It was it was really traumatic because on a good day, I felt like I couldn't be real. I must have made it all up like any other illness or condition. You get sick either gradually or quickly, and then you you're at a plateau, and then you hopefully get better or you get worse and you die. But this sort of like on again off again was baffling. And it was like it was so hard to explain to people.
Welcome back to the pyjama interviews. I'm your host, Michelle Irving. And this is a podcast for women living with chronic illness. This week's guest is Sydney writer and author, Ashley Kerrigan blunt. Now, Ashley has had a big experience with chronic fatigue. And I know so many of you are living with chronic fatigue. So in this conversation, we go deep, not only into the experience and how to manage the experience of chronic illness, but especially the conversation about the emotional impact of this invisible illness. And now let's dive in with Ashley. So welcome so much, Ashley, and thanks so much for chatting with us.
Thank you so much for having me. Michelle, it's a pleasure to speak to you and your audience.
I want to start first with Can you tell us firstly about your condition? And how you came to be aware of it what the experience was like for you?
Yes, so I had a very long experience of becoming ill because I had what's called insidious onset. And so basically, I have chronic fatigue syndrome. And I started to get, I started to get days where I felt like I was coming down with the flu, and I didn't have any symptoms necessarily, maybe I had like a scratchy throat. But basically, I just felt exhausted. And I felt like my body was saying, like, I'm dealing with something you've got to lay down, like I can't cope with anything. And so I'd lie down for a day or day and a half or sometimes two days. And then I'd feel fine. I'd often feel really good. And I was like, Okay, great. And I just got on with my life. And when it started in 2016, late 2016 There was enough people around who had colds or flus or whatever, that I could always explain it. But then, in 2017, early 2017, it started to become every two weeks that I would get, I would lose at least a day. And I started to think I looked around at other people in their early 30s. And I thought wow, no one else I know is losing this much time to to fighting off colds and flus and never getting a cold or flu during that period. But I was doing I was working not full time, but I was working quite a lot. And I was also doing a master's degree full time. And I was taking really good care of myself, like I was exercising regularly, I was still seeing my friends, I was eating properly, like I wasn't, you know, this sort of stereotypical grad student, you know, eating chips and staying up all night. Like I I was always in bed by 1030 I'd that's all I always have been. Um, but I just I thought, okay, it's clearly just a stress from working and trying to do the degree. And I was submitting the degree in April. So I felt like, okay, I can I can make it through to April, and then I'll feel much better than it. That's this is the problem, I'll feel fine. And then in May, after I submitted my thesis, it just got worse, it just got so much worse. And I had a birthday party is finally seeing a lot of friends that I hadn't seen twice during the degree. And so I'd invited everybody over and I got all this food and got this big cake and really excited to celebrate. And you know, people start showing up at 7pm. And by 930, I just I was so sick I ever had leaves, I was just like I can't like I couldn't stand up.
So that's when I start going to doctors, and I knew I knew it was gonna be a long road with the doctors because my symptoms were so vague. And there there were symptoms that I was having that I didn't realise until later were symptoms. Yeah, but I don't know if they even want to help the doctors identify things so I had what like what I now know is alcohol intolerance where I'd like have one drink and it felt like it had a casa sand and I was just so parched I could drink a litre of water after that and just still feel incredibly parched. And I honestly just thought oh, this is just you know, I'm getting older I'm you know, I'm in my 30s now I guess this is just what happens to some people. But now I know that was part of what was going on. So the doctors started testing and they started at first kind of slowly they picked a few conditions and they start testing for them and then they would all come back fine and like said you know my symptoms were getting worse. I was spending more time in bed. I was working a nine to five office job and I was finding I would come home from work and just have to just sit you know On the couch and do nothing, because I just I was so tired, and I was going to bed 7pm Some nights. But then also, I still haven't worked out really, really good. And so the doctors kept testing and they, you know, now it's sort of expanded and they start testing me for everything. But all the tests were coming back fine. Wow. And say, like, I had specialists say to me, you know, on paper, you look perfectly healthy. And it wasn't that they were denying what I was experiencing, they were just saying, like, there's nothing in here that is telling us what's going on. I had really good doctors actually. And so it took six months, because chronic fatigue syndrome is a diagnosis by exclusion. And my daughter wanted to get me in with an infectious disease specialist, which was quite tricky. So it took six months of tests, and and doctors and I had everything, like I had the full body CT scan, I had a brain MRI, and they found absolutely nothing. And at that point, the infectious disease specialist formally diagnosed me with chronic fatigue syndrome. And so I learned later that there's two ways that chronic fatigue syndrome can come on, it can come on, sort of very quickly, like like a cold or flu would, and you just get sick, and then you're sick. Right, I had what's called an sities onset, which they told me is about 40% of cases of chronic fatigue syndrome, which is that sort of slow, sort of creeping, it's like the jaws music sort of coming for you. That pattern and so that went on almost for a year, where it would get really bad, and then I'd have some good days. But then one day in September 2017, I just like had that where I like I was like I have to lie down. And it just never didn't stop after that. It just in two weeks, I might have one good day where I could get up and do some things. But like I at that point was so sick, I had to take medical leave from work. And I was at the point where I couldn't get up off the couch or the bed a lot of the time. Like, I didn't have the strength to lift myself. So I had to get my husband to help me
and can usually share with us there's a physical experience of illness, and there's an emotional journey of illness, which is just as difficult. And I'm wondering, that sort of feeling of being really well. And then the fatigue coming again, how were you managing emotionally, this level of experience.
It's particularly that year, it was so confusing. In terms of the narrative we think about with illness, like any other illness or condition that I was aware of you you get sick, either gradually or quickly. Yeah. And then you either like sort of you're at a plateau, and then you hopefully get better, or you get worse and you die. But this sort of like on again off again, was was baffling. And it was like it was so hard to explain to people. Because when people saw me I was obviously it's still like this today, when people see me, I'm generally feeling good. I also get energy from talking with people, like if I'm you know, if I'm seeing friends, and and you know, feeling good from talking to them. And so they don't see me when I when I'm too tired to sit up. You know, even I had three days last weekend where again, it was at the point where even just like I could get up and I could sit at the table and eat a meal. But that was exhausting. And all I could think about was going back and lying down. So yeah, emotionally it was it was it was really traumatic because I was on a good day, I felt like I couldn't be real. I must have made it all up.
