Hello, everyone. Welcome to this first episode of The pyjama interviews. I'm your host, Michelle Irving. So a little about me, I've lived with chronic illness for the last 15 years. I've also been bed bound twice in the last decade. And I know what it takes the grid, the vulnerability and the tenacity to wake up every day, and find your way through the experiences we're all having. And I'm on a mission to de shame that and really transform our conversations about illness. I'm talking with some amazing guests who have faced the deep emotional terrain, just like you and have found ways to carve out a life filled with love, meaningful work, and deep personal power. And as a very brand new podcast. If you're joining me, I want to celebrate you. So stay tuned at the end for how to win a prize out of all of my programmes. Now, let's dive in with our first guest, ABC broadcaster Jacinto Parsons,
such a centre, thank you so much for joining me, what I want to share with our listeners is that Jacinta is an Australian broadcaster. And she's also a writer and has written an amazingly fantastic book called unseen, which is a must read for any woman experiencing chronic illness because she captures the journey, the depth, the power, and the role of experience. So thank you so much for joining us to centre, I thank you for those lovely words to kick us off. That's very kind and it means a lot. Thank you. Yeah, it's it really was amazing for me to read your book. And it really mapped
a lot of my own experience. So I'm wondering if you could share with us Firstly, what your condition is. And then a little bit about the research into illness that you did for your book.
My condition is Crohn's disease, and I guess I was diagnosed in my early 20s. With that bowel disease, the book, and the research that ideally into chronic illness sort of took me in all sorts of directions, as illness does, in fact, you know, looking into all the facets of what we experience when we have illness because of course, it's not certainly just body but have a huge amount of spiritual and it's mind, its societal, its preconceived ideas about what illnesses, and its structural how illness interfaces, in a structured world that hasn't necessarily been to kind to women, or to people in diverse, or from minority groups. So I went into all sorts of directions and the research and I found it illuminating, but probably very confirming to an experience that I had had. And I think in writing the book and and sharing it even with you today, it's always affirming and surprising and wonderful to know that our micro stories, our experiences as individuals have so much commonality right across the illness spectrum, with other people and particularly other women experiencing chronic illness. Yeah. And one of the things that, you know, I've suddenly discovered in my own work, and you so clearly articulate is that illnesses are normal experience. And you did have a bit of a dive into how it is normal, but how it's been treated by society. And I wonder if you want to just capture for us what you found in that process, because we live in bodies, but the lived experiences as if there's something wrong with being ill, it is fascinating when you go back in history and look at the treatment of illness, you know, you can see a whole lot of evidence around this notion that evil has in you know, in some way been encountered by the human, that it's a punishment, that the suffering is indicative of a bad life. And so those very old ideas that were you know, around sort of 16th century etc. And obviously had a lot of mythology around them as well and, and treatments that related to that kind of idea of being, you know, taken over by evil spirits has actually strangely still been part of our unconscious I think in a lot of ways
I think when we're unwell and we don't feel well, and our body doesn't feel good, there's an immediate
internal reaction to that about all I'm not good myself. And I think there is a lot of things that come off that in terms of shame, and responsibility and guilt around illness that does have an interesting bedrock in the history of how illness has been treated over, you know, hundreds and hundreds of years. And it's also something for me about living in a society that's so individualistic. So
it's a character flaw is something that I've seen a lot of women feel.
There's the ways in which we apologise for being unwell. And we don't seem to get in our reactions from family and friends. It takes like a lot of Conscious Discipline to speak back to that. And I'm wondering if you found that in your own experience, just in terms of getting diagnosed, that was quite a long journey for you? Yeah, I think exactly what you've just said around the apologising, the feeling that you're a burden, the experience of illness as being something other than what we should be. When, you know, as you rightly point out that the beginning of this, it's a very natural state for the human condition to experience illness, it's more natural than not experiencing illness, but that we still other It is a very curious thing. And I think, you know, along that continuum of experience or feeling of it is the notion of diagnosis. I think, because we name we categorise, we put something in a very neat clinical box. And I think that's possibly the first step along the road that can be very confronting for us. Because whilst the first point of diagnosis can feel almost exhilarating for some people, because you have an answer, for what has been an experience, in some ways, it supersedes the experience, and you feel like you have to comply or understand yourself in very finite ways. The way you explain yourself to the world outside, you can be very simplistic, I have diabetes, I have Crohn's disease, I have a number of conditions. And in that way, you're reduced to how someone might understand you as well. Oh, yeah, my sister has that or I know somebody or I've, I've heard about that before. Yeah, but really, the individual aspect of us as as bodies as humans, as conditions as cultural as gendered means that our experience of illness while has so much commonality that we mentioned before, is also very much embodied in us in ways that is often very hard to give a shorthand description to. So while it's, in some ways, liberating to be diagnosed, it also has a whole lot of complexity to it that I think sometimes we find when we've travelled on that pathway for some time. But you mentioned the diagnosis process. And of course, we have a range of experiences with diagnosis, sometimes it's quick and simple. And other times, it may never ever happen. And I think it's a it's a very complex thing to interface with in the health world, because it's science, but it's life and too, and it's the human trying to find a way to explain themselves in the world.
