Drezden Plotkin (00:01) This is the 1 % Heart, a podcast dedicated to the millions of people living with congenital heart defects. In this episode, we're going to dive into a crucial topic, how patients, particularly women, often face dismissal and skepticism from healthcare providers. Joining me today are two remarkable women, Jillian Tate, all the way from the UK, and Eliza Marlin, an American and fan favorite returning from our very first episode. We're going to discuss their experiences navigating treatment and compare perspectives from both sides of the Atlantic. Now, Before we begin, here is my normal quick disclaimer. Nothing said here is medical advice. These are our own opinions, experiences, and stories. I also want to include a trigger warning as we will discuss medical experiences and some trauma. Listening discretion is always advised. With that out of the way, Jillian, Eliza, thank you so much for taking the time and scheduling with all these different time zones going on. Jillian (00:53) Thank you for having us. Well, me, I can say. Aliza Marlin (00:55) Yeah. Drezden Plotkin (00:56) Could you both just briefly introduce yourselves, give us some background on your special hearts? Jillian (01:00) Yeah, so I'm Jillian. I'm nearly 30. I currently live in Edinburgh, but I'm Canadian, so my accent doesn't really line up there. My parents are from Scotland. They moved to Canada. I was born there. And then in the past five years, I moved back to the UK to study, met my husband. Now I'm like a souvenir, I guess I'm stuck here. That's fine. But in terms of my heart, I have Epstein's Anomaly. that included supraventricular tachycardia, Wolf-Parkinson's white disease, and an atrial septal defect. And these were all caught when I was born. And I've had seven surgeries to attempt to fix and rectify it. Aliza Marlin (01:35) Well, I'm Eliza Marlin. Thank you so much for having me back. I was on episode one and it was an incredible experience and I'm so happy to be talking to you, Dressen, of course, and to be meeting you, Jillian. So this is a great day for me. I am based in New York City. My accent goes with my location. born and bred here. I am nearly 57. I'll be 57 in two months. I was born with aortic stenosis. that was diagnosed at birth. Just a few hours later, the doctor said they heard something. And I think, too, they actually gave a name to it. I've had multiple surgeries, some procedures, but I'm doing well. I live in a place that has not just adequate or appropriate care, but outstanding care for an adult with a CHD. And I'm doing well. So happy to be here. Drezden Plotkin (02:25) Thank you both for that. And I think I'm going to remember the souvenir line for a while. Now I'm going to give one last disclaimer before we dive into it, but we're going to talk a lot about women's health here, how to advocate for yourself in special situations and the potential for dismissal, infantilization, and just how to make sure you get bodily autonomy. But let me first talk about the elephant in the room. I'm not a woman. I have never been a woman. I have never had to deal with female problems. Now I've... been a CHD patient for my entire life except for the first couple of months. But I'm very aware of my limitations for this topic. So I want to ask questions and I want to ask the right questions. But there's a thin line between comparing it to my experience and mansplaining as a large white man living in a very... beneficial society to large white men. So, Eliza, thank you so much for joining to make sure I asked the right questions. And to both of you, if I'm missing something big, a big comparison, feel free to dive in with a better question. All that to say, Julian, I understand there has been a significant life event recently that's really made this topic front and center for us. Do you mind elaborating on what's going on? Jillian (03:36) Yeah, so a year and half ago, I had my little boy. It was very exciting because I was excited to be a mom. So basically my big thing is CHD and pregnancy because growing up, they never really talked about that much with me. I think when you're a kid, they don't really want to burden you with thinking about that. And if you're someone who doesn't choose to go that route, they don't want to make it, ironically, they don't want to make it for you. a pigeonhole, I suppose. But when I was transferred to the adult congenital clinic in Toronto from SickKids, which is like a big hub, it was good. I moved to Peter Monk, which was great because it's a big heart research centre. I was under the care of Dr. Oshelin, who was one of their chiefs in cardiology, who was great. And then one day I had this new doctor. In the UK we called him a consultant. don't really... know what we're calling them in North America, just, I don't know, big thought. And it was Dr. Swan who's lovely. And she started talking to me about pregnancy. And I'm thinking like, girl, I'm single. But she's like, you know, it might be a topic we need to start broaching just with your age and stage in life, which was reasonable. And that was fine. And we had some loose conversations around maybe time constraints and realistic expectations in pregnancy, which was all fine and dandy. fun fun aside is I had moved to Belfast to study to be a midwife and when I was there Dr. Swan said actually I've got a colleague who I know who's in Belfast I'll hook you up with him which was great and then in Belfast I met my husband and he got a job back in Scotland and the doctor in Belfast said you'll never guess Dr. Swan's moved back to Scotland so then I got to have the same doctor who came overseas which was great for continuity which was really lovely So I've been seeing her and I got married and we discussed having a baby and she once again emphasized the sooner the better just because we know where your heart is now and you don't want to wait too long in case maybe something changes and then it wouldn't be favorable in terms of carrying a pregnancy. And that made sense to me. So we were really fortunate. We were successful with our pregnancy and that was all fine and dandy. And I was really fortunate in that my pregnancy was incredibly straightforward. I had no complications. I didn't need any medication. I didn't have any hospital stays. I had the extra monitoring that you'd expect for somebody that has a more high risk pregnancy, whether that's because of your heart or even if you were just like an average woman who developed gestational diabetes and you have a couple extra appointments. I had a planned C-section at 35 weeks because they just wanted to make sure that I'm four foot 11. My husband's five foot six. Our kid was never going to be big. He was small, but he was growing just small for comparative to other babies. So he was born at 35 weeks and was chunkier than we expected. So that was a nice surprise. And that was all well and good. However, the crux to all of this is that in my pregnancy, I had been asked about having my tubes tied. because my healthcare team felt that there was a high risk to me if I were to have a second pregnancy. I had been offered this topic early on and they kind of said, it's a early, like we'll approach it a bit later. Mind you, my son was born in December and in October, there's in my medical notes that I was not in a mental state to make that decision. However, one week before my son was born, I was asked to sign a consent form for the procedure. This, I think was wild, but I signed it anyway, had the tube tie, which actually