Unknown Speaker 0:00
I just want everyone who's listening to this to understand that like none of this is your fault. Never was never will be. And even if the next step you take ends up not working, also not your fault.
Michelle 0:17
Welcome back to the pyjama interviews. This week we're going to talk with Lauren Freedman. Lauren is one of my favourite women in the world to talk to. She's the host of an invisible pod. And it's just so great to talk to a mature woman who knows who she is, what she's about, and how she has navigated this journey with chronic illness is something that you really want to dive into. So stay tuned at the end for this week's exciting announcement. And let's dive in with Lauren. Welcome to the pyjama interviews. Lauren. I'm so excited that we're speaking together.
Unknown Speaker 1:01
Thank you. I'm so happy to be here. And just gorgeous to talk to you again.
Michelle 1:06
Oh, wonderful. So what I want to talk with you about today is firstly, can you share with us your conditions your managing, and then the diagnosis process for you?
Unknown Speaker 1:19
Absolutely. Thanks so much for asking Michelle. Again, it's just a pleasure to be here and to be speaking to you and everyone who's tuning in. So thanks, everyone for taking some time to listen to my story. And I hope that it'll inspire change for others in the way that it has for me as well. But there's sort of two parts to my story. One is mental health diagnoses in my 20s. And then the latter part, which is more recent are the physical diagnoses in my 30s, which include autoimmune disease and sleep disorders. So if we start from the beginning, really, at the age of 2019 20, I was diagnosed with depression, anxiety, and obsessive compulsive disorder. And this was immediately following 911, I, you know, grew up in New York City, and we used to have a view of the Twin Towers from the apartment I grew up in, and my dad watched them come down. So trigger warning there for anyone who's tuning in with 911 trauma, because it's a, it was a really big shift for me, in that I definitely had experienced anxiety and depression and probably symptoms of OCD, or at least related behaviours. Up until that point throughout high school. You know, being an overachiever being very type A, which many of us who deal with chronic disease happen to be. And it's really true, Lauren,
Michelle 2:50
and like I just that every woman I know living with chronic illness has pushed through, and it's not really spoken about. So I'm so pleased, you mentioned that and it's part of your experience in the story, because it's actually very foundational,
Unknown Speaker 3:08
extremely so and I think a lot of it has to do with a lack of personal boundaries. And that's, in my case, it was nobody's fault. I wasn't raised in a household where boundaries were dysfunctional. But I was certainly raised in a culture in which pushing through was the norm. And I think a lot of that's driven by capitalism, and we're seeing a lot of pushback against it now. But it's still not big enough to create a sea change. We're seeing it with COVID as people are going back to work, and you know, some of the restrictions are being lifted. And a lot of that just has to do with being productive again and making money right. So there's a there's a political element there for sure. And it's a recognition now for me that how political our bodies are, you know, we hear about the body politic, well, that's a woman's body, period. Period, quite literally and figuratively. So the OCD really picked up for me. And I want to be clear about this too, because we talk about OCD, and it's become a colloquialism. Oh, my OCD. And for those of us who have experienced the disorder or continue to experience the disorder, it is very different to being organised. It involves a lot of ritual thinking that we can control things, it's usually a response to having a lack of control in our lives somewhere. That was certainly true for me. And I, you know, there's a very clear trigger there in 911, you know, having absolutely no control over the safety of my hometown, my family and being really frightened at the time. And so my response was to think that I had some control over the universe through ritual. And eventually it was getting in the way of my ability to work and be productive. And I was in university at the time and my parents who have always been very much in favour of mental health care. My father has a master's in counselling not that he practices but it means that it's a household that I grew up in where these were very open conversations. And it's interesting because it contrasted really starkly to some of my family in Australia, who you couldn't talk about that stuff at the time. So some of the conversations I was having didn't cross cultures. But I was lucky to grow up in a family where these were normal conversations. And, you know, they said, let's, let's look into therapy, and we found a therapist who specialised and through CBT, or cognitive behavioural therapy over the years, I was able to get back in touch with rationale, and to learn what was actually in my control and what wasn't. And I think for some, there are other approaches, including medication for me, it was the CBT, that made all the difference. But it took a few years, and a wonderful therapist. And the anxiety and depression, again, had existed before that. But through that time, we were working through it as well. And when I hit 2021, the depression got more severe. And eventually, medication was brought up. And it was something that I was very resistant to for many years. And eventually, I tried it. And it made a huge difference. And I've relied very much on my supportive network, which involves my parents and close friends. But especially my mom and dad, with whom I'm very close, and, you know, I'm able to have those frank conversations with them, where my mom can say, you know, you need to be on your meds right now. Or, you know, like, do you feel you're in touch enough with your true self, your truest self.
