Kylie Maslen

Interview by Madeleine Dore

Kylie Maslen: writer and critic

Full transcript

“And you never know what might happen, and I think just looking at our lives as a whole, it can be hard to understand how we might live and act differently to those who are not affected by illness. But when you break it down into tiny little bits throughout the day, that’s when you can start to understand, I think, the chasms between living with illness every single day and not.”
– Kylie Maslen

Madeleine Dore: How do your preconceived ideas of success and happiness, or the ones that are placed on you, set you up to fail? I came across this question in the writer and critic Kylie Maslen’s collections of personal essays, Show Me Where It Hurts: Living with Invisible Illness. In the book, she quotes Rebecca Solnit who, in The Mother of All Questions, writes about how our assumptions about what a happy life looks like can become traps.

Solnit writes, “We are consistently given one size fits all formulas, but those formulas fail often and hard. Nevertheless, we’re given them again, and again, and again. They become prisons and punishments. The prison of the imagination traps many in the prison of a life that is correctly aligned with the recipes, and yet is entirely miserable.”

These recipes can be damaging for all, but they can perhaps be made even more harmful when they are unattainable to your particular life. That’s a varying scale, but one need to start looking at more closely, interrogating, from different perspectives.

One perspective, as Kylie shares with us, is that of invisible illness. In her book, she writes, “If we’re going to get serious about talking about disability and mental health, then we need to talk about what that really looks like for everyone involved.”

Kylie has been living with invisible illness for 20 years, more than half her life. In her own words, every day she faces tiny obstacles in dealing with chronic pain, disability, and mental illness. From work to dating and doctor’s appointments, from her fears of what the future might hold, to a difficulty getting out of bed some mornings.

In this conversation, we talk about how creating a shared understanding of someone’s day-to-day life can help break down the barriers between the well and the unwell. We speak about the importance of routine to reduce things like decision fatigue, but also the flip side of that constant vigilance. We also delve in to burn out, the ableist idea of equating output with our worth, the Pomodoro technique, isolation and loneliness, community, and Kylie introduces me to spoon theory as a way to create boundaries, but also be generous with other people’s energy.

So, giving what a day looks like differs for everyone and changes day by day, here’s Kylie Maslen on how she is today.

KM: This afternoon, I had a doctor’s appointment and I saw my psychologist yesterday and it’s been really nice because I’ve had a bit of a rough time, as many, many people have this year. The stress of 2020 has not brought great things, and today and yesterday were times of feeling like we’re in a good place again. So I’ve been celebrating that, but also being quite emotional about my coming out the other side of a bit of a dark place. And just taking some deep breathes and thinking about where I’ve come from and celebrating being on the other side.

MD: So what is the good patch for you? What’s contributing to the other side?

KM: Medication. I wrote a book about being diagnosed with a bunch of different stuff, and then this year, I haven’t had any real pain episodes, but I’ve had a real mental illness episode, I guess, for want of a better term, for the first real time. And so it’s been very humbling to navigate that in isolation because so often my pain and my mental health is so entwined that it almost makes more sense to me that it’s a whole unit, whereas this time I really had to sit with this is also what my life looks like.

MD: In your book Show Me Where It Hurts, you talk about living with invisible illness and you wrote about how you’d like people to understand that your life sometimes looks like theirs, but sometimes it looks very different. And I was wondering if we could dive into that and why that is important for people to know? But also how you think it might be similar and different?

KM: I think it’s important to know because in understanding the day-to-day, it helps to break down barriers between the well and the unwell. Susan Sontag has this much-quoted line about the kingdom of the sick and the kingdom of the well, and those who are well will never know when they might need a passport to the sick. And so it’s important to understand, not just from a humanity point of view and, in my case, I think it’s important from a social justice point of view, but also personally. I mean, life comes at you fast and you never know what might happen.

And I think just looking at our lives as a whole, it can be hard to understand how we might live and act differently to those who are not affected by illness, but when you break it down into tiny little bits throughout the day, that’s when you can start to understand, I think, the chasms between living with illness every single day and not.

