week doing the podcast, talking about like tips and stuff. We just, of course, getting further and further into endometriosis, realizing how much misinformation there is, how many people cannot access care, how many people are suffering, you know, and I think that maybe a six months a year later it started, you know, changing into this advocacy project and I think now my podcast is quite different from what was at the beginning, where now I have a lot more voices on I deal, you know, I have a lot more experts on a lot more patient voices. And then I want to, well, I am taking everything that I've learned after five years of podcasting in English and I'm starting a limited series in Spanish about 20 episodes with patient and doctor voices to you know, to help spread the good quality information to you know, people who may not normally access it.

Speaker 1:
9:08

It's amazing. I think the value of having you three on is that you come from different backgrounds. You know we're not all the same, which is the best part about this, and I think that highlights just how endometriosis affects so many different people from so many different backgrounds and we experience, although some of the same things, we also experience a lot of different things, and I think when I first started this podcast or Shelby it was we were looking for more specific how do we live our life? And we started this podcast off of the theory of the 12 spoons. The 12 spoons, essentially, is if we are given essentially 12 spoons a day to dip into the pot of life, to eat, to take care of a family member, to do all this. You know you fill all your 12 spoons by the end of the day. You don't have any more right, and that's when you rest and digest and then you regain some strength. But if you are spending your 12 spoons on a chronic illness, you don't have any left to give, and so the point of that is is that when we wanted to start this podcast, it was to be able to give you the ability to not expend all your spoons on navigating a chronic illness.

Speaker 1:
10:27

That is very ambiguous when it goes to research and information and things like that, and it's not that there isn't information out there. There's a lot, but there needs to be more, and so that was kind of the ballpark that we were living in a little bit was we want to fill the battery for everyone, their life battery with Indo, and that's a really challenging thing to do, but we've been able to do that because of people like you, whom I would have never in a million years that I would have this platform. First of all, I want to just tell you that I this is this starting this podcast. I don't know about you, ladies, but starting this podcast, I was completely out of my comfort zone. I had no idea what I was doing.

Speaker 1:
11:14

I had my YouTube education at the forefront. I YouTube everything, but I think that getting out of my comfort zone has educated me better, and then it's also given me the tools to help other people with their journey. So what are some of the things that you have learned starting this podcast that you don't know if you would have quite gathered at the beginning? Kathleen, you're new to this.

Speaker 2:
11:40

I think for me, I was waiting until everything was perfect. So my branding isn't finished, my website's not done, my social media accounts aren't ready, and I was like I have to wait for all those things to be done. And it was this sort of analysis, paralysis thing, wasn't it? It was just like but I can't do it until it's perfect, I can't do that. And then one of the days I was just like do you know what You're going to have to get this done, girl, because you're going to leave it so long that it's just going to go off the boil. It's going to be obsolete and people are desperate for information and you need to deliver that to them. You need to get that out there somehow, even if it's not perfect.

Speaker 2:
12:17

And I think that falls into the trap where living with the chronic illness like endometriosis and chronic pain, where we have put on that brave face for so long and we've put on this perfect front, we turn up to work, we have the hair done, we have the makeup on, we have the clothes on, we can do all the things, but I think it was just a case of just jumping and get started and all of those other things, like the polish and all that can come afterwards. But yeah, for me I think it was just basically copy yourself on and get started and not procrastinate any longer.

Speaker 1:
12:50

Yeah, I'm glad you didn't procrastinate any longer, amy. You've been doing this the longest, though, and you've probably garnered a lot of information in things that you've learned. What are some things that you've really taken away from starting your podcast?

Speaker 4:
13:10

Yeah, I think a couple of things. I think one of the first things is that our voices matter and I think that can be really easy to not know about ourselves, because we've spent years, maybe decades, of being gaslit and dismissed and told that what we're saying we experience isn't true, right, that our pain isn't what we say it is, our symptoms isn't what we say it is. So we're just weak, it's just part of being a menstruator, blah, blah, blah. So I think when you're starting a project like this, sometimes it's like what Kathleen said earlier Just my voice matter. Am I contributing? Anything Like? Does this space need me? And I want to tell you, yes, absolutely Like. This space needs every single voice out there sharing your story, your experience, your information, because we all reach different people and we all have a different way of speaking and engaging and connecting, and some people are going to vibe with me and some people aren't, but they're going to, you know, be really drawn to Kathleen or to Kimmether. So I think that's one of the first things is, when I started, I was so scared and when I listened to the earliest episodes that I did like episodes one through 20, I mean you can hear how scared. I was. In my voice Like you can hear how insecure I felt, how far out of my comfort zone I was. So, yeah, I really want to encourage everyone to know that your voice matters and your story matters.