Yeah, I think this is really common, particularly for women with invisible illnesses as well. So I have a couple of conditions and I have vertigo. So instead of my migraine, I get vertigo, but you can't see me having vertigo, except my shoulders come up around my ears. But I look well, I look incredibly well. And I think this is a really interesting conversation to have. Because I have this thing of like, well, it's nice that I look well. But then I have to explain or share or justify that I'm actually not well, and that's exhausting. And I don't want to do that. And one of the things I'm curious with about you is you've had this grad life you've then gone on to employment, you've got all of this friends, network and social world. How did you navigate that? Not looking as sick as you were actually feeling
was? Well, part of it was at first I didn't even really talk about it except that if I had social plans I was I was cancelling them. And I was telling people like, I just don't, I don't feel well, I'm not well enough to go out. And that was fine. But I, for example, was doing my thesis. And I didn't want to tell my supervisor that I wasn't well, because I felt like it was just an excuse. And but I was really struggling with the thesis at to a to a degree that I wasn't even willing to acknowledge to myself. And then I, I'd sent her a draft to look at and she, I got some really brutal feedback, which I was not accustomed to, because normally, I'm an excellent student. And I remember sitting there trying to work through a rewrite of the thesis. And I felt like I couldn't hold the concepts in my head, I felt like they were like sand. And I kept trying to, you know, I'm trying to combine these academic theories. And they were just slipping through my fingers. And I realised looking back on it, that that was the fatigue, that I was experiencing cognitive fatigue. At the time, I just had no frame of reference for that. And I just felt like, oh, I wasn't concentrating hard enough. I wasn't working hard enough, like whatever it was. So I never, I never mentioned it to my supervisor. And then later on, I, I actually, at the graduation ceremony, I told her, I'd realised how sick I was becoming. And with my work, it was the same I didn't mention to them for a long time, I would be sitting there in the office. And I would be trying to accomplish just basic things. And if I had to change my screen, so I had to go for my email to open a file, for example, do you know to make a change in a document, I would click away from the email. And in that specific time, I would have forgotten what I was trying to do. It's like walking into a room and forgetting what you've got in there. Yeah. And so I would just be sitting there at the desk, just like randomly clicking things, and realising that I couldn't accomplish anything. And now I'm going to turn for that as presenteeism when you're present, but you're you're not accomplishing anything, because you're not well enough to as opposed to absenteeism. Yeah,
I sort of think of it that we often hear in the community of chronic, sorry, of brain fog, which I just had in that second. And just that sense, like this is very familiar to me. Because there's that sense of my brain. I actually can't think even though I'm right there sitting and looking at something, I haven't actually done anything hard or complex. But I can't hold the information with any clarity, and super frustrating. And it also can feel like it's some sort of personal failing, as if there's something wrong with you. And I'm just wondering whether you look at it exactly. Like that's an internal conversation you've had as well.
Well, I mean, by the time it got really, really bad, I had been seeing the doctors and we knew it was probably something like chronic fatigue. But I got to the point where I was still going into work. So at first, I was still working my normal hours, but it would get to 3pm. And I knew I knew I wasn't not going to accomplish anything after 3pm most days. So I had to get as much done as I could before that because from three to five, I would just sit there sort of looking like I was working. But it got so bad that I lost the ability, I became illiterate, like functionally literate, because I, I couldn't remember from the start of a sentence, I couldn't hold what was at the start long enough to get to the end to put it together in a coherent way. So while I could read each individual word, I could get no sense from the sentence.
And let's just pause for a moment I think it'd be good for our listeners to know what work were you doing?
Oh, okay. So, I was working for the state writing organisation, which is now called Writing New South Wales. And basically, I was the programme administrator. So what what a large part of my role was programming our We run about, we did at the time at writing courses a year of in all kinds of creative writing poetry, novels, write nonfiction essays. And so I was I was administering that programme, but one of the one of my responsibilities was answering the phone. And, and taking we were a membership based organisation. So taking member details, so someone would call to change their address or phone number. And I so people call on the phone and I would have such a hard time taking down their information. I at some points, just like I'd be struggling to remember how to how to write the numbers. I have really, like visceral memories of just like that, like trying to tune out all the other noise in office and just focus so hard on what on what they were saying. I had been offered a PhD Scholarship after my master's and just it just made me realise how many Much like health is a intelligence requires good health that you can you can't perform at a cognitive level if you're if your health isn't there.
Yeah. And there's also that sense, what I'm hearing is, while there was this long onset, there was actually loss, there was actually this consistent sense of losing capacity that you previously had. And that changes your idea of what you can be and do in the future as well, that there's a grief and a loss for things over this time.