I think there's also I mean, there's a beautiful part in the book where you describe or being in hospital, and clinicians being around you and this sort of dislocation from the body.
You know, I'm not sure if he's these words, but for me, it's sort of that sense of body as specimen rather than body as leaved home of a human being and our psyche. Could you share a little more about how that was for you, or what you learned through this process of
coming back to being in relationship with your body? In many ways? It's such a, it's such an extensive thing to talk about. But absolutely, when you say specimen, I think I described in the book a moment, and it's only one of so many moments that you feel like a specimen when you are going through a health
situation in a hospital setting and a health setting pop, probably. I felt like I was on a petri dish. And, you know, I'd have student doctors come through and examine me. And it was a really particular time of acknowledging that space that we share. As you mentioned beautifully there. You know, your body is as home and your body as you know, as everything is experienced as live
Since pain is grief, as love as all the things that your body is, when it's viewed through a health prism, and it's sometimes very difficult to maintain that connection with your body as all of those wonderful and
extensive experiences, because it is simplified, again, to biology, when you're being viewed for the prism of health, and you were neglected in those other ways of who you are. And I think for a long time for me, I had to adopt that clinical perspective of my body. And I had to think for a number of reasons, because the body was a painful place for me to be, I had to see it through the prism of science and to disassociate from it, because I no longer saw it as a safe home or a beautiful home or a nice place to be. But also, I think the health environment creates a space where you almost are forced is not the right word. Because I don't mean that there's any intention here to disassociate you, but because it is such a can be such a traumatic physical experience, to understand it in anything other than other over there, I think can be very hard. And I used to imagine my body was somewhere else, when they would describe what was happening or what had happened, I would imagine that it was happening away from me, because I couldn't understand it was me. Yeah, this is something that I think we don't often speak about, and you sort of don't know, and work it out, actually two quite a long way down the track. And that is that the physical experience is having a journey and trying to move itself along and heal or manage your condition. But the emotional experiences are attended to. And it is both existential in terms of who am I and what is my existence, and what is real, and what's meaningful to me. But it's also that having the physical experiences distressing. And then there's the distress of everybody else, or they're trying to manage you at the same time. And you seem to have found something that I had never heard of, or I had thought about in a different way. But in your research, you talked about different stages and getting to a stage of enrichment. I'm just wondering if you had not heard about that, and whether you'd sort of map that out a little for us? Well, it and same as me, I hadn't heard about it, but I guess I experienced it. And when you were talking, then I was thinking about that lack of synergy of healing? We do it seemingly. And of course, everyone's very different. But for me, it certainly was my physical and my mental healing had to happen at different stages, because both required such urgent attention, you know, in some ways, but yeah, that there are different stages of how we heal. And I guess it also follows that line of acceptance as well, how we experience the body and the health condition in the way that we understand it. Because, as you say, and rightly so it's such a fascination to to see ourselves as the fragile mortal experience that we are, but still hope to function with us. How do you go on when you really, really understand mortality? People often when you're confronted with your physical fragility, and so I think the synergy, the notion of that the that idea is really around the sense that you come to that beautiful acceptance with mind and body. But it's a process, isn't it? And it's not, it's certainly an individual experience, and it needs to be on it in that way, I think.
And for you, I mean,
from listening to your experience, through your own words, this was a lot of your 20s. And there was this grief of the things in the life that you wanted to have. And I'm wondering, how did you work through that and how did you even just work with the grief even if you emotionally processed it later? Because it looks to me like the book was also part of this reconnection with that grief? Yeah, it's very astute. I love your observations, because they obviously come as well from a lived experience of this because you're picking up some beautiful parts. The writing of the book felt loving, it felt like a very loving, mothering of the experience. It felt like a language.
