Unknown Speaker 0:00
Like I think a lot of when they're like, Oh, that's a shame. You're in a wheelchair and it's like no, a wheelchair is a way for me to live my best life. In this circumstance. It's empowering. So we'll see if I actually need one one day, but now I'm less scared.
So welcome everybody back to the pyjama interviews. This is your podcast for every woman living with chronic illness. Today, we're having an interview and really in depth discussion with Ethan Minkoff that Ava has her own podcast called human care. She's also the co host of the invisible not broken network. And she has a very fantastic TED Talk, five minutes to fix our broken health care system. Stay tuned at the end for this week's exciting announcement. And let's dive in with Eva. Welcome, Ava, and thanks so much for joining us.
Unknown Speaker 1:00
Thank you. I'm very pleased to be here. I think you were spot on when you said we've been in orbit for three years with each other, possibly more. But yeah, I'm glad that we're finally doing this.
Yeah, me too. So either, would you mind sharing with us your conditions that you're living with and your process for diagnosis?
Unknown Speaker 1:24
Sure. So I'd say my most prominent diagnosis now that I'm aware of it is Ehlers Danlos Syndrome, or EDS, connective tissue disorder. I also have fibromyalgia pretty solidly I'd say because it can be a vague one. And I have been diagnosed with mast cell activation syndrome and supposed pots. However, neither of those affect me that drastically yet, thankfully. Oh, and you know what, I'm going to mention this, because I often don't, and I want to because a lot of people tend to shy away from mentioning it. I have an unspecified mood disorder. So it is not technically bipolar. But it is something along that spectrum that is unspecified. And I think that's important to mention, because a lot of us with physical chronic conditions do have mental health related conditions. But we don't, we don't really tap into that as much when it is, in my opinion, inextricably linked.
Yeah, I think that's a really good point. And so I'm wondering for everybody listening and sharing with us together. Would you share with us how the diagnosis process when including the unspecified mood, because I think there's a history and there's a conversation in all
Unknown Speaker 2:44
of that space? Yeah, sure. And I apologise in advance if anything's confusing, I'm going to try and work on the timeline correctly, and also make it succinct as much as possible. So like many people probably listening, my diagnosed nurses journey was very long, unnecessarily. So I've been in pain as far as back as I can remember. I know that at eight years old, I was complaining about what I am still not sure of as growing pains or not. It was at eight at 12 I started seeing specialists when paediatric. Ooh, why am I forgetting what the name of the bone doctor, orthopedist because my right shoulder was in terrible pain all the time sharp pain, I felt like someone was signing it off every once in a while. And I remember that being the first of countless appointments that I went to where there was no light at the end of the tunnel, where there was no diagnosis to be made until I was 20 years old. During that from 12 to 20, my pain progress not just for my shoulder, but to all over my body. And not just sharp joint pain, but throbbing pain, burning pain, fatigue, brain fog. And in the midst of all this, and I may reference it later, I was a professionally trained ballet dancer. So it took quite a while. Yeah, it was it was a lot. It took a Houston Ballet alone will take a huge toll on your life. And that mix with all of these chronic symptoms left me feeling physically weak, emotionally weak, very confused, in a lot of pain and misunderstood by every single person around me. And when I was 20, to be clear that diagnosis was Fibromyalgia It wasn't even EDS yet. At that time. Fibromyalgia wasn't I mean, to this day still is somewhat of a vague diagnosis or as they call it a crapshoot everything and I feel the Reason for that is, and I hope this isn't doesn't offend anyone. But typically Fibromyalgia is an add on, like a complimentary condition rather than one on its own. I personally feel that if you just had the diagnosis of fibromyalgia, you probably have something else also. And Fibromyalgia is a consequence of the physical, mental or psychological stress you've experienced from that other condition that you have. So EDS is a genetic condition, I've had it my whole life. And it just progressed over time. And I believe that mixed with ballet led me having Fibro. So I was diagnosed with that when I was 2022. Things were getting worse with my joints and a doctor finally diagnosed Hypermobility syndrome, which is like, it's pretty close to EDS. It's not really connective tissue disorder fully, but it's on its way. And I will say something, I should say something about every single one of these diagnoses moments because they're notable right after like a decade of not being diagnosed. I'll say a funny thing about this diagnosis was, he was surprised he knew what it was right away. And I said, Well, why is no one found anything before this? And he said, because there's nothing there. And that's the problem. You have too much space.
Right? Introducing interesting.
Unknown Speaker 6:32
Yeah. So he said, That's why you can't find anything on X rays, and MRIs because there's nothing there. And he also told me, he was a lovely doctor. But he said to me, Look, you will be in pain for the rest of your life. But it won't kill you. He was like taking making an optimist. He was like being real with me. But he's like, Don't worry, you'll be fine. But you weren't gonna be even paying the rest of your life. Yeah.
Yeah. And how did that land emotionally for you either.
