Yumiko Kadota was a junior doctor and working hard towards her goal of becoming a plastic surgeon in NSW. But the demands of her workplace became increasingly extreme, and she found herself dealing with bullying, sexism and racism, as well as unreasonable hours. If anyone should know how important sleep is for the body, it should be health care professionals (and the people who manage their rosters). Right?
Instead of sleeping, Yumiko was working longer and longer hours, and was constantly on call. Her health started to deteriorate.
By the time she left her job, she was so unwell that she ended up back in hospital – as a patient.
She recounts her journey from ambitious student to junior doctor to patient suffering burnout and depression in her new memoir, Emotional Female.
“I was pretty well bedridden, unable to move very easily for about the first year … I’d sort of have to shallow breathe into the tops of my lungs.”
When Josephine Taylor first began to experience chronic pain, she started to reduce her commitments. She was a career woman and a mum. But gradually, she had to shut down her whole life. Meanwhile, she struggled to get a diagnosis.
Eventually the doctors concluded she had vulvodynia, chronic vulva pain lasting three months or longer that is medically unexplained. “That doesn’t mean it’s not real,” she adds. “It’s a very real medical condition.”
Josephine is a writer and freelance editor who lives on the coast north of Perth, Western Australia. She is Associate Editor at Westerly Magazine and an adjunct senior lecturer in writing. Her debut novel, Eye of a Rook, is drawn in part from her experiences with vulvodynia.
Trapped with condition, she began to learn its history and write about it. “It seemed to me very important that people understand that actually there hasn’t been a great deal of movement forward in understanding or awareness since the 1860s.”
Eye of a Rook is a novel with two narratives, both about women suffering from vulvodynia. One storyline is set in contemporary Perth, and one set in England in the late 1800s. The historical narrative includes shocking details about women’s medicine and treatment at that time, drawn in part from research into “The London Surgical Home for the reception of Gentlewomen and Females of Respectability suffering from Curable Surgical Diseases”, which opened in 1858. Taylor describes the barbaric surgical procedure, called a clitoridectomy, which is proposed in the opening chapter as the solution to one of your main characters’ suffering.
For both women, their illness affects their personality, and robs them of themselves, as well as affecting Alice’s career in Perth. We discuss how vulvodynia affected Josephine’s life, medical victim blaming, the difficulty of being diagnosed with a little-understood condition and the ongoing confusion of it, and the ‘finitude of possibility’ that chronic illness inflicts on a life.
Josephine is full of excellent advice and reassurance for anyone suffering chronic and/or invisible illnesses, about surrounding ourselves with people who believe us, and not letting our past dictate our futures.
This episode’s book chat The Fifth Season by Philip Salem Wintering by Krissy Kneen ‘The Wife’s Story’ by Ursula K LeGuin Imperfect by Lee Kofman (who we spoke to in episode 3) Unlike the Heart by Nicola Redhouse Pain and Prejudice by Gabrielle Jackson Show Me Where It Hurts by Kylie Maslen Hysteria by Katerina Bryant One Day I’ll Remember This: Diaries 1987-1995 by Helen Garner In the Woods by Tana French
If 2020 taught us anything, it’s that there’s no point making plans. I planned all kinds of things last year, including that I would be in Canada over this holiday season to finally visit my family after four years of CFS making the journey impossible.
Instead I’ve spent three damp and soggy holiday weeks in New South Wales, mostly squelching around my neighbourhood, much like I did all year.
I planned to increase my micro swims to tiny swims, and to jump in the pool without hesitation. I was doing great at this in January, but then in February my CFS got much worse, and I wasn’t able to swim. I kept trying to get back to it, but then covid closed the pools, and I got sicker.
Another resolution was to read more, which I’d assumed I’d be able to do as my health continued to improve. But it really didn’t. My CFS recovery tanked in February and March, and again in August and September, and I felt like I spent the rest of the year trying to recover from those months, just to get to where I’d been in January.