It felt like a love letter. I've said that before, but I mean it in the way that I didn't talk about the wonderful aspects of illness because I felt like this book had to be written for the grief.
The anger and the pain because I feel like that needs to have space to be without the pressure of how we
often come through these in in stronger and better ways. But yeah, I felt a beautiful experience. But going through it in my 20s managing grief was very visceral, and it was anger, and it was fear. And it was hitting the bottom of the pool is how I feel it is, you know, when you, you've lived your life, and I had up until my point of exposure to illness in the way that I was have been quite frightened, you know, I didn't take chances, I didn't do things in the world. And then going through the experience of mortality and grief and your body and the change, and you losing the dreams that you may have had, or the expectations of what you should be doing at that point, meant that I touched the bottom. And I, in some ways in a similar way, it was an exhilaration, because it was like, Oh, that's the bottom. Okay. And when you realise the strength that you have, when you hit the bottom, and it certainly wasn't, you know, I was a mess. I was angry and grieving and lost. And I didn't know who I was anymore, and I'd lost my identity that I had constructed.
But, you know, it's speaking to people who understand this, you know, once you have that experience, then what you have is this opportunity of
beginning in some movies. And as you're talking about that now, I'm just wondering,
what was it like, in the bottom in the grief?
What was it like for you on a daily basis? Like what what did it feel like? How can we capture that real wisdom and knowledge of this is really true. And this is what it feels like, each week felt to me lost, it felt to me.
Like I didn't want to be loved anymore, because they loved was a painful experience, because I didn't feel like I deserved it. And I didn't feel like I had anything to give anyone anymore. Because the person I thought I was was gone. But the illusion of self is exposed when you are stripped the way you are often with illness. And in all sorts of ways in our life. This happens to us, I suppose. But for me, it was in this process.
Where it is a daily struggle to feel like you can get through, you know, you're angry. I had a lot of anger and a lot of resentment around me. And I think I felt anger toward the love. And I felt angry.
Toward myself, I didn't love me. And I shut out. any hope for that. I was like, Okay, get on with it. Yeah, move on. Love is not for you, my friend. You know, you need to work out how you live in the world. And I never got to the point where I didn't want to live in the world. But I definitely got to the point where all right, how do you shut out and just get on with it in a way that will not cause you the amount of pain that you're currently in? Because the pain was extensive? on a on a psychological level? Yeah. Yeah, really.
It really, this is where I saw resonated in your book. And for me,
I came to that experience twice. So I came to it at 35 with a diagnosis. But I also came to it at that time where I was reading mythology. And I really found comfort in the story of polyphony who's Queen of the underworld, and she's stripped down and taken to the underworld, but she goes down a maiden and she comes up a queen. And that to me was really potent. So even in those moments, I found that they were feminine stories, and they were myths, and they were ways to map the psychological territory. And for me this your book is part of that conversation and the conversation we're having is this is the normal process for your psyche when you are faced with this level of experience. And you will find it. Yeah, I think
for me and I have heard this before as well. There was a an absolutely Stark moment of choice that I felt I was presented with and it was you can stay down here.
Or you have to find a way to move up and no one else is going to take you there and nothing else will hold you. And that's got to be okay because for a long time I was angry that there was not the comfort that I needed around me.
And it was a hard thing to accept that the people I wanted to comfort and change this from they couldn't do it.
So it took a lot for me to get to that space of forgiveness, I think,
for the experience and for the people around me and for myself. Yeah, I really resonate with that wanting other people to fix it. I remember having this life threatening illness moment and realising, no, but if I died, nobody's coming with me.