Unknown Speaker 7:04
I remember that his delivery actually helped a lot. I don't know if everyone would receive it the same way I did. But he saw it as like, don't worry, you're not going to be in a wheelchair, you're not going to I don't know, whatever it was, it's not going to get so much worse. Unfortunately, I do have EDS. So that's not actually the case. But to his knowledge, he was trying to comfort me. And I also think at that point, I knew that I was going to be in pain the rest of my life. I really just wanted an answer. At the end of the day, I was like, whatever's wrong with me. If it's not an auto immune condition that has a complimentary medication, I knew I was probably doomed in the pain department. And even with autoimmune conditions, they're often industrialised. But for a number of them, there are really great treatments, and I was tested for every single autoimmune thing you can think of. And I had none of them, thankfully. But it did lead to a lack of answers for a long time. And then jumping ahead to a year and a half ago, only a year and a half ago, and I don't mind sharing my age. I am 31. So at 30, I was finally diagnosed with Ehlers Danlos Syndrome by a specialist, and I was urged to do so because things were getting a lot worse. And I know a number of people with EDS, having now been like in the chronic illness world for a while. And they all said to me, looking like looking like EDS, Eva. You should go get that checked. Lo and behold, I have it. And the one last thing I'll add there is I was diagnosed a year and a half ago, but maybe only a few months ago, did I actually start to understand what that meant for me in terms of my future?
I did. And so how's that playing out for you to share with us a little bit about that?
Unknown Speaker 9:00
Yeah, sure. And it's a little less raw for me now. But like three months ago, I went through a major transition because I moved to the other side of the country and started job, all these things. And so there was a lot of change at once. And it just hit me that this is a progressive disease. It's not one more, I'm just going to be in pain. It does progress. I have no idea at what rate it's going to get progress. I could be a little bit more pain, a little looser joints than I am now or to be as extreme as I am now in a wheelchair most of the time, because I am dislocating all the time. And I know people all along that spectrum so I don't know it just I didn't let myself I didn't let my mind go there before. And my co host is invisible. Not broken. Monica, she has Ehlers Danlos Syndrome quite badly. She really does. She dislocates like she's a doll. I tell her. We kind of make jokes about it. A lot, you know, you gotta, you gotta make light of it somehow. And so I look at where she is with her EDS. And even though I have no idea how likely I am to have the level of severity that she does, I know that it's possible. And so she's really great at supporting me emotionally, while also being real with me. And saying, like, you should think of this ahead of time, it's probably not going to be as worse as you think it's going to be just prepare yourself. So it's not a surprise. And so I met her in person for the first time ever, actually, last month, which was wonderful. Because we've always lived across the US from each other. And she let me try her fancy smart wheelchair. And that was a moment that I thought was going to be scarier than it was. And it actually felt really empowering, that I knew there was a tool out there that could make my life better when things get worse. So rather than feeling like I think a lot of when they're like, Oh, that's a shame, you're in a wheelchair, and it's like, no, a wheelchair is a way for me to live my best life. In this circumstance. It's empowering. So we'll see if I actually need one one day, but now I'm less scared. So that was great.
Yeah. And look, I really appreciate the vulnerability and parts of what you're sharing with us too. Because while it's linear, it's actually your life. Like, you've been in appointments, and doctors and tests and scans, and I'm sure you've had blood tests. And then that's all gone on what else has been happening, like over this whole journey, then there's you having your life. So I'm wondering if you could share a little bit with us about that, like, what else was happening in your life either?
Unknown Speaker 11:55
Well, if anyone knows, Eva, they know it's never a dull day. A lot has happened. Let's see what I can highlight. Well, dancing went on until I was about 18. And then my body called it quits. But I am still, I would consider being a dancer part of my identity, even if I never danced again, which I'd like to make a note. Last night, I did Assault class. And I'm starting to do that, because my body seems capable, until further notice. So I'm very happy about that. So dancer still lives with me. But I got my I got a, what he called an undergraduate degree in neuro psychology, and really started to fall in love with the with the intersection of emotional psychology and neuroscience, because the brain is fascinating. And then the long story short is somehow I ended up getting a master's in nutrition and science, because I also found nutrition fascinating. And, and I thought it was going to be a doctor. And all of this somehow led to me realising, you know what, I don't want to be a clinician studying all of the sciences, and I don't actually want to go into medicine. But I'm fascinated by the world of healthcare. And I also admire doctors greatly. And I know like a lot of people when they hear that may, it may trigger them because we all me included, have a lot of issues with doctors. This is something that I talked about my TED talk, and I could talk about all day long. Doctors are people at the end of the day, just like all of us, however, they are people that have dedicated their lives to helping others. It is a really hard road to become a doctor, you don't you definitely don't do it for the money. Especially not anymore. You don't prestige. Like while those things can come with it. You could make a good living you could have received as a doctor, there is no way anyone goes through med school residency and possibly fellowship for those things, or at least if they started to go into it for that reason, there's no way it can, they were able to maintain the stress and workload and everything else that goes with it. For those reasons alone. If you're a doctor, it's because you care about people and you care about science. You care about forwarding the world and making the world a better place. Maybe there's exceptions to this, but every time I meet a doctor now I feel like and I'll get to this, but I married one. I have enormous respect for them, at least on some fundamental level, because I understand what they went through to get to where they are today. It is very, very difficult. I don't care how smart you are. I know some of the smartest people don't want to save the world. I know some very smart people. I was lucky enough to grow up around them. And it's still a huge struggle for them. Yeah, so yeah, yeah, that was a tangent. But I didn't become a doctor. And lots of other things happened with me like entering the chronic illness world, which I'll tell you I did not see coming. Like, you asked me 10 years ago, if I was gonna be like a chronic illness advocate, actually a chronic illness and Doctor advocate like, I would have thought you were crazy. And I also had this company for four years called Wella copia, which, unfortunately, no longer exists anymore. But it was a matching, it was the equivalent of a dating site for doctors and patients, and not for them to actually date. But for people to find the right care provider and, and care providers to find the patients that they were best suited to treat. And that's really how I actually got into this world. I would say, I came up with that idea, because I needed it myself, I was tired of, you know, the quote unquote, Doctor dating the having to go to all these doctors that couldn't diagnose me properly. And so I was like, I don't understand where humans at the end of the day with different values, skills experiences, which you could equate to expertise as like a doctor or an expertise as a patient with their own illness. So I was like, I don't know why we can't create the equivalent of a dating app. And I'm gonna be honest, it worked. And it worked well. And I still stand by it as a very good idea. But in terms of execution, and logistics, and the pandemic, it did not survive, sadly.
