Welcome back to the pyjama interviews. Today we have a very special treat for you. The host of today's episode is actually Sarah Remy, the author of the ladies handbook for her mysterious illness. And the person she's interviewing today's guest. While that had been me, a little discomforting, and some of my vulnerability, and a beautiful laugh and sharing together, I talk about my own experience of chronic illness, the real raw truth of it, and how I came to create the pyjama interviews, as well as do the work that I do in the world, supporting intelligent, talented women living with chronic illness to find a way through. So taking a deep breath, I'm going to say let's dive in.
Unknown Speaker 1:00
Hello, Michelle, and welcome to your own PJ interview.
Thank you very much, Sarah.
Unknown Speaker 1:08
I'm excited to do this. It's um, it's fun to be I'm used to being in the interviewee seat. So it's fun to be the interviewer and get to know some of your story and just hear more about, you know, how how you got to where you are now and all the different themes that we have already touched on a little bit when we spoke, I'd love to really dig into some of those things in this conversation.
Great. Thank you so much for taking the time to interview me, Sara so that we can have another conversation and share more about the way we can have freedom while living with chronic illness.
Unknown Speaker 1:47
Okay, so, first question is, I'd love to hear you know what your conditions are. But also what that actually looks like, in your day to day life, like what does that actually mean? On an ongoing way, is it constant does it come in flares, etc.
So I have two conditions. One is an autoimmune condition where a protein in my blood attacks my liver cells and scars my liver to lead to cirrhosis. So untreated, that's where that goes. And that diagnosis came when I was 35. And it came out of vanity. I had dark circles under my eyes, and I went to my ordinary doctor. And I said to her, I've got these dark circles under my eyes and makeup won't cover them, can you have a look and see what they are. And that led to an extended sort of year long process of doctors and diagnosis. And it's a condition where the liver is inflamed, and it's called autoimmune hepatitis. And it's not a viral condition. It's where this protein in my own blood is scaring my liver and inflaming it. So my immune system is very active and thinks that my liver is an organ donation. That journey I was very fit at 35. I did dance classes, I did personal training, I did yoga every week, I walked fit, healthy, vibrant. And the treatment for that condition, at that time was a very heavy dose of steroids and an immunosuppressant at a very high level. And that made me sleep 18 out of 24 hours a day. And I was working and basically might catch the train to the office. And by the time I got to the office, I was exhausted and had to go straight home again and sleep. So it wasn't functional. And when I wasn't taking the treatment, all of my energy, vitality and vibrancy came back. So we can talk a little more about that process. But what happened for me is that I made the decision not to take treatment. And they gave me about five years to organ failure without treatment. And it was unsustainable for me to live with that level of fatigue and total incapacity when I had the option without treatment to feel so well. So that's what I decided. And as the story moved along, new treatment came along and they came a day where I was at the hospital and they said you take treatment today or your six months from irreversible organ damage. And at that time I trusted the new clinician And then I had and I took the treatment. And I immediately was bed bound for about five or six months with no energy, no capacity. But the it did start to reverse and heal some of what had happened with the liver. And that was my first deep dive into the face to face conversation with mortality at that level, which had always been part of the conversation. So I'd faced it intellectually and emotionally along the journey conceptually, but this was a very real conversation physically. And I took a long time to recover from that, but I did recover. And now what that means is I take immunosuppressants that have almost no effect on me, they have some weight gain, and they, if I get a cold, I can be sick for a couple of months. So any sort of virus, I can get very sick. But we have an agreement that my immune system is fantastic. So if you take it off the leash, and you take a couple of days, off suppressing my immune system, it will kick that cold to the curb. And that's the agreement is to sort of just take it off the leash for a couple of days, and then let it run. The second condition I have came in 2016. And I woke up one morning, and went to go to the bathroom and fell to the floor and felt like I was falling and the room was spinning. And again, I couldn't walk. And that was very frightening. And after a number of weeks, in and out of doctors and diagnosis conversations, it turns out that's a condition called migraine associated vertigo. And instead of getting the massive headache, you get vertigo. And this condition hit me at such a severe level that once again, I was bed bound, and I couldn't walk at all.
This time I couldn't read and I couldn't write. And I couldn't watch TV, because everything I was feeling like 24/7 I was falling and had vertigo, like just constant the room was spinning for the whole time. So that treatment is better medication that changes the chemistry in your brain to adjust what's happening there. And again, that was very slow. And in my, that's five years now with that condition, and I can walk and I'm pretty well by the weather is being really hot, and it's going to rain. Any change in the temperature that changes your vestibular system, that will affect me and I can wake up with vertigo. And that still affects me to the point at times where, because I'm lying in bed, but it feels like I'm on a roller coaster, I will throw up because of the nausea of the sense of being on a roller coaster, even though I'm in bed. So those are my two conditions. And that's sort of a little bit of highlights of where I've been.
Unknown Speaker 8:17
Yeah. And in a sort of moment to moment. Just so I understand, do you is unless you wake up with that where you're at now unless you wake up with those problems, do you more or less feel?