And going into a dying phase, as we will all do, is on your own, in many ways, psychologically, it's you and that moment, and it's very stark when you're young, I think, too. So
I'm wondering if you could talk about then how your life moved forward, because you've had diagnosis, you're in treatment, you've got your up and down, like, it wasn't just I'm better, there was like relapse and reflex and the psyche has to continue to confront it. And how did you find a way through for yourself to date,
there's a lot in that I think the chronic aspect of illness is such a hard one for, for the human to compute the never ending aspect of a cycle of complexity and challenge, because we're very much attuned to victory, overcome, and we're really surrounded by survival stories of I did this, you know, look at me, but I think I write in the book, there's no point necessarily with chronic illness. So you can have a party and say, check it out, you know, because, and I think that's also what's heartbreaking sometimes is, sometimes you do feel like you got to the top and you're going down the other side, and then bang, something will happen, again, to reinstate and reconfirm your kind of health status. So it was really a very profound experience for me. And again, I haven't written about it, but is the everything of who I am, the experience that I had with the illness,
me hitting the bottom, and finding that I had to do something was all around acceptance. And we also hear this a lot. But the acceptance was a profound experience of finding the love and the light in the space that I had previously ignored. You know, if I can't walk, if I can't get out of it, Where is it? Where can I find it, because I can't live in this pain anymore. And once I confronted the hitting the bottom of the pool, you know, like, knowing that there is a bottom and I'd hit it, and I hadn't, and I lost the fear of it. It helped me realise that we do a lot of life avoiding wanting to go through things that I was going through. Yeah, so I tried to remain present in the experience of the pain to know that I could do it made very conscious, acknowledged acknowledgments of the fact that the pain was there, but I was okay. It's okay. And accepting that. And then abandoning any of the preconceptions I think I had before I got sick around who I should be the pressure ideas, I was stripped bare. And in that way, it enabled me to not be anybody. I could be. But I could be anybody. You know, I could be anything, what would I be? And so I asked myself that question, Who are you now? Like, what? What are you now? If you have nothing left? What would you be? And so I answered that question. And I realised that that question is answered, not in big stories of ourselves, but in tiny ones, you know, it's making eye contact with the people that you connect with every day. It's finding the love in small things. But it's also seeing the joy in trying to find your space in the world as well in the small ways, not the big ways. And every small step is part of a bigger thing. So I mean, it's a bit.
But it's the very, very truth of how I have maintained my life since I really hit the bottom has been this wonderful understanding that, Oh, this is a bit of a game in a way. And I realised that before.
And I think the celebration, I mean, it's so true. The things that I celebrate in my life and want to celebrate, and say with great, you know, I spent six months being bed bound and couldn't walk. And when people say, how are you? It's like, I can walk like, everything is amazing. It's, wow, I can walk.
you want to have a party, but I also find that there are the external relationships who want you to be normatively well, or what they think of as well. And there's a glossing over
What you think is the amazing achievement? For the advice the frame about who you should be as a person should be moving to get well? And I'm wondering,
yeah, in your relationships? How did that work for you? Did you need that other people's desires and dreams for you and your health? And what you should be doing? And how did you manage it? a year. And I think it's a very well travelled experience for people who are unwell and chronically unwell. Because if the status of your health, you know, isn't changing in perpetuity, can say that word, it's very difficult for people around you to hold that. And I think I see why I came to with that is kind of a compassion for that, I think it is really hard. And I don't know if that's, if that's right. But for me, it was sort of understanding the limitations of the experiences of people around me and not being crossed with them for that, understanding that they have a desire for it to be okay. And for it not to be okay. It's difficult to hold. It is an emotional experience for the people around you to see pain, it's very hard, if you have no control of that pain, to be witness to it. For a time, when you don't know where it's going to end, you are out of control and a lot of ways and I think, in a compassionate I people are trying to make it okay in the way that they can control. So I'll tell you what to do. You do what I say, you're good Sheriff get better again. So I guess in that way, it's not a it's not a happy story. But there's a great isolation, I think that comes about because of that, sometimes inability of people around you to hold you in the way that that you need. And so I think in in a lot of ways, and I'm not advocating for this, but I found a way to manage myself, you know, and to do it without the anger that I again, you know, feeling about it just to sort of go Okay, well,
people can't get it, but they do Love me. Yeah, maybe that's enough. Yeah, I think that's some, that's a discipline, that's a real psychological and emotional discipline. Yeah. And I think of it as badass boundaries. The one thing illness will teach you as it will read, you have to get boundaries, and you have to get them in your relationships fast. Because you don't have the emotional energy to for want to fuck around with people for a long period of time. So over your experience, did you have ways of discerning about who you told watch, and you know, which friends or relationships you spent time in? I'm just wondering, how did you work some of that out for your sign up quickly? Don't you whether where your boundaries are, you know, I did find myself. And it's not healthy, but it's just the truth? I would say a lot of it on my own. But yes, it's happening, but I'm fine. But I'm fine. I don't need you to tell me how to do it. Well, yeah. But you know, your distance, in some ways in that way, because your vulnerability is really not
able to find a home. So, you know, I did snap at a couple of friends when they would give me advice. And it was shocking, sometimes that how the rage would be quite big very quickly. And they'd be like, Hey, I just said, maybe you should try smoothies. And it's like, but you're, you know, because of that enormous pain of of separation from people and understanding. It's actually the really hard thing to do for a long period of time is to hear that stuff from other people when really, the complexity and the understanding of this is so removed. But I guess I just, I found other ways to connect, I think and I think sometimes we do have experiences that isolate us, but that the connection is still really important. You outside of your illness is still important in some ways. Yeah, it's a hard one. I don't I don't know the right answer to it. Because I think we are still learning about this. Society wide. And I think this is part of the book is hoping that people will read it and go Oh, right. Yeah. You know, or, you know, that haven't had illness experience. Yeah. Yeah, I think it's, um, it's very topical. There's a lot more conversation in the last 18 months about chronic illness than I've ever seen. And for me, like, I think society's having the experience that we've been having for a decade or more and, and people sort of say, oh, how are you going? 2020 was tough. And I'm like, No, 2020 was normal.