It was very confusing, because because it was inconsistent. Yeah, it wasn't like some days, I got to work on your spine, and I could read my emails, and I could answer the phone. Like it was, it was, it was never once once it came on. So because of that, because of the insidious onset, it was so inconsistent, and it's such a blurred time. And I had, I had, like, I had really good days. The very, very last thing I did before it came on full time was I had a friend visiting from Japan, and I took her for this three hour crosswalk up in Sydney's northern beaches, and I and it was one of my favourite things to do was one of my favourite things to do. And I did that, and that was fine. Like, we were able to do that. And then the next day, I couldn't get out of bed. Um, but but because it had been so inconsistent. I didn't know that it was that it was here to stay. And so with my work, like the conversation kept being like, well, maybe I'll be okay. In two weeks, maybe it'll be okay in three weeks. And they said, they were sort of thinking, what do we need to hire someone to take on parts of your role? And how would we do that? Because if you're going to be fine it like, I think maybe we'll just go away, like we still didn't even have there was there was about a two month gap between when it came on full time. And I realised, okay, this is not this is not just gonna stop. And when I actually was diagnosed, and I realised I realised just how long this was this was gonna be
and how did you find your workplace? Because obviously, this is a small environment, I imagine. And while you might have kept it to yourself for a while, there comes a time when you can't not speak about what's happening. Yes,
I think when I, when I started, I don't want to start seeing the doctors but when it got to the point where I was losing significant time, and I was starting to call in sick more regularly, because prior to that, I could sort of hold off to the weekend, and then a crash over the weekend. And when it got to the point where I started calling in sick regularly, that's what I had to say, to my employer, that there was something going on, I didn't know what it was. But they were they were fantastic. It's a very small office, there was only seven of us working there at the time. And they were, they were really wonderful. I mean, help that I'd been there a couple of years, I had a good relationship with them. But they were they've been and they still are still I still work there. They've been so flexible. And so you know, willing to do what they could to keep me on the team. And my husband, actually, after I got diagnosed, my husband really wanted me to quit. They want he he because because it's a not for profit organisation. It's, I mean, the, you know, it's the pay isn't amazing, you know, as not for profit is it particularly in the arts, but, um, it was a job that I really loved. And when I was part of a community that meant a lot to me, because because I'm a writer, and she really wanted me to quit because he felt that I should be focusing as much as I could on getting better. But I had had to give up everything else like just one by one by one, I'd have to give up everything else I was doing, you know, because I used to be, I'd been doing stand up comedy regularly for a year and a half. And that was a first that was a first thing I had to give up was because it was just just really weird. It this was very particular because I loved doing stand up comedy even like I had I had sets I'd get up and do my five minutes, and no single person would laugh. And it wasn't that I doubted the material because I've done that same set, you know, the night before and people laughed. So I do I do my comments. Nobody laughs I'd get off the stage. I'd be like, Well, I don't know what you guys did, like I had fun. So I loved it. And then all of a sudden one day I just found myself like really not wanting to go out and do my set. I was like, oh this is really weird. Like normally I love this. And and then and and what I realised was it was my body being like you don't have the energy to go out in the evening and and be in this loud environment with all these people and you don't have the energy to memorise you know, the your changes to your material. That's you're asking too much of me and I can't I cannot do this anymore. And so I went out a few times I tried to force my way through it and it obviously went terribly in the night. And so that was the first thing I stopped was like okay, well just wait till I get better. And then what you know whenever we were All this thing still started again. But and then I've given up, you know, just other commitments I had to start calling. So because my work was willing to let me just work two mornings a week, basically, they brought in someone to fill my role temporarily. And they said, If you could just come in a couple mornings a week, and just support her, like, make sure she's on track, and work with her. Like, we can make this work. And then and then your job is there for you if you're if you're able to come back. And so I really did not want to quit because I realised if I quit, it was like the last 10 pole holding up my holding up any structure in my week, otherwise, I would just be home seven days a week, all my family is in Canada. And I've got I've got friends here in Sydney, but I'm really the only person I'm really close to is my husband. And he was working, he was working the equivalent of two full time jobs because he had a full time role. But then he also taken on this project he was offered, that he was really excited about that, like, eventually did become his new full time role. But in the interim, he had to do both at the same time. And that meant he was working up to 14 hours a day going in on the weekends, he was he was not around. And so if I if I gave up that job, I was going to be 100% alone.
Unknown Speaker 21:24
And what's interesting is that you were actually able to negotiate and they were negotiating with you to keep you that's what I'm hearing that actually it wasn't just you negotiating to keep your job they were negotiating to keep you which is extraordinary and beautiful.
Unknown Speaker 21:41
And was I was lucky because I had I have had a very particular set of skills, like in terms of my background, in education, but also online teaching. So I have experienced in curriculum design and and and delivering workshops online. And they were at that time looking to extend out their courses into the online space, which so good that we did that at that time, because we were ready when COVID hit we had built in an online component. And then we just basically flipped everything to online. So that was good that we did that. So I was I was lucky in that, like I had something they wanted that that motivated them. But also that they were just, you know, lovely understanding people, which I think makes a big difference as well. Like, I think it helped that I had skills that were in demand, but they they're also just lovely people.
Unknown Speaker 22:33
And so you've had this experience, you get the diagnosis, you're also spending a lot of time at home, lying down and your husband's working. And you also write two books that hadn't happened. But share with us the real raw truth of what did that actually mean for you.
Unknown Speaker 22:54
So the writing is something I've been doing for a long time. And, and people people say to me, you know, I'll be talking about being sick. And they'll be like, Yeah, but you wrote a book. And it's like, okay, wait, don't stop, because books don't just don't just get written. That's particularly when you're, you know, an emerging writer, and you're new to writing and you're trying to figure out your writing. So it's a super long story. But the very condensed version is that I started writing a book in 2009. That was based on my great grandparents survival of the Armenian genocide. And it was a topic that I needed to research and at that time, so in Canada, I did a big research project with my family in Canada, and I went to the community where my dad grew up and interviewed all the community and just, like learned, learn the stories, but learned also how much had been lost in terms of their stories. And, and that propelled me to go to Armenia, the thesis, the first thesis I wrote here in Sydney, in 2011, was was connected to cultural identity in the Armenian community. So I started so I started writing this book back then.
Unknown Speaker 23:55
And this is years and years before you were unwell. This is you at your peak working.
Unknown Speaker 24:01
Exactly, exactly, exactly. And I thought I was really striving to develop a writing practice at that time. And, you know, it's hard to put yourself out creatively and to do unpaid work and did not know if it's going to not know if you're, if you're talented enough, or if you have the capability to develop those skills. It's so intense, creative uncertainty. And I was also coping with anxiety at the time. So that all that was going on, and but I kept pushing. And I saw I had a friend who was sort of wanting to do the same thing. And we had this really lovely friendship where we would, we said, what we both want to do this so why don't we just get together? We'll you know, we'll set a certain amount of time we're gonna get together at a cafe or library for an hour, two hours, and we eventually build up three hours, put our phones in our purses, and just and just work on our projects and then and then we had each other to rely on. And so once we've done that for several months, I found that I could then I was in good into a good routine. And I could just sit down at home and do it on my own without all that sort of mental uncertainty, you know, making it too difficult. So I've been, I've been building up that writing practice for years, and had had a couple short publications and literary journals that, you know, I started to build a portfolio, I'd written two full manuscripts by that time. And I started, I started out to be still in 2015. So that book I started a couple years before getting sick. And it was, I'm always working on multiple projects at once, like, never just work on one project and started that in 2015. I was working on something else. And then and then I got into the second master's programme, which was the one the one I was in when I got ill, and I was doing a master's of creative writing. And so they offered me I applied for this thinking, There's no way I'm going to get into this. And if I get in, there's no way I'm going to get a scholarship. And it was going to be really expensive if I didn't, and then I got an I got a scholarship. So I applied with a very particular project, which was to write about this series of terrorist attacks that were connected to the Armenian genocide that happened in the 70s and 80s. They're connected to the denial of the genocide, they were an effort on behalf of certain Armenian terrorist groups, to get the Turkish Government to acknowledge the denial and acknowledge the history. And they were doing that by attacking Turkish diplomats all over the world because they wanted to gain international attention. And one of those attacks was here in Sydney in 1980. So I wrote for the master's degree, I wrote a creative project that was about Britain from the point of view of one of those terrorists, and an imagined, you know, he's a fictional person, but it imagines like what it would have been like to be that terrorist. And so that's, you know, that's a 12,000 word project is a very short project, like I'd standard up, it's going to be about 80,000 words. So I'd written this, I'd written this book, you know, first draft was 200,000 words, and every draft cut down in time down to 75,000 words, shopping around to publishers, but I just like, even though I got good feedback on it, there just wasn't there wasn't a market for that book.