Yeah. And I'm with you, like, every time I have these conversations, particularly with anybody who's had their experience of chronic illness, and then that has, in many ways evolved into a profession within them. There's no none of us thought, like Denise, none of us thought we would be chronic illness professionals. Like that's just not what it is. But I actually want to grab this because this is really important to talk about, actually. So and I really will be interested in in your reflections on this too, because you've been around like me for quite a while, that one of the ways in which you evolve in this process is, we all have our experience of it. And then we went looking for help, you know, 1015 years ago to help us with our experience. And like you there was nobody. Also, I'm in Australia. So there was the closest thing I could find was one Facebook group in the UK. And that was great for drugs or to ask questions about really good at early diagnosis. But then also like, okay, but that's all that group does is talk about medication and treatment, and I'm happy to be an elder in that group and reflect, yes, I've been on this drug for 15 years. Yes, it started this way. Here's where I'm at now. And suddenly, if things progressed for me, I would use that group to reflect back to me. But we all went looking for something to help us. We also there was a gap. We navigated things on our own, and our hearts have all gone. Oh, I really don't want anybody else to have this experience. And here's what I've learned. And I really want to offer that. And for me that I worked out what the emotional processes and I don't want anybody to suffer emotionally because particularly when you're what I think of as you're at sea, and you can't see land, it's just you in a boat, and you're like, Okay, how's that going to go with the doctor? Or how am I ever going to get to land, I want you to know, that that's, that's a that's a phase. That's an emotional experience of illness, but it's not the end of the story. And there's three other emotional phases in that process. And you do end up on land and you do end up sort of walking through the forest and you know, having a bit of a feel about where everything is. And you do come over the hill and see the village and you know, Return to Community. But also that's not linear. And you sort of drop around in that you can be hanging out in your relationship with everybody having coffee and then one blood test and you're back at see again.
Unknown Speaker 19:32
Exactly, yeah, it's definitely not linear. i There have been times where I feel really stable. I have answers and what's going on and then there's a wrench thrown into that and I almost positive that I have one coming up. So I will I'm preparing mentally to be at sea once again. Yeah,
and our nervous systems do come to know it. And this is actually just like you do know Okay, if I take this drug, I'm going to be unwell for two weeks, but then it's going to taper or then it's going to stabilise. And that's just what happens. And you do come to know your emotional phases. But one of the things that is so important to know is that you can have this deeply positive your relationship with yourself, even when you're at sea, or even when you're not able to do all the things that you hope to do. And I'm wondering, Eva, you know, you've hosted your own podcast, you've been part of the invisible not broken network. And I'm very happy for you to share now your new and exciting role, because it's all around this process of helping people have this really great relationship with themselves.
Unknown Speaker 20:46
Well, thank you. So since certain things have not launched yet, I'm gonna have to stay pretty high level that I can give you these little hints. So in running the invisible, not broken network and hosting human care, I interviewed the truly wonderful CEO of the, the organisation good days, which helps with copay reimbursements in America, sorry, not Australia, or anything, but like, I'll see you guys a very different healthcare systems where you don't really have that problem. Anyway, while they have provided tremendous aid to so many people, I mean, I actually am at a loss for the numbers now, but they've really done some great work and reached, I think, 100,000 people now at this point, the Clarinda, Wally, the CEO really wanted to start a new initiative that would reach more people in a different way, like a long term impactful way, in addition to their financial aid, and I brought her on to human care, okay, I've interviewed her twice, actually, and she's the match to the last episode I did on human care, I really would like to do more episodes. And she asked if I would build out kind of an equivalent of invisible, not broken for good days. And so that's what we're in the midst of doing it. So it'll be a new podcasts network, maybe like a media network, where we involve video and blogs, not just podcasts, and it will be called empowered us. But I'm not going to talk about the shows yet. I'm very excited about them. But they will hopefully launch in like April may be may 22. So they're coming up, yay. What is difference difference between invisible not broken, and the will be empowered us is that these podcasts are not just about chronic illness, they're actually actually about multiple different perspectives in healthcare. So we're talking patients, we're talking caregivers, we're talking health care professionals allies. My belief is that in order to actually have a substantial impact on our health care, we have to involve everyone, we can't just be patient advocates and like, fighting for our rights alone, when we're not involving those of our caregivers, and our doctors and our support systems. We need to all work together on this. And that's why we also called it empowered us rather than like empowered patient or something like that. I actually hate the word patient. But I understand that it is somewhat of a necessary evil a lot of the time because it's a label where you immediately understand what that means. But know that anytime I say patient, I really just mean people.