It was better.
I spoke to said, you know, like, now people do what I do every day and it's brilliant because you know, everyone's at home, so I'm not missing out on anything.
Yeah, I know. And I think I hope we'll become a more compassionate society. I mean, all of us have got areas that we've got a greater compassion and understanding with other people. And hopefully the pandemic gave us an opportunity to, to walk in other shoes for a little bit that will stop us maybe being judgmental or quick to dismiss, you know, the others experience. Yeah, and you suddenly see everybody wanting it to be over quickly, and sort of that slow realisation. This is gonna go on for a while.
One of the things that intrigued me, in your experience was meaningful work, finding your way and navigating work. And I'm wondering if you might share with us, you know, how that went for you what you wanted? And then how you actually have come into a very public life. In the middle of this experience? Yeah, it's quite, it's directly related to the experience it really us. And again, I don't talk about this that much, because, I don't know. But um,
you know, in asking myself, What am I and who am I? And rather than feeling like everything was completely for other people, what before I got sick, I just didn't think I could do anything, you know. And I think what getting sick shows you is, well, that life isn't as you think it is, it showed me that and that everything is, is small moments of grace, if I could say that, you know, small moments. And so I did a lot of jobs in my life. And when you're unwell you're doing anything you can if you can do something from bed you do if you can do it, just for a couple of hours, like I was a fairy at a party with a colostomy bag, you know, under my tutu, you know, like,
the amount of jobs that I have done in my life to get by and done them when I'm being so sick has been quite amazing. But just small steps, I think, you know, just
what is it that you love? What is it that you love, but also that everything that you do, you can bring that to you know, I have tested myself with that theory in many jobs to go if I love this, if I bring absolutely my my love to it, can I enjoyed it in a different way. And I think he can, but it's a really, really, really challenging exposing, confronting part of being unwell is that you and your hopes and dreams for work can be completely sideswiped. For me, the sideswiping meant that I'm not a teacher now, because that's what I was doing. And so I found my way slowly into radio, which is so curious, because it's sort of the public dream. And it's the path that you sort of ended up taking because of your experience, which is wild in the process. It is, it is, but it was like, um, you know, I sort of, Okay, this is really getting into it, but I had in my mind, what after I got sick that I would do my life like that. So tell me more about what you're showing us. So just my hands around, and I thought, Okay, you've, you've lived so far until this moment of illness with you know, this kind of like, I'm going to understand, yeah, ready to fight pity and just like, you know, frightened. And so instead, you know, I'm just going to see what the world is and say, yes, you know, so I just, I opened myself up to experiences that also came my way, all that sort of stuff, but just said yes. And get out with
the knowledge of what illness gave me, which was, you know, things change and move and you've got no say, sit in and see, see where you can go kind of thing. Yeah, yeah, I'd really like to touch into this, because we don't talk about it very often.