Speaker 4:
14:36

And the second thing I think that I've really learned is and of course, I think this is now being, you know, in advocacy and doing this for a long time is how important it is to really try to find accurate information before sharing it. And I think at the beginning you know there's times when you're following people, you think you find a website, you think that it's accurate information, you really do right and then you share it and then you find out that it's not accurate information. I think the longer you've been doing this, the better you get engaged, because you learn more, you know more, you read more, you are connected with more people. You get a better gauge of, like, what is a good source of information, what isn't a good source of information.

Speaker 4:
15:19

But I've definitely shared things that, especially when it's like and no adjacent, like things about gut health or things about hormones that you know later I found out actually that wasn't the correct information, right, and I have to go back and correct that and let people know that I messed up right, that I made a mistake. So I think, really trying to find the best information and, you know, maybe even sitting on the not the project, but sitting on an episode for a while, like I have an episode coming up about interstitial cystitis, I did all the research I like wrote out, you know my bullet points, and then I'm just kind of sitting on it, not in the way Kathleen said, where it's like I'm waiting for it to be perfect, but I'm just like giving it a month or two to see what else I can find, what else people are saying, to really make sure that I'm not, you know, publishing something before I've actually finished doing all the research for it.

Speaker 1:
16:14

Kimberther, you've been doing this for a little bit, but you started a podcast prior to doing this podcast. What is different this time and what have you learned? Not only about podcasting, but obviously about endometriosis, because you're fairly new to the endometriosis community, so I'm sure you have a lot of things that you have learned just in the last year.

Speaker 3:
16:34

Yeah, absolutely so. When we podcast in the past, it was just for fun. It was actually something for us to stay connected with family and friends when we moved across country and a lot of our friends are married or in relationships, so we just decided to make it with that focus. And when I started getting unwell and not really understanding why I was feeling the way I was feeling later learning, of course, that it was due to endometriosis I became more guarded with our podcast, like with the information I would share, and I felt like I was losing some of my authenticity because I was putting up this wall of not wanting to be vulnerable about sharing that, by the way, I'm having all these weird symptoms that I can't make sense of.

Speaker 3:
17:24

So we stopped that podcast and when we reconsidered doing this one and it having a chronic illness focus, some of the things that I learned that helped us really get started with it is that one, since we had already done this before and I'm already in a have been in professions that often will bring out the professionists and the people pleaser and people. That's something that I've already worked on a lot. So I went into this podcast with zero concern about pleasing everyone. I knew that chronic illness already is going to take up so much energy and I'm going to have to work around that to even be able to record. So the last thing I needed to do was also make people pleasing and profession professionalism still like precious energy and headspace in the process. So you know, when we went into this, it felt really good to just go into it knowing I'm not going to be everyone's cup of tea, not everyone's going to like my voice, not everyone's going to hear what I want to say, and I'm going to do it anyway, because I know that there are some who do want to hear this and who appreciate being a part of those conversations.

Speaker 3:
18:42

Another thing that I already kind of hinted on is the fact that I have chronic illnesses and I was afraid that that would set me up for failure, that eventually I would get, you know, a good momentum going and then symptoms would get out of control and I'd have to stop. And I want to do that. I really wanted to commit to this and be able to do it long term. So I almost didn't start because I was waiting for myself to get to a level of symptoms that was manageable enough and I thought that I could do the podcast in a nice regular rhythm but again, just like Kathleen mentioned, that ended up kind of slowing me down and causing a bit of analysis For analysis too, it's of well, just how well do I need to be to be able to do this podcast about being chronically ill?

Speaker 3:
19:35

And I was like you're overthinking this, kymether, just do it, do it ill. And I've done episodes recording from my bed. I've done episodes with heat and pads and ice packs on my body. I've done episodes where I sound super bubbly and great, and then there's some episodes where I sound more down and a little more soft spoken and I just had to be okay with that. That.