wasn't a tube tie, it was a complete removal of my fallopian tubes. And that's two different procedures. You do a full removal if someone's at risk for something like cancer or something really intense and invasive, whereas a tube tie where they just sever your fallopian tube can be repaired and they can stitch them back together at a later date if you change your mind. So what I signed for and what I got are two different things. Yeah, and now, you know, my son's a year and a half and I'm still fighting with the healthcare system here about the... Injustice I feel about how all of this was handled and I'm sure we'll go into more detail about the lack of voice and autonomy in the situation when other people are weighing up the pros and cons for you without you being involved in the discussion. After the fact I said I'd like to have IVF because you know I'm trying to get a car from point A to point B and they've blown up the bridge so I need a boat and they've decided on my behalf that it would not be favorable and that the healthcare system here would not be entertaining the idea. Drezden Plotkin (08:15) That is a lot to take in. Terribly sorry that that happened. There was more than one time where I just wanted to say what the fuck, but I held myself back. ⁓ Yeah, I can imagine. I can imagine. So, and you can tell me if I'm asking a question I shouldn't be asking here, but they decided that you weren't in a mental state to have this conversation. Jillian (08:17) Yeah, was hefty. I've been seeing it a lot. Mm-hmm. Mm-hmm. Drezden Plotkin (08:38) Now were you experiencing any mental stress from the pregnancy aside from what was normal or do feel like they made that judgment because you weren't answering the question in the way they would have wanted you to? Jillian (08:47) I don't know if I have to think back. It's probably that they had mentioned, have you thought about it? And I was like, I'm not thinking about that right now. My concern is, am I healthy as a baby healthy? Which was summarized as not being in a mental state to make the decision, which to me is fine because I think that's acknowledging that that isn't something I should be. That's something so permanent and so big that if my mind isn't thinking about it in a way that's, if I don't have the mental space and time to to considering that procedure, it's fair enough to me to document that you're not in the mental space to have a conversation surrounding that. But it's ironic to me that then a week before my scheduled section, you think I'd be in more of a mentally stable state to consent to that. then, yeah, it was just a bit bizarre to me when I looked back on the notes to see that kind of timeline. Aliza Marlin (09:41) Is it okay if I ask just a few of the hundreds of questions that I have for you, Jillian? Because I'm dignant right now at your story. So let me just make sure you were 28, 27. Drezden Plotkin (09:43) Yes, please, please do. Jillian (09:45) Sure. It was 28 by the time he was born, Aliza Marlin (09:57) Okay, and when you were dealing with your healthcare team, does this healthcare team include Dr. Swan or was it a separate healthcare team? Jillian (10:05) So I had Dr. Swan who is one of the consultant cardiologists. I had another consultant cardiologist, two consultant obstetricians and a specialty nurse. So usually at my bigger appointments where we're kind of doing a review of how everything's looking, I had four like very experienced higher level doctors with me, which is an important piece of the story because when you've got four people kind of telling you, should probably consider this, you should probably do this one. and using language like, you know, you want to be around for this baby, don't you? As if to imply that if I were to have a second pregnancy, I'm guaranteed to not do well, despite the evidence in this pregnancy to show that I was okay. And I feel like you're making me feel like a shitty mom. I don't even know what my kid looks like, which I thought was quite emotionally manipulative. And, you know, in the notes, they'll say things like, well, we offered to have a... you know, IUD contraception. But when you say when your your dialogue is heavily weighted and you want to be around for this baby, you want to be there and have energy for this baby, you want to be present, all these things, and yeah, sure, you can get a coil if you want, but like, a permanent solution might be better just while we're in there anyway. Felt unfairly weighed. Aliza Marlin (11:17) Europe. You're pregnant, you're emotional. Like that is just the state of a woman when she is pregnant. I have not been pregnant before, but I have been around enough pregnant to know that like there are hormones everywhere. And on top of this idea of your responsibility changing to take care of another life, that's enough for you to be contemplating everything else other than a choice like this. When they first discussed this, Jillian (11:22) Mm-hmm. Aliza Marlin (11:46) when they first brought this up to you and they asked you to sign this permission slip for your life, a week before, did you feel as though you had an opportunity to go back and really discuss this with your husband or discuss this with other people who were helping you to weigh decisions in your life? you feel as though you had enough time to consult with the community that supports you? Jillian (12:09) It's interesting question. So my husband didn't want to offer too much of a voice to it because I think he was worried about crossing the line of like, he wanted me to make a decision for myself and he felt the best way and I'm sure Dresden, you can understand as a man, you're kind like, I don't know, it's you and your body. I'm not too sure. So I think he was in a sticky spot either way. And we've had some conversations after the fact and he's like, I probably should have had more of a conversation because it's our family. But at the same time, it's your body and I don't want to influence a decision that's so impactful. So, I mean, we had a very light conversation, very sweeping conversation. That's kind like, should I, shouldn't I? He's a doctor, ironically, and was like, from a safety perspective, maybe, but like, you know, it's up to you. So, I mean, a little bit. But, you know, looking at information now, fun fact, having the complete removal of your Philippine tubes, by the way, increases your risk of heart disease by, I think it's either 10 or 20%. And I'm like, why are you not telling me this information? That's a pretty important piece of information to tell someone who you're advertising this to as an advantage when they have a heart condition. To omit that, it's, think it's 10 % chance of heart disease and a 20 % increase in mental health decline. which wasn't told to me and I'm finding this out a year and a half after the fact. Aliza Marlin (13:33) Because you're preparing for a new life, you don't have time to Google it in a week. Drezden Plotkin (13:34) What? Jillian (13:36) I know. And I think I just, I'm like, I don't really care. I was like, oh, call you in there, get rid of my uterus. I don't have a period either way. That should have been a red flag. Clearly I'm not thinking straight. Um, but yeah, it was kind of very much in the mindset of like, oh, like whatever it's fine. I just really want me to be okay. And the baby to be okay, because there's been this whole crescendo of like, Ooh, is the baby okay? Have you been okay? And every, you know, couple of weeks it's an appointment to check, is he okay? Are you