MD: I love that turn of phrase, the little bits in between our days, and you did touch on how, when we understand the day-to-day, we might be able to grasp those similarities and differences.

So I’d love to dive into the little bits for you. In the book, you beautifully touch on some routines and rituals, things that you’ve experimented with, and things that seem to be embedded in your day, but I suppose, overall, what’s your relationship to routine and rituals, and what changes, or what stays?

KM: I am very much a person of routine. I always have been anyway because I guess it’s just my natural tendencies. But in the last couple of years in particular, I’ve come to realise how much I need routine and how much it benefits my health, having solid routines. So it starts from very early in the day in that I need to wake up at a similar-ish time most days, so that then my morning dose of medication is taken at around the same time and I can plan out the rest of the day and when other doses need to be taken.

And if I take them much later than normal, I start to notice the impact of not having taken them, and that ties into eating meals around the same time as well, to make sure that I'm not taking medications on an empty stomach. I’m also awful in the mornings.

MD: In what way?

KM: It takes me a good while to wake up properly and I think, in another life, I would be a real night owl who writes at 3AM when everyone else is asleep and I’ve been reformed out of that. But I can be really grumpy in the mornings. I generally don’t really want to talk to anyone in the morning.

So I have this morning routine that can be done without any real effort. It’s quite robotic. It’s just all muscle memory. It’s very important that I have a second cup of tea. I can’t drink coffee anymore, I have to be very careful about caffeine intake and nothing that’s too fast, too quick because it really plays with my hypermania and my anxiety, so making cups of tea throughout the day is really key. And it also just feels like a really nice ritual.

I often work during the way using the Pomodoro Method, where you work for 25 minutes and then take a five minute break.

MD: Ah, the Pomodoro Technique. Why is that helpful for you in particular?

KM: Because if I don’t have those enforced breaks, I will sit at my desk for five hours to get to eight, and suddenly just almost coil over because I haven’t moved. So that kind of discipline is really useful for me.

MD: I feel like I’m the opposite where I need the Pomodoro to actually get me to focus, rather than to make me break, if that makes sense.

KM: I do find some days where I’m having trouble getting in front of the screen, like getting to the computer, but once I start a Pomodoro, then I’m genuinely up and about and getting stuff done, whereas when I’m having that second cup of tea and I’m just answering some emails and probably looking at Twitter a little bit and just doing some life admin, then that can drag on forever. But once I’ve cut the third cup of tea and I start a Pomodoro, then I’m really down to business for the day.

MD: Yes, I’m similar, except I have a little desk bell that I ding and then I know that I'm serious about getting some work done. I’m curious about the times when maybe your routine is knocked over. For example, I imagine after writing Show Me Where It Hurts, that’s a big project and it can really shift our routines, so how do you get those habits or rituals back into your day?

KM: I think it took about a week or so where I was just exhausted and just needed to sleep in. My life is a constant battle of me wanting to do more than my abilities allow for, and so that’s an easy example of like, okay, great, we’ve done doing all of this stuff, I can get back to my routine, I can get back to writing, and no, I was still exhausted a little bit. It’s been really nice now that I’ve had some real time since to slowly get back to a nice place of being able to work again.

I’m doing the research and development on my next book. It’s a really good opportunity for me to just not put too much pressure on myself and just do the really interesting thought-provoking stuff around reading and considering and, you know, I’m not really writing per say, I'm just listening to podcasts, and reading, and following the news more closely than normal, and feel like it’s really in tune with what my body is capable of doing right now, but also what I’m really enjoying intellectually as well.

MD: That is a wonderful phase, to be in that gathering, collecting, thinking part. Definitely want to put a little marker to come back to this tension that you’ve mentioned between what you want to be doing and what your body allows, but before we go back, I would love to ask about this gathering phase, the collecting phase, the thinking phase.

It can be really, really wonderful, but because it is, by its nature, very unstructured, how do you know how much to do in a day? Or how do you allocate time to something that’s quite timeless?