But for me, it is something that I really work with and share is that meaningful work has a serendipity of coming to you. And the onus actually, for me and for others, opens up your intuitive system, it actually means that you've got a pretty good radar of what feels true and can move towards and what feels not. That's, that's just gonna exhaust me. So you did very briefly mentioned at the beginning of this the spiritual aspects of illness. And I'm just wondering, is there anything you'd like to in your own experience share? Because to me, it can be a portal into more? Well, yeah, I think. Absolutely. Okay. So just from my perspective, certainly not speaking globally, which I think the book does, in a way is trying to look at it more broadly, but for me,
With that whole identity being removed, when you become unwell, you lose your job, you lose your university, you lose your status as a human in a way that you have constructed it up until that point. And so, for me, it was once you've lost all of those things, who are you? And in the asking of who you are, and in the facing of fear, I realised that my fear was, you know, mortality, I'm scared of dying, if we're really going to talk about it, you know, so, that takes you into a space of all what is this? And who am I? And what does it mean? And I think, for me, it was a pretty unavoidable experience to go through and investigate that as a spiritual question. You know, what, what are we, you know, if we if we don't have the trappings of the world to keep us busy? Yes, the loaned and quiet for a lot of the time, is there possibly joy? And if there is, what is that, if if we can't make it, if we can't go to work and get it, if we can't eat it, if we can't do the things that we would normally do to create it? What is it? And I think, in some ways, I found, you know, I meditated a lot through that time, I read a lot, a lot of stuff, I investigated a lot of areas, it was my most
beautiful time, because there was nothing to occupy me in any other way. There was no other human experience to have at work where people are annoying, you or, you know, there was such solitude that I was really able to investigate, I investigated pain, I really challenged all the things that I'd gone through, because finally I'd had some space to think or what is pain? What am I doing? Why, how am I holding it? What does it mean, you know, and it was
pretty extraordinary, really, to be frank, leak. So tell us a little more, because pain is such a part of the everyday experience. And
there are a whole lot of
places out there that want to tell you how you can alleviate it, and how to change your thinking or how to eat this or eat that. And I certainly found my own way through it. And I'm happy to share in the intimacy of the conversation, but I'm curious for you, did you find a sudden cure away the thing that resolved pain for you? No, but I think
you know, and I really want to acknowledge how absolutely unbelievable pain is for your psychology, because you feel like you are on the edge. And anything will tip you into the abyss because you are holding on this fingernails when you're in extraordinary pain for a prolonged period of time. But I guess my investigation was around how I told myself about it, how I braced it, how I braced against it, how I was frightened of it. And I think what it caused me to do because I couldn't avoid it, you know, I couldn't get away from it was to challenge my reaction to it, you know, what am I doing?
And I think the fear of pain is pretty incredible. I will say too, though, that pain and experience of it makes it very hard to experience more. You know, I used to think that the more operations I would have, the better I would get. But I think it kind of builds upon itself in some ways that it sometimes gets harder to deal with. Yes, I want to acknowledge that as well. Because, you know, I think it's a very dynamic complex thing that we have with our body, and pain that we experience, because it just it just reverberates through our spirit as much as anything. Yeah. Yeah, I think,
for me in those processes.
The I looked at it as a practice, can I have self compassion? And then for myself, can I do that? No, I can't, can I have self compassion for the fact that I cannot have self compassion for myself at this moment? And that was like, yep, I can practice that bit. But it seems to me that there's a synergy in just the way in which we went towards it. It's this looking for, okay, what's the juice of this? How can I use this for my own well being, for my own development of myself? Nobody else has to be in the room or know what I'm doing. But how can I be with the more of me and that's what it was? For me. It was an introduction that there is more of me here than what I first thought. Yeah, I think the unaffordability of it all.
Most insists that we have to find something sometimes, if you can't alleviate it, you cannot climb the wall all day, you cannot escape it. So it insists that you have to find different ways toward it. Because moving away from it hurts more, I think is what you find out. And when you've had extreme pain, you understand that I think when you have less of pain, you know, moving away and trying to resist, it can be vaguely effective, or you don't realise how ineffective it is maybe, but unavoidable, it's, you realise. And I think, you know, the metaphor there is in all pain that we have, like, yeah, the more we resist it, it doesn't necessarily go away. You know, perhaps it grows, you know, so I think, you know, it's a pretty profound thing to have that physical experience, do not wish it on anyone do not think it is the pathway. But if it's an unavoidable experience, it can be it can be very interesting.