Unknown Speaker 27:13
So I did did that project. And then, so I had that I had this 12,000 word story that's like, Okay, what am I, that was great. I got the master's degree, but it's like, what am I gonna do with that. And so that was sort of sitting there. And I, I've been kind of working on this a little bit, just on the side, because it was fun like this. This, you know, the one books are genocide, it's really dark, it's really serious. And you can see by the cover, it's like, this is a dark, serious literary books. And then this book is like, at that time, I was using the stand up comedy to sort of fuel the writing of this book, which was supposed to be very humorous. And because I was experimenting, I was trying to see like, what kind of writer am I going to be like, you know, I didn't know if I was even gonna write fiction or nonfiction, or like, I just knew wasn't good poetry. I knew that. So, um, so this is all happening over years, and in tandem, and then, but when I got sick, I have everything slowed. Like I said, like I said, like, there was, there was a few months, there was a few months where I was just, I couldn't do anything, because I was just, like I said, I was illiterate. And I just everything, like brushing my teeth was was was a challenge. But once I got to the point where, you know, at that point, everything in my life had stopped other than a few hours, at work every week, and, and maybe, you know, maybe a friend would pop over once or twice, but other than that my week was, was totally empty, and most of that was spent in bed. But when I had a pocket of 15 minutes, or 30 minutes where I felt, okay, we had these projects that were on the go. And that was just a delight to be able to sit down and engage in them. And because I'd already developed a writing practice, and I'd already had a few publications. I was just, I just, it was one of the few times I felt like myself. Yeah. And so I kept and so I was able to keep going, because it was one of the few things I could do at home, in the quiet like, I didn't need anyone or anything else. I just had these projects and kept going with them. So so this one, like, as I said, The this is fiction, it's a it's the novella, the 12,000 word novella, and then a collection of three essays. And so there was an opportunity to enter the novella in a in a competition. And the competition encouraged you to write an essay about the writing owls. And I was like, Oh, this is great, because I've got a lot to say about the writing of this. And so I wrote just, you know, a 5000 word essay. And I entered that in with the novella, and so ended up winning. It was a it was a it was a finalist, and that meant that it was published digitally, but then the publisher came to me and she said, Look, I'd love to publish this. I'd love to publish this as a book. It's not long enough to have a spine. Do you have any more essays, or or other works that would would sit with it. And I said, Oh, well, I've got these two previous publications like from before I was ill. So I, so we just combined all of that. And then the publisher did a fantastic job. She included a lot of my photos from when I was in Armenia. So like those are these are Armenian dancers. On a it's it's a gravel soccer pitch, one of the schools I visited. So the publisher did an incredible job. But you can see it's a very skinny little book. And most of it was written really before I got sick. So that came out in 2019, which was just a real joy. Like we had a we had a book launch. And after my wedding, it was just one of the absolute best days of my life. And it was wonderful, because at that point had been in Australia eight years, you know, we had 100 people attend the book launch. And like all, every single one of them other than my husband, every single one of them were people that I'd met since you know, since arriving in Australia. And my everyone from my work was there. And I'm
Unknown Speaker 31:02
from the army, Leila. Now, you will well enough to go to your own book launch.
Unknown Speaker 31:06
Yeah, by 2019. It would this was like April 2019. Yes, it was a wonderful and had to say it's like anything like that. I said, I had to clear the week. But it was I felt at the book launch. I felt amazing. Afterwards, I felt terrible, but it was very much.
Unknown Speaker 31:24
And I think this is one of the conversations that you and I've had as well, including today, we had this conversation over Twitter, about managing capacity. And this equation of if I want to do something, then I have to work out what the cost of that is going to be or what the price is going to be. And as much as it would be lovely to be able to do everything. I've sort of learned that that just is part of the practicality of living with chronic illness, and you sort of work out? Well, I'm prepared to pay three days in bed to have this one moment. And it feels to me like that's often connected to our identity. And you've you've touched on this, this notion that writing was the one place you felt you were connected to the fullness of your identity. And I'm wondering if there's anything else you would like to share with people? Because you've spent time thinking about this process? Identity that illness before? Now, what sort of thoughts and yeah, consequences or helpful tips you would have for people going through a transition in their identity?
Unknown Speaker 32:36
Yes, that was the one thing for me, I felt really lucky. Because as I said, I'd been I had a series of years when gradually committed more and more and more to the to the writing practice and to the idea of myself as a writer, which was terrifying was terrifying to do that. And for example I've been I've had, I've had a different job that had nothing to do with writing. And I left it to work for the writer Centre, which meant taking a 50% pay cut. But I was willing to do that. I mean, I was lucky enough that I was able to do that, because my husband has a good job. So I was able to do that, because I just I knew I wanted to commit to the writing community, and I unto to my future as a writer, so when I got sick, I already had that writing practice. And the one thing about that, you know, getting sick really made me realise if I can, if I can't do anything else, I know I want to do the writing. And that was that was so reassuring was to know that, that actually, that was the one thing that really really mattered to me, and that I was still able to do that. And even though I lost so much, so much else like like the ability to go, you know, for a hike, you know, I live in a city that's full of gorgeous, like coastal hiking trails kicked, cool. And we live, you know, close to the Blue Mountains. And I can't go and do any of the hikes there. But like, so, like still so much, but I could still do the writing. And,
Unknown Speaker 34:06
and did that change your sense of in any way, the sense of you as a rider because I want to, you know, we're gonna share also the things that you've written about also include writing about chronic illness, and very personal stories.