Michelle 7:06
And this is a very powerful point that you're raising, because not everybody has that level of support. And what's interesting to me, and it really harks back also to Sarah Remy, his experience in a parallel of having these incredibly supportive parents, well educated, who had some expertise in the area of the experience. And even then navigating the system is a little complex. And so I feel very touched. And thank you for sharing with us the actual raw, real truth about the mental health journey, because that's how some people's journey starts as well. And we're, there's an emotional impact, there's a mental journey, but there's an emotional impact of being in a mental health journey, as well as the mental health
Unknown Speaker 7:59
process, or the mind and body are so closely connected. And I think, you know, especially when it comes to a number of chronic diseases, autoimmune disease in particular, we can't really separate cause and effect, you know, we don't exactly know what causes what triggers a lot of these diagnoses that many of the people you're going to be talking to have. And there is often an emotional component, right? You know, if you don't, if you don't have therapy setup, when you get physically ill, you're going to want to, and this is a lesson that I carry through my podcast as well, every single person I've spoken to, almost without exception, has said, If you don't have depression and anxiety, you will at some point, you know, because if whether it starts in your body, and turns into a processing, potentially of trauma in the medical system, or elsewhere, or with your community, or whether it involves loneliness, you know, feeling unsafe in one's body, there is often this mental health component that doesn't get covered. And when we go for medical treatment, our body is put in silos, you go to a brain doctor for your brain, you go to a heart doctor for your heart, and very rarely are medical doctors also taught to draw the correlation to what's going on in the emotional world, and how important it is to be nourishing ourselves emotionally, as we deal with the consequences of our diseases. And so I think that's, I was lucky in that I already faced a lot of that before I got physically ill a decade later, or a decade and a half later, really. And so when it came to being diagnosed with physical illness, I already had this amazing support system setup, but that also took years to establish. So there are many people who get the physical diagnosis and then have to pursue the mental health once they realise that there's this correlation which can sometimes take gears. And it adds on to the heaviness of carrying a lot of this, especially when you don't have a support system built
Michelle 10:08
already. Yeah. And I think what I think's really interesting about where we are now, culturally, is that we're in a process where community is now available. So five years ago, you know, podcasts were just starting. There wasn't a lot of places. Certainly, when I was diagnosed over 15 years ago, there was nowhere I searched, there was nowhere to go. And now, podcasting has I think, really opened up some sense of community. And there are Facebook's for community. But we're on this next way, which you and I are also part of, of what's the next evolution of this. And part of that programmes which are run specifically for women with chronic illness. And part of that also this networking of our relationship with each other. So that we have this connection between what I think of as this really beautiful circle of women who are standing up speaking and sharing very publicly, with a very advocacy approach about the emotional experience of illness.
Unknown Speaker 11:22
Yeah, which is a thing I think that women are particularly qualified to do. You know. And I think a lot of it stems from our desire to create community and to be in communion with others. And how that is very instinctual, with many people who identify as female, which is not to say it precludes those who identify as male, either, it includes everyone, but I do think, because for me, a lot of the community drive actually came out of my work in women's health activism, which was about community. And it was about shouting from the rooftops about what was invisible. And it was that work that taught me how vital it was to be talking about the rest of it, too. And even now, despite the fact that you and I are part of communities and have created communities of our own, because I I created a community of my own because I couldn't find one.
Michelle 12:22
Exactly, exactly. That's how it works.
Unknown Speaker 12:25
Yeah, I still think it's, it's not a perfect science in the sense that we're all working with a limited amount of energy as well. And so I've actually gotten the most out of doing what I do, which is having these conversations, right. And, you know, I kind of wish that everyone could have a podcast the way that you and I do and hold summits, because what immediately happens is that we have conversations with others who are going through similar experiences, things that we can certainly relate to, with their diagnoses. And we see each other. And I get to know people very quickly and very deeply, because I'm asking very deep questions, you know, I kind of skip the small talk. And I've really learned to do that through the work that I do. And I've just started the fourth season of the podcast fourth year, you know, so it's been a number of years in the making, and I've walked away from most every conversation I've had with a new best friend. And that's been revolutionary for me, because I have certain people that I can text and, you know, like people, I regularly say, I love you to who I met because I asked him to be on the show. And I only wish that upon everyone else. You know, because being able to break through those barriers immediately and get to brass tacks, which for us is what is this emotional experience, like? And how do we hold each other's hands through all of this? And how do we see each other? That's what's so central to these experiences, I think.
Michelle 13:58
Yeah. And one of the things that's, you know, we are in this midst of a global pandemic, let's be sort of clear, this is an ongoing experience. And I've been reflecting, it's like, everybody's just onto gear three of having a chronic illness where they're like, oh, okay, just hitting them. And it's also like, Okay, this isn't going away anytime soon. What do I do? And I think what's important about recognising that, especially for those of us who are living with chronic illness is that two things. One, this is adding a layer of strain on top of our experience, because quite frankly, I've been great, you know, travelling COVID I've done well or my skills are up. But what I've reached is the rest of the world used to be fine. So when I felt a little better, I used to be able to go out into the rest of the world and see people and not be too anxious. Now, the rest of the world is not fine, and frankly, I'm ready For the rest of the world to be fine again, because I'm ready for when I feel better to go have a coffee with somebody. So I think it's really important as we map some of these emotional stages to also recognise that the world is going through these stages as well at the moment. And that is having both an emotional experience of being reflected, but also an emotional experience of Gee, it's really frickin heavy when everybody's doing it at the same time.
Unknown Speaker 15:30
And I think that's a message for people who are perfectly able bodied need to take home as well, you know. And it's interesting, because you and I are having this conversation in the wake of a recent revelation from the Director of the CDC here in the US, who talked about, you know, those who are dying from Omicron variant. Most of them are something like 85% of them had four or more comorbidities. So she's has, she's excluding a continually historically excluded group. And valuing the lives of those of us who live with disabilities and chronic illness, because many of us have more than one diagnosis, after those who are able bodied. And so for me, the big distinction here with the pandemic, is just getting people who are able bodied to understand that our lives matter to us. And they've had a glimpse of what it's like to live with chronic illness or disability, but they have only had it temporarily. And so the actual chronic part still isn't totally clear, because it hasn't been years and years, it's only been two years. So that's a really key distinction to you know, in terms of understanding community here.