I also wanted to develop my listening skills and ask better questions, but between CFS shutting me down and covid shutting everything else down, I gave up on this. If anything, I’m less inclined to ask any questions when I go out these days.
There was one resolution I managed, however: to have a first draft of my new novel by 31 December. I’m happy to tell you I’m already into draft 2, and I’m very excited about it.
Also in 2020 I completed the Lost Hours Project. Every day, I recorded how much time I lost to illness, ie how much time I spent in bed during the day rather than up living my life. I was very optimistic at the start of the year, so I thought it would be an encouraging exercise. I thought the numbers would gradually improve.
I lost 1024 hours last year. If you assume 16-hour waking days, that’s 64 days – more than two months.
But I also realised that this project wasn’t working. I’d wanted to quantify the experience of illness, to find a metric to compare days and months. This isn’t it. In September I lost 89 hours to chronic fatigue and in October I lost 85. But those two months were wildly different experiences. In September (and August) I felt like I was drowning almost every waking minute. In October I was quite functional when I wasn’t in bed, and I was able to do cognitive work without fighting through an ocean of misery.
It turns out it’s not so much the lost hours that matter (though of course they do), but the quality of the hours that are not lost. And that’s much harder to quantify.
I know what you’re thinking – yeah, but look at December. You must be feeling a lot better! Not quite. I was just on holidays. My office closed for the holidays on 16 December, and when I can spend 15 hours a week relaxing instead of doing intense cognitive work, my symptoms become much milder.
So I decided not to continue the Lost Hours Project in 2021. I’m not convinced the data is very useful, and it’s a bit depressing.
Some good news: today I jumped in the pool without hesitation and did a micro swim. If I don’t end up collapsing for several hours in the next two days, I might even do that again.
Still, I refuse to make plans or goals this January. I’m sick of it. I’m going to write a new draft of this book as fast or slow as suits me on any given day.
Actually I do have one resolution I’m very keen on, and that is to use the word absquatulate as much as possible.
Say that out loud and tell me it isn’t the most fun you’ve ever had.
It means to leave abruptly, which is something that can be worked into most conversations, even if I have to do more than my share of absquatulating to ensure I can bring it up.
Australian author Elizabeth Tan’s second short story collection, Smart Ovens for Lonely People, is full of humorous and poignant stories laced with pop-culture references and techno-slang, and set in an uncertain dystopian future or surrealities.
Elizabeth’s comedy leaps out from story titles such as ‘Shirt Dresses that Look a Little Too Much Like Shirts so that It Looks Like You Forgot to Put on Pants (Love Will Save the Day)’ and ‘Happy Smiling Underwear Girls Party’. This belies their cutting emotional depths, the varieties of loneliness depicted, and the incisive exploration of technology’s ability to isolate us while keeping us evermore connected. The book, which came out earlier this year, just won the 2020 Readings Prize for New Fiction.
In comparing Smart Ovens for Lonely People to Tan’s first collection, Rubik, Cher Tan writes: “Sardonic, gentle observations on cultural anxieties as mediated by techno-capitalism have solidified as Tan’s ‘personal brand’, but the terrain is more fantastical, more mischievous.”
One of the themes that links the stories in Smart Ovens for Lonely people is loneliness, but it’s often a special kind of loneliness – loneliness within relationships, loneliness without necessarily being alone. An affecting line from the title story sums this up: “Having someone who loves you doesn’t exempt you from wanting to die.”
Perhaps not surprisingly, loneliness competes with workplace stress, mental illness and sedentary lifestyles as one of the most pressing health epidemics of our time.
Listeners will remember our interview with Kate Leaver in episode 8, when we discussed her new book about how good dogs are for our health. In her first book, The Friendship Cure, she offers some compelling evidence for the dangers of loneliness, drawn from a meta-analysis of scientific research. It concluded: “Loneliness is more dangerous than smoking 15 cigarettes a day and deadlier than obesity … It can tighten our arteries, raise our blood pressure, increase our rates of infection, diminish our heart health, and lead to higher rates of cancer. Lonely people develop tumours faster, have weaker immune systems and lower thresholds for pain.”