okay? And we've both been fine, but there's that, um, undercurrent of like, something could go wrong. So I think that really like foggied my perception or how I interacted with the conversation. And then, know, after the fact, they were saying things like, know, because my mental health absolutely plummeted. And they're like, yeah, we anticipated that. I was like, okay, so why was there no counseling beforehand about that impact? Why was there no cautionary counseling set up? support me after that because I'm 28. I'm younger than the average age of people having kids. You know, like, and in the States, I know, because I've looked this up, if you are trying to get your own family doctor to sign off on you having a tubal ligation, there is a rigorous criteria you need to go through to make sure that your patient is fully informed. And there's a one month cooling off period, nevermind one week and four doctors saying do it, do it, do it. So It's just interesting to me the contrast when other people feel quite strongly about something and your voice feels pretty small. Drezden Plotkin (15:11) I want to put a question in here too, because you mentioned your husband's a doctor and that he didn't want to influence your decision too much. he said later on, he probably should have spoken up, but it sounds like, and you can tell me if I'm jumping to conclusions here, but this, you called it emotional manipulation. I call it medical gaslighting for you to make a decision. the information you were given that you take back to him. Jillian (15:14) Mm-hmm. Drezden Plotkin (15:38) Or if he's there in the room too, I assume, but it sounds like he was probably given, you know, if he has the same information, that's probably influencing his willingness to speak up because it sounds like even if he wants to make an argument one way or another, it's your life on the line. And it's almost as if it doesn't matter how it's a doctor, even a patient your whole life. doesn't matter how educated you are with such a important life development going on. that we're all susceptible to this medical provider influence. It doesn't matter how much we know, but how easily we're persuaded when we're in a very emotional state trying to make the best decision for a family coming in and for everyone we care about. that your read on it too? Jillian (16:21) Yeah, I think that's really fair, especially when you consider that he'd be quite junior comparatively to the other ones in the room. there's an element of probably not wanting to seem like you're coming in Mr. Big Balls. I've got an idea and an opinion. So I can appreciate that. Aliza Marlin (16:31) Mm. Respect for an elder, like respect for people who have been in the career longer, I'm sure. Jillian (16:48) Mm-hmm. So I try and give them a bit of a wide berth with that, but is it berth or girth? I don't even know. But anyway. Drezden Plotkin (16:55) It's birthed like a ship. Jillian (16:58) I thought it's taken a while. It really is. Thank you. I thought that too. And I was like, am I just in the wrong mindset to make that line? But it's taken a while to get to a point where I can look back and see that for him. think early days I was quite frustrated and felt like it was partially his fault that I didn't have the opportunity to speak up because you kind of feel like your partner should be your advocate. But you're right. In some situations, you're kind of you can. It's easy to feel. Drezden Plotkin (17:00) Which is kind of a pun here. Jillian (17:29) hands off. Drezden Plotkin (17:30) Yeah, it's almost as if you're both being railroaded by the same information, you have to digest it completely differently. Jillian (17:36) Exactly. Yeah. So I think it's fair to what you were saying there about the medical gas lighting. Though I tried to put in a complaint and I tried so you can put in a complaint to the hospital, which I did. And then they came back and basically said, sorry, you feel that way, but we think it was fine. So then I escalated it to the ombudsman who reviewed it with a third party and they also feel like it was a just situation. And so they were closing the case. And I have no other recourse after that, which was quite frustrating. Drezden Plotkin (18:07) No recourse. Part of me wonders if the reason that we have such fail safes in place in the US versus the UK is because if the hospital makes the wrong decision, they can get sued for a lot of money. And when you say no recourse, it means you escalated to their independent reviewer and the independent reviewer of the independent reviewer. And that is your only recourse. Jillian (18:21) Exactly. Yeah, so interestingly, I'd also reach out to like a health law team and they were kind of like, that's not really going to get taken or go anywhere. So I think when you have universal healthcare systems like the NHS, when it's one big machine, there's a lot of cogs that'll turn to keep things going smoothly despite maybe some creakiness. And I think unless like you've been killed or you went in for an appendectomy and they cut off your toe, like there's going to be a way to justify it. And doing my midwifery training, which plays in well here, you learn a lot about good documentation and how different bodies are there to help back you and, you know, the insurance and all of this. So I think while it's great to have universal healthcare, there are some pitfalls and I think this would be a good highlight of that. Aliza Marlin (19:25) Chillion, subsequently, has anybody had a conversation with you about the truly medical reasons as to why a professional healthcare provider thought that this was absolutely necessary? And if they did have those conversations with you, were they convincing? Were they backed up by real data? I mean, you have a background. in a lot of this and you are clearly very aware of your own body and you are clearly very aware of what was happening to both your physical and mental state during your pregnancy. I just wonder, has there been any subsequent conversation about the real reasons and the real like medical facts behind why the best option for you was a complete hysterectomy tubal ligation? Jillian (20:19) Not really. So when I... So I had to see another cardiologist in Edinburgh where I live because Dr. Swan, she brought over the Scottish Adult Congenital Heart Defect Clinic basically. She's like, we don't really have one in this country. We should set up a centre, which is great. So she had done that in Glasgow, which was fine. It's not too hard to drive there, but they want you to have a more local cardiologist just in case something goes wrong. There's someone nearby with eyes on you. So I met up with... Aliza Marlin (20:38) Mm-hmm. right. Jillian (20:48) him in May or June, quite recently with Dominic, my husband, an obstetrician who I had spoke with was also there. And I was a bit surprised to see her because I thought this was kind of just a touch base, say hi kind of meeting. But it was to rehash that after a multidisciplinary team meeting, which I was not present at, they would not be supporting IVF. And I was kind of like, this is such bullshit. Why are you bringing me here to tell me this again? You've had a meeting about me without me, which is completely unreasonable. Who's advocating for me? And nobody's explained to me why this can't happen. And my answer was, it's very nuanced. was a great nuanced how, but there's no elaboration. And I got frustrated about the whole situation and ended up just leaving because I thought this is such a waste of