Speaker 3:
20:06

You know what it's just more important for me to just bring my authentic self to the table or to the microphone in this case and that if anyone has a problem with that, that's fine, because I'm firm in the importance of authenticity in this space, so I'm not going to change that for anyone.

Speaker 1:
20:25

Yeah, that's such an important lesson though, because I know when I started I really didn't. I was not knowledgeable about any of this. I felt like I was. I felt like I started it because I twofold, I wanted to right my wrongs from what I had learned from, like the retrograde menstruation ablation theory, of everything. Right, I talked to everyone about that. I am allowed. I am not short on words. Everyone knows this by now, and so I, even from early diagnosis, I was telling people what I knew, what my doctor was telling me.

Speaker 1:
20:59

So then, when I started this podcast and realizing I didn't know anything, it really was like you have to put yourself out there to be vulnerable to say I don't know everything, I don't know what I'm doing. I am glad I'm learning this, and that was something that I felt like even for me was so important was to learn with the people that listen, because I would say there's a large number of people who are just learning about endometriosis and that's why they're coming to all these different podcasts and they're they're seeking out information. A large percentage didn't know much about endometriosis and so my goal has always been to learn with them and, I think, doing life with them in your chronic illness, stage of pain, flares, tired, fatigue, all of that. Inviting them into that space has been so impactful for so many people because it makes them feel less alone. They're not alone in navigating this journey. That is really hard, not only from the informational standpoint, but also from the living standpoint. I mean, we were talking before we came on about all the different signs and symptoms of perimenopause and how felt, how seen we felt and how amazing it was.

Speaker 1:
22:15

You experienced this and I experienced this, and it's that's what's so great about having this community in. I've heard Kathleen's name for years now, like probably a good five or six years prior to even starting this, to see Kathleen step from not only advocacy into the podcast world, I was like, yes, kathleen, yes, do it. And I'm so glad that you didn't wait till you felt perfect or felt like you could do everything or had everything put together to be able to do that, because what you give to the community is far better than a logo. It's far better than the sound or whatever. You have a lot to offer and I'm so thankful that you decided to do this. It's so great. What are some of the challenges that you've experienced in doing a podcast?

Speaker 2:
23:09

I think the challenges is sort of timing and scheduling, I think for a lot of people, isn't it? And while we rely on a lot of goodwill and we're relying on fellow advocates or our community to make time to sort of come on podcasts and things like that and we know people have a lot of commitments there's commitments to work, commitments to family, commitments to living with their chronic illness as well, and we have to pace ourselves. So that in itself is one challenge. And on the other side then you're sort of when you're looking to interview healthcare professionals, particularly in Ireland, you know a lot of them have dual practice, so they may have public health practice and they will have private practice, maybe in the evening as well. So it can be very, very difficult to sort of get time and to sort of persevere.

Speaker 1:
23:56

There's a lot of suspicion out there.

Speaker 2:
23:57

I think as well, too, that you know, certainly in a country where we don't have very readily easily access to excision or to surgeons who can remove all of the disease, there's a suspicion that you know they're going to be attacked in some way or that it may be quite an aggressive question in session, and I hope that I think my previous history, like you know that's away from running events and running conferences on endometriosis will show that that's not going to be the case, that it is a case of trying to get that accurate information out there, trying to show that there are pathways for people living in Ireland, you know, to access treatment that's suitable for them and them as an individual.

Speaker 2:
24:39

But I think it's trying to juggle everything I think is tricky and trying to make sure that you've got the balance of not just the formal and serious information but also a bit of humour as well, you know, and to sort of, we get dragged down and off in our day. I think it's always good then to have that wee bit of humour, which I think we've all brought into our podcast as well too, and I feel like I know everybody that I listen to and that could be on your lunch break or could be in the evenings, and you sort of feel it's a comfort sometimes to put that on. So I'd like to hope that I can overcome that challenge, that people think, okay, we're not sick of listening to her after 25 years banging on a bit of endometriosis, that this is actually a fresh sort of look of things. So that's probably it.

Speaker 1:
25:22

No, that's so valuable. Amy, you again have been doing this a while. What are some things that maybe you didn't see coming your way, or have been some challenges for you, because five years it's a long time to learn some things.