Unknown Speaker 34:22
What so it's interesting with this book, because as I said, I was doing stand up comedy, and I was writing this book that I had intended to be it stopped. The original idea was it was gonna be a collection of humorous essays each around a topic related to, you know, Australia and things I learned about Australia as an outsider.
Unknown Speaker 34:39
And as your second book that we're talking about, yeah,
Unknown Speaker 34:42
yeah, exactly. Well, my second published book, because I've written about five manuscripts, but this is the second published book, which came out in June 2020. And
Unknown Speaker 34:50
it's called How to be an Australian. Yeah.
Unknown Speaker 34:52
And so actually here, um, so, I, I had written I had I had a lot of writing I'd already done like, I'd done a partial mentorship with a with a humour writer here in Australia. And I, I had all this material, and I had just sort of started shaping it and experimenting. And one of the things that I'd realised was that the idea of the collection of essays wasn't going to work, it was going to be a much stronger book, if you'd had a chronological story that sort of pulled the reader through it. So we'd say, sort of re envisioned it and started with like, you know, day one, we arrived in Australia, what's it like? And so when I got sick, I had all this, this humorous material that I'd been collecting, and we've been working with and experimenting with. But then when I came back to it, and as I got back into the writing, you know, I could do these little bits of time. And at first it was only a few times a week, and then it built up and built up and built up. And I was using sort of a structured approach to building up my capacity that that the doctors had given me and taught me how to do. And what I found was I just the humour was not there. Like I just an all all the humans book 90% of the humour that's in the book now was written before I got sick. Yeah. What I wrote after getting sick is the is the emotional core of the book, that's when the book started to take on this emotional depth, which is you know, about, about sort of moving from what's called the Odyssey phase in life, which is when you so you, you graduate from from university, you finish your schooling, and you've got these like, beautiful, wonderful years of like being an adult, we don't quite have the responsibilities of an adult yet, like if you're not married and don't have kids, and maybe you're not committed to a serious career at that point. But you got this incredible freedom. And I that was I had waited for that I did not enjoy being shackled. I wanted to be an adult so badly. And then as soon as I graduated from university, I moved to South Korea, I started moved to Spain, ended up in South Korea, that's a different story. But a year in South Korea, I went and volunteered in Peru for six months and travelled around South America and travelled around Southeast Asia. I went lived in Mexico and worked for a year I loved it. Then I had the opportunity to get married to someone I really, really loved. And he had a very serious career. So I managed to 28 years, but I convinced him to move with me to Australia. And I said like, okay, like, we can get married, we can do the adult thing. But like, let's just need you to experience life outside of Canada for like one year. And then then after you've done that, you want to move back to Canada. And we'll figure things out from there.
Unknown Speaker 37:33
So all of the part of the book that covers this you had written before you became unwell. Well, I
Unknown Speaker 37:39
had written I know actually, most of what I've written about was just comedic things about Australia like about like, they've got these. They call them biscuits. They've got these cookies called Ice Bobo and they look like they look like a woman's private parts like, like, it's like this big ice with like, like shredded coconut. And like that's to me like that's the first thing I look at these. I'm like, ice Bobo's
Unknown Speaker 38:06
my childhood cookies like that is these are the most favourite thing that my five year old self loves and love. So I'm really getting a feel for the outsider perspective on Australian culture.
Unknown Speaker 38:21
And there's so much of that kind of stuff in the book. Like there's so much of that or the fact that like kookaburras has had been used in Hollywood movies as the soundtrack for monkeys, because some Hollywood producer back in the 30s It turns out decided a Kookaburra sound more like monkeys than monkeys actually do. So just all kinds of random stuff like that. So that was all written before I got sick. But then after I got sick, it was writing about how I felt like when we were mostly for a year, and that first year was was great. But then it was like when my husband said like, I've got a really good job here. And we both really liked it here. Why don't we stay for a while because open ended. What's just you know, I can get a work visa through my work. That's for four years. Let's just see what happens. And I realised Oh, okay, this is this is adult life as you as you think these compromises what we're staying here for his career, which was fine. But it meant that I had to sort of I didn't know, I had no control. And all of a sudden, I was like, I finished that master's degree, I had no job, the career that I thought would, you know, develop from that master's degree was that was I was totally wrong about that. So I had no career prospects at that time. And then it's this this vacuum in my life. Now I'd been this traveller, there's all over the world. And now I'm like, I'm like, Well, I like Sydney, but like, I don't have a life here. Like, I've explored everything. I've done all the tour stuff like and now I'm sort of sitting here and so into that vacuum, just anxiety just like all of a sudden, like, I was just I just my anxiety started to start to spiral and get really bad and so hadn't intended to include? And then what does that mean for your marriage? Like, what does that? What does that? What does that? How does that affect the marriage, when you've got one person who's got a great career path and prospects and, and is perfectly happy to take that year by year and you've got someone else who just started smiling and being like, I don't want to I'm doing myself, all I know is I'm trapped here. And it's not that I want to leave. But it's also not that I want to stay. So I had not planned to put any of that in this book, right. But that became the core of the book, because I think because at that time I was coping with, with challenges in the marriage. And so it funnelled all that emotion funnelled its way into the book. So the book is on the surface of very, very funny book about an outsider's perspective on Australia, and how I think I suppose are inappropriate. But at its core, it's about being being young, being an adult and coping with what that means and being married and making decisions, you know, in an adult way, and, and coupled with mental illness.
Unknown Speaker 41:06
And then you've talked or talked about this, and you've written about it, and I think it would be beautiful to explore here for our listeners as well. The marriage was something that was complex, and the illness came along. So I'm wondering, where you, you've, you know, you've talked about actually what was going on for you? And how do you how do you manage somebody having a career in bloom, and the other person having the actually, it's a struggle to work out who I am in this moment, and at this time, and you have to work out your own life in that while somebody else is blooming? Like, none of that is easy. So how did you work through that?