my time. After I told them very explicitly how I felt about everything, because I'm tired of trying to be quite placid and civil because it's clearly not helping me much here. But anyway, yeah, it's a lot of, it's very nuanced. You just couldn't guarantee that the next time would be like this time, to which I say, but you can't guarantee that it wouldn't be. It could be, it could be just as smooth. Like, we don't know. And I'm sure you've experienced yourselves a lot of each, each person is different. So it's like, oh, you know. In general, heart defects present differently in every person. Like I was saying to you, Dresden, Bailey and I have the same heart conditions, but really different experiences and it's kind of shown up in our lives in different ways. So I find it unfair that because my own experience was quite positive with pregnancy, but then I'm being compared to people who maybe didn't have favorable outcomes or who they don't have enough data about. So rather than say, okay, we trust that you feel like you could do this. I'm saying I still feel fit and healthy. I don't think I've had any decline after the fact. So why is IVF now not an option for me apart from nobody wants to take responsibility or be liable if something were to go wrong? And if I've been thinking about this for a year and a half, that's a hell of a lot more time to give consideration to the outcomes of an IVF treatment and subsequent pregnancy than the couple of weeks I have to consider the ligation. So it just seems really unbalanced. But to answer your question, like no one's really sat down and said, listen, this is what happened with your heart. Here's what happened during the pregnancy, because we did all these scans and these things were threatening. I don't think there were any. And here's what's changed after the pregnancy that would make us worried about you having another one, because my echoes and my MRI have all been the same as they were pre-pregnancy. So I don't think anyone said anything to me because there's no empirical data about myself to support that. It's all risk aversion. Drezden Plotkin (23:36) And it's, risk aversion is a great way to describe it because there's a culture, especially here, there's a culture of risk aversion with cardiologists and CHD cardiologists. And I was speaking to a group of individuals and it was related to, physical activity and how much fitness you're allowed to take part in. What the doctors tell you do, you're allowed to do versus what you actually do and why they put those limitations in. And there's a lot of conservatism and Jillian (23:46) Hmm. Drezden Plotkin (24:03) I don't want to say fear, but just a risk aversion culture. And it challenges your bodily autonomy. And then this takes it to a whole nother degree. Eliza, if I'm not pressing too hard here, have you had similar experiences, even not with family planning, but just with disempowerment in medical care? Aliza Marlin (24:24) No, I haven't. I've been very lucky. I've been really lucky, but I've also had incredibly consistent care. I was in the care of one medical center from the day I was born until I was like 23, and then I've been with my adult CHD specialist for the past, you know, 33 years. So that most definitely... means that we have had conversation after conversation after conversation and it's never new. It's always evolving when I go in for my appointments. So I have always been very clear when I'm 100 % healthy and there's nothing going on and all the years where there are no changes, what I want my life to look like and what I'm willing to accept and what I'm not willing to accept that We have a relationship, my doctors, they haven't fought me on it. They've actually, they have been very willing to try and do their best to get me to that point where I want to be. So, and I know how lucky that is because that is not common. But I can't think of a moment where I did not feel as though I could have a reasonable conversation about being told no. Right? And I've been told no, right? You can't jump out of a plane. You know, of course, stuff like that. I'm not going to jump out of a plane, by the way. But, you know, random things like, you know, if you have to take it easier or if there are recommendations to slow down for something or if you need a procedure and you don't feel as though you're ready for it, we have a good conversation about the pros and the cons and the the data is provided to me. So there has always been discussion. So I have never ever felt disempowered. I've always felt as though not only am I a good advocate, but the people around me are good advocates and my team understands what I need. And that is harder when one, you're in a country that is new to you. Two, you're with doctors and teams that are new to you. I have never had children. So I imagine if I had become pregnant and I had taken on an entire maternal fetal team, that would have been a tough time for me to see that everybody agrees and understands the way I feel. So I've never had to take on new people like that. pregnancy is a time of incredible change in your life. And it's hard enough dealing with a chronic illness. Jillian (26:57) Yeah. Drezden Plotkin (26:59) And I'm happy you had a good experience. a of me, a part that stuck out to me was it's all been at the same clinical clinic, the same kind of hospital system. And I wonder from a completely different avenue here, I had a hernia surgery in my early twenties and the... extent of the interaction between the surgeon and that specialist and my cardiologist was he sent me to my cardiologist for permission. My cardiologist had me do a battery test said yeah you're good to go. I don't think they talked aside from that and then a couple years ago or a year and a half ago I had my I a major surgery on my tricep to get it reattached and it was all within the same clinic so the Surgeon knew my cardiologist by name and the extent of their interaction was is he good to have the surgery? Yes. Okay, cool But I feel like maybe and I could be jumping to conclusions here. So anyone listen to this huge caveat but the fact that the doctors Knew each other knew they'd have to face each other again might have played a role to your point Eliza with having everyone at the same clinic But that could also be taken too far where they, in Jillian's case, where they make these decisions together in a back room and don't elaborate on it and don't explain themselves. just, a group decision from a cohesive collective where maybe if one of them is really pushing a decision and the others know that they're gonna have to deal with this individual day in and day out, they're gonna be. arguing differently or not as thorough. Aliza Marlin (28:35) And Jillian, I will say that is where this becomes unacceptable, right? The way that you were treated and this behavior and whatever it is that decisions they decided to make, completely unacceptable. And I have known a lot of men and women who have been in not exactly your situation. This is pretty extreme. This is a pretty extreme situation. but who have been in situations where their medical providers have made decisions for them that they didn't agree, they didn't feel as though they could speak up. We grow up with this incredible respect and love for our cardiologists. I know that both of you have felt that way about your pediatric cardiologists, your adult cardiologists at some point, so that you look at them in a very powerful way. So when they're making recommendations, your first thought is not