Yeah. So I'm more or less feel normal. What I have is a lot of body tension because my body sort of locks up with the condition. And because it's still there, it's still underneath the medication, any adjustments throughout the day. So large sounds or strobing lights or whatever, it will definitely activate it and my body will lock. And it's a level of tension that, you know, a massage can help some but that's basically I live with that sense of block. And what that means is that I will still get a migraine headache. Probably once a week, maybe more. And there are things that I'll do where I'm very careful about turning my head and I can just go oh no, that's no good. That's if we stay in that position that's really going to activate it. So there's a lot of vigilance in the body movement. Yeah, but apart from that, yes, everything's easy.
Unknown Speaker 9:49
Just just a little vertigo now and then being bad down here and there no problem. And so in addition to The physical what are what is the emotional weight that comes before we get to some of the the positive? Like, what are some difficult things that have come with that, in terms of what you have to deal with or carry with, or carry with you or process things like that, that were not there, you know, when you were just as you describe sort of healthy and well and vibrant?
Yeah. So anxiety is, is one of them be a stand of first as almost all of us would know. And the Vertigo is very anxiety provoking, because I feel like I'm falling. And it's frightening. And I literally am gripping the sheet or gripping the pillow or holding something to fit to stop the fall, even though I'm not falling. So that anxiety in that moment is terror, fear, really frightened. And there's different layers of it. There's certain layers where if it's just like, I wake up and go, okay, the rooms spinning a little, but that's not anxiety provoking, but then it escalates. This is a point where it's impossible not to be very, very frightened, which is the appropriate response if you feel that you're falling in terms of their own overall conditions, particularly the liver, there is always a consistent underlying vigilance and fear about watching my monthly blood tests and see you know, what the indicators are doing? I haitch is not curable, it is only managed, it can have flares, and the immunosuppressants can stop working. For reasons they don't know. So I always think autoimmune conditions are code for we've got no freaking idea. That's what that stands for. And they just treated as if they treating something else. And it's same for the migraine, they don't know what causes it, they just accidentally discovered one day that this drug helps it. So for me, there's always that sense of the invisibility of the illness. And you know, that you look well or you look great conversation. And
Unknown Speaker 12:35
can you talk a little bit about that about particular that relationship of having an invisible illness and like a chorus of people around you saying, but you don't look sick, or you look great, or, you know, things like that, I know that for me, that's that's one of the most difficult things
Yeah. Since moving into this work, it's obviously I feel seen every day working with women with chronic illness. So that's been and to be in relationship with them and even creating the PT interviews has been such a bright light for the luminosity of the experience that we all seen seen through the biggest sector or aspects of my life previously, where this affected me was going to work and trying to work and having the fatigue and pretty much looking well nobody can see vertigo and nobody can see an inflamed liver and they can't see the drugs and they can't see the effect on you the drugs so while I at work, I would because I would feel slightly unbalanced I would run my finger along a wall as I was walking past the mall at the office just to give my physical sensation of there's a wall there structure but impact of living with an invisible illness and then working with normal well people at the office. That is like I just felt my stomach just clench even talking about it that is hard. Like that is just like and there's a lot of performance management in the process. Both you not wanting everybody to be involved and ask you how you are and still unwell, still got vertigo. And everybody you know my feeling is that sense of about that there's me and then there's everybody else going about their life and their work and their mortgages and their kids and going to the theatre. And then me going home to bed and then restoring energy and then getting up getting dressed and doing it again. What I did through this process was really work with myself to have the conversation that I am as valuable as important as equipped as with the impact I'm more grit, more tenacity, so to speak in myself. And I started to change the way that I related to others from that sense of sovereignty and from a deep, deep sense of autonomy, and setting some super big boundaries. So that experience at work was as complex in many ways. But I started to feel like an act like an agent that I had agency in it, and that I was taking some control. And the outcome of that is that the onus is more visible through your verbal description of it or saying what you can and can't do. And you're in relationship now with other people's emotional system managing their response to that rather than feeling consistently invisible, and me trying to manage all of it. There's a relationship with others. So those are some of the places where I felt the invisibility. And the only other one is on public transport, that thing where you look so well. But you feel really faint, and you want to sit down on crowded trains and trams, which has not been a problem in the last 12 months in Australia, you can get as much space as you want. So that has been a delight.
Unknown Speaker 16:43
I have pots, which is different, but you also really need to sit down often most of the time. And if you're in a crowded situation, it's very anxiety provoking, because nobody can tell that you need this, you don't have a cane, you don't have some sort of external signifier. And that can be really just difficult, because it's interesting, because it really does over time, I think I think this is so much of what you're going to do in your part of what you'll do in your course with with women, is to really talk about how to learn to step into that sovereignty, as you would say, to learn to advocate for yourself, and to learn not not only your own worth, but you're, you're worthy of being seen as you actually are. And that this is something I think about a lot because I'll be on a zoom with some old college friends that I'm not really close with anymore. And so they don't, we don't talk about my health stuff very much. It's just there to catch up. And there's so little space in that environment to I feel like it's too heavy to bring up my health. But everyone else on the call is complaining and kvetching about their life, like they don't feel that inhibition being seen in their struggles. And this is a really interesting, I think, difficult, like it's something that I feel like I've really managed in some areas of my life. But sometimes I still, it's a challenge to be like, okay, so how do I feel more seen in this situation? So So I would love to hear about a little bit about what are some of the ways that you have done that work to make yourself visible in a way that feels empowering and better? Because there's so much I think medicine in being seen? Like, what are some of the ways that you were able to bring kind of that that witness into your own life?