KM: I pretty much have been following the same structure that I do when I’m writing, which is when I mentioned Pomodoro before, and so I usually will start those around 9:30, 10AM and I can do either four or six, that’s really what I’m capable of. So finishing around midday or 1PM, sometimes a bit later, but sometimes it’s only two hours of really breaking a sweat, and that’s okay because it’s not a lot of time on the clock. But when I’m working, I have a very strong output, so I can trust in myself that that’s going to be okay.

And then break for lunch, and then after lunch I don’t really write. I’ll edit, especially if I’m writing a feature that needs to be turned over quite quickly, I’ll write it in the morning, edit it in the afternoon. But afternoons generally are for that kind of reading, thinking, fine turning some research, that sort of thing. I very rarely write after lunch. But also that’s the time I tend to schedule medical appointments, so they’ll dictate what time I need to stop working for the day.

And I found that scheduling them around 3 or 4 o’clock is a really good time for me. It means I get home not too late afterwards, but I’m still getting enough work done in the morning that I’m not getting too frustrated at how much going to these appointments regularly is affecting my work or affecting my output.

And then I might also just want to stop because it’s a beautiful day and I want to go to the beach for a swim or I want to go out for a walk. If it’s a good day, then I’ll be in the water or I’ll be at the ocean, but if it’s a cold day, I might be in the bath. I joke often on Instagram about my toddler’s lifestyle, so I will very often have a bath at like 4 o’clock in the afternoon and then be in my pyjamas and then eat dinner quite early.

But that, again, is part of having to look after myself and for this big pain episode and surgery and stuff that I had in 2017, I was operating very close to burnout and was really not listening to my body very well, and working overtime all the time, working multiple jobs. And so it’s been awful circumstances that have got me to this point, but it is a nice feeling knowing that I finally understand what it is in my control, what I am able to do to look after myself a bit.

MD: There was a few different threads there that were quite interesting. Obviously, as you said, you’re a creature of routine, yet you even describe in the book about how each day you face tiny obstacles in dealing with your pain and mental illnesses. And in that tension, even as you mentioned with doctor’s appointment and trying not to let that derail or give that productivity guilt feeling that we can have about our output. Even it could be a doctor’s appointment, or it could be the sunny afternoon that makes it feel like, oh, why aren’t we working enough?

So much of our worth is tied to that idea of productivity and output and I’m just wondering, going back to that idea of really being able to focus on what you can control, and what is that process of dealing with that tension of productivity guilt, dealing with that tension of wanting to be able to do more, but knowing what’s in your control more and more, and honouring that and looking after that?

KM: I really had to come to terms with this ableist idea that our output equals our worth, and it’s still something that I deal with regularly because it’s frustrating as all hell sometimes. But then there are other times where I’ll look at my friends who are relentlessly busy and I will reply to their Tweets or message them being like, sit down. Take a load off, make a cup of tea.

It’s not an easy thing to deal with. And I feel like I should say that I wouldn’t wish this life on anyone. There’s also this ableist idea of this kind of great perspective that illness can bring and this special gifts of mania making you more creative, which is untrue and quite dangerous.

But from all of these challenges that I faced and continue to face, I have built a life that is more intentional. I’ve had to do so, and it’s been really difficult. I’ve learned a lot about myself and about my values and what’s important to me along the way, but it’s also meant that I, for the most part, am just really happy with my life at the moment. It’s really easy for me to go to the beach, just go for a walk and really blow out some of those mental cobwebs, and just a slower pace of life. It’s really good for me. And I guess maybe that time in Melbourne was my rut, to hook it to your phrase, but it was awful, but it has brought this really nice part of my life that I'm really grateful for.

MD: It’s definitely not something to glamourise that, once you get on the other side of the rut, you’ll have this perfectly happy joyful life. Obviously it’s much more complex, but I really appreciated in Show Me Where It Hurts, making that link between health conditions and the cyclical rather than permanent, and that metaphor you used of it like being a tropical storm. I wondered if that’s how you would think of a health-specific rut, or…? Maybe if you could go into that metaphor a little bit more now?