Michelle 16:52
And I think it's really important from the perspective that we have to find our way with this. So really want to be clear that knowing that external process that the narrative that is on, there are two ways of response to that. The first is what we actually do externally, in our relationships, in our communication in our process with that, and also what we do internally with that process. And we need to find the boundary where we are still in our complete sovereignty, we can see the conversation going on, we have a way to make a step, you know, that has real impact in the world and is sharing but we don't internalise that rage in that fight against with that bias, because internalising our rage and our fight with that makes makes us we're carrying the emotional load when in fact, the emotional load is actually on their growth and their process and their maturity in coming to understand more. And I think that when we're in these conversations we can become so we can shrink under the weight of not feeling supported. When the truth is our own structure can reach and support us to stand what I think of as our sacred ground and have that conversation without internalising the process that we're in.
Unknown Speaker 18:23
I think that's so key. And I love that you bring up words like sacred and sovereignty, because I think it's what gets often left out of the conversation about living with disability and chronic illness. You know, it's more about surviving, the conversations that we hear on larger stages and less about thriving. And my focus in yours has been on the thriving part. And I think it's what has and perhaps it was instinctual on some level for both of us. But I think that the way that you always bring it back to you know, myth has always fascinated me because I think that is such a beautiful lens through which to understand these experiences, it gives us a bigger picture, when you can't see the forest for the trees. It gives us this bigger picture to sort of like zoom out and actually understand that there's much more going on here. And if you want to thrive, you can choose what you carry. But what we carry here is what distinguishes our thriving from our surviving and how we choose to carry it. At this point, I should also probably share the rest of my diagnoses before we get too far into it.
Michelle 19:32
Absolutely, it's so juicy to have the conversation. So thank you. Let's continue from the conversation with the mental health process and the support that you also had. And then this shift into your physical experience.
Unknown Speaker 19:48
Yeah, and this is where it got really interesting for me right. And I say really interesting. Now at the time, it was really dreadful and terrible. But, you know, all the mental health stuff was happening in my teens early 20s He is, and I was fine for about 15 years and around 34, I think the age of 34. I started experiencing rapid cognitive and physical decline, what it looked like for me was brain fog, which is a term that many of us will be familiar with. Really, I was having trouble processing cognitively, I started experiencing joint pain, rapid weight gain. And the biggest thing was this endless fatigue. I didn't really know where the day began and where it ended. And I started calling into work and saying, you know, I need another hour, I need another two hours, some days, I wouldn't get in till 2pm. It's important to note on a certain level, because I know we talked earlier, you know, I mentioned this cause and effect thing, especially with autoimmune disease. You know, sometimes the stress of life can be a contributing factor in the diagnosis of disease. Because if we're not managing our stressors, we may be allowing ourselves to live with a certain level of inflammation. And this mind body connection, if we're stressed in the mind, how does it manifest in the body? Now, I'm not saying that that for me was necessarily the trigger. I'm sure it was a contributing factor, though, because I was working without any boundaries. I was working all hours I was pushing myself through. So it's no surprise to me that under that duress is when I got sick, we often hear stories of individuals who get sick when they're in college or get sick, you know, when they're in high school during exams. And none of that surprises me because it's all connected to hustle culture, which is really toxic. And it's connected to this idea of pushing through and pulling all nighters, none of which is healthy for our bodies and our minds at all. So I, I really began this physical medical journey and was eventually diagnosed with Hashimotos thyroiditis. It's an autoimmune disease of the thyroid that causes hypothyroidism or an underactive thyroid. And it's related to hypothyroidism. But it's distinct in the sense that it is an auto immune inflammation. And that is a lifelong condition. You know, I do hear stories about people reversing it. But that has not happened to me yet. And I would say that, based on the conversations that I have, with others who have Hashimotos, there's a good 75% of people who get diagnosed, and they take a pill, and they're fine. Which is especially frustrating, because that's the culture in which we've been raised. That here's a pill for it. Good luck to you, which removes a certain concentrated care element, and is sometimes also tied to the ego of our care providers. So I was diagnosed with Hashimotos. And it still didn't explain everything. And I experienced gaslighting in the process, which I'm happy to talk about as well, because that really opened my eyes that I'd gone 34 years and not experienced it yet. And then finally did experience it made me wonder what the hell everyone else was going through if that's what happened to me a white woman in her 30s living in the United States. And then yeah, big, big key differences, right. And then I was subsequently diagnosed with obstructive sleep apnea. And, and then only in the last year, I've been diagnosed with idiopathic hypersomnia. With some of the characteristics of narcolepsy, my my sleep disorder experience and my experience, sleep science has been that sleep science is so new. My case is considered subtle, because it's complex, because I am not distinctly one or the other. I'm in this sort of grey area and sleep science hasn't really caught up to me. Yeah. So that's a little bit unsettling.
Michelle 23:57
Could you tell us a little bit of more about those conditions? Because I haven't heard of them? Yeah, happy to.