to question them. Your first thought is, they're going to save me. Right? And then when you walk away and you have a moment to really consider these things, you then take into consideration your whole life. Right? It's not just that moment in the doctor's office. It's like, what happens after you leave the doctor's office? What happens when you're with your son and, you know, he's right over there and he's like, mom, mom. you know, a year and a half or whomever or you know you have a night ahead of you that's going to be busy or a night ahead of you that's going to be really wonderful. But it's the fact that we hold them in such esteem that and you did not have the opportunity to step back from that esteem or those decisions and really kind of consider a week to consider what this meant. and you didn't have the information. your doctor shouldn't be relying on Google. They shouldn't be relying on you to do all that information. If they're going to throw a decision like that at you, then they have a responsibility to provide you with all of the information and to sit with you and let you ask questions once you're ready to ask them. Jillian (30:38) Yeah, I think so. And to that point, like when I was mentioning earlier, I kind of made offhand jokes about the procedure when they had talked about it while I was signing the form. And part of me feels like, do you not think you have a duty of care to hear that and go, something feels a bit off. You know, like when I was doing my midwifery training and visiting moms and, you know, even in birthing suites, when people are having their babies and someone says something and you think, I don't think they quite understand what what's happening here. So then you ask again or you offer other information or you can say maybe this isn't the best choice. Why don't we you know if this was a Monday why don't you come back in on Wednesday? But you know that that didn't happen and I think also to that note there was a little bit of I'm assuming. They had assumed that I would have more informed because. my midwifery background, like that I would know a lot to do with pregnancy and childbirth and procedures surrounding that, but like a midwife isn't an obstetrician. If you tell me tubal ligation versus a sphacondectomy, I can never say the word for complete removal. There are two different procedures and if in the fine print on your form you say something like, surgeon's able to pick what they think is best at the time and then you think the more extreme option is the best and then don't tell me why, And a year after I'm thinking, shit, what did I actually have done? If I go ask for a private opinion about getting my tube tie reversed to have them reconnected, what if they do a scan and they're not even there? I'm going to look like an idiot. So I to request my medical notes to skim through them and go, actually, they're not even there to begin with. Drezden Plotkin (32:14) You weren't told afterwards that they took it to another level? Jillian (32:18) No. Aliza Marlin (32:18) You know, Drezden Plotkin (32:19) Okay, you weren't told, so they, how you sign for one thing, they did something else, you weren't told afterwards, you complained and complained, they justified their decision, and then after all that, they have you come back to the office just to tell you again that they were right and you were wrong. Am I getting that right? Jillian (32:36) You are, yeah. And then when I said, look, I found a solution, they're like, yep, no, we're not doing that. It's a bit... Aliza Marlin (32:43) You know, Jillian, this is not on you. This is not on you. There were decisions made on your behalf without you fully being informed of the consequences, the future, and without you having an adequate amount of information and time to digest this and make decisions that were best for you. This is not on you. You can think about, well, I have this midwifery background. Maybe that's what they thought. Fuck that. Who cares what they thought? This is not on you. Jillian (33:23) Yeah, when I try like, you know, talking about advocacy, and I'm trying to stand up for myself in these appointments saying, listen, like, what's done is done, like, I can't undo that. As much as I'd love to have a time machine and be like, fuck no. I'm trying to find solutions for myself. And then they're saying, we'll talk to the team, but why that's not a we talk to the team. It's you're going to talk to the team. And you're going to come back and tell me what the team said, but tell me who in that room was saying Gillian feels this way or Gillian's experiencing this. Nobody is. And I'd said to them, that is completely unfair to have these multidisciplinary team meetings about a team member who's not there. And I was insulted because the closing remark in the letter was, if Gillian were to become pregnant, we would happily provide care for her. First of all, you think I'm the immaculate conception? Like what's gonna happen? That's not gonna happen. But also do you think I want you to provide care for me after all of that? No. Aliza Marlin (34:02) And now. And now, a year and a half later, you have your son, which is wonderful. You are rehashing. You're going through this, and you're thinking about this, and here we are all talking. What is your mental state like? Do you feel as though this is keeping you from, do you feel as though it's keeping you spinning? Do you feel as though, I'm not asking, I'm not suggesting that you should ever let go of this, but like, Jillian (34:16) Mmm. Aliza Marlin (34:38) I can imagine something like this would be really, really hard to kind of like find something to distract you, like find things that are meaningful to you. How is your mental state now? You don't have to answer if you don't want to, but... Jillian (34:52) No, no, it's fine. I think it's an important tenet because like when Dresden was saying about the the the gap in discussion around mental health in CHD and women's health in CHD, this is a great overlap. It's shit. I think like after he was born, there was a lot of even for me brushing it off as postpartum feelings because you know, the emotions are up and they're down and it was kind of everywhere. So fair enough. But then the more I settled, as in the more time went on and you think I shouldn't be feeling this way still, but I did. And this is where it gets a bit sticky is I had a meeting three months after my son was born with the obstetrician to say my mental health is terrible. I'm so upset that this happened. Aliza Marlin (35:36) You requested that meeting. Okay. Jillian (35:38) I did, And it was kind of like, because someone I know, basically the thing that set me off, someone I know had been diagnosed with cancer and his sister was the bone marrow match to help with their recovery. And I thought, shit, my son's not going to have that. Like I can't offer that to my son. And that is a little bit of postpartum, like, know, extrapolating and being like, now this is about me. But I actually was, I was like, yeah, actually I'm really not okay with this. I'm really upset that this has happened. And then I was like, I need to tell them. you know, was the doctor that I spoke to was very compassionate and trying to listen and understand my feelings. And I'm sure she felt her hands were tied. She's like, literally can't do anything to fix this, but you know, we could, she put in a referral to a postnatal mental health service. And I was like, okay. And then I hadn't heard from them. So I spoke to my GP, my family