There's another moment that you talk about emotionally and it, I think it's powerful for all of us. And it's where your partner, you had decided it's best that you split, I'm actually going to let you tell the story. But there's something so beautiful, that's that's aligned with what we've just spoken about the pain is that you think, actually, it's better. If I'm not here, when in fact, you have to lean into it. Would you like to share a little bit about that emotional relationship for you with your partner? Yeah, I guess it was some sort of vaguely before around saying that, when it became very psychologically painful, because I felt like I had lost everything and had nothing to give the receiving of love during that, or care, or anything you feel like you don't deserve, feels pretty bad. If you're not feeling like you're deserving of it. It's a horrible burden, in some ways to be receiving that, to be putting somebody out, you know, you feel like you have
all the things, you know, the burden, etc. So I'll say something in that moment about not wanting them to have more pain because of you. I think as well, it's not just the burden, you don't want them to go through the pain, because I can't actually bear that. I can't be giving it to you. Not because I'm a nice person, but I can't bear it. I can't, I can't carry it. Because I'm upset that I've given it to you I can't, you know, I think that's the truth of it. It's, it's not because I'm sweet. It's because I can't handle this.
And I feel terrible about myself. And I don't want you to see me like this. And I don't want to be seen, you know. And so I kind of made a plan, that my partner have a number of views at that point who's Well, the end of story is he still married to me 20 years later, I said, Look, Hey, you know what? The best, even great, but I reckon you should, let's break up. I will tell everybody that I forced it upon you normal judge you, because this is too much. And it's too much for you. And I know you want to get out of it anyway, because who would want to do this? And I really thought that that would be what would happen? You know, of course, easy. I'll give you a free pass from this experience. But in a beautiful, unfortunately, very difficult thing. He said, No, dude, you know, I'm here. I mean, this, this is mine as well, this isn't just yours. So, again, as you mentioned, that was just sort of an unavoidable
experience of having to accept
who you are the sharing of this, I can't do anything, I don't like it. But I have to find a way because you're not going anywhere. And you really annoying me by not going away. But you're not going anywhere. So you know, what am I going to do about that? And I think, you know, that self love that whole kind of, can I be kind to myself, while I feel such enormous pain, because that's our immediate reaction is if we're in pain, we are pain, we feel like we are that. It's um, it's trying to understand that as well. And I think emotionally, this is really important, because it's the other side that we don't talk about is I totally resonate with you. It's like, okay, the best I can do is give you the gift of not being witnessing me because that is the best gift that I could give myself in this moment in this relationship. And I want to share with our listeners that you know, you joined this relationship at a very young age and as you say, 20 years later, I came into relationship four years ago, having lived alone for 20 years. So there's not one way to do this gig. But for me, it was the same moment somebody turned up
okay, well, they seem to want to stick around, and how's it really gonna work for me in terms of sharing. And I think it's really important to acknowledge wherever you are at, this is a very real conversation you're going to have with yourself, not just about what they feel want, but what you actually feel about somebody loving you. Yeah, and those relationships can be all sorts, it can be parents, they can be children, they can be from all sorts of parts. But I guess it's when you're that vulnerable in that love. When you are in receipt of care when you feel broken.
It's a hard gig, it was for me to, to accept it.
And there's a place then where you do move into it unexpectedly a job that you really enjoy working in radio, and you pursue it, you actually do discipline yourself and pursue it. And I'm curious in your everyday life now, like, that's something where you have a commitment, you have to be there, you have to turn up, people now perhaps know a lot more about you than you ever thought they would know about you. So what's life like for you working on? What's the reality of that for you still on a daily basis. Um, I've luckily found some medication in the last maybe two years that has worked in a way that has progressively made me able to cope with my working hours, which is pretty intense, really far out.
You know, for this guy, I mean, people work really hard. And I don't, but you know what I mean, but before that period, in the same way, and it's been, you know, 10 years of working in radio, where a lot of them have not been? Well, it is, gosh, and I don't recommend it. But it is just lying in bed all weekend, to get out of bed on Monday, you know, or going straight to bed when you get home. Or, you know, just sitting through pain and saying, you know, for me, it was just like, Okay, well, I have to decide to do this with the illness, and what does it look like for me? What, what do I have to manage? Because I haven't trusted the world, I have the world changes, it needs to change in being able to say to employers, or whenever, hey, I need some special consideration, because I'm not well, I just, I don't trust it, you know, so I haven't shared it. And luckily, I've been well, for the last couple of years to not have to really push on that. But But I definitely, you know, managing illness is just, you know, so laugh at some of my friends, that friends that are unwell, who would we would take a day off for being having a cold, but not for excruciating chronic illness pain, because it's like, well, if I take today off, then I I'll never come to work, you know? So it's a, it's a real psychology. And there's a lot of managing, there's a lot of layering on to what is the transaction and the price? And how much am I prepared to pay.