Yeah, so some of the things I did. In the first round of being bed bound and being so sick, there's and having that conversation with death. There's an incredible strip back in your life, like you can't, there's not a lot of people that you see, the people who come to you are helping you physically like they're getting groceries for you, or they're cooking dinners for you or whatever. And for me, that was probably one of the most difficult emotional and cognitive like mental, conceptual experiences of my life. Because I had left home at 17 I had cared for myself. By this time, I was 42. So over 20 years, I'd earned my own money. I'd lived alone for a very, very long time, so well over a decade by this time, and I'd managed all of my things on my own. So at that time, I was getting migraines, or I had been feeling fatigued, but I managed it quietly myself. So it was so difficult to be in a position where I needed help, and I couldn't do it for myself. And it brought up a lot inside me from my family learning. And the culture of my family, which is, you take care of yourself, you don't ask for help. And if you ask for help, you are a burden to other beings. So I felt guilt and shame that I couldn't care for myself. And I just had to learn how to let people help. And it was hard. It was emotionally hard. And I had to meet all of those thoughts and beliefs from childhood and teens about what I had been taught. And in many ways, rewire, re meet them, speak to those younger parts me and say, Actually, this is a situation where help is important. People are offering their help, it's not a burden to them. And I had to learn some compassion for myself. But what that experience did was give me the literal nervous system experience of being seen and being helped in a way that was useful. And I just kept going with, it's okay to be seen and be helped, and that my vulnerability is complex for me, but how can I use this vulnerability? And how can I learn with it, what it's like to be a human being and the fragility of humans. So by the time I started to go back to work, and I went five hours a week, back to work spread over three days. And most of that was from home. So pretty much if I went to the office, I was working somewhat, ironically, for the Department of Health here in Australia. But I would go in for an hour. And basically, I would go in, I would sit at my desk, somebody might ask me a question about something I would respond. And there are times where I remember a colleague of mine who was had become an acting boss, so she was there for a short period of time, bringing something to me and saying, Oh, can you read and analyse this? And we look here saying, No, I can't. And she's like, but it's like, no, you'll see from my doctor's medical condition about returning to work that that task is too complex for me, due to brain fog and everything else. But I never went into that with her. But I just practice saying, No, I can't. And feeling it was an education for the other person about boundaries. And it was good for me. And I just kept going to my age, practising saying no, asking for what I needed. And I had a deep sense that other people's discomfort was great for them, to learn how to manage their discomfort with me setting a boundary
Unknown Speaker 23:22
that's very evolved. A lot of people, myself included, it's been a real journey to to really, I think, appreciate that perspective and not feel like setting a boundary is a violence against somebody else like that is how it can feel to to some people like me, in that you feel like you are harming somebody else, by just saying, no, no, thank you. This is this doesn't work for me, which is all totally normal behaviour in general, but also for a lot of people. They just say no all the time. And they set boundaries all the time. But But I think if you're more sensitive, if you're more empathic, if you're a woman, there's a lot there's a lot of predisposing factors to having maybe not as much experience with boundaries. And it's a real crucial learning curve. In terms of coming into your own, especially with a chronic illness that is invisible. You just have to learn those skills and they because otherwise it's just miserable, because people just are trampling all over your boundaries constantly and it feels
bad. Well, it's not only is it incredibly detrimental to you. It's detrimental to others on the planet is my view. And boundaries was something that really chronic illness taught me and I wasn't I was great at putting up walls emotionally in my 20s and sort of pushing back with people and retreating to my solitude. But with the diagnosis of the liver condition, I was very open, because I was felt at the mercy of the doctors and the discussion and the treatments. And the one thing that I felt that I had was I had my academic background in philosophy. So I had this deep question and myself of what is the good life? And I had framed my life and structured my life around that question. So what is the good life for me? That for me was like, I like having time I like to be able to read, I don't want to work all the time. And I'd set up my life started to structured around that question, and it changed over time. But that question really guided my relationship with the treatment of the illness, because it became not only what is the good life, but what is the good death? And how do I want to die? And what is that? What do I want to feel like in that completion of my life. So this really guided me between 35 and 40. And for the first couple of years of treatment, when I was still taking it, and changing drugs, and that and just incredibly sick, it really led me to that moment where it's like, this is not a good life, and it doesn't work for me. So when they said, Well, without treatment, you know, you'll die within five years. And I was like, great, I've got five years, I've got five years to fill well, because 25 years feeling like this, when I know there's an alternative, I had an alternative. It wasn't pretty at the end of that alternative. But it was pretty for about four years before that. And I made a list of the things I wanted to do before I die. And I couldn't do everything, but I could do some of them. And one was go live in Paris. And the other was to really immerse in mythology. And I went, actually took a group of people on a philosophy tour to Turkey, and we looked at Alexandra and I was sick, like I was still taking some medication then. And there were days where I had created this 10 day tour for these business people with a fantastic philosopher guiding them. And I was the manager of that. And the at the end of that time, like in about day eight 910 I was too sick to leave bed. And so they went off on the tour, it was this beautiful thing that I had created, I had never seen I wanted to do. And I was laid up in bed super sick. So for me that learning of boundaries was a constant conversation with myself and with others. But every little stretch built, and I kept became more and more comfortable letting other people be uncomfortable, rather than me suffering in silence, and everybody else seemingly getting what they need me feeling emotionally crap, and filled with anxiety and constantly trying to do things that just weren't physically possible.