Unknown Speaker 41:51
Well, I think I mean, my husband and I are very different people. He's, he's an accountant, he was an accountant. And he was an accountant for, you know, up until very recently, so for a long time, he had about 20 years as an accountant. And we, we love each other very much. But we're, he comes from a family and a family culture, where you don't talk about emotions, like he's very English and that size, like I'm very strong as well, like, you think, like, you just like, just don't just pretend all that stuff doesn't exist. Yeah, and I come from a family that's a lot more emotive and expressive. And, and also, just as an individual, I'm just someone who like, talks about emotions, a lot, has a lot of emotions, has a lot of big emotions, all they're always happening all the time. So we had those differences. But I think, you know, our differences had been building up and Lina sort of those cracks were starting to spread. But because we've been so busy, like, once I, I had, you know, sort of started to figure my career thing out, and Steve was wonderful. He, he encouraged me to lean into the writing, he said, you've got this time, you want to write this book, just do it. And so actually, like, you know, in 2012, like, sent me off to Armenia on my own for two months, so I could do my research and like, like, funded that and was very, very supportive of, of everything. What happened was, we both been applying to postgraduate programmes, for a few years. And it happened that we both got accepted and both got into Master's programmes with scholarships at the same time, and he was working full time and doing his programme full time, I was doing my programme full time and working part time. And we knew we were like, when it started, we're like, alright, this, this is gonna be really hard, two years, but we're just gonna push through it. And when it's done, we will then make sure to take some time to reconnect and and do more fun things together and take more time off together. But we knew we're going to have two years that we're going to be very, very intense.
Unknown Speaker 43:57
So what I'm hearing in that is you said, we're actually two individuals. We both have aspirations from our individual self. And we're going to make an agreement about how we're going to manage this next two years of time while we each pursue our individual goals. Is that Is that an accurate summary?
Unknown Speaker 44:19
Yes, absolutely. So and we did and we did and we were, we were, you know, good partners. And not there was a lot of stress, but we were, we were good partners until I started to get really sick. And unfortunately, that in 2017, when things got worse and worse and worse, he was his programme was incredibly stressful and he struggled to cope because I think because he didn't anticipate the ways it would be stressful, because it wasn't just stressful because of the workload. It was stressful because of personalities and expectations. Right. And so, so he was he was under a lot of stress like he his 40th birthday. happened during that time. And I just like his skin just started to turn grey from the stress. And I had said that my programme wraps up in April, yours ends in October, I will, you know, I need a lot of help now, but I will be there for you. And I will make sure that I get you through the end of your programme. And particularly September and October, we're going to be quite difficult for him. And, of course, that is when I got so sick that I like couldn't function. And I think like, in some ways, he was really great about it, because he he never, he never complained. He never, you know, he encouraged me to leave my job so that I could focus on my health. He never complained about having to take on, you know, 100% of the financial burden. He paid all the bills, he did all the chores, he did all the cooking, like, in a lot of ways he was wonderful. But he would not talk to me about being ill. Right? Didn't he came to only a couple of my doctor's appointments. One of the appointments he came to was with the infectious disease specialists who said, you know, we got chronic fatigue syndrome. That's the only explanation for this. And he said, Generally, it lasts three to five years, it could be 10 at the outset. And we walked out of that appointment and Steve went, isn't that great? You're going to get better.
Unknown Speaker 46:21
Wow. So you heard completely different things in that appointment.
Unknown Speaker 46:27
It was skipped over everything I was going to have to go through.
Unknown Speaker 46:30
Yeah. And that, for me, brings up the notion of being unseen in your actual lived experience. And that in itself is stressful and distressing.
Unknown Speaker 46:45
Yeah, yeah. And I could not convey that to him. He just was not willing to hear that. And, and he kept telling me, Well, you just got to be positive, you're just gonna have to get through. Wow.
Unknown Speaker 46:56
Yeah. And how did that make you feel like these that starts to widen the gap, like I can see then, okay, this illness is physically demanding. It is personally emotionally demanding. And we are not on the same playbook in our marriage agreements about what this actually means.
Unknown Speaker 47:18
And I had, like, I mean, my I had, I could call my parents via Skype, and had a couple of close friends I could call but the time difference between Australia and Canada is quite difficult. And and also when people can't be there, like I think I would have had a different relationship with my parents in terms of like coping with the illness, if they had been here, because they were far away. And they couldn't do anything. I didn't want to burden them. Like, unnecessarily like I told them what was happening. And I was honest, but I didn't tell them how hard like certain aspects of it were like, like that aspect. Like, yeah, and I knew what could have been worse. Like, I'm very grateful for everything that Steve did do. But I like things started to get bad things started to get really bad because a like he wasn't here. And he could have been he could have physically been here more, because he could have like in the evenings come home and work from home, instead of choosing to stay at the office. But I saw that as like he just didn't want to deal with me. Yeah. And so I was alone from when he left, you know, 830 in the morning till 930 At night when he came home. And I'm just like, I told him, I'm like, I cannot cope with being alone this much. But he wouldn't come you would not come home earlier. And there were times where like, like, I would call him. And I think it was hard for him. Because one day I would be too tired to get up and I would need help getting up and he'd sort of act like I was burdening him by asking him for help, like getting up from bed. And but I was like, I know, like the day before, I'd been able to get up on my own like very slowly and difficultly. But I could do it. So well, like the inconsistency did not help. Because I think if had been the same every day, he would have just been like, Okay, this is
Unknown Speaker 49:08
what I need to retain.
Unknown Speaker 49:10
Yes. But because it was up and down, I could I don't think he actually thought I was exaggerating my symptoms. Yeah, but I think she just maybe she wished that I was because then I could just stop it.
Unknown Speaker 49:23
And I think there's something about the invisible pneus of it, that there's no sign to him of the difference. And I would like to pause in this moment, because I think this will be really useful for people listening. One of the things I found for myself is you can't see the vertigo, but there's a particular type on the day where there's a vertigo caused by something else where my eye movement changes. And on those days Cliff can tell that I've got vertigo interest and on the other days it's the vertigo comes with two different conditions. ones with comes through your ears, which is benign with crystals in your ears, and the other one comes as a result of the migraine. But I found freedom in at least on some days, he got a physical sign, and could see how dramatic it was by watching my eye movement. So I found that really liberating. Because there was validation, he could actually see it. On the other days, when it's caused by a migraine, you can't see it, but he had some sense. And so there is something about the invisible illness of nobody actually being in your body and having the feeling and you are trying to minimalize it to the best of your capacity and only ask for help in the most extreme cases. And that's what I'm hearing was going on, not just for you personally, but in the marriage with all of the pressure that was building and building through the marriage. So where did that all go for you, Ashley?