Speaker 4:
25:37

It is a long time. You know. I think one of the things that I'm really trying to do now with my podcast that I didn't do at the beginning and that I really wasn't aware of at the beginning is, you know, lifting up the voices of people who have different experiences than mine at the beginning. You know, especially because a lot of the episodes I think we went 50 episodes without even interviewing another person, because the first two years it was really just me and Brittany. It's a laughter, lots of humor. You know, talking about our did that really happen? Experiences, right like our, all these moments and how we're getting through them. But you know, I think, realizing that as a person who holds a lot of privileges with my identities you know, being a white, cis woman, heterosexual that it's really important to realize and understand that not everyone in this community has the same experiences that I've had, not everyone has had the same privileges that I have.

Speaker 4:
26:33

So I think, on one end, it's really been trying to educate myself, to learn and unlearn a lot of things that you know, unconscious biases, that I hold a lot of the worldviews that I hold and, on the other hand, as part of, like you know, being not just using inclusive language but also like amplifying voices of historically marginalized people, of voices that are not heard as commonly, because this is a very white cis space, you know, and I think that it's important to recognize that and try to lift up the voices of other people in our community worldwide.

Speaker 4:
27:13

And I think that's something I've really been focusing on recently is bringing in voices of, you know, different identities, bringing in voices from different parts of the world. I think that is just so important. It's something that I wish we had done from the beginning, but unfortunately we did not. But we are definitely doing that now.

Speaker 1:
27:32

And you're doing a great job. A great job I was actually. I think Kimmether and I were talking about how much you've compiled so many resources and spoke into so many different people's lives, like where people are at, and had resources to follow that. We were talking about just the depth of resources that you have. You've done such a beautiful job of talking into that space that we often can miss, and I didn't think of those things when I first started podcasting. I was like what?

Speaker 1:
28:04

And to be honest, I I had a list of five things. We had the list of five podcast episodes that we could do, and beyond that we didn't know what we were going to do, and so just realizing further on down the line how much there is to the endometriosis world really expands that horizon. You've done a great job of speaking to every community within the community, which I think is a challenge to do. It's been a challenge but Kimmether also has that as well because you have a beautiful viewpoint on so many things. You're the practitioner, you're part of the Black community, indo Black and you've done all of that advocacy work. But what are some things that you have been really challenging? Trying to combine all of your efforts with the podcast and educating everyone around you.

Speaker 3:
29:05

At least with the podcast, it's honestly been great.

Speaker 3:
29:10

There hasn't been a lot of challenges, but the main ones have been both the transparency and being a clinician who was dealing with these chronic illnesses, as well as the transparency of my marriage being out there to the public and it's a price that we are obviously ever willing to pay because we think that's what's needed in this space is that transparency of a lot of the struggles with navigating diseases like endometriosis is the fact that our circles and families aren't really talking about these things and these challenges and honestly that's the case with relationships often is that people kind of keep their struggles to themselves and don't welcome people into that or even reveal those struggles, and then they lose the opportunity of one being able to bring light to the issue and receive support, perhaps from someone, but also it eliminates the chance of someone else being able to be seen because you revealed those vulnerable areas.

Speaker 3:
30:28

So when it comes to our marriage, even though we love doing it and we don't have a problem with it, there is some challenge with it that we have to just be okay with. So, for example, we talk about painful sex and intimacy challenges and just some of the things that are associated with anyone who is dealing with chronic pelvic pain, and we really have to have that conversation of just how comfortable are we are, how far are we willing to go with that, and we really were just like we're going to just put it all out on the table because we, because we realized that a big issue is that people aren't talking about it.

Speaker 3:
31:09

So you know, I think we have gotten over the biggest hump of that particular challenge, but it's something that Brandon and I stay in really open communication about to those so that we are respecting each other's preferences and and are keeping each other safe in that process. And then I am definitely learning a lot about how to do this while also working as a healthcare provider. I think it's a wonderful thing when I see a clinician who is open about their health care challenges. It just helps break down this wall between patient and provider, where the provider is often put on a pedestal as the authority, authoritative individual who tells you everything you're doing wrong and tells you how you're supposed to do it right. So I do this with my own patients.

Speaker 3:
32:05

So I do the same with the podcast is that I really tries to try to expose the humanity within healthcare providers and show that we struggle with these health care issues just like many people do.

Speaker 3:
32:19

But then I also keep always try to keep in mind that many of us have been harmed by clinicians.