Unknown Speaker 28:21
Yeah, that's more important because I think when you have these illnesses, you feel so alone, and you feel like you can't communicate it to other people. And it just compounds the emotional weight of the whole thing, like being sick, is already difficult enough, but not being able to kind of build those bridges out to other people where they can like walk over to you and actually meet you where you are. Not being able to do that just makes you feel so cut off and isolated and bad. And so I think really learning those skills is is so important. And I wanted to ask you, because that sounds to me kind of like one of the ways that you really learned to flourish and that you really learned to become more than you were before you were sick. And I wondered if you could speak to some of the other ways that you've you felt that in your own life because you know
look, boundaries just became critical with doctors, they became critical with determining medication, they became critical, living with side effects for months and months to the point it's like factories that now. So I feel like this sort of a natural evolution where you sort of suffered to a liberal point until some part of you kicks in and says this No, no. And that's a really healthy place to be. That to me is the beginning of your healthy engagement with yourself and your body. And it's totally functional to to say no to people, it's critical not just for your well being. But we all know what it's like when you say yes. And you actually mean no, if you just think of anybody you've engaged with working with, they've said, Oh, yes, I'm happy to do whatever. And then you feel their resentment in the passive aggressive, it goes on for, you know, it never ends. And that cost is very high, not just for them, but it's, it's icky. And so notice that people's, everybody does say, No, even if it doesn't come out of their mouth, they say no, in ways that are totally dysfunctional, and really unhealthy. And I learned to trust my capacity to say no, cleanly. And what I found in that process is, I felt much better, I learned to let other people have their emotional response to it, and not try and manage it. And that was a really big thing. Because it's their emotional response to what's true for me. And they can say no to, and that's what started to happen is that people started to trust me a lot more and tell me the truth of what they were feeling. And I worked out all sure I'm having this because of chronic illness. But people have a level of anxiety in the culture of status and working and feeling like they have to be perfect and get everything done. And they're also in just anxiety, trauma. And so things became more visible. So one of the things that I worked out was what I now call badass boundaries, one of the great tools of having freedom with chronic illness, they're the first, they really give you some freedom, both they clear up a lot of space in your life. And your energy can be focused on what you actually want to put it towards, you have got a limited amount of energy, that's true. But you want to harness that for the things that you want to put it into, rather than just the incredible emotional drain and anxiety of worrying about everybody else. The other thing that I did, and it came through that long period in bed at home, and not being able to cook for myself or do anything and then slowly being able to like walk to the letterbox holding with somebody holding me, like with a
Unknown Speaker 32:33
very common thing where you're just like, Man, I'm just getting them out. And so like, I don't know why that that one thing I think comes up a lot with people who have very severe fatigue issues. Like there's something about the, the journey to the mailbox, it's like the first thing that you do, you get out of it, and it's still so hard. And you're just like, wow, people really don't understand what I when I mean fatigue, like I cannot go into the mailbox. It's like climbing Mount Everest.
And it feels like such an achievement when you get there. And then you're like, I've got to go back, but I'm gonna have a little rest and consolidate my energy. So what I did was I looked at all of the things that were on my list of I can't do it. And I was driving myself crazy. I was just so upset and depressed and in grief and loss. And I thought this is not helping me. So I wanted and then everybody's having those conversations with you, where they're like, Oh, poor you. And I don't know how I'd cope with that. And it's just, it's heavy, it's icky. And it does not feel good. And it's not the way I want to be in relationship with myself. So what I decided to do was visually and sort of, in my own journaling, create what I called my circle of wellness. And that circle included, that I could maybe have a bath all the things that I could do so when I could go to the letterbox, the letterbox went into my circle of wellness, instead of I can't go to the market to get food. I can't write something because of brain fog, blah, blah, blah, I started to focus on my circle of wellness and work out what was in it. And this process gave me the joy of achievement in my circle. And then every time something was added to my circle of wellness, there was this expansive joy. And then when things relapsed, or my circle shrunk, what I was doing was changing the conversation with myself and others that I'm not going I talk to you about illness. I'm talking to you about my wellness, and what's in my wellness sphere. And this is what I can do. And that fundamentally changed my relationships. Because instead of saying, No, I can't No, I can't, no, I can't and just feeling that way. And that heaviness and that sense of incapacity, but also feeling just like, I've got nothing to contribute here. When I started to talk about what I could do, you can see in my energy in my face, there was this joy. And that's what I talked to people about, this is what I can do. And I did not ask myself, to compare my circle of wellness to everybody else, family, friends, colleagues, I looked at the people who were my peers. So when you go to a hospital and you go for treatment, you will have other people in the waiting room beside you. And they are my peers. Not the well, people. These are my peers, this is my community. And when I see the courage, the grit and tenacity, of you know, in a liver clinic, you have people with oxygen tents, oxygen tanks, and who are yellow with jaundice. And these are my companions, even though I look well. And these women and men of all ages, get up and find their way to the hospital for treatment is like, I fucking kidding me. What does that take, and to be out in the world where it is visible, what they're dealing with, like these are the most courageous, powerful, respect, respect respect to these people. This is my community. And this is what they face. And this is what they do with their time. And you can hear it in my voice and in my energy is like, this is what this is the ground. This is the ground we stand in. And any of this bullshit about illness, or, you know, can't you just do this or apologising for being unwell, knew we do not apologise for having this amazing fun, the mental emotional capacity.