physician. and they put a referral into the adult mental health service. By the time the postnatal mental health service picked me up, my son was nine months old, and they said, well, by the time we get started with everything, he'll be close to a year, and when the kid's a year, you don't qualify for postnatal mental health anymore. And I said, why is it my fault that you didn't pick this up six months ago? Okay, adult mental health said this isn't really our remit, so it's not in our park. So then I ended up paying out of pocket for the counseling services and then my husband and I've had marriage counseling about it because it's kind of thrown a screwball in that way. That doctor who I spoke to a couple months ago had put in a referral to a cardiac rehab psychiatrist to speak to them about how to move forward, which is fine. The part of me is like, I don't want to move forward because I don't want to be gaslit or spoke to by someone else within your system to try and convince me that this is all okay. When it's not, to pat my hand and say, sorry, this happened, what tools can we use to move forward? I'm not moving forward. It's not a bad haircut. It's something temporary or small. Like this is so impactful to my life and my family's future. So to keep getting brushed off, even when I'm asking for mental health support and I'm on, you know, an antidepressant because everything kind of hit the fan around Christmas time and my husband had to take time off work and everyone was worried. It wasn't great. So I'm more stable than I was then, but at the same time I'm like, why am I now being medicated to deal with the emotions that are coming off of the situation that I feel shouldn't have happened in the first place? It's almost like a band-aid fix and I'm, you know, screaming from a mountain top up. This is not going well. And it's a lot of like, you'll be fine. Just give it time. Aliza Marlin (38:10) Mm-hmm. Drezden Plotkin (38:11) Something you said in the beginning there about how you were writing off the emotions at first as postpartum and then you mentioned gaslighting at the end. It sounds like they were so, the opinions were pushed forward in such a way that not only did it gaslight you but it led to you invalidating your own emotions until you figured out what was going on and until you went and took care of it. I point that out because there's a lot of people that might not have had that Not not that they weren't weren't able but yeah something might have caused them to not be able to figure it out on their own or that and it could have really I mean it's done a lot of damage and it could have been easily so much worse just because of the way that the groundwork was laid and Jillian (38:55) Yeah, I think I'm really lucky that my husband's very in tune with how I'm feeling about things. And he can tell if I'm having an off day or whatever. he would be like, can you so in the UK when you have a new baby, you get a health visitor, it's someone who comes and does like baby well checks at your house, which is nice. And they need like their weight and everything. But they're also there for the mom to make sure that you're okay. And he's like, if you don't call the health visitor, I'm calling the health visitor because like you're not doing well. So to have someone else who knows you well enough and understands the situation enough to say like, this is like causing concerns now. I think I was really fortunate for that. And my parents, despite being overseas, were also very involved. My in-laws are really lovely and they're 10 minutes down the road. So they're also looking out for me and we were living with them for a while, which was I think a saving grace because being by myself with a newborn and my own thoughts without my own family nearby would have been a catastrophe. So I'm really, really fortunate to have such a great support system who does notice things and tries to help me advocate for myself maybe after the fact. you know, like if you don't call the doctor, I'm calling the doctor, which is great. But yeah, I think you're right. That it's a bit of a clusterfuck. Drezden Plotkin (40:04) Yes. Yeah, support systems are critical. Just a lot that it's a lot and I'm sorry you're going through it. And you know, I had a list of questions that I wanted to ask y'all and I'll be honest here. I've ignored them because this conversation was so much more impactful than anything I could have led. But something I do want to do here while we still have the time is. completely different experiences, completely different healthcare systems. And Jillian, you have the dual experience of Canadian healthcare versus English healthcare. What can someone who's listening to this do to advocate for themselves generally as a CHD patient, be it in family planning or for care in general? Because a theme that I've had on other episodes is that women, especially young women, are continuously invalidated by some healthcare providers because they're seen as not knowing as much or not knowledgeable. And a lot of time outside of CHD, just patients and non-patients, pain for women is dismissed a lot. with all these issues and the combined three country experience between y'all, what can... girls, women, inclusive language, and anyone that could face these issues do to advocate for themselves. Is there something, a resource that sticks out, a way that when you spoke, they listened? What can they do? And then I'll ask a question later about what can we all be doing to help out? But really, what have you found that's worked, if anything, or what is there that they can do? Jillian (41:47) I think in my particular situation it's a bit tough because whether I'm speaking to somebody one-on-one or a group, I'm feeling a little bit invalidated. Yeah, a little bit. It's like the experience outnumbers your lived experience, whatever. I think not being scared to ask for time is one. I think, and my husband pointed out, this is a good thing, not being scared to leave an appointment if you're not comfortable with how it's going. Drezden Plotkin (41:54) Outnumbered. Jillian (42:10) Just because somebody's telling you that they're the expert in the anatomy or physiology of your condition doesn't mean they're the expert in how you live with your condition. So if they're speaking at you rather than with you or not really hearing what you're saying, don't be scared to like pump the brakes and say this is not a productive conversation. Maybe we can revisit this at a later date, but I like I'm gonna leave. I think people are scared to do that, especially when you have to there's long wait times for appointments. But like if you're waiting to be shot down, It doesn't make a difference. But to be able to step back and say, I need more time, or can you tell me more information about that? Or ask for it to be explained to you like three more times. One of my cardiologists in Toronto, one of his first questions at every appointment was, explain your heart condition to me. Because he wants to know that you understand what's going on. And I would always just play dumb and be like, I don't know, because I want him to outline it again, so that I know where my gaps are and I can ask questions. So sometimes like, Asking questions or playing dumb just to hear what a preconceived notion is can also be, I don't want say helpful, but it can reframe where you are in the narrative. Does that make sense? Like it's a really weird reverse psychology. Drezden Plotkin (43:19) It does. do that. We do that in business negotiations