Speaker 3:
32:25

So you know that that's a challenge that I'm honored to really navigate very mindfully so that I can even hopefully help people heal in that area. To hear from a healthcare provider that their voice is important, that their pain is is valid, and that I am not speaking from some place of authority and instead I'm just meeting people right where they are because I'm there to, I think it can actually be a really positive thing. So it makes it totally worth it to be transparent. But it just means I have to be really mindful about what I say and you know and what kind of healthcare information that I share, and also just understanding that this level of transparency is not typical clinicians, so it's not something that clinicians are very comfortable with. I learned that I that I have this, this platform, and and that's okay, because even that opens conversations of why isn't it okay to show that that I deal with chronic illness as well, because it's been nothing but positive with my interactions with my own patients.

Speaker 3:
33:36

So good, it's a challenge, but it's a good challenge.

Speaker 1:
33:39

Yeah, I feel like when you were talking about how much you want to share, it was funny because when Ellie at first came on the podcast, him and Dane were talking about some of the intimacy things and afterwards he's like your mom's going to listen to that and I was like, yeah, and that was hard. He was like I didn't think about that, it's fine, it's fine, you know, like it, I feel like you have to. There is a certain level of vulnerability that you have to be willing to have when you're doing a podcast, and there's for me there's not a whole lot, I won't talk about this because I think when we talk about it being a whole body and a whole life issue, you have to be able to open yourself up more, to speak into those spaces, and so For us, it was very much that way of where are my boundaries? What am I willing to talk about? What am I not willing to talk about? But then again, I think, amy, like you were talking about, it was I need to be able to include everyone, which I wasn't necessarily aware of when we started this, and it wasn't for a lack, but wasn't for wanting to. It was just for a lack of knowledge and I think that's something that doing this podcast has really opened my eyes to is just how to be able to talk about it.

Speaker 1:
34:56

So sometimes exclusive we can be in our mindsets and in our thoughts and what we talk about, instead of inclusive, because that is a tricky balance sometimes of like, yes, this is what I know and this is what I can speak to, but it doesn't include everyone. That's something that I've really tried to glean from other people and other podcasts and what I've learned in the research that I have done, which is mostly due to the people in the community. I've really had to be aware of the people who want to come on the podcast and speak. That's been a challenge for me of like I want to make sure what they're saying is going to be beneficial to the listeners and not harmful, and I think that that has been a challenge Way more challenging than I had anticipated, because I don't think we anticipated even doing as many interviews as we have. It's just kind of taken that direction, and so I've had to be more cognizant of who's coming on the podcast, because I don't want the listeners to be harmed in any way because it could add to their trauma that they've already experienced.

Speaker 1:
36:06

And I don't know, have you all experienced that kind of tug and pull of? We want good information, but how do we get that information? How do we get this good information? How do we vet people? How has that been for you, amy, since you've been doing this the longest? But how have how's that been for you when you shifted from doing it as a two person platform to now interviewing more people?

Speaker 4:
36:29

Yeah, I think it's really important that I guess that you have on. That's something that I've certainly been very careful about. I think really, first of all, a lot. I think there's a lot of people who write you and they say they'd like to come on your podcast. I don't think I've ever let anyone on who's written to me, not because I'm against that or anything, but because of what you said, like I really need to know the person you know and I think, most of the people I pretty much everyone I've invited on or people that I've been following for a long time, people that I've personally interacted with.

Speaker 4:
37:02

Some of these are even people I would consider my, my friends and I think, when you have been in this space for five years, like I have, I, you know when I'm like, oh, pelvic floor therapy, I know someone, oh, interstitial cystitis, I know someone.

Speaker 4:
37:15

It's like now. I know people who I consider very well versed, very well spoken, who I know are going to be inclusive, who I know are going to, you know, be aware, more aware of their unconscious biases. But you know, I'll tell you, I'm having a kind of a hard time with that in the Spanish podcast because, again, the quality of the guest is so important. But most of the people that I follow are in English. I haven't been very deep into the you know community, the end of community of Spanish speakers, so there were some people who write off the bad. I was like, oh, I know you're going to be able to talk about pain, I know you're going to be able to talk about public floor, but there's a lot of people that I'm like I really need someone for mental health or you know this other topic and I don't know where to find a good quality guest.

Speaker 4:
38:03

So I've been reaching out to a lot of the people I trust, asking them do you know a good guest for this topic? Luckily I've had, you know, a lot of people really want to collaborate, not incoming on the show, but in helping me find someone right. So I put out some feelers to some of my Spanish speaking endo friends and was like, hey, I really want to have a registered dietician on. I don't know anyone. Do you know someone?