Unknown Speaker 37:17
Yeah, I want to make a note here because I don't know who's in your your workshop. There is a there is a slight distinction when you have a contested illness where if you don't have an illness where people are recognising that you're going through just like just the most hellish things, you there's an extra layer there where you really do need people to express to you kind of like the same like, like expressing to those people that have a visible external signifier that's usually missing. If you have a question. That's and so and it's so important, like, I feel like that's what's one of the benefits of the programme that you're doing is to provide that for people like this recognition of like, this thing that you are going through is a fucking nightmare. And like, if you skip over it, and go to the circle of wellness without that, then it doesn't feel you're like I want to focus on those things. But first, I need to acknowledge just like the shit, because it's not happening to you in the medical world often that with friends. Yes, ma'am. So yeah. But so it's it's, I just, I'm just reflecting on that listening to and like, you're absolutely right about that. But it's there is this missing piece? Yeah. Got one of these illnesses. Yeah.
And I think for me, you know, just having doctors because it is still all invisible in me. So I get that bit. And having doctors not really listened to about side effects or not really listened to you and keep pushing you down a path. And I remember when I kept saying that that drug doesn't work. I remember a specialist just sitting across the table looking at me and saying, Well, I think we've reached the limit of medicine with you, Michelle. And that sense of like, alright, because I'm not complying. I'm the problem patient because my side effects are too much. Your position is like, oh, okay, well, we're just gonna have to leave you at the side road, you know, on the on the curb, and we'll just keep going with the patients we can treat. Yeah. And that is crap. And I certainly totally agree with you. The circle of wellness was what I found in myself while living in the swamp, and the distress and the anxiety was the only way I could find a way out emotionally. And it wasn't my circle wellness is there happy rainbow lands. then this is where I'm going to spend all of my time, it was still like, I can't fucking go get food for myself, this sucks, I have to just live with what people buy for me and they don't always buy the right thing. And, you know, I can't get my real needs met where I can take care of myself. And all of that though, I felt that there was this framing of me experiencing illness as infantile icing me and as treating me as someone to be incredibly sorry for even though they couldn't see the illness, they could see the impact on me when they're up close. And I felt like I was constantly being treated like, there was something terrible about me, and my experience, it was this horror story. And I just couldn't stand that identity being narrated to me, when for me, I was like, a fucking kidding, I'm sitting down having a conversation with this, you are all going to have this as like, this is coming for you. And I'm taking the time, and I get to be with myself in the truth of who I am. And there are things I'm discovering and learning here. And it is crap that I can't walk in, it is crap that I need you to take me to the hospital to, because I can't get there on my own. But I'm not a victim of some terrible, terrible misfortune that has occurred, and you are all immune to. And therefore I'm just going to be the one that you all look up to, and go. Well, you know, when you look at what suffering can be really be like, I'm really good with my problems, like I hated being the benchmark of other people's wellness. So that's what really drove me to find a new story for myself, and a new way of being in relationship with myself.
Unknown Speaker 42:05
Yeah, it's just it's so interesting to me, because I've always, I've also experienced, like, I got an ileostomy, just like a colostomy bag. Last year. And this is a visible thing. It's an invisible under my overalls, but it's finally was an externalisation of like, a real problem that had already the functionality of microloan was already a problem before, but nobody really believes that it was such a bad problem. It was so fascinating to flip from one side of like, the pain of having everyone question you constantly, like isn't that bad? Like, can you just come out with, can't you? You look fine to me. And we're switching over into having this thing that people are like, Oh, that's much more like what you're describing, just like, Oh, I feel terrible for you. And that's horrible. And that, in my case, that was like a bomb, because I had not experienced that add on. So I just like soaked it up. But eventually, I started to experience exactly what you're describing. And I think what people who have it's just two sides of the same illness coin. It's like, when everybody feels bad about it. And it's an understand that you are second, you're in really bad place, then they pity you, they box you and all these things that you're describing. But if they're if they don't believe that you have that illness, and you're not getting that, and that's its own kind of progress, it's just it's interesting, like that they one doesn't negate the other. It's it's they they kind of live in tandem with each other and you're kind of in one experience or the other one. And they both have kind of different ways out like you're the type of
migraines. Yeah, the vertigo was is exactly that. You can't see me have vertigo, you can just see me say I need to go home because I've got vertigo at the office. Nobody can see the suffering, nobody can see the pain. Nobody else is feeling the floor rolling underneath their feet. And that level, I found that really mostly in a working situation. And suddenly once I'd recovered a lot with the liver, I would feel fatigued but nobody could see it. And I would just say I'd had to go home or do something. So that is a different problem. And in that it's like I really want to be fucking validated. I don't wish you had this vertigo. But geez, I wish you had something where you could see this invisibility. And it was even with some of my dearest closest friends who just, you know, you can see people get tired of you talking about the illness and impact on like, aren't you betta extended?