Unknown Speaker 24:03
So um, sleep apnea. First of all, obstructive sleep apnea means that I stopped breathing in my sleep. So unless I sleep with what is called a CPAP, which provides air pressure, it's a lovely looking mask. And it is not at all the most elegant solution, but it's the solution that we currently have. I may stop breathing in my sleep, and eventually this could cause heart problems, right. So to in order to prevent heart disease in the future. I wear the CPAP when I sleep, and that makes a huge difference. Idiopathic hypersomnia basically is a medical term for you're a sleepy person. It means that you are just fatigued. And when I say fatigued, I don't mean just tired, I mean, functionally exhausted. And it's usually tied to your waking cycle. But that's not always true, but it's the waking cycle that's usually treated with idiopathic hypersomnia and then narcolepsy See, is a diagnosis that has a lot of different characteristics. But it usually is classic narcolepsy involves cataplexy, where, if someone hears something really funny or experiences a strong emotion, they just fall asleep. It just happens out of nowhere and they pass out. And it's they sort of lose control of their limbs they often make their minds may be awake, but their bodies may be asleep, which is really scary. When you're sort of stuck inside your body. It's a bit like Diving Bell and the Butterfly for anyone who's seen that film. And it can involve erratic limb movements in your sleep, then affect your sleep cycle. So the sleep cycle itself is not restful. And it is, there's some kind of mismatch in the brain, right? Where your brain is telling you this very happy thing that happens means we have to sleep now, which may not always be the appropriate response, right? Both conditions are often treated not only with integrative approaches, such as you know, like setting a strict bedtime and making sure your bedroom is very dark, and you have, you know, optimum sleep environment, but also with medications. And the medication piece is the one that I am now experimenting with and looking into to see if there is an answer for me, I tried one medication so far, and it was targeted for my waking cycle and gave me really terrible panic attacks and paranoia. And so I'm loathe to try anything else, because it took me most of the year to come back from that. And this is part of the issue with fail first, and with having a more complex condition where there isn't necessarily a direct correlation between diagnosis and treatment. So that's sort of in a nutshell, what I'm dealing with.
Michelle 26:54
It's just so important to have and be real and raw about and I'd like to take that opportunity together is let's talk about medication. Because it's such a dicey field, there's one, you know, if you're in a diagnosis process where you don't have a diagnosis, then you may not have access to medication. And you may be being seen by doctors or referred who are not as across everything and may look at it as psychosomatic. So that's one level of it, and or you'll take medication that addresses the psychosomatic aspect in their mind, but actually doesn't help you with the physical condition. The second part of that process is that we have to work through our own process of being with medication. And certainly for me, that's been dicey twice, actually. So for my autoimmune condition, when I first took medication, I slept at now to 24 hours a day, and I was holding down a full time job with the health department.
Unknown Speaker 28:08
So that leads me off medication. Right? Yeah.
Michelle 28:13
So when you're sort of working out to be honoured or offered, there is this trial and error process, and there is a emotional process that you go through, where you have to work through what you want your experience to be what you want your relationship to be with medication, and then you have to work out what your actual relationship with medication. Yeah, the best example I have of that is that my vertigo condition is treated with Botox. And it's not treated at the level you would, you know, a beauty filter, you know, it's at a much softer level, but it's study something like 32 needles every three months. And it's super frickin effective. I can tell you, I waited five years to do the Botox because I had this whole thing of like, I'm not having poison injected. I'm not doing this. And thank God, I have a fabulous neurologist who kept going with me gently suggesting but not pushing. And it has made the biggest difference to my wonderful.
Unknown Speaker 29:29
It's I love that you're bringing this up, though, because I think it's about finding that happy medium and understanding that we don't have to reject Western science or Western medicine, just because we've had adverse experiences with it. We don't have to throw the baby out with the bathwater. And I think being able to accept the parts that work for us, take what works for us and leave the rest and also of being able to have access to integrative and functional therapies and practices, being able to take the best of both worlds that work works for us. That, to me is the ticket to success. I firmly believe that anyone who's diagnosed with chronic illness disability, or truly anyone who uses the medical system should have equal access to functional and integrative medicine as they do to traditional. And that's not always the case. Because often the functional and integrative practices are, are price exclusionary, it's harder to get appointments, etc. However, they're being accepted more and more, and Utah
Michelle 30:41
a little bit, can you just talk a little bit about what you mean by functional and integrative medicine.
Unknown Speaker 30:47
So, integrative medicine is about using practices often inspired by are taken from Eastern medicine practices, traditional Chinese medicine, Ayurveda, etc. Being able to find the practices that you can use in tandem with your traditional approaches to medicine. So this may be something like looking at your diet, or looking at how you're managing stress, incorporating meditation, considering acupuncture. Functional Medicine is a root cause approach. So rather than being diagnosed and taking the medicine, you look at the diagnosis and say, Gee, where did that come from? Maybe we can trace it back and heal, what started all of this inflammation cascade in the first place. And that's not always possible. Sometimes the damage is done, and you work with what you've got. But these are approaches that are not encouraged in traditional medical education. But that's beginning to change, we're watching it change, I hope that, you know, by the time I'm older, these will be part of the conversation about medicine in a very general sense, and will be as accepted, but often they're not covered by health insurance here in the US, for example. So they can really create access issues for those who are already struggling to pay mounting medical bills. And these practices tend to be smaller. So the waiting lists are often longer, because fewer people are going into these fields, because they don't necessarily know about them. So you know, it's it's about picking and choosing what works for you if you are able or finding ways to fund that care, which is something we certainly try to cover on the show.