Speaker 4:
38:26

And typically they can, you know, suggest someone to me and then I can go take an hour to look at their website, look at their, you know, instagram platform or Twitter, whatever you know, whatever feeds that they have. But I agree, I also think really looking into the guest who you're gonna come on see what can they talk about. I spend a lot of time before I have a guest on prepping for the interview, sometimes an hour or two hours, three hours, because I really go into all their different social media. I'm like this person is really good at talking about this. I'm gonna ask these questions and it's like really trying to find the guest who can speak and then finding the questions that can pull the info that you want out of the guests.

Speaker 4:
39:09

So I think that it's really an art, but I think it is something that we get better at over time.

Speaker 1:
39:15

I would agree. I would agree with that a lot. You do get better at it and I still have so much to learn and that's why I think the value that you bring, amy, is I have learned a lot from you and I love that you are so supportive, even for me. This is why I'm like Amy you have to be here. You're such a great support system for me because you've learned a lot and you're willing to share what you've learned, and I think that that has been so helpful for me in this last year. But I know, kathleen, for you you've been an advocacy for a long time, so I'm sure you know a lot of these people. Is that a challenge still for you to think of? Okay, do I want to talk to this person? Is this someone I know? Some backstory here. Maybe I don't want to talk to this person. Has that been something that you struggled with in starting your podcast?

Speaker 2:
40:04

Yeah, that is a challenge and unfortunately, I think, having the history of 20 odd years, you started coming in with inherent bias, don't you? And we all fall victim, I think, to listen to other people's opinions as well, you know. So I think, oh, that person, I don't like them because they said this, or that person may advocate for something else, but I think it's like Amy has said there, that you can always find a specialist topic or a specialist question, or you can guide the interviewer around to something that they're very good at. And certainly why I may have biases against certain topics or certain individuals or whatever, I would like to think that I should be able to leave that behind, because they will always have something to bring to the table.

Speaker 2:
40:48

I think, yeah, it can be hard to screen people out and I suppose, knowing that my preference is somebody who's lived experience, I put huge weight on the fact that somebody has gone through maybe a chronic illness. You know, as Kimmy Thurstead, she's working as a healthcare professional. She brings that into her day to day as well, and that's very, very important because for me, I think that gives them a compassion and an empathy that starts us off on a good foot, whereas maybe somebody who's very just, very clinical they've come in, they've done their appointments, whatever. They don't necessarily understand the community. That can be learned and that's certainly something we can chat about and develop. But my preference is somebody who's given that proven track record.

Speaker 2:
41:31

But in saying that there are gems out there, there are people that I have invited to speak at an event a number of years back who have taken didn't even know the word enemy drill since when I phoned them up they were like oh yeah, of course I know about that, yeah, and then they're like frantically googling in the background but they turned out to be, you know, some of the best advocates that we've had, because they've taken it, they've looked at the trauma, they've looked at the absolute disgrace that enemy drill is in Ireland and worldwide and they've done something about it. And you know, there's always that potential of that gem where somebody takes the information and runs with it. I've even seen it myself with some of the advocates here in Ireland where they've started off with horrendous misinformation and you're sort of going, oh, this is never going to work out. And then you know, through conversation and through sort of you know development as well, people do, they learn, they develop, they expand, and you know, being able to refer them to good resources is good, but certainly without, I think, the community that we have and that we've grown to trust, it would be a lot more difficult.

Speaker 2:
42:41

And I think you know, as Amy has said, it's known where to look for those resources. If I don't know of somebody, I can ask somebody who does know. And I think that's very important and not to sort of think that you know, we may know everything, or we may know everything about everybody. You know, no matter how long you're doing this, there's always something for me to learn, so there's always somebody else for me to learn about as well, and I think that's important. I think, recognizing our own limitations and also our own biases as well too. I think, yeah, I think that's the tricky one, isn't it?