Yeah, and I'm absolutely with you. It's not a word that I would use myself. However, I just gave a talk at a medical conference. So of course, it's like this is important for patients. This is important for clinicians, because in that context, there's roles to sort of work out which part you're in. But I'm absolutely like It's human. And it's a really interesting discussion, because I think part of the evolution of this conversation is to talk about, well, how can we break down into these roles where there's a lot of equality and what I think of as sovereignty, and we're in a conversation between two very important and powerful humans about the physical journey, because I think that clinician patient has historically and I will not say necessarily, because I do not believe it's necessary, but it has a long history of a power imbalance.
Unknown Speaker 24:34
Yeah, I would agree with that. While turn of the century, the 20th century, and before then there were much closer relationships with our health care providers. There was still that power imbalance, I would say even if the relationship was good, and now now, what's odd, is that we're trying to level the balance, even unproductive way we are trying as patients to speak up about what we know, in ICD, like more of a battle. You know, it's like, we as again, patients are saying like, I know better than you doctor. And we might like we absolutely, there's certain parts, we absolutely know better than the doctor, we know our experience better than the doctor. But if we're just doing the equivalent of barking at them, like, Hey, listen to me, that's not really going to help the situation. Sometimes that might be necessary. Absolutely. But we need to work together with them. That's what the power balance really needs to be, we need to be a team, not two different entities barking at one another, which is now what people are trying to work. I am making some assumptions here. But I'm observing people are defining the balance as two people equally barking at one another. And I don't work that way.
So I think this is one of the most interesting conversations that we're having presently. Because the question is, and it's such an internal question, what you've raised is actually a deeply internal process of how do I come to this relationship with a clinician in deeply grounded in my own power, knowing my knowledge and my experience, but also understanding that I'm coming for what I think of as strategic advice. The doctor is the specialist in, they know their terrain, I didn't go to medical school. So there's things that they know. And they are providing me with this specialist advice. And I'm the decision maker about me and my body. But they're the one who are sharing all of the advice, you know, all of the things they've studied the things that they've seen, and they're the person that I'm getting collective conversation with. Now, like you, I know that for so many of us, and this is in no way, in absolutely no way to disregard the long history of subjugation, especially of women have horrendous history of Tests on women. And just the experience that is now had by so many women in the investigative process, where their power imbalance is really strictly reinforced in the doctor's room. And we're in a new evolution, we're in a new conversation. So the conversation for me is how do I turn up in that, because I'm not there to bark, I'm there to hold a boundary. But I'm there to hold the boundary, because I'm the decision maker. That's the boundary that I'm holding. And then like you I have you look for the doctor whose relationship works for you. I have an amazing neurologist, I have a beautiful gastroenterologist for my liver condition. I know who they are, as humans, like their quirks, because we've been in relationship 678 years, you get to know them. And they you so I think this is a really interesting conversation. And I hadn't clicked on to either. This is also the conversation we're having now, as we stand in what I think of as our sovereignty. We're not in battle, we're just in with the decision maker in the room.
Unknown Speaker 28:25
That's a great distinction is setting boundaries versus barking. As I was saying, it's very important that we have boundaries that we know that we are the decision makers, it's how we go about it that I think needs to shift for a lot of us. And and that goes with mindset. I honestly at the end of the day, I think what's really missing is empathy on
Unknown Speaker 28:53
both sides. Yeah,
I think it's also how we go about it. I think that as we are maturing, and it's actually a maturity from the patient disempowered model into human to human. Great advice. Okay, if we try that, here's my fears about trying that treatment. What do you know about that? And getting that click, but also my maturity is, I'm living with this condition. There may be treatments that work for cure for many of us, it's managed, there's a whole wellness industry and a whole industry out there, also making a lot of money out of us. And our fears, and some of it's helpful and some of it's not and you learn discernment. And that's the other piece that goes with it is you have to learn discernment, and it's part of your own psyche, as well as okay, what's my fantasy about how this will go? And what's my discernment of grounded reality? Eat, which doesn't mean that I won't have, you know, really amazing, powerful, you know, for me, the drugs that I first took for my liver condition were absolute crap, and I slept 18 hours, 24 hours a day, the drug I now take is, in my view miraculous because, you know, I'm up, I'm incredibly well. And the only impact it has is if I get a cold, I'm very sick for a longer period of time, because it's suppressing my immune system, both drugs did that. But this one's much more aligned to me and my metabolism. But it's this maturity emotionally within ourselves to then have those conversations around. You have to have advocacy at times, boundaries, and discernment about who you're in relationship with. I'm curious if you've spoken to so many people, what is the wisdom that you have about being in the doctor's room? Like, what is it that you know, is important in that space?