Michelle 32:35
And I think one of the other things that is that there is an emotional journey with each of these pieces. Certainly, I had a experience even just from I was having a liver condition I had given it by that stage six or seven years with traditional medicine, it didn't really work for me. And I went to see a Chinese herbalist. And I said to my specialist, I've given you guys seven years. I'm gonna take six months to go and give that a go. And one of the things about that is that I was actually super clear that I was setting that boundary, I was not asking for permission. And I had a clinician say to me, well, at some point, then Michelle, we might have to part ways. And I looked at that. And in my mind, I thought, yeah, that's not going to happen either. You don't actually mean that. And I didn't integrate it. What I allowed was his normal medical defence mechanism to turn up, I didn't engage with it. I didn't have to fury myself into it. I just said, this is what I'm going to do. And the weird thing that happened is when I went to the herbal Chinese medicine, man, we found that actually my body responded to medicine in the opposite way to what you would expect. So you would expect Jin Singh was she's usually for waking you up, sends me to sleep. And then there was another process, I took him a meal or whatever that sends you to sleep that completely woke me up. So it took a lot of time to work with that. And we got some results. But the reality was that my illness was progressing far faster than we could work with it from the herbalist. And they reached a time where my specialist said, No, you we have to really intervene with you now. And I took that advice because I trusted he wasn't scare mongering me. He was actually saying the results. We've done a biopsy, and now we have to seriously intervene. But it's an emotional process with yourself working out your boundaries here. I mean, one of
Unknown Speaker 34:56
the things you mentioned is time, and that's such a massive fact. there because we live in a world that teaches us that there should be instant gratification. And I believe that when it comes not only to treatment, but also to diagnosis, because I mean, some people wait years, I know people who have endometriosis, for example, the average wait time for a diagnosis is something like seven to 10 years, which is inhumane, to be living with that kind of pain, if you ask me, and that that's connected to issues with medical testing, not including women enough. But when it comes to all of this experience, it's about understanding that everything is a marathon, it's not a sprint. And if we can look at these things, and do that, that zooming out that I was talking about earlier, sort of step back, and look at the forest, rather than the individual trees, learn to see the forest, which is something I still work on every day. That's when we can begin to process some of these experiences. And it's also where the help of a mental health support, particularly with the professional counsellor of some nature, can really make the difference in how you experience and process these emotions. It can help you learn what your emotional triggers are, and how to manage those. And it's also where community where you're talking to others who are like, yeah, it took me seven years, I'm like, Nope, doesn't surprise me, first of all. Second of all, I can sit with you and say, that completely blows. And to be able to be in community with others who can just sit with you and say, yep, that really sucks. And I'm sorry, you had to go through that. And learning how to communicate in the process. That's all part of the emotional processing of this, you know, learning to be able to say, this is what I need now. And being clear about that. Learning to and this is huge learning to listen to our bodies. In this process. It wasn't until I got sick, that I actually listened to my body. I didn't listen to my body for 34 years. And then she told me something was wrong, the alarm bells rang, and I listened. Now I didn't understand her right away. It took me a few years of sitting with her and being in my body. And in the harrowing experiences that followed where I was bed bound and housebound. But when you learn that your body is giving you pain, or giving, and this is not universal, because I'm not saying pain is a wonderful experience at all, by any means. But sometimes you can look at this and go, Okay, this is my body telling me, this hurts for a reason. Let's find out why it hurts. Let's go see the people we need to see, this may take a few weeks, it may take a few months. But I know that something's going on. That's adverse. And certainly, when you have a diagnosis, it often feels like freedom. I know when I got my diagnosis of Hashimotos. I wanted to work that next day. And I said, let's get cake. Because it felt like something to celebrate, because I had the diagnosis. So I knew what the treatment plan was going to be. But you know what, just because you can see a treatment plan in front of you doesn't mean that's the path you'll take.
Michelle 38:26
Just as you did totally such an important point that we need to remember that just because you have a diagnosis, and there's a treatment process, you may not take that treatment plan, it doesn't mean that you don't find other treatment processes by trial and error. And the third thing is it doesn't mean you can say no, and then come back. Like you can actually say no, like I did, and then come back and say I'm ready to give that a go. And one of the most significant parts of my experience, and that is that in those five or six years, the drugs changed. So the drugs that were on offer first, which made me very sick, a new drug got released, that was treating cancer, but it got released for my specific autoimmune condition. And sailing baby, it's good. It's a fit.
Unknown Speaker 39:19
Isn't that amazing? And it's about giving things the time. You know, everything that was coming up for me, as you were talking about that was this experience of sovereignty in the self, you know, learning to listen to the body and go, What do you need bed? What do you need, and then telling everyone else? Because I think sometimes there's a dissonance between the listening to oneself and the communicating. And I think when you find yourself in dire straits, you learned to communicate really quickly. It's like grace under pressure. And knowing that that's a skill that you will probably be strengthening along the way. and being able to come to grips emotionally with doing the thing that scares you. Sometimes whether that's telling someone what you need, or telling someone you don't want something. Yeah, you know, these are really key parts of the experience, I often think and it's taking me back to when I was at university, I had two different professors, two different teachers who gave me two pieces of advice that I still carry with me to this day. And one was to live in the chaos. One was just things are going to be swirling right now just live in it, let it happen, observe, and wait. And the other was that we are subject to change, there's nothing fixed, about who we are, we're allowed to change our opinions, just like a politician is, you know, and we don't have to be self critical about that. Because if we're in our sovereignty, we can very clearly say, well, that's something I used to believe. And I've changed my mind because I have more information now. And I think it's, it's, it's allowing ourselves to live in an information gathering phase, which is sometimes trial and error. And that sucks, I wish that you could get a diagnosis and have the pill and it would be done. But that expectation that's been established by institutionalised medicine is not realistic for those of us who live with lifelong chronic conditions.