Unknown Speaker 44:57
They're like, in private. They're like kind of what I miss when friend a could do all this
exactly. And when I see her, it's this heavy conversation. And there's part of me, you know, I'm a human being there's no enlightenment claim here. And a girlfriend of mine, when she fell pregnant, she got a condition which made her very, very sick and bed bound. And then she got it. And I was like, I'm really sorry that pregnancy, you're having this experience? And there was part of me on the inside going? Yes, no, that's it now, and her whole relationship with Me transformed. And, you know, a super good friend for me when I was sick, and she did think she was a beautiful, beautiful friend. She's still a very dear friend. And there was this joy in part of me of okay, you get it now. But also, I have something to offer you now in this experience, I can help you with this thing that is unimaginable for you, I've got something to offer.
Unknown Speaker 46:14
And this leads to a very important conversation that I know we want to have, which is talk to us about the the heroines journey and about Persephone, because I know in my Persephone studies and writing that a huge part of Persephone stories that she becomes the guide to other people descending into hell for the first time. And I know you go into this in your in your work in your course. But like, that's what that's, for me, this was such an important piece of meaning that was like, even if I'm not healed, I absolutely now have this incredible power to help other people, even if it's just my friend, who just know as hyperthermia and is sick and is going through all of these things. I can actually be empathic with this person, I know probably what she needs to hear in and things like that, which can bring back a sense of worth in another one in a situation where you're really having trouble. Feeling like what's the point? Anyway, but this is a big conversation. So tell us a little bit about Persephone, and how you came to that story and kind of what that means to you and how it shows up in your own life.
So when I was very sick in 2012, I was looking for a map of my experience, psychologically, that was an empowering thing. I read a lot of mythology. So I read about Neptune, and the Odyssey. And I found this myth in Greek mythology of the Queen of the underworld. And in Greek mythology, she's Persephone. And I had some very visceral experiences in this because I was sitting in that conversation with death, and I didn't know what was going to happen. And I was reading these myths. And there was a moment where I just felt this presence of her. And she was the way in which I was going to have a conversation with death. And she was the guide, because that's what she is in Greek mythology. She's the bridge, she's the guide into death and into the underworld. So she has her own story. And I immersed in that and found in it as you did, Sarah, this fantastic map for the psychological journey of illness. So Persephone is a maiden she's hanging out with the other goddesses in a meadow. And the earth opens up and Hades, the god of the underworld comes up and snatches her and takes her down to the underworld. And we don't know,
Unknown Speaker 49:02
you may recognise if you're a healthy person walking through the field of daisies, and then up through a crack in the air, comes your horrible illness and through no fault of your own succeeded.
And we don't know a lot about her descent at that point in time. I think it's really important when we talk about Greek myths, to remember they are written by men, they are in a culture, which validated men. And that's super important. And you and I know that there's more to this story historically, which we can talk about at another time. But she's taken down to the underworld. And one of the things that happens in that process is she becomes the queen of the underworld. And she goes into that space, and she becomes sovereign in it. And then there's a process through which the world has gone into grief her mother has sent the world into winter, there's a negotiation between the gods. And it's agreed that Persephone can come up to the overworld, or what I think of as the overworld. And there's variations in the myth, but for the point of sickness comes up six months of the year, and that is spring and summer, and she comes back down, and she is Queen of the underworld. And as you read this myth, for me, what happened is it's like, oh, hang on a sec. This is sovereignty. I know how to move in the underworld, I know how to move in the grief, I know how to move into despair, I know how to move with that sense of not knowing what is going to happen with the uncertainty, I needed a different experience of time and space, when you are in an underworld journey and chronic illnesses that journey. And there is a way that all of that swamping mush, just rubbish in your own psyche, and in your own world, all of that experience can move you into your sovereignty in that underworld. And when you come and speak to the external world, you can speak from that power, that grit, that vulnerability, which knows how to be vulnerable and set a boundary like it is an awesome empowering process. If you work with this map, if you want to work with the map that status and working, you know, 12 to 16 hours a day, six days a week, and buying amazing luxurious handbags, and partying all night. If you want to work with that map, as an empowerment map, while you're living with chronic illness, you ain't gonna get the match, it's just gonna, it's gonna dry
Unknown Speaker 51:50
or it's gonna make you feel like a failure, it's gonna make me feel like, like I talked about this about how the other journey is the hero's journey. And we all kind of relate to that, because it's in our faces all the time because of movies and books, etc. But you do start to identify with that. And so you feel you see this a lot in chronic illness narratives, that everyone expects you to slay the dragon of illness, and with chronic illness, you're not gonna happen. No. So you just feel like you are gonna set off on this journey. And you're gonna go through all of these difficult experiences. But on the at the end of it, you're going to emerge, healed miraculously. And that is how you will know that the journey is over. And that is not what happens. With Persephone. This is a cyclical story, as you said, where she comes up to the upper world, and then back to the underworld. And that's very common in chronic illness.