where if you know somebody is trying to get one over on you in some way or another, the term is you give them enough rope to hang themselves, where you let them speak and speak and talk themselves into a corner until you identify what their whole argument is so you can then show how educated you are. So it's playing dumb. just letting the other person Jillian (43:31) Mm-hmm. Exactly. Drezden Plotkin (43:46) Outline their point to such an extent that you're not reacting immediately. You're able to digest it. But that's a lot of good. Ask for time to decide. Be willing to leave the situation and the conversation and own your independence that way. And ask for more detailed explanations, be it playing dumb or just asking over and over again. And I know I cut in there at the third one. you have more? Jillian (44:11) I think you summarized them quite well, yeah, like just ask for more information, ask for evidence. know, doctors, especially you see people like Instagram doctors like to say, that's not evidence-based. And it's true, the healthcare system has to run off of evidence-based practice. Don't be scared to ask for it. Sight your source for me. Can I see the studies that you're referring to? Can I see what's informing your decision-making so that I can inform my decision-making? You know, not everybody's able to get access to PubMed documents or articles online or not everybody knows to because people have different education levels or experiences and exposure and they don't know that you can find studies and sometimes they're hard to read like, know, intervals and statistics is like, it's math and it's words, it's like kind of hard. So don't be scared to ask the specialist like what is informing your decision, explain how you understand that to me so that I understand. I think that's really important is just to put yourself on even playing ground with your healthcare team because it's meant to be a team. It's not them versus me. It's not the experts versus the like needy. They're all meant to be looking at the same common goal, which is to give you the best quality of life and the best outcomes. Drezden Plotkin (45:25) And I think that the last point goes to Eliza's point earlier, where we do see these cardiologists as heroes, because in a lot of ways they're saving us. a lot of the points you made all really come down to go in there confident enough to tell them you need time, confident enough to ask them to cite their sources and explain and explain and explain their point and be confident enough to leave and maybe confidence, not the right word, empowered. self-assured. Focus on your bodily autonomy. It's almost a negotiation rather than a service when you're making these big decisions. And Eliza, do you have, I think you have a lot to add here. Aliza Marlin (46:05) I have a few things to add, but I completely agree with Jillian. My advice would be one, pause. Hit the pause button and say, you know what? I need to go away and think about this and however long that takes me, that's however long it takes me, but no decisions will be made until I come back to you with my new questions, my decision, my crowd sourcing. If that's something that you rely on, that's okay too. The other thing is to... just as Jillian said, to say, I don't understand, try again. And continue to say, I don't understand, try again until you understand. I personally think most importantly, especially as women, stop apologizing. Think about your language, right? Women strew their sentences together in conversation in a very different way than men do. to say exactly the same thing. We add words like just and so and really we do a lot of apologizing with our bodies with the way that we are inflection in our language. And that is something that I think speaking for myself personally is so ingrained and I am personally working on, but it comes off as apologetic. Stop apologizing for yourself. You have nothing to apologize for. And you have everything to represent for yourself. I think adding disclaimers or anything that minimizes the questions you're asking or the statements you're making or the stand you're taking is putting you at a disadvantage. So be bold, be empowered, and be brave to speak in exactly the way you need to speak. Jillian (47:50) And sorry, just a final point when you were talking about resources. Don't be scared to get a second opinion. I know I'm on one of the Facebook groups for my condition and there's a specialist in the States, Dr. DeRani, I think. I feel like I'm dyslexic reading his name, DeRani, who really is keen to learn more because the more these doctors speak to people with these unique conditions, the more information they have to inform their decisions. And I'm like, sure, I'll go ask someone in the States what they think because maybe things are conservative here because of funding issues or just risk aversion culture. So ask for second opinions, shop around. I know that's a thing in the States more because of the privatized system that you're a little bit more of a consumer base. Like I'm allowed to shop around because it's a commodity. But even if you're not in that environment, like don't be scared to say, actually, I don't like the way this is going. I'm going to switch providers. I'm going to take myself out of this system if you have the means or ability to. And if not, you're right, these doctors do have to see each other in the hallway. And imagine you're the doctor who all the patients keep dropping because you don't know how to speak to people. And your colleagues getting the referrals because they have better bedside manner. Like it also helps inform the system of what's working and what's not working. So you're not just advocating for yourself, you're advocating for a bigger group. And I think that's really important to consider. Don't be scared to say that you're not impressed with the way things are going and you want a change. Drezden Plotkin (49:08) That's very well said. shows the importance of community and highlights the capitalism, the invisible hand of the market where when someone does it right, more people are going to go to them. get a second opinion. Go to your Facebook groups. Talk to people that have been through it, which is why I started this podcast is to give people stories of people that have been through similar situations. highlights the critical need for some kind of collective community for CHD patients. no, the problem we have is not a lot of people know that their heart condition falls into that, but very well said. Shop around, get the right service, confirm your opinion, talk to people, find the community, which is only gonna get easier as we all age and grow. And the lies of something you said too was equally impactful. The... stop apologizing, think about your language and how that works for especially women and young women. That carries over well outside of, you know, doctor's appointments where when I talk to, when people call me ask for like business advice, men and women, but predominantly women, a lot of it comes down to how am I going to, how do I get my point across that stepping on toes, especially in finance where a lot of people have a big ego outside of certain groups. And it really comes down to just don't have the apologetic tone and language, not caveat yourself. But there was a term you used that was better. ⁓ Disclaimer, disclaimer. Don't add the disclaimers because I mean, and this one's for women in particular, if they're going to think you're a bitch, Aliza Marlin (50:34) That's