Michelle 41:28
And there's a process in that of what I think of as your maturity. It is a process where there are ways that you can help yourself in the maturity. And one of the things that I always say, and we cover this very, very deeply in my programmes, particularly Queen of the underworld, is that this trust with self is that you've got hopes, you've got dreams, you think, Okay, this medication might work. But you don't want to hope too much. And you start to abandon what feels really true for yourself. sort of think that our trust and our intuition should actually always get us to the next right step. Like you should always have your intuition, and then you should just be at the end goal. And I like to remind everybody, that's not how intuition works. Intuition works by this is the problem I've got. Okay, what's the next optimal step? For me?
Unknown Speaker 42:34
What feels right? Yeah.
Michelle 42:36
But it's only your intuition is only going to give you the next step, because it's not going to tell you the next 30 steps because you won't you won't take the first step or you'll be over thinking, but I don't want step five, how do I get to step 10? You know, that that's not how it works. And once we understand that, what is the next optimal step now may not be the next optimal step at step 10. But you can trust yourself by developing this process of what is the next optimal step now and not punishing yourself? Yes.
Unknown Speaker 43:13
Well, not punishing yourself, if maybe it's a misstep. Yeah, I think a lot of this is tied into the concept of toxic positivity, which is one that circulates the wellness world a lot lately, and it's this good vibes only fan, right? You know, that, like we're not allowed to have bad days. Or that it's our fault that something isn't going right. And I think one of the things that you and I try to be clear about with the people that we work with and talk to, is that that's not going to help us get to step two. That's about taking any energy when you have limited energy to blame yourself. In fact, I posted I reposted something from an artist who I've had on the show, Jenny MacGibbon, who's also known as this thing we call recovery, this thing they call recovery. And Jenny lives with MECFS and a couple other things and does wonderful graphic art, and she has this post that says sickness is not a moral failing. So I want to touch on that because I think it's important. Also, you know, that like what we're preaching is not that any of this is your fault. In fact, it's the system's fault in many cases, it's that we're taught to eat meals that are not optimal for human existence. It's that, you know, profit, and capitalism has gotten involved in our food chain, or our education system. You know, so like, there are a million things at play, but a lot of it is systemic, in my opinion, you know, and that's again, where we come back to this body politic that like our existence is political. When we are not the majority group And I just want everyone who's listening to this or watching this to understand that like, none of this is your fault. Never was never will be. And even if the next step you take ends up not working, also not your fault. None of it's your fault. These things happen. And we have to learn to navigate them and do that without abandoning ourselves, but staying true to who we are and forgiving ourselves. And I think that's tied into the emotional processing experience. Because, for me, at least, there was this huge, almost mountain of self forgiveness that I had to look at. And go, can I forgive myself? Can I learn to forgive myself for things that I think I did wrong? Yeah, my illness and naughty violated to be honest with life, you know? And how do we look at those situations and offer compassion? And if we can offer compassion to other people? Can we offer it to ourselves?
Michelle 46:09
I think this is one of the key things because this is the emotional journey. And there's a process in this of understanding where you are in the emotional journey. And as you mentioned, both Sarah Ramey and I are deep in the myth, because we think it just is useful. It is the way to try and map where you are emotionally. But when you're in the chronic illness phase of this, you are being stripped down. That's just what happens is you can't ask yourself to be gung ho or beyond the push or be okay with all the trial processing, when you're actually being stripped down from the life that you had, and the life that you thought you had. And that's a key entry point for the emotional spirits with chronic illness. And I always like to say, but it's not the end of the story. Tiny claps, and
Unknown Speaker 47:16
that's Yeah, okay. The word there is grief. And I believe that it's not discussed enough with regard to diagnosis, treatment, the entire experience of living with a body that has betrayed you. There are some who are born with their bodies like that, right? You know, and there's still a grieving process, because the rest of the world expects you to function like they do. And it is absolutely a grieving process. And you will blame yourself first. It's connected to denial, and the literal stages of grief that we've come to know, really come into play here, you know, there's bargaining, there's denial, there's anger. But eventually, there's also acceptance. And the key for all of that, if you ask me is time, it's just letting it happen, letting it run through you. Just as you're letting whatever these ravages on your body, are to run through you, learning to let the universe process the way it's going to process and understanding that we've been taught that things are supposed to move faster than they really do. And that we can slow down. And that we can rest, which is a radical act in this world, it shouldn't have to be so radical, but that we can rest, and that we can just stop and be sometimes, and just being learning to be with the thing. You know, we hear a lot, especially with regard to discussions about race in America right now about like sitting with your discomfort. And I think that's true. In many circumstances, you know, not to co opt from that movement at all, you know, because that's actually tied into all of this too, because, you know, a black woman in America is gonna have a very different experience of the medical system and diagnosis and treatment than I am, for example. But learning to rest and learning to slow down are huge, and like, sometimes it is going to be uncomfortable and learning to just be with it. Sometimes that's how growth happens.
Michelle 49:37
I think what is useful is that if somebody can give you a map, if you can understand that that's part of the process, then you don't get stuck. There's a difference between allowing and letting something to be and then feeling so stuck, that you're terrified of taking any step. And one of the things that I think helps that Is podcasts, particularly an invisible part because you are so clear about the advocacy position of your work. And so I'm wondering if you might want to share a little bit with us about your work. And what's important you know what you're doing, particularly right now?