Unknown Speaker 51:07
It got really bad. It got to the point where when he did come home, I would use all the energy I had and several days worth of energy. And we'd just often be fighting, we just and I bugged my emotions would get worked out. And all of a sudden, then I had energy because I was so worked up because I'm so mad. And I just kept trying to get through to him, like just how much I was suffering and how much he was aggravating it. And if he could only just like, like, I would felt like I was not asking for a lot. Like I just wanted him to come and sit with me and acknowledge what I was going through. Like, it's great that you're doing the dishes and you're getting the groceries and all that stuff. Like that's fantastic. But actually, like, don't do that for a day or two, I don't care, just please come and sit with me and just be with me, because I'm just suffering. And when Nikki bought brought up grief earlier, and I just felt like that whole completely unacknowledged. And I just found that just it was like living with a robot. And I just I couldn't bear it. And it got to the point where if I had been well enough to leave, I would have left. But at that point, I couldn't even there was no way I could fly. As far as Canada unified, I made the decision to actually go home and stay with my parents, I couldn't physically get there. Yeah. And also, I would have no money. Um, but I also knew that if I was well enough to be working until I'd be living my life, things would not be that bad. So then it's kept going in this cycle of like, well, it's my fault, because I'm ill, but that's not actually my fault. So he needs to do something because I can't do anything. And then I try to explain that to him. And it start off trying to explain it rationally and then you know, just so
Unknown Speaker 53:01
and he's got his list of all the things that he's doing and the way he's showing love, and it's like you're yelling at each other, but nobody can actually hear the two hearts in their vulnerability because you're eating your own vulnerability
Unknown Speaker 53:15
when he would just you would just shut down and stop talking to me that was that was generally you know, not adopt been previously in arguments that wasn't a new thing. It just like it was just everything was so exacerbated. It was so bad. So it got to the point where I said, like, look, we have to we have to go to counselling, because like, what else can we do here? And I'd say there were good times for White to thought, you know, pose like on the bush or do something like that. Because I'd seen I'd seen all kinds of you know, counsellors and psychologists for anxiety and depression. Previously my life worse, he had never done anything like that. And I knew it was he had gotten very bad because he agreed, he was like, Yeah, we should we'll Yeah, that's fine. If you want to set that up, we can go do that. And so I was lucky again at that point I was well enough to go and you know, we were going once every two weeks for an hour or so I could I could go and even I had an explained my condition to the counsellors, the counselling office, and they had said that they would waive their normal like normal, you need 48 hours to cancel. Great flexible with that.
Unknown Speaker 54:24
So this is so wonderful that even in that time, you still took the risk of telling people one because it was necessary but you took the vulnerability to tell people as well
Unknown Speaker 54:33
whilst because it wasn't willing to lose that money like this is expensive. I'm not willing to lose this money and again, they were very good about it. Um, so I think maybe maybe there was one time where I actually had to cancel last minute but so so the, you know, just having the space to talk, you know, with with a soccer referee there just changed the dynamic a lot. And that helps so much. But also they gave us a lot of tools. And I mean, it was, it was hard work because we had to, we had to learn these tools and learn how to use them with each other. And, and, you know, Steve finds, because of his upbringing, he finds talking about anything emotional exhausting. So he there was he could only his tolerance was very low, we could only do so much. And then that was kind of it for him. And then we have to wait a few days before we could try to do anything else. So it took some time. So and it wasn't like I was it wasn't like, there was like a moment where we were like, okay, like, that's, that's, we can know, things are better. But it was just gradually, like looking back over months, you'd be like, Oh, thanks. And it was sort of the same as the honest you'd look back over several months and be like, okay, like, I can see the progress I've made here. Like, I actually am getting better. It's just like a tree growing so slow. Um, so but I think one of the most valuable things that the counsellor said to me was that some people use work as a safety blanket. And that, like, that's how they process their grief is they go to work, because it's a safe space for them. And that made me realise that like, that made me able to forgive Steve for all that time. Because he, like, I realised that I've just been looking at it through my perspective where I would not, I would never use work in that way. But I could, I realised that she was, you know, that was what he had been doing. And so that didn't make it okay, but it made it forgivable.
Unknown Speaker 56:37
And were there anything in particular? Now, how would you describe your relationship? Firstly, like, what is the process been like there now for you? What's the outcome?
Unknown Speaker 56:50
It's so much better. It's amazing I, because I didn't, when we went to the counselling, I did not believe that counselling could make our relationship better than it had been before I got sick, I was just hoping the counselling would sort of be like a band aid that would get us through the worst of the illness. And then as I could return to the person I had been before, because Steven, I lost a lot of a lot of the things that he and I had done together, that sort of made our relationship good, like going hiking, for example, all of a sudden, he had lost the person that, you know, he did those things with. And so our relationship was like our relationship just was like, maintaining the household, like, there was nothing else. And we been in a public speaking club that we had co run. And that was, again, one of the things that I had to quit very soon. So he had been going on his own for a while. And so I see what sort of tell me about things that were happening there, but I couldn't be involved at all. And so I was just hoping we could just get through this and then get back to normal. But actually, it was so good that we took the time to learn these tools, and to learn to interact with each other differently, and to better understand each other's underlying psychology. Because now our marriage is so much. It's just such a relief. It's just such a relief, like it just and when we have problems, we can work through them, we're so much better at just actually talking about what the problem really is, instead of talking about how we personally feel offended by the problem. So it's been really, really good. It's been, it's been such a relief, because I still like I still in home a lot. I still, you know, I can see friends more often now, but still nothing. I used to be out all the time. Like I used to be out four or five nights a week. And Steve had and that was another factor was that Steve is he's a very introverted person, he works very hard. He likes to come home and unwind by himself. He doesn't need a lot of socialising. And so that worked well for us. Because I was I was out I was doing my things I was with my friends, I was, you know, going to writing events and book launches and doing my stand up comedy. And he had his time alone to unwind, and then all of a sudden, he has a sick, unhappy person in the house all the time time. So and I acknowledge that I knew that. But now, I mean, it's still it's still very rare that I go out without him like, in a good period, it's maybe once a week or so. And I try to try to if I can, so he can have that downtime, but it's like even though I'm here a lot and we're you know, we live in a one bedroom, tiny apartment in urban Sydney. Like we don't have a lot of space. There's there's like one door he can close basically unless he's in the bathroom is like one door that can separate us. So but it's so much better now. So it's it's it really surprised me how much better it got.