We also ask Elizabeth to discuss a story from the collection in terms of its evolution from idea to final draft, which leads to a fascinating discussion of her use of a writing prompt called logogenetics.
And we discuss a whole bunch of writers, including Brooke Davis, Shaula Evans, Alexander Chee, Fiona Wright, Stephen King, Yumna Kassab, David Vann, Laura Bates, and Laura McPhee-Brown.
Since getting diagnosed with chronic fatigue syndrome in 2017, one of the most helpful things has been learning specific terms that describe aspects of the illness.
I think this is partly because the existence of a given term is proof I’m not imagining what I’m experiencing. It’s real, and other people have experienced it – so much so that there’s an established name for that experience. A few examples are orthostatic fatigue, temperature dysregulation, and alcohol intolerance.
Recently I learned a new term that describes an aspect of my experience of illness perfectly. Disturbingly, I learned it while reading not about CFS, but about covid-19.
Despite the impression my social media accounts might give, I’m still really struggling with the fatigue. In January, I started the Lost Hours Project to try to quantify how much the fatigue still affects me. I track each hour I lose to fatigue – in other words, any daytime hour that I’m too sick to function.
Keep in mind these don’t include time that I am functioning, but at a slower (more frustrating) speed than I would when I’m well. Often things take me twice as long as they normally would because of physical or cognitive fatigue, or both. But there’s no clear cut way to track this.
The 110 hours I lost in February are nearly 25 per cent of an average adult’s waking hours. In other words, I spent an entire week of that month in bed. (You might be thinking, gosh, I’d love a week in bed! Until you realise that I spent that week feeling like I’d been run over by a cement truck, and still had my usual work and personal commitments piling up.)
Chronic fatigue syndrome isn’t just feeling tired or run down. It’s exhaustion combined with a roulette wheel of symptoms including body aches and joint pain. I wouldn’t wish it on anyone.
Which is why I’ve been so unsettled reading about the covid-19 ‘long haulers’.
More and more articles are coming out about people suffering a long tail version of covid-19. They’ll feel fine for a few days, and then suddenly be too exhausted to work or function, with returned symptoms like shortness of breath and a hoarse throat. For others, the fatigue has settled in and not left.
“Before this, I was a fit, healthy 32-year-old,” a woman interviewed for the Atlantic said. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.”
Ugh, I know how this woman feels. I’ve been there.
“This virus has ruined my life,” she continued. “Even reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown—yoga, bread baking—are beyond the realms of possibility for me.”
An article from SBS describes a man in New York who will feel fine for a few days, then suddenly become overwhelmingly tired and short of breath.
I wasn’t surprised when the article quoted his physician saying the man’s “ongoing fatigue is similar to what has been documented in other illnesses that cause chronic fatigue syndrome.”
“Scientists aren’t quite sure why this happens, but … it might relate to an injury to a part of our cells called mitochondria, which are responsible for generating energy.”
The physician “emphasised it was important for people experiencing these ongoing symptoms not to succumb to ‘medical gaslighting‘ where other people or the patients themselves attribute the illness to anxiety.”
“This is not in people’s heads. This is what people live every day.”
From extensive experience, it’s very difficult not to medically gaslight yourself. It’s useful to have a term for this, since I still tend to have this sort of thought distortion. I don’t necessarily attribute the illness to anxiety, but I often tend to deny how sick I actually am. Particularly if I have a few good days in a row, I start to think I can’t possibly be as sick as I’ve made out. I must be exaggerating.
But I’m not. And the covid-19 long haulers aren’t, even if they’re trying to convince themself that it must be anxiety, or even their imagination – because that would be far less frightening that the reality of having chronic fatigue.