Unknown Speaker 31:03
Oh, I'm gonna have to distil a lot of thoughts. Well, I guess going back to what I just said, is,
Unknown Speaker 31:12
make sure that empathy is present in your mind is, is the filter through which you have this interaction, and that goes for both sides, empathy for yourself, like an understanding of who you are, what you need, what you came there from, being there for. As well as taking care of your well being like your emotional well being without like, like, stay stay conscious of that as much as possible, because it's very easy to get emotionally triggered in a doctor's office, things do not go the way you want them to. And I I'm raising my hand here, like I am definitely someone that that happens to like, I will not sugarcoat it. And then at the same time, look at your doctor through a similar lens of empathy. And that means yes, you should hold them to be being a professional, to being whatever maybe specialist they are to, to providing what they should be providing as a as a service, essentially, but also recognising that they are human. And that means a lot of different things. That could mean one, you have no idea what day they had, which doesn't mean that they should, that is not an excuse for malpractice or bad behaviour. But it is important to note. For instance, if they seem a little short with you, especially if you've known them before, not to be that way, recognise that while it's not okay for them to be rude or short with you, or what have you. If you recognise that maybe there's something else behind this, that it's leading to it, you're a lot less likely to be really angry with them. Because you understand you may not like it, but it's like, okay, they're having a bad day, I'm just gonna think about what I need and get what I cannot at this appointment, not making a big deal out of it. Also recognising that very unfortunately, they're going to make mistakes. And I say, unfortunately, to make it clear that every human makes mistakes, but it's unfortunate because yes, they are healthcare providers. And ideally, we'd like them to not make any mistakes, but they do. And a lot of the time those mistakes really mean that they just don't have the knowledge or up to date knowledge on what it is that could be of most value to you. And that's because of like just being able to hold an ever growing plethora of options and knowledge in their head. But also sometimes you may not know that there's something you should have shared with them. And they did like didn't know to ask, that's a whole problem on its own, which I won't get into right now. All this to say that, you I think the best piece of advice I could give is recognise that you're both human they're and work together knowing that you want the same things. Not does that have life you all want to be loved. You all want to be respected you all like there's so many things as humans we all want in common. But even in that room, you both want the same thing I promise you, even if the doctor also wants to get out of there fast because they have another patient or they need to get home whatever, they still want to solve your problem. I realised this recently that the most empirical way to look at what a doctor does is they're a problem solver. That's what they
Unknown Speaker 34:31
Unknown Speaker 34:33
Like really, at the end of the day, sometimes they can actually do something about that problem. But that's actually all they're supposed to do. Do I think they should have great bedside manner and treat you like a human and all those other things that are necessary in providing good care? Absolutely. But they're their job is actually only to solve your problem.
So let's talk about this because I think you've raised some interesting points and I want to I want naturally have a real conversation about it, because here we are. So firstly, something that I worked out with my liver specialist who, you know, it can happen to me, but I'm medicated or untreated, the condition I have would lead to cirrhosis. And it's rare. So I'm in a room with all the liver transplant people, that's where I'm at. And we don't know what's going to happen with me. But that's not the situation I'm personally at. But one of the things I worked out in the waiting room that my specialist would do, is he because I was the easy, I was the easy one, we were doing maintenance. For me, it was always anxious, like, because I'd been there and been in the moment where he says, Okay, you take this treatment today, or we're having this biopsy, like, Well, I've been in those places. But I also see all the people around me, who and all my heart, the courage and just what it takes the tenacity to turn up to a doctor's office, when you're in jaundice, when you can barely walk when your organ is failing what it takes to turn up. And then for him, I know that he would see the patients that he was delivering difficult news to, and I was the easy one he would slot in between. And I just noticed that so that I might wait longer, and people might see him before me. But I actually worked out emotionally. And I don't think he even knows it. I worked out emotionally what he was doing. He was saying difficult than he would say that easy, then he would say that difficult. I think in terms of the relationship emotionally that we have. So I think this is this is the trickiness of the territory. As women, we don't want to voice up and make the man uncomfortable in the room, because often the doctors are man. So we're thinking, Well, I don't want to be a burden. And I don't want to ask these questions. And then we don't get the information we need, or we don't share the story. Or we back off. If they're abrupt with us, we think oh, I shouldn't I shouldn't have had that. Or I'll just wait or we get this kind of cultural relationship with it. So for me, it's about Yes, recognising their human but recognising their humaneness is their ecosystem. And my humaneness is my ecosystem. And then we're meeting on a bridge in between, but it's not my job to go over and manage his ecosystem, it's just my job to notice what's going on for him, and work out whether that actually has impact on me or not, because we're two different ecosystems. And we're meeting on the bridge. It's like, okay, you're grumpy mood today. And I've been, you know, of course, when you see so, so often. And over so many years, I've certainly had it with my neurologist, where there's days where he's jittery, or he's abrupt, or he's not as warm and welcoming, as he is on other days, where he's asking a lot more questions about how I am or how my partner is, or whatever. But I just know, we're meeting on the bridge in a day where his ecosystem is at capacity. And he's just moving through what he has capacity to do.