Unknown Speaker 50:19
Oh, you're so sweet to ask Thank you very much for the opportunity to talk about that. It's a labour of love. You know, for me, this all started with getting sick, and led me down the rabbit hole, where I realised that there wasn't a community that suited my needs. And that I needed to create one, which many of us ended up doing. Now there are communities, there's yours and mine, there's places like Chronicon community, you know, where people can go, but I, gosh, where to even begin. I mentioned earlier that I came to this work in many ways because of my work in women's health activism. And I think activism is the key term there. I came to multiple realisations that made me understand that being quiet wasn't an option for me. And that I, if I couldn't find it out there, I should probably stand on a mountain and shout about it. And what changed all of that, for me was stories, it was hearing from other people what they were going through, and having the honour and gift of being able to hit record on those conversations and be able to share them with people. It started as part of my healing process talking to other people was helping me heal, it was helping me put my experience into perspective. And then I wanted to keep offering that to others, because I recognised how vital that was in my own healing process, which is ongoing to this day, when you really understand what healing is, you realise you're going to spend the rest of your life doing it. And I don't mean that in a bad way, I mean that it's connected to growth. So that was a huge part of it. But then in this last year, I have also deepened my ability to support others in my community by training as a health coach. And this has been particularly important for me, because there have been so many practices that I've pursued, looking at myself as a whole person. And that have led to revelations about my own healing and my own treatment plan. And what this is going to look like long term, and that every day is about healing everyday is about making the choice to live my life like a cleanse, if you will. Not that it is you know, but finding joy, and being able to process the darkness underneath so that I can find the light. And I want to be able to do that for others and facilitate that for others. And it was happening with the conversations that I was having already. And now it's also something that I can offer to people who don't necessarily want to share their story publicly, but need someone to talk to because the conversations I have on the show are conversations that a practitioner should be having in their first meeting with a patient. Totally great practitioner will ask for a life story and a health history. And I'll never forget a practitioner who I sat down with one of the first integrative practitioners I met who said, so you were born and I sort of stopped and gobsmacked because no one had ever asked me. Yeah. And like I'm gonna get emotional talking about it. Because it was the first time I'd felt that someone wanted to listen to me and was invested in my healing and was invested in who I am. She's now a doctor who I hug. Hello. You know, she's been on the show herself to. So I really believe that talking. The talking here is something we've heard about for generations. But I believe that talking sharing, and tuning in listening actively. These are all skills that that if you're listening to your body, they'll start to come naturally. And I was very lucky that I was in the position to do that. And I'm so fortunate to do this work, but it has a political aspect to and I think if I'm being true to myself, anything that I do with my life has to have that it has to have the ability to leverage story to change the way we see the world. And I believe that these stories have the power to do that.
Michelle 54:39
Yeah. And that's the whole reason for me of creating that's why we're in pyjamas. That's why it's the pyjama interviews because that is part of the experience of living with chronic illness. But that doesn't mean that you can't still have that deeply empowered way of living. And one of the things that I think picks up with this, Lauren is that there's the story that we've inherited culturally, there's the story that we have from family, not everybody has the, you know, the beautiful openness that clearly your parents have with you. But there's an ancestral story. And then you can't just say, Well, I'm ignoring all that, I'm going to go with this new story, which is, what toxic positivity would have you believe just change your thinking. But there is a process where you can just gently unpack that story to create the new. And certainly, for me, it's actually one of the foundations of the empowerment process. And in Queens of the underworld, we spend four weeks, that's all we spend, we spend two weeks on the old story two weeks on the new, but what happens transformation only when you're able to breach yourself in your own story, and find that ground is the foundation for a completely different relationship with the world.
Unknown Speaker 56:05
Yeah, and a lot of that is about recognising your sovereignty, it's about absolutely situation and saying, I'm not going to put up with things in this way anymore. And I'm the one driving the ship. One of my friends put it beautifully, like, I'm the CEO of me, I hire and fire accordingly. Even the concept for me of not seeing a doctor, again, like firing a doctor, prior to getting sick was not on my radar, you know, but being empowered to do that, particularly in seeking community or, you know, coming to coaches like you and I, when you're in a position where maybe you don't have that at home, is it can be it can make the difference between thriving and surviving, which is what we started the interview talking about, you know. And I really believe that that kind of transformation is possible, if we only let ourselves believe that it can be. And, you know, we can't guarantee that someone's going to heal and turn their lives around and four weeks or however long, you know, but it's about investing in oneself in the long term in terms of providing the right kind of support and care and learning to buoy ourselves up when we need that extra lift and recognising that we are sovereign. It really is. And that's the empowerment piece. And then how
Michelle 57:39
to do that. Because it's like, okay, I'm sovereign. And then there's like, but what do I actually do with the doctor in that process? And the Nirvana's nuts and bolts, yeah, the nervous system is growing. And that's what I really want. If there's one thing we take away from today, everything that you and I have talked about, is about your nervous system, shifting, shaping and growing. And that is a tender process, which comes to the you can't push your nervous system you can over stretch it like in a yoga pose, you can over stretch your muscle. And then you have to go back and integrate it because you're actually then, you know, you've you've gone too far, emotionally or too pushed emotionally. But when you've got something that moves, you gently, just remember, you're actually expanding your nervous system. And that's actually what's going on. And that's
Unknown Speaker 58:37
neuroplasticity, actually, I mean, it's interesting, because like some of the concepts that you and I have talked about today might sound like quackery to someone who's trying to find the fault in energy medicine, for example. But you know, things like generational trauma, integrative and functional medicine, neuroplasticity, connecting to our nervous systems, you know, there are numerous studies that actually support the fact that this work is vital to ongoing healing, culturally and individually. And, you know, I think part of that and part of the learning curve there for those who are even more interested in understanding this work more deeply, is also in understanding how to source information and know what promises are real and what promises are, you know, the kinds of quackery, right that like, that often comes up in wellness circles. And, you know, being able to think critically is it requires an education in how to navigate medical institutions. And that's the kind of work that you and I do as well with how, you know, here's how you communicate here. Here's how you hire a doctor. Here are the questions you need to ask. Here's what you can bring with you. Here's who you can bring with you. You know, so being able to plug into that self advocacy, real, you know, thing there is for me about, it's all of those things, right? It's about understanding past, present and future. Yeah, within the context of the real science and the real deep understanding of oneself.