Speaker 1:
43:13

It is, it is really tricky, but I do think that you made a fantastic point in the fact that we're still all learning. You can be doing advocacy work for years upon years and I bet you anything the Nancy Peterson's, Heather Guadones they're constantly learning because you know and there's a lot of advocates out there that are doing a lot of really great work and because endometriosis, just by nature of the disease, is a continued educational point. Right, we're not where we need to be with education. We don't have the research that we need to have to really understand all the facets of it. We're not where we want to be in the laws and in the care of endometriosis, and so part of doing and speaking into a space of endometriosis is knowing that you are going to continue learning and growing in your knowledge, as well as growing and learning and how to communicate that knowledge to other people.

Speaker 1:
44:09

And I think that's been a really tricky thing for me is I'm learning with a lot of the people that come onto the podcast. I'm learning along with the listeners and I love that because then you're getting the real Rahlana where I'm like I didn't know this. I don't want people to feel like I know everything, I don't know everything, I don't know anything. I am very, very green in a lot of areas and there is an element of being okay with knowing that you are going to continue learning, and it is okay to learn. We don't all know everything, and I think you know. Kimmether could have very easily come into this and been like I know everything because I'm a practitioner, and she is, and she has. You have not done that, Kimmether. You have not ever made anyone feel that way, which kudos to you, because you're just a warm person in general, but I. Is that something that?

Speaker 3:
45:13

would be a serious red flag.

Speaker 1:
45:15

Yeah, really would, but you do. You have kind of a different platform because you are interviewing couples or people who have experienced in navigating this chronic illness. So it's a little bit different because you are combining both the information but also the emotional standpoint of it. What is that like when you have guests on your podcast? What is the challenge there with that, and what are some things that you've really found beneficial?

Speaker 3:
45:45

Well, so, because we are trying to bring in professionals as well as couples or even individuals who are able to speak on their relational experiences and their lived experience. I'm asking them to also have a significant level of transparency too. So I really find it challenging to really want to find people who are willing to be that transparent and then also have perhaps a partner who, equally, is okay with that transparency. But I really do also adopt a lot of what Kathleen and Amy does as well in getting to know the people first ahead of time, planning ahead of time, figuring out what can they best speak about, what are the topics that they are comfortable speaking on from whether it's a component of their lived experience or a certain subject matter that they just have good mastery over and really focusing on that so that it can be as comfortable of a conversation for the guests without putting them on a spot to have to then navigate something that perhaps they're not as comfortable with, because those are going to be the times that perhaps ignorance or misinformation can fall into those gaps. So really try to craft around their comfort level, and not only with transparency but also their subject matter expertise.

Speaker 3:
47:22

Also, I am remarkably critical of clinicians. It's almost shameful. I'm almost a mean guy. I'm just like I mean, and it's not because I think I'm better than them or anything like that. It's just that the level of harm from clinicians is so rampant it's what I've personally experienced, and it's what many of us have experienced that my BS media is just very sensitive, and I also know that as a clinician, you can have all the good intentions in the world and still cause significant harm.

Speaker 3:
48:03

And the safety of our audience is our top priority and I am willing to have clinician interviews be few and far between if it's to ensure that I can maintain that safety for the audience, because I can agree with them on some things. I can disagree with some things as well, but at the end of the day, if I have any concern that this may cause harm, I literally would trash the whole thing and say thank you so much for your time, because it still is an opportunity for me to learn. I love having the conversations with clinicians and learning from them. It doesn't always mean that they are going to be that right voice to speak into this specific niche space and thankfully I'm slowly but surely starting to encounter the clinicians who are like minded in that area and also the more outspoken that I have become about dealing with chronic illness as a clinician, the more clinicians who are approaching me who also deal with chronic illness.

Speaker 3:
49:21

And we're like a little, it's like a little club, and I do want to empower them to speak from that space and that perspective and in those situations, then, yes, I absolutely welcome them to have a conversation and if, from that conversation, we feel like, wow, this would be really good information for us to share with with our audience. Here's how I think it would be beneficial and we're in agreement, then we can have them on on the show. So you'll see that there's very few, but we do have a lot. We have several and now planned and recorded. But I'm wondering, do I need to tone it down a bit? Am I a little too, too?

Speaker 1:
50:05

I think you're being protective of everyone, which is we need that, so protective yeah.

Speaker 3:
50:12

Yeah, yeah, and I know we all are. This is advocates and people who just know the gravity of the love of harm. That could be done just in a comment that a provider says that it's understandable why we're overprotective of our community.

Speaker 1:
50:28

Yeah, absolutely. Join us in the next episode as we each reveal what's next on our podcast and so much more. You won't want to miss it.