Unknown Speaker 59:56
And what I'm really hearing is that It feels like the illness as difficult and as complex as it was it made you fail, he compounded things, but it also made you face things that were already in the relationship that potentially over time, even if it took longer time would still rise, like communication styles is a pretty fundamental theme in any relationship. And wondering, are there other things that you would now say, while nobody would wish to be ill? Perhaps there are things that you feel it did bring you in your own personal strength and development?
Unknown Speaker 1:00:40
I guess what you said is absolutely true, I think probably we would have been pushed to that point in our marriage at some point. And, and this was just was just the thing that made it, like, turn it into a crisis. And I'm like, as I've said, I wish we I wish we'd done that years before, but we probably wouldn't have because we, our lives were fallen, we were busy. And we could just, you know, kind of ignore things. And I also want to add, we did not spend, I said it was the calcium was expensive, but we didn't actually spend a whole lot of money on counselling, we went through a Relationships Australia, which is government subsidised, so that that helps keep it more affordable. And also, we didn't really have that many appointments, we went maybe, maybe eight to 10 times the first year. So it wasn't like we were going, you know, even every every once a month really. And but we but we were very serious about you know, when they recommended books, or or websites or different tools, I spent a lot of time working through them. And then I took what was useful, and then I asked you to work through them with me, and he was good about that. So we took that very seriously. But in terms of other things that I mean, the two key things really were were addressing the problems in the marriage and realise like how much better things could be once they were addressed. And, and, and valuing my identity as a writer and realising how important that is, to me how healing that is, for me, I had a couple months, recently where I began my so my work hours, gradually, gradually gradually increased. And then they got a little bit too much, I was up to 15 hours a week. I wish I have the complete flexibility to do that during the week when it suits me, which is the best thing I could possibly ask for but and when I'm doing well, that that's fine. But I have had I had a few too many months last year where I was not doing well. And that was too hard. And so because of because I had that commitment, though, I stopped doing everything else again. And so I stopped I stopped writing. And and that just made me miserable. And it made me feel disconnected from who I am and made it just like it wasn't worth it. So I've actually this year, I've asked to reduce my work hours again. And you know, like, because we're a small organisation, like it's a, it's a big deal. Like involves a lot of upheaval for a lot of other people. But we're going through that process, because I just I just can't, I'm just not well enough to take on that much.
Unknown Speaker 1:03:16
And you've got clarity, what I'm hearing is the honest provided not just context to get real and raw about things that were under the surface. It also brought you into very sharp focus and clarity about what was important to you. Even if you had limited capacity. This is what you were going to put your energy into.
Unknown Speaker 1:03:38
Yes, and and that it and that it was rewarding for me to do so. But that was that I had made the right choice. I had been honest with what with what really mattered to me. And so that was that was really reassuring. And then I guess the other thing is just that, you know, I've had to say no, to so many things. And that's something I'm still I think I'll always be working on because I want I want to say yes to things. Like I wish I didn't have to go to my work and make everything more difficult for everybody else. But I I had to do that then I just had no options. So I've gotten a lot better at being more firm about my boundaries and about saying no to things. And and I think that even even if I magically get fully well, I guess at some point in my life, I think I will still have that skill. And I still have the confidence to do that.
Unknown Speaker 1:04:34
Thank you so much. I mean that's so rich, what you've shared and it's so honest, what you've shared, and you've really revealed what's in your heart. And I want to personally just say to you that's so nourishing for all the women who are perhaps lying in bed listening to this process, and to hear that you found a way through for yourself and we haven't glossed over it It's not pink fluffy clouds and rainbows and everything's cured. Yeah. But you found some parts of you that can move with the illness and still flourish. And I always love that final point that you're sharing about the no and having to say No, for me, I think honours, it will teach you badass boundaries very quickly. It's a life skill, but you will learn critically how to set a boundary because you cannot move into your own well being, even with a limited sphere without having super good boundaries. And it's a necessary part of your own well being. Love to hear that while it's been a struggle, it's something that you've identified as an actual when in the process of being unwell.
Unknown Speaker 1:05:52
Definitely. And I think one other thing is that I've actually met really amazing people and been able to connect with people differently. Because once you've had this experience, and you know, every illness is unique, but at the same time, there's a lot of commonalities. So I've actually, you know, become really good friends with another writer, I know who has chronic inflammatory demyelinating poly neuropathy, which is a rare version of Guillain Barre Syndrome. And so he and I host this podcast together now where we've started interviewing writers and other creatives about, about health. And we interpret health really broadly. So we've interpreted in terms of things like intergenerational trauma, for example, but we've also interviewed people with postnatal anxiety. And we just did a fascinating interview with someone who has vulvodynia, which is just very intense, chronic pain that can last like in her case has lasted for years. And she's just coming out with a debut novel fictionalising Some of her experiences and, and looking at also the history of that condition, for example, how it was treated for women in the late 1800s, which was brutal. So um, like, just being able to have those conversations on a really intimate level, I don't think I ever would have, you know, ended up pursuing a project like that as a healthy person. And, and it's just it's introduced me to amazing people, and, and allowed me to connect with them in a really personal way.
Unknown Speaker 1:07:25
Yeah, I feel the same. I feel like we come into these discussions no matter what the condition, we have a shared heart, and we have a shared language, and we can shortcut things with each other. And there's all these vibrant, beautiful, amazing women. And we don't have to be in silence, and we don't have to be isolated. And this project for me is about making that much more visible with each other. But also that we have an honest conversation about the difficulty, and the things that come through it that actually a part of our strength. I'm going to put in all of our show notes, you'll be able to find links to Ashley's books to the podcast she and James run, which is called stay at home and everything else that you can go and learn about her on her website. Thank you so very much for sharing with us, Ashley, we really appreciate it. And we wish you continued flourishing and well being in the ways that work for you.
Unknown Speaker 1:08:31
Thank you so much for the opportunity to talk about these things. Michelle, that really makes a difference.
Transcribed by https://otter.ai