Michelle 1:00:22
And I think one of the things that is happening culturally, at the moment is that the wellness industry looks like the only place we could go. And that, you know, it's a little helpful. Certainly, I did you know, the passionate meditation, it's one of the foundational principles, I would argue it's not necessarily part of the wellness industry. So there are things that have been co opted. But the message of the wellness industry is a whole lot of B S, for you living with chronic illness, you cannot change your condition, simply by the meditation or the mantra, you can sit on the lotus leaf as long as you like, but that is not going to change it. And what you and I are talking about is the lived experience of the actual genuine wellness like, of how to have the wellness with the chronic illness process. And that's why these conversations are so important, because we've got the nuances. We're not gonna say to you, so here are your mantras for the week, and you've been attacking yourself with self criticism. So have you thought about how, you know, maybe drinking some more green juice might help you with those thoughts?
Unknown Speaker 1:01:40
Yeah, absolutely. I couldn't agree more. And a big part of the work that I do as a health coach, too, is about recognising bio individuality, what works for you might not work for me, you know? And while there are certain things, right, that might work for a larger group, there will always be exceptions to the rule. So how do we work with that? How do we look at an individual and help them find their way to thriving through all of this stuff, and it is about waking up every day and making the conscious choice? To focus on what's best for you totally, often is also what's best for your community? FYI,
Michelle 1:02:17
actually is, it's also in relationships. It's just about making those bridges. So it's been a big discussion, Lauren, we've gotten a
Unknown Speaker 1:02:27
lot of places where I'm like, can we keep going about so many of this, but you know, this is the thing you and I get fired up about this stuff? You know? Yeah, why we do what we do.
Michelle 1:02:38
Thank you so much for firstly, being real with us, for telling us the raw experience for the wisdom that you've gathered in the process. But also for being willing to share so much with us and had these conversations. I knew the first time we met, and we met over a zoom podcast process is like, Oh, my God, Lauren, she's my girl. She's in my hood. Yep,
Unknown Speaker 1:03:07
absolutely. I couldn't agree more. I've said that a lot today. How much I agree, but I mean, truly, it's wonderful. And this is why these conversations are so vital, right? Find a person you can have this kind of conversation with, because I promise you, they're out there. Yes, there's more than one of them. And you know, to be able to have these kinds of allies in this ongoing experience, and to be able to have the good days and the bad days with a community of people who are here to lift you up or to just told you where you are really, and meet you where you are, is what's so important to us. And and it is about keeping it real. And it is about finding your own unique way of experiencing whatever you're going through.
Michelle 1:03:52
And one of the things in that is that bringing the summit together, bringing women into the pyjama interviews, there are a number of us now out there, we're really the first wave we've really worked things out and we're in community together. And the reason we're in community together is because 66 million women in the US are living with chronic illness. Okay? So if you're listening here, it could be that Lauren's the right person for you to go be with, it could be that my programmes are the right programme for you. It could be that you do one bid and you do another shop around for the thing that works for you. There are enough of us now out there and you can hear that we're in connection with each other. So I want to be super clear with you. There is not a competition in this space between women who are really in the strength and the sovereignty of the skills that they can share and the wisdom that they can bring to your life. We are in community you are in our community listening to this you We're in our community. With us in this experience,
Unknown Speaker 1:05:07
beautifully said, Yeah, that's one of the great things about this community is that it's one of the more inclusive communities that I've found myself in. And it also, in many cases, really honours our intersectional identities. Yeah. And being able to do that is a rare thing, while also figuring things out along the way, and that it's so beautiful that we're able to have these relationships where there may be an overlap in the work we're doing. But I haven't found myself in competition with anyone in this community, because we're all trying to do the same
Michelle 1:05:42
thing. And we love each other. Yeah, we love each other. We are connected and we want you to be connected to Yeah. Thank you so much, Laura. And this was a very fun discussion. I really lovely. Really appreciate your time. Oh,
Unknown Speaker 1:05:59
I appreciate you for putting all of this together. It's so beautiful to have an opportunity to have conversations like this where we do skip the small talk and get straight into
Michelle 1:06:07
it. So you'll find all of Lauren's links and all of her connections in the webpage here for the summit and do go over and give her a follow at invisible pod. Thank you.
Unknown Speaker 1:06:19
Thank you so much, Michelle, this has been gorgeous.
Michelle 1:06:25
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