And it's empowering that you do learn boundaries along the way. And you're going to have this experience, particularly in the you know, you can be with chronic illness, 20 3040 years of your life. And there will be times where generally you might feel better, and there are times where you feel rubbish, but when you hit those rubbish times, they can be extreme. And the only map that made sense to me was the queen of the underworld process. So what I did for myself is I was reading this mythology I took up like, this is my fuckin journey. This is who I am, this is what I'm doing. This is the outcomes of this experience. And I know things that an overworld journey doesn't. And I know how to be with despair. And I know how to be with pain, as horrific as it is. I know how to stay connected with myself and not plunge myself into a whole lot of self mutilation like emotional, just slicing myself up emotionally and becoming fodder for everybody else's comparison about how good their life is. I refuse to do that. So when people went through divorce when other people went through mortgages or redundancy, or whatever, I had a toolkit, but this toolkit for me is so powerful for chronic illness because it is made for this journey. And what I did was I've spoken about the boundaries, and I've spoken about the circle of wellness, and I designed courses for women that run through this myth. So they're practical, they're not Let's just all talk about the myth and you know, send him Bob cloud, but
that's not helpful. They're like, what do you need in this journey? And what do you get with Persephone and you need some badass boundaries, here's how they will here's how to get them. Here's how we practice them. We use the circle of wellness because that is a useful empowering process for yourself. We look at how to create meaningful work for yourself. Self, because an overworld notion of working doesn't map well with living with chronic illness. But you can flourish and you can have work that is meaningful for you, and where you have a contribution to make. So you and I've been sort of talking about the work that I do. And let's be really specific for women listening to us, I run a series of courses, there's a six week course called Finding Freedom with chronic illness. And that's where we really look at the story that we've inherited, inherited about illness, all of this sort of mediaeval narrative that is still running out in the world, about illness being something you have to overcome, you have to fix, you have to be fixed. And it being this terrible misfortune is not a great empowering narrative for you with your own psyche. And there are many other narratives you can work with. And you can work with what I think of as the power of illness, not in some great gratitude journal, that's what we're going to do in fluffy rainbows. But we're actually going to look at how the grit and the vulnerability, your tenacity, the boundaries, how they are the power that you can live with, and they're built through illness. The second thing I run, which is launching in April is an eight month programme called Queen of the underworld. And this is a deep dive into the psychological territory, territory and the practicality of how do you want to work? What is your capacity? What are the possibilities, and we go through this process, there's a logical part for your conscious brain. But once you start to have a new narrative of illness, once you start to feel into that sovereignty, you practically work with that sovereignty, you transform your relationships with friends, family, and clinicians, where you are standing in your power. And that changes the way you relate and others relate to you a lot more possibilities open up for you, creativity starts to flow. And there are times where you don't have capacity. And we have a space and a process for that. So that that is not seen by you, or narrated by you, as a waste of time, that is not wasted time. That is time for you to be with yourself. But there are tools to learn about how to be with yourself in that space. So that's the process. And it came to me through these bed bound experiences. And exactly what you're saying, Sarah, about the different types of illnesses, the capacity I had with the liver, bed bound time was I could read, I could write, I could watch TV, with a migraine associated vertigo, I couldn't do any of those things. And I couldn't chat to people because the movement was disturbing for me. So there were other tools I had to use in that process. And a lot of the tools I had from the liver didn't work for that. But Persephone still worked as a map. And there are other tools I found. And there's the tool of unbelievably kick us compassion for yourself, like the boot camp of compassion, and what that really means. And this is not compassion, so you can give compassion to everybody else. This is like what is it like to be with yourself? When you can't do anything, when it's all stripped back? How can you work still with your psyche, and quite frankly, remain fuckin sane, remain as sane as possible,
Unknown Speaker 58:45
which is also a cyclical, repetitive process. It's not something that you do once or twice or three times. I assume, in your class, it is a practice that you learn that you are going to have to come back to over and over and over again. But it's so empowering to have a practice like that of self compassion and self forgiveness. Because otherwise the world is kind of setting you up to sort of have the opposite of that like because you're not meeting the benchmarks that are live in the world around you. And so it's really easy to start feeling really about yourself because you're just not ticking the boxes that everybody else is ticking and so you really having the like a real practice of self love self compassion, self forgiveness, self like cheerleading, I just felt like there's just so many things that I just feel like are so if only I could go back to the beginning when I got sick and went went through I need probably a decade of feeling exactly. And so to have those tools early or wherever you are, but to have to get them now I feel like it's just such a Found.