a great word. Add the disclaimer. Jillian (50:39) Disclaimer. Drezden Plotkin (50:48) They're gonna think you're a bitch anyway. You might as well make your point because, I mean, if you're right, you're right. And if you know what you're talking about, let them evaluate you however the fuck they want because you're able to... you're still going to be right. mean, you're still going to get that benefit and it's going to help you move into a position where people respect and admire that instead of discredit that. But to move into the big question and the question asked all my guests about what CHD means to you at this point and a big part of that answer, the thematic part of that answer is optimism and resilience, which means something so different in this discussion than a lot of my previous discussions. Usually it's resilience in overcoming your condition and doing what you need. And it's similar, but at this point, and Eliza, I know you answered this, but it's gonna be a much different context now. as I'm... Given all that you've gone through and all that you're going through and everything that you've learned and done, what does CHD mean to you? Not the medical definition, not the malformations in the structure of the heart present at birth, but what does it mean to you as you sit here with where you're at, what you've seen, and what you know about the community? Jillian (52:08) I think I'm still quite new to the broader community because I hadn't really been too involved until this situation came about. So I've had a completely new, I'm reorienting myself in it because I think before I was very much not, I was like, it's just something I live with, it's fine. Like, would never label myself disabled or anything. But now, I still wouldn't label myself disabled, but I would say... It's like being thrown into a resilience baptism of fire. It's like, that's what it is to me. It's things being thrown at you constantly and having to get really good at like emotional mental dodgeball, which I know isn't a very inspiring or exciting way to view it. But in the current situation I'm in, it's just firefighting with others and trying to keep yourself. away from the flames right now. It's not a very sexy answer, but that's where I'm at. Drezden Plotkin (52:59) But we don't need sexy answers. it's a lot of the answers we get are optimistic and sexy, but it's a reflection of where people are at. being raw and authentic is going to make it so anyone listening to this is able to, by being so vulnerable with us, and I really appreciate that, it's going to help people listening. It's going to help people that are going through something similar or might go through something similar. Jillian (53:08) Mm-hmm. Drezden Plotkin (53:24) just as much as the six tips that you guys gave that I'm probably going to cut into a whole separate episode and pump everywhere so people can get these. awesome, awesome, actionable pieces of advice. So I appreciate you saying that. And I appreciate the fact that it's not sexy. It's not the kind of answer that we've gotten used to. And we started to take, I've started to take for granted because it is firefighting. It's addressing each problem as it comes up. A lot of it's keeping your head above water, right? Jillian (53:54) Yeah, exactly. Drezden Plotkin (53:55) Eliza, tough act to follow. Aliza Marlin (53:57) It is a tough act to follow and Chilian, I would not have had the boldness or the, I would have not been able to embrace my vulnerability in the way that you have today. So I am so inspired by the fact that you were open enough to tell your story and where you are right now, which I think is, for me, really. Jillian (53:57) No. Thank you. Aliza Marlin (54:20) the definition of what it's like to have a CHD. Being bold enough and brave enough to embrace your unique and authentic self with its flaws and seeing those flaws as being able to help others. So thank you for sharing this. Jillian (54:36) Thank you. Drezden Plotkin (54:39) beautifully said because I mean, imagine just, I'm just hammering this point, but imagine you're someone going through it listening to this right now. And. Jillian (54:50) Yeah. Drezden Plotkin (54:51) Jillian, you've done a lot. you know, I'm not an emotional guy. I never get emotional except on these recordings. But the value that this will have, even if it's just one person that hears it that needs it, just that one person, the value, I mean, it makes it all worth it. Jillian (55:09) Yeah, I think just. Aliza Marlin (55:10) And you're raising a child right now. Like you're raising a child right now while you do all this. Right. Let's not forget that because there's still that incredibly enormous job. Jillian (55:13) Yeah! Yeah, he honestly. Yeah, he's great. really. Drezden Plotkin (55:22) Wait, kids are allowed to work? Jillian (55:23) Honestly, it's so easy. Like I think you'd coast through it. But you can edit this out if it's a little bit weird. But I was going to say, like, if you put in your show notes, Instagrams and people want to DM if they are in a similar situation or are anxious about like their own pregnancy or things they've been told and don't know how to bring up this type of conversation to their health care providers. And I can only speak specifically to pregnancy and that type of thing because that's my, I wouldn't say passion project, it's kind of just throwing at me, but all right, here we are. I'll be angry with you and I'll tell you how to say fuck, but anyway, I'm very happy to DMs are open always for just wanting to have a moaner event or whatever. Drezden Plotkin (55:55) expertise. Yeah you And what's your Instagram tag so they don't have to go into the show notes? Jillian (56:13) at Gillian Tate, I'll spell it, J-I-L-L-I-A-N-T-A-I-T. That's me. Drezden Plotkin (56:22) And I appreciate you, appreciate you offering that. it's all right. All right. Thank you. With that guys, I am going to wrap up. This has been a powerful conversation and I am incredibly, incredibly grateful that you both found the time and I've been so authentic and vulnerable in the hopes of helping out others. And it's wonderful to hear. And again, I am not a woman. haven't had these issues. So it's even more impactful to me where I'm there. are a lot of moments where I'm sitting here realizing something that I've never, frankly, never thought about. So it's very educational for any guys listen to this too, unless they're more well-informed than I am. Aliza Marlin (57:03) It's brave. It's a pretty brave move for you to decide to host a conversation like this. It's that's a pretty brave move to dress in really. Men would. ⁓ Jillian (57:13) Yeah, but a good one. Drezden Plotkin (57:14) I think the bravest part was when I called Eliza and said, I'm a little bit nervous, can you come please? And God, am I happy I did. ⁓ With that being said, guys, that was Jillian Tate and Eliza Marlin, two powerful women advocating for themselves and helping others across both sides of the pond. Now remember if you have questions, comments on the episode. Jillian (57:21) You Aliza Marlin (57:23) Yeah. Jillian (57:26) Perfect. Drezden Plotkin (57:39) You can reach out to me if you want me to put you in touch with Jillian or Eliza. I'll just reach out. Reach out through our website, 1 %heart.com. We do have a new website coming soon. Email support at 1 %heart.com or message us on Instagram at the CHD podcast. All the contact information will also be in the show notes. Thank you everyone for listening. I will talk to you soon.