KM: It was something that was really important for me to convey to readers because with, I want to say traditional illness, like a minor sort of thing like… you have sore sinuses, so you go to the doctor, you say I’m really blocked up, it hurts, they poke around a bit and give you a prescription, you rest up, within a week you’re feeling better, the best-case scenario.

When you’re diagnosed with something that has chronic in the title of it, it’s always like a ticking time-bomb. I know that’s a bit cliché, but it will always come back around again, or you know that you’ll have to deal with it forever. So I wanted readers to understand that our lives are not just an endless kind of going back to the doctor for antibiotics, it’s really like a constant, constant process with ebbs and flows, and I wanted people to understand to an extent, I mean, it’s hard to understand totally unless you’ve lived it obviously, but what it’s like to see no end in sight.

“I’ve come to think of my health conditions as tropical storms. My body, like a sea of warm water, is at the mercy of erratic and unpredictable fronts, the impacts of which are long-lasting and deeply felt. My pain and mental illnesses have triggers, like the thunderstorms that fuel tropical storms. And just as storms have seasons, the triggers that cause my pain or distress come in patterns. I can’t prevent them. I can only do my best to soothe this particular cycle until it dies out. Then I look around me, at the land that has been flattened and destroyed, as if a cyclone has swept across my life, I begin to pick up the pieces and rebuild, but I never lose sight of the sky, knowing that the wind can pick up again at any time.”

MD: I’d like to go back to something you were mentioning earlier about how you see your friends on Twitter and how busy they might be and how there’s that impulse to just say sit. And I’m wondering how, maybe in contrast during this time of lockdown, where some people did experience a real slowdown, not everyone, and some people did have quite an experience of isolation. And I’m wondering, in the book, you speak about the isolation of invisible illness and disability, and I’m just wondering from your perspective, how did observing that shift in other people who might’ve been maybe berating isolation or waiting for this time to be over, how did that sit for you?

KM: I know that I’m certainly not alone within chronic illness communities, but it’s been a really challenging time for a lot of us because, for the first time in a lot of people’s lives, they’ve had to deal with what our life looked like on a day-to-day basis, and more people haven’t coped very well. And I know that there’s a lot of other stuff that’s caught up in this year, but it’s been really painful to see people talking about just waiting out until we can get back to normal, or counting down this endless countdown to having a pint at the pub.

For some of us, this kind of isolation, this social isolation, it’s our life. There have been some good things to come out of it, like suddenly we’ll never have to fight as hard to work from home again, which is something that makes a tremendous difference to me and to a lot of other people. Things like Telehealth have been incredibly useful for people with chronic illness and disability or mental illness, but seeing people going stir-crazy inside and suddenly baking bread for the first time, and even having that energy in order to do stuff while you’re in lockdown, is something that we don’t always have.

So people who have been reading a ton or exercising more than normal, it’s really been quite difficult. I’ve had a lot of really mixed emotions about it. I’m really scared and a bit nervous and a bit envious and preemptively emotional about what’s going to happen when people do get out and about again. This community of sick people, are we going to be forgotten again? Or will people from the outside remember what that feeling was like and be a bit more empathetic?

MD: You did touch on it. “This is our life” is how you put it and, for many of us, it’s temporary. It’s uncertain, but it’s temporary, and there’s definitely various privileges within that, as you’ve mentioned. It touches on this idea of milestones that you bring up in the book. This is a temporary experience for some, and it might not have a great domino effect on other life milestones, but I’d like to hear more from you about how invisible or chronic illness can have that domino effect on various, if not all, life milestones, or traditional milestones anyway.

KM: Yeah, Briohny Doyle wrote a book a few years ago called Adult Fantasy, which is a memoir about being a millennial and our generations experience of trying to achieve those milestones, or what those milestones mean to us as well. And they are finishing your education, getting married, buying a house, having children, and there’s becoming financially independent.

So how illness can affect those milestones, it’s hard to think about my place within those milestones often, but I’m also often too sick to really even be thinking about it, let alone taking action on it. The life milestones that I’m most concerned about is financial independence, and I have this real fear of facing homeless as I age. All the statistics, current statistics, show that I am in a real kind of danger area in that I’m not financially secure, I don’t have savings, my income is precarious, I’m disabled, I’m mentally ill. The only thing is being maybe 20 years older and maybe not even that, that would make me at high risk.