That's yeah, for me, it's like, these are the things that I learned. And I wish somebody had been there as the guide for me to say, here's how you can work with it before. You know, you end up in such despair and hopelessness, like you do end up in despair and hopelessness without some of these things attended to. And there is nothing in the overworld that is going to give you these tools that are practical for chronic illness. Because it's just not the experience. This is a lived experience, practice. And I'm running a course at the moment. And, you know, I have beautiful women, where we meet every Sunday. So in all of the courses, you'll have video content, you'll have the workbook or that practices for that week, and then we meet as community. And this is really what you were talking about, Sarah, when you have women with totally different conditions, who recognise the emotional journey and can speak to it. And you can see that in the faces of other women, just like this PJ interviews has made clear, all of these interviews are about women's experience and thematically, how to have power through it. When you have that in community, a lot of the stress and anxiety starts to unpack off you because you realise you are totally normal. This is a totally normal response to an incredibly difficult experience. And that's what we want, we want you to feel part of a community where you are seen where you are seen for the incredible magnificence of who you are, and where you are able to stand and speak from that space, and reframe and reset every aspect of your life. It is entirely possible. And Sarah, I know this is something that you have worked with, and you stand in this sovereignty yourself. And Persephone has been a guide for you as well.
Unknown Speaker 1:02:02
Yes, and you know, something comes up for me when you're talking about this because like you, you're you're ferociousness starts to come out, which is a very important emotion and it's not an emotion, I normally labelling it as an emotion. But it is. And it is something that it's so interesting, because you know, like, what you're doing is like might by other people be put into the category of like, you know, wellness and alternative healing and things like that. But in reality and alternative healing, we, I think we spoke about this in our conversation can actually, because it's trying to, like, get into, like what emotion of yours is causing you to be sick. You do to make all of this tragedy come down in your head over and over and over again, which is incredibly poisonous. I just, I want a ban on that forever, which isn't to say that emotional work can't be important in your healing soul,
but do not go to looking at how many negative thoughts you are or how you created your illness through your thinking, that is an absolute genocide on your emotions, like that is terror
Unknown Speaker 1:03:16
thing that it did it completely erodes, especially over time, almost down to the foundations, is your sense of sovereignty is your sense of self and power, it starts to be like, Oh, wait, I cost this like, I'm terrible, I'm wrong. I mean, you start to like, shrink the picture frame. And it's horrible. It's so bad. And so I feel like this is literally the opposite of that. And I do one last note about this, I notice a lot of people and I'll turn to the policy, which can be really wonderful and good. But especially if that person who's the practitioner has not been sick themselves, they are usually really prone to that type of like, I'm just gonna put it back on you. And I think that kind of comes from, like not wanting them, they don't want to feel like a failure if they can't heal you with their practice or whatever. And so then they just put it back on the patient. And that's put that to the side. But this is just it's so empowering and so important, because you really, I don't know, anybody who hasn't really lost had that sense of erosion over time. And so to have something like this, that can literally be the opposite of starting to build you back up into a powerful person who is also sick is such a just a tremendous gift. It's really important.
Yeah, I think what I noticed is that it's, I want us all to be seen like we are a tribe of extraordinary women. truly extraordinary. And what we have inside us and our capacity to be with ourselves is just a luminous light to this World, and never more so than at the moment is this truly visible like people have suffered with the whole society having a health crisis. And yet every woman I know with chronic illness has had something to say. And it's like, welcome to my world, this is normal. But we still need to find a way for the wealth of capacity that we have to be translated into our wealth. Like, we want to have functional sustainable wives, while we are working and living with bodies that are not always normatively functional. But that is no reason for us not to have beautiful, loving support, strong financial foundations, and amazing, vulnerable and authentic connection. And that's what all of my work is about. It is about your freedom, you can experience enormous freedom while living with chronic illness. And it's pretty focused, and it's not going to take you into some laborious you know, another level of treatment, that you just have to live with the side effects, you can change those side effects of your life right now, almost immediately, with small tweaks, in your perspective, and with small practical skills.
Unknown Speaker 1:06:29
That's great. Sounds really good. I think we're starting to come to the end of our time, I know I'm coming to the end. But this is such a good, I'm so excited for the, for this programme to go through this with you. Because I just know from my personal experiences of starting to do a lot of the things that you're talking about the quality of your life, the quality of your health may stay exactly the same, but the quality of your life really improves especially that relationship that you have to yourself, which is barn on the most important relationship in your life. And to get some help kind of really establishing that, that that bond, I just feel like it's incredibly powerful. So I am looking forward to people signing up.
Yeah, and you can flourish. And that's what comes with it, you can flourish, you don't have to stay locked in the corner. Thank you so much for taking the time to interview me, Sarah, and give us enough space to have this conversation again. I really appreciate it. We'll put in the show notes, links to the course that I'm running and all of the other work as well as links to Sarah as well, because Sarah and I are going to continue to have these conversations and Sarah is going to be a guest in the queen of the underworld programme. So we'll speak more about that at another time. Thank you so much there. I really appreciate it. Thank you. I really appreciate Sarah. She's such an insightful interviewer. We always have a great time. And I'm thrilled that Sarah is also part of our queen of the underworld programme as a guest speaker. So here's the news of what's happening. Queen of the underworld is about to begin and we begin our first live group masterclass in the week, the 25th of October 2021. If you have any curiosity about this programme about any of Sara's work, anything else that sparked your interest, just go to the show notes and follow the links. And I look forward to our next pyjama interview next week, where I'll be back in the hosting seat. I'll talk with you then.
Transcribed by https://otter.ai