And I think that is part of the reality. And it's rubbish that that is part of the psychology. And I think there are ways in which we can be in relationship with ourselves to diminish the harshness of that transaction. But there's also a reality that there is things that need to be considered. I think we're in a, in a structural work situation that we need to change. You know, I think what I am kind of furious about as well as excited about is how quickly we adjusted to different working conditions during the pandemic. And, you know, I think I wrote an article about that just like a year, like, if we could have done this this whole time. Why didn't we, and the fact that flexible work is really still a dirty word,
I think is a reality. And I think that's, I think more so than anything structurally with that that's where we need to focus is that we are behaving in a way because in a broad sense, we haven't been able to do anything else, you know, we have if we want to go along with it all we have to behave in a normative way. And I think you know, the conversations that we're all starting to have over the last and you're right, that 18 months to two years, like nothing we've ever done before. And we're finally going Oh, yeah, hang on. Why? Why do I put up with that? You know, we haven't even had that on his conversation yet with ourselves. So I'm hoping that the changes will come faster than than they have, obviously, you know, up until this point. Yeah, I find it fascinating. You know, I work for the Department of Health three days a week until I left to do this work. And it's like I had to work out all the time.
He, and I'm sure you'd like there's all these things you have to work out. And then all of a sudden, I got cured within five minutes, apparently, for hours, and all of the states working from home movie ends, and it's all fine. And we're doing zoom meetings and all the things and it's I just like, right, you know what, yeah, fair? Yes.
I, you know, I'm not even that confident that employers will, you know, on a wide scale shift that thinking because I think there is just an inherent,
you know, issue around the nature of work and how we do it, we've got such an old, traditional system of, if I don't make you you won't do it, you know, like, Who are we? You know, largely speaking, of course, that's just not true. So, yeah, I think and also the heart, you know, I found that it's your heart when you turn up with your heart. My dedication is to my authenticity. And I mean, that's really what you've laid on the table in your book is your authentic experience. And for me, honing into authenticity, and watching how that frees other people. How has the response been for you? Are there things that you've suddenly people have talked to you about that you might have known that you didn't know, they were experiencing illness? Or things that have been hidden that have been revealed to you? Well, yeah, I think that and I also, like, my family was sort of for my brothers were like, more my brothers particularly was like, far out. I feel like, I didn't know this about you, yes, enough, right. But I sort of feel like we all have the story, that we could write a book about our school, really lucky that I had an opportunity to do it to share the intimacy of your life, because we really don't, you know, I mean, we all have a story that we could write. So I think, I think that's how we need to understand the world is that there is so much intricacy to the experiences of where we all find ourselves, we need compassion, when you slow down, when it stopped charging each other, we need to just hold each other lightly. And I think, right across the board illness, or whatever we've gone through, we're all here, you know, by the grace of whatever we've had to do to do it, you know. So I think, I just think broadly, I think we're moving into that a little bit more, where we've got much more of a, an understanding that the world is not how we think it is, you know, it's very, very dynamic and diverse. And I think we've had the opportunity through illness to start to write some of that story, because we're just a little ahead of the curve, from some of that working experience.
I want to thank you so much for sharing with us and sharing what's real for you. And we'll put in the show notes, the links to your book and your show. And I'm wondering if there's anything else that you want people to know or go to or share that's in connection to you?
Well, not really, I think it's, you know, it's pretty much in the fourth, but I guess, you know, as much as we can follow and support other people with disability and chronic illness, to get a broader sense of the experience, and to have a deeper compassion for the wide range of this experience. I mean, I'm trying to do that more and more, and ensure that all our voices are amplified as much as possible. So I think that I mean, that's the great work that you're doing as well as sharing stories. So the more of that is, is really what's needed. Thank you so much. And I really wish you joy and beauty in the life as you continue to flourish in a way that works for you and your body. Thank you so much and to you to write better. Thank you.
Isn't she fabulous? I love talking with Jacinta. So, now I'm going to share with you how to enter the competition to win my masterclass on badass boundaries. All you need to do is hit subscribe, and pop over and follow me on Instagram at Michelle Irving official. And just tag me in the comments in one of my posts. We'll be announcing the winner next week on Instagram. You can find all of the center's details in the show notes including links to her book unseen. And next week, we'll be diving in with author and musician Sarah Ramey. See them
Transcribed by https://otter.ai