So I talk in the book about, first of all, this is something we need to be talking about. If more people knew that their mum or their friend’s mum or their grandma or whatever was at a real risk of being homeless really soon, perhaps they’d do more about it, but often in disabled community and certainly in the chronic illness community, we talk about how we can look after each other in order to protect ourselves, and I think more and more, I'm finding comfort in ways that our community look after ourselves and the resources that we can share, the information, and there’s a lot of emotional care goes into this community, and it’s really incredible.

I don’t want this to be like I get by with all help by my friends, but those relationships, their importance cannot be overestimated when you’re facing all of the uncertainty of illness and all of the intolerance and ignorance and barriers and everything else. There are all these walls that are put up around us. Without that community, without us looking after each other, it’d be really scary, to be honest.

MD: It would be. It must also be that difficult balance because, as you write about in the book, often it is your social life that’s the first thing to go when you are feeling ill, and you do speak about that isolation and how that feeling of guilt for the times that you are forced to cancel plans, or the other life milestones from someone else that you might’ve missed.

But you do speak about loneliness and how you tell yourself that you’re in control of your loneliness, which I thought was interesting. But how does that balance come into it? Knowing the importance of community, but also knowing the times where you can’t actually participate in community?

KM: One of the best things I’ve learned from this community is not only when to reach out, but when to not offer help to others because perhaps it goes back to that productivity thing. That we don’t have to be present all the time. Sometimes we just don’t have the ability to be present.

There’s a theory that is used called spoon theory. I don’t know if you’ve heard of this. The idea is that everyone has a certain number of spoons in their drawer and, as you go throughout the day, you’ll use up those spoons. You’ll dirty those spoons, I guess, in completing activities that you need to do throughout the day. And at some point, you’re going to run out of spoons.

So when you live with chronic pain in particular, you learn how to pace yourself and how to use your energy best in order to make the most of those spoons available. So you might have 12 spoons for the day, but it might take… I know for me, having a bath might be two spoons, having a shower is probably three, but washing my hair is four. That’s a bit activity. It’s really tiring for me. But that’s four spoons out of 12, so I can’t be doing very much else that day if need to wash my hair.

So that’s why things like being able to work from home are so crucial because the commute to and from work used to be almost as draining as the day at work itself. So, in this community, we speak with that shortcut of spoons and so often we will say things like hey, I don’t have the spoons to go into this right now, but I will get back to you when I do.

Even when we’re asking someone something, we will say hey, when you have the spoons, and by saying something like that, it means that we understand it might take a week, it might take more than that. It might take a day. Who knows when you’ll have the ability to do that? But we understand that we’re not going to push you into acting or deciding on something really quickly.

Even joining a conversation immediately, because we don’t have that same set of skills of productivity that we used to, or maybe never had, and so by talking in our shortcuts or sending each other voicenotes instead of writing out a whole elaborate paragraph about how we hope the other person is feeling or something, we’ve cut through some of those ableist ideas I was talking about before, and showing real support for each other at the same time.

MD: It’s beautifully generous, I think, to say hey, when you have the spoons. I think that that’s so important to give people an out, rather than making it so difficult to say no or to communicate a boundary. It’s lovely to be able to say something without the pressure attached to it.

KM: Yeah, whereas this acknowledges that, look, on the face of it, you might not be doing anything. We might be just watching TV in bed and that’s all we’re able to do.

MD: Circling back to your routine, in Show Me Where It Hurts, you speak a bit about sleep rituals and evening rituals, and I wondered if you could take us through the end of your day?

KM: Like I have a really set routine in the morning, I’ve been working really hard on building a really good night routine for me. I have a no screen in bed rule. I would never take my laptop into bed with me. I have routines about reading in bed and then I take my medication, and then I go to the bathroom, and then I brush my teeth, and then I’ll put my wheat bag in the microwave, and then I’ll go back into my bedroom and I’ll spritz a nice room spray, and put all the pillows in the positions that I like to be able to prop up my pelvis and everything else.