Unknown Speaker 38:15
I love that picture that you've drawn. For us, I think that's an excellent way to put it, where we are different ecosystems and finding a way to meet in the middle, it is definitely not your job to handle someone's ego, but acknowledging that and seeing and noticing how it could or could not impact you like that's the control we have, we don't have control over. Really what happens to us a lot of time, like we have control over how we respond to it. And that goes within the doctor's office as well. We have we get to decide how we respond to whatever that doctor is throwing at us good or bad. And part of that response, like the best way to, to fashion such a response is by being empathetic to understanding with their ecosystem, as you put it.
Yeah, it's really, that's how I feel and how to navigate it. And it goes back to what I was saying before that when you've been around for a long time in this process, one of the gifts of that is you sort of learn how to navigate it and you learn the humaneness and you learn also things that feel inhumane and how to stop some of that behaviour before it gets underway. And I certainly think there's been certainly early in diagnosis and early before diagnosis just in all the tests and that I had some pretty disturbing experiences. And I think this leads us to now Eva, where there's a barking there is the barking response. It's a natural human process. You've had a very traumatic or disturbing experience, so you haven't believed so your next response is I love it the barking because it's actually making noise. But it's not to diminish that actually, there can be sacred anger in that moment as well. And sometimes you have to match the energy of the person to get their attention. But you're not off balance when you do that. And that's the maturity I'm talking about is, it's a place where you go up and out. But it's a holding of your authority, as opposed to up and out and over the top to squash. So you're just matching energy with what's going on with the other person. That's a face. And then as you learn more about this relationship with these humans that you're going to be in relationship with. You learn how to manage that in ways when you don't have to raise your energy where your authority is in yourself and you are matching it without having to amp up even you can just be in your own energy and speak directly to them.
Unknown Speaker 41:02
I'm thinking about that experience. I had one of my
Unknown Speaker 41:09
I don't know, I don't want to say worse Doctor experiences. It bothered me the most, even though there can be much worse. There was an orthopaedic surgeon that I saw as an adult first at like 20 years old before I was diagnosed with Hypermobility syndrome, actually, I guess both times were before I was diagnosed with it. I went because I had joint pain all over my body, right? He was a top, a top doc like literally on the list, Park Avenue Doctor highly, highly recommended top of his class, whatever. And also very handsome. Just a side note. And so he evaluated me was definitely one of those, unfortunately, statistical doctors who interrupted me within 30 seconds. 60 seconds, I don't know. And maybe spent, I don't even know if he spent five minutes with me, actually, I'm really not sure. And he said to me that I have runner's knee. And I was like, Okay, well, I understand this, not just for runners, like I get that. But even so, my knees like I told this has been half it started to my shoulder. So I don't really know what you're talking about. And I think he told me to wear a brace. And that was it. He definitely didn't give me a medication. He didn't even give me any other kind of possible diagnosis past that. So I was I was pissed off when I left. Fast forward two or three years, my GP sends me to the same guy. And I didn't remember his name, and I probably blocked it. So I didn't realise I was going to the same place. Lo and behold, that interaction repeats itself. Wow. Almost like word for word, you have runner's knee. And I remember saying something to him, like, I don't understand I have been everywhere. But my reaction was not what we were just talking about. I did not rise to the occasion, I did not speak with fervour and again, it doesn't be barking but like,
match him. It's the matching of the energy.
Unknown Speaker 43:15
Yeah, and I should have and honestly, if I went back to that doctor today, not knowing what I know. I think I've actually never thought about this, though. So stay with me for a second, as I'm thinking out loud. I would probably say I understand that the majority of people you get in here with joint pain, if it's not an obvious injury, yes. Maybe it's runner's knee, there's wear and tear on the joints. I get it. This has been my experience. Oh, I also can have disappointment with like my entire history, right, like in detail, and he totally ignored it. And I said, but this has been my experience. These things don't make sense to me. Can you please, either let me know what else we can look into. Or tell me someone else I can because this is not sufficient. This is not. This is I'm sorry, I respect you as a doctor. But in this case, I'm a zebra. I feel very strongly about that. I think a part of it would be let's just pretend I was wrong about this. And I don't have EDS and it was runner's knee. Let's just pretend that was the case. Even so, he needed to respect how I saw my experience, and that this was not enough for me. I and I should have spoken up about this is how I feel. This is what my experiences. I need you to meet me. You decide what you want. You can refer me to someone else. You can give me a test. You can give me something to try. But I need you to be here with me. I need more. What are you going to do about
it? Yeah, and really reminds me exactly to I think this is really critical because what we're mapping for everybody here is the process and the how we're not just telling stories, we're telling stories with a purpose, and the purpose is to help you You find your way in these conversations. So one of the things that I did is my beautiful gastroenterologist retired. And I'd had some pretty strong conversations with him. But he retired, sadly, he had he got melanoma. And so he was just gone. He was, you know, he was in his own health journey. And I got handed over to the new person in the clinic. And she looked at my bloods or something, and she said, Baba, I said, No, if you read the whole file, you'll see that actually, when we do that this happens. And so Peter and I agreed to this. And she said, Well, no, we can't do that. Definitely not. And I knew in that moment, she's not for me. And like she was all in her authority, she had taken up this big new role, she had big shoes to fill. And she wasn't prepared for the robustness of my own personal advocacy, because I'd had the results of all of those things. And so I just said to this relationship isn't going to work between us. So what I'd like is a referral from you to somebody else that you feel, you know, is equally as specialised as you. And that's how I would like to have this relationship transform. Because this, this is not going to work for me, and I actually need something different. And she was very, very confronted, she was very confused as to why that was happening. But it was the appropriate thing to do, because going on with the relationship was just going to be adversarial for the whole process. And in the end, I had been on a clinical committee, as a patient, I'd been on a clinical clinical committee with another gastroenterologist who knew about my experiences as a patient. And I ended up going to him and that relationship is deeply equal, because we had both set inequality on a committee, which we're not going to get with everybody. But I think that it's a good analogy. Everybody is on the committee about the problem. And your role is it's your body, you are still the decision maker, everybody at the committee might be saying this is the only treatment option now. But you get to decide whether you invite other people into the committee, or you get to decide, do I trust this person? And I'm going to do this now.