So those little rituals that either end of the day are really important for me and it’s a way of looking after my physical and mental health, but it’s also really important for me to put full stops on the end of the workday. So part of that is not using my laptop after dinner, really, and just little bits and pieces that I have trained my brain to know that this is quiet time now, this is relaxing time, not working time.

So questioning those things is something that I need to keep doing because I can very easily fall back into patterns of not exercising in the afternoon and just having an hour-long bath instead of a half an hour walk and a half an hour bath. I kind of constant vigilance in a way, and that’s the exhausting process.

It goes back to that quote from storm season. It’s like I'm constantly monitoring my pain, my emotions, my ability to do certain things, and trying to second guess where I might need to be in the future in order to make sure I’m able to do that, and it’s that not being able to switch that off, ever. That’s the most exhausting thing about living with illness, for me, anyway.

MD: It’s like the vigilance of the routine to avoid having to make decisions. But then the exhaustion of decision-making as well, at the same time.

KM: Yeah, and I think that’s why I have built so much routine and ritual into my days, because they help eliminate decision-making, and decision fatigue is something that I’m very aware of, so I know that if I have porridge for breakfast every morning in winter, that’s one thing that I don’t have to think about, and it becomes part of my night routine to soak the oats the night before, and to wake up and know that they’re there and ready to be cooked, and I don’t have to think about that’s what I’m going to have for breakfast.

Just little things like that actually can make a big difference to my day because obviously what I’m going to have for breakfast isn’t a huge decision, but faced with lots of tiny decisions throughout the day, it can be just as exhausting as having one or two really big decisions to have to make.

MD: I’d imagine it just means that, if one of those tiny obstacles you speak about pops up, at least there’s less crowding around those.

KM: Yeah, exactly.

MD: Perhaps ambitiously, I’m trying with these interviews and the focus of my work to untether ourselves from productivity as a measure of our worth and show that our days inevitably go off track and can fall into a rut or, at times, the routine is a nice ballast.

So I do like to ask people, productivity and output and those ideas aside, what would be your measure of a day? Or what would be your measure of a day well spent? Not even spent. I’m just realising now, spent goes back into the productivity kind of capitalist phrasing. It’s like we have to spend our days like money.

But actually maybe it comes back to spoons. I’m just reminded of the T.S Elliot quote, “I have measured out my life with coffee spoons.” But for you, what does that measuring of a day or a day well spent look like?

KM: An ideal day for me, I think, would not be so much about output, but about balance. So balancing time by myself, which is really important to me, and I’m one of those people that are really energised by spending time alone, so reading on my balcony is a perfect example, or having a bath.

Writing or reading some sort of creative output, some time for either family or friends or community, that kind of broad social group, but not just like going to the pub and hanging out, even though obviously that happens as well, but it’s important to me that, when I do have the spoons to present up to the communities that help me when I don’t. And then the final element of balance is looking at the things that I know help make me healthier and therefore happier or happier and therefore healthier, and really dedicating some time to those as well.

And I’m not always able to do all four of those, or I sometimes forget because it’s really hard to, I don’t know, live your life in that kind of constantly balanced way, like life just doesn’t work that way. But in an ideal world.

MD: Kylie reminds us that it’s not only a balancing act, but what we balance day by day differs for each of us. Be it chronic pain, be it illness, be it isolation, be it worries. They all differ. But it’s also what each of us keeps hidden, and that similarity might be what connects us.

Kylie writes, “People with mental illness like me are just carrying on with their lives.” When we recognise that similarities, but also those differences, perhaps we can find new recipes for determining a good life that’s not so prescriptive or one size fits all.

Going back to Rebecca Solnit, she writes, “There are entirely different criteria for a good life that might matter more to a person. Loving and being loved, or having satisfaction, honour, meaning, depth, engagement, hope.”

I’m Madeleine Dore and that’s what I hope to share with this podcast – that our days are ebb and flow, just our criteria for a good life ebb and flow.