Unknown Speaker 47:37
Yeah, well, so this, I think we've made this clear, but I just want to say it once and for all. While I feel that it's important to be in a partnership with your doctor, bring empathy to the table on both sides. At the end of the day, if it's not the right relationship, you got to move on. I mean, that's what my dating app equivalent that I created, it was all about, you have to find the right person for you, to the best of your ability, I understand that for certain health care circumstances, there's one doctor or you don't have the option to choose who you want, but as often as you can, it is worth the investment of the time, the money and the energy, especially for certain matters more than others. And if I'm allowed to say so, I think that's true. The therapist, first and foremost, do not just settle for any therapist, that has to be the right person for you. I don't care how much money in time you spend, if they are not doing you justice, or if they are not providing for you in the way that you need. If they're not in support that you need, you got to move on having a bad therapist is a problem.
So yeah, my two cents there. No, and I think because we're talking about the physical and most of us have therapists in the process to process it. So I want to pop in on that. And my thoughts in that having had, you know, therapists for a long period of time, not really necessarily around the physical that that's the case, but really about the emotional experiences and my childhood experiences. I think what is beautiful in terms of that empowered piece is going to a therapist is deeply vulnerable and you're digging into your psyche. So they need to hold it in the most tender way or psyche in their hands. And my I personally I've trained with Marianne Williamson around this and she talks about it is the sacred relationship when you hold somebody's psyche in your hands. And my own personal view about that processes. Your therapists job is always to give the power back to you so that you don't need to see them anymore. Like that's actually the role in the job of the therapy. It's to excavate not so that you're just in a colder sac around it or pinging around trying to work out whether what they've said is the right thing for you, it's actually always giving your power back to you, so that you grow in your power, and you don't need to go anymore. Therapy is a season in your life. And sure, you might go for a season, you might have a year off, two years off. And you might go back, say, when you enter a relationship, or when the relationship breaks down, but it's a season. And if you're in a deep, deep chronic illness process, that season might be a few years to help you navigate that. But it's always so that you grow in your power. Not so you go in dependency with them.
Unknown Speaker 50:41
I actually, so I agree with that. I
Unknown Speaker 50:45
do also think you can have continuous therapeutic relationships. However, that doesn't mean it's still not seasons, they're still giving you or good therapist is still giving you your power back in a certain area. I just feel like there's at least for me, I to a fault, perhaps I always like to grow. And so there's always areas in my life in which I'd like to grow. So they're just it's like continuous seasons. But it is always about how to like my therapist, I love and love her. And she's always about how can I help you make your life more effective? And that's really kind of her mantra, like, how can we make your life more effective and effective, could translate to good, or whatever you want it to be? But it's like, Eva, what do you want to happen in your life, I'm gonna work with you to make sure that happens. And it's kind of continuous and things that I want to happen.
Yeah, and I think I'm going to be really gentle between this and acknowledge that I'm 24 years older, or more than you as well. So therapy was continuous for me till about 35. And then there was a break. And this is very vulnerable to share. But I really want to capture this moment, there comes a time as you age in your woman, particularly if you've had therapy for a long period of time as well, where you realise your therapists retire, or they've been with you for periods of time, or you've changed therapists, but actually now is the time that you're the elder. And there isn't somebody who's going to hold you. I mean, it's so it takes a lot to recognise this personally. But I've had mentors, who were fantastic mentors, when I was 30. And they were 50. And now I'm 51. And they are 7072 73. And they're in a season in their life, even in mentoring, where they really guided me in my 30s. And in my 40s in my career, but I've really come into my own now in my full maturity of power, I'm definitely going to grow, but it's no longer their job to hold the mentor parenting relationship for me, and it's the same therapeutically is what I need is somebody who it's a different relationship, to hold my psyche, as I am already in fullness and navigate that internally. So it's not that I don't have a check, but it's more now what we would call a supervision conversation, where they are looking at the area in which I'm growing. And I actually this is a perfect example, when I worked with Marianne Williamson, personally, so it was a call every week, she's in her 70s, I'm in 50, she has a lot more years of coaching and counselling than be because she's older, and she's been on a world stage and she's held more. And what that relationship did over those three months for me, was holed me into the maturity of her maturity, like it showed me from 50 to 70 what I'm growing into, but that is not a normative experience, necessarily with therapists when that most of all, most are not working when they're 70. And you're 50. But also, her wisdom for me was really about palliative care and hospice and women coming to me with chronic illness, but who might have a terminal diagnosis or who might be in need of palliative care, and how do I hold them in their sovereignty at that point of their life? And so I'm, you know, that was my growth, and that's exactly what happened for me. So we're always growing, but it's really interesting to have this conversation about therapy over a generational conversation. And the final thing I want to say about that is mentors are not just older, they can be older, but mentors for me at the moment at my age It is actually women like you either who are on, you know, this maturity of you in the digital native in what you are now bringing in what you are now seeing in the world as how the word is going to be and the places you are talking about. That's mentoring for me, as well about, oh, this is what's going on in the world now. And you have grown up in a different relationship to personal power necessarily than I have, because we're different generations. And so mentoring works across both ways. And CO mentoring is how I see some of that.
Unknown Speaker 55:36
I definitely agree that mentoring, while age can come into play in certain ways that it doesn't have to it is what do I want to learn from this other person? Not every relationship is going to be lifelong as we know. Yeah. Just any kind of relationship. Yeah, hopefully, certain ones are but not all of
us. Yeah. Yeah. And I think that some of the real reality is not my intention to scare anybody, but there's gonna come a point at which your clinician is going to move states and something's going to happen, and you're gonna go through a breakup, and it may not be of your choosing, as well. But you will find somebody new. And that's part of the patient experience.
Unknown Speaker 56:20
And it's worth it to go through that journey. And actually pay attention to that journey and not just find the the next one on your insurance list. Yeah,
we've covered a lot, either. We've had a really robust and really engaging conversation. I'm curious, is there anything else that you would like to share, we'll put all the links to your instructor and your TED Talk and everything in the notes. But is there anything you would like to share to complete our the discussion that we're having to get them?
Unknown Speaker 56:55
I a message
Unknown Speaker 56:57
that I just like to send to everyone in this world to expand on the the idea of bringing empathy into the doctor's office is to also do that in the rest of your lives. I believe that if we were more empathetic towards ourselves, and those in the world around us that this would be a much better world. And that doesn't mean you have to tolerate everything that people do, you are entitled to not like people are not like certain things that they do, but having empathy for who they are, and what they're going through, or might be going through understanding that they're human, understanding that they all want the same things as you at the end of the day. It's powerful. It's really powerful. I'll give one tip of a, like an act like an exercise that I do. I'll walk down the street and look at random people and think about their lives. Like, they've probably been heartbroken. They've have parents who they've argued with, they've hurt themselves, they've they've had careers or, or lack thereof. And that's been all of it. Like, everybody just has their own life, their own world around them. And it's a great practice for empathy, recognising that everyone has a version of what you have.
Yeah, and I am, I've done this ever since my 20s. So and it's so it's almost unconscious now. But as I walked down the street, and I practised it, my mantra is I love and bless all of who you are. And as I do that, with everybody, now, that's when I cross the road. When I tell women this, I have to think and try and remember what I'm what I'm actually saying they have to find the words because it's so ingrained. But I have found, that creates a relationship and my own energy, and it can make other people less scary. It's not that I'm inviting them home to the tee. It's just whatever is happening. I love and bless all of who you are. And I think that,
Unknown Speaker 59:12
that empathy is,
is the hearts wisdom. It's the hearts wisdom that informs the mind about what to do next. Because often, the mind is trying to override and say, what's the next strategic or how do I get to this outcome, but actually the hearts empathy usually illuminates that far faster than the mind can work out how to do it. And it's a skill for life and everything. You've talked about our life skills, their chronic illness skills, that they're actually skilled
Unknown Speaker 59:42
It's been gorgeous to speak with you either. I'm so thrilled that we've had this time to really have a deep conversation. And I really know that when you and I connect. There's this beautiful robustness to the conversation as well from different perspectives, and we cover a lot of territory with those different perspectives. And I really appreciate you and I want to acknowledge you and all of your wisdom and just the many lives that you have lived and how you have gained that, and the personal work that you have done internally, so that this wisdom is now available to others and they were able to share it with us. So thank you so much either for you.
Unknown Speaker 1:00:27
Thank you. It's,
Unknown Speaker 1:00:28
it's really been an honour. It's been wonderful.
Thanks so much for joining us. If you want to explore connecting and working with me, Michelle, you can chat to me at Michelle irving.com.au/chat. And we can book on a time to connect. And stay tuned for next week's episode where we have another gorgeous, magnificent woman sharing with us about how to navigate chronic illness in an empowered way.
Transcribed by https://otter.ai