The Atlantic reports that thousands of people are now experiencing long tail covid-19, with early surveys estimating that 60 per cent of them are aged 30 to 49.
Take care, stay safe! And if you’re sick, try not to gaslight yourself.
The Safe Place begins with a dreamlike escape. A young Londoner in a Ramones T-shirt and worn sneakers boards a private jet and arrives in France, where a chauffeur escorts her to a secluded luxury estate on the coast. Hidden on a forested backroad behind iron gates, the property features two mansions, an expansive garden and a central pool. Emily Proudman gazes at her surroundings in delighted disbelief.
The author, Anna Downes, is originally from the UK and now living in Australia. In a coda to the book, she describes her own journey from struggling London actor to the debut author of a major international book release. After leaving both the UK and her acting aspirations, she moved to Australia with her husband and turned to writing as an escape from postpartum anxiety.
In episode 5 of James and Ashley Stay at Home, Anna describes how even as her anxiety began to cripple her, she convinced herself she was fine. Finally, as things worsened, a friend mentioned that she gone through something similar. She “was literally the only person who said to me, ‘I’m struggling, and this is what I did.'”
Anna sought professional help, but she also took up a new creative pursuit. After leaving her acting career and becoming a mother of two children under two, part of her struggle was the feeling of her “identity crashing”.
She describes how she began writing for fun, for herself, and three years later, is celebrating the release of her debut novel. In listening to Anna, it’s clear that she channelled all of herself, her fears and passions, into her writing.
“The book is hard to put in genre pigeon hole, because part of it is thriller/horror, but Emily – she thinks she’s in a romcom,” she says. Anna is a fan of Psycho just as much as she is Mystic Pizza.
James and Ashley are staying at home. Partly because there’s a pandemic, partly because they’re writers, and partly because of their health. Through discussions and interviews with other writers, they’ll try to build fellowship and entertain, or at the very least, explore how staying at home has its benefits.James and Ashley Stay at Home is a new podcast, a joint venture with my wonderful co-host, James McKenzie Watson. Learn more about James and the podcast below, or find the first seven episodes here.
We’ll be discussing the challenges of our efforts to write brilliant manuscripts while coping with chronic health issues, and also interviewing other writers who have done the same.
This is what the player for the first episode would look like, if I could embed each episode.
Instead, you can listen to episode 1 here. It introduces the podcast and our major themes, writing and health. We speak about both topics through our personal experience: in addition to my chronic fatigue syndrome, James was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) in 2016. Like me, he also suffers from serious fatigue, among a myriad of other symptoms.
James is a very talented writer of short and novel-length fiction. He’s been recognised in competitions including the International InkTears Flash Fiction Contest, the Newcastle Short Story Award and the Grieve Writing Competition, and featured in publications such as Baby Teeth Journal and Brave Voices Magazine. In 2017 he was shortlisted in the Kingdom of Ironfest prize for his novel Denizen. He works as a nurse in regional NSW. Find him on Twitter or visit his website.
James is a member of my Writing NSW writers’ group, pictured here at the 2019 launch of My Name Is Revenge: Jonathon Shannon, James, me, Simon Veksner, Amanda Ortlepp and Andrea Tomaz.Episode 2 is a special episode, which features me reading the first chapter of my new memoir, How to Be Australian.
In episode 3, we launch into our interviews with Australian authors starting with Lee Kofman, author of Imperfect.
In episode 4, James grills me about writing my new memoir, How to Be Australian. (It turns out the secret to getting asked all the questions you really want to answer is to be a guest on your own podcast.)
Episode 5 features debut author Anna Downes discussing her international hit The Safe Place, as well as her experiences with postpartum anxiety.
In episode 6, James and I share the stories of how we came to be writers and share some of our favourite writing tips.
Episode 7 features British-Japanese author Katherine Tamiko Arguile discussing her debut novel The Things She Owned and the health crises that drove her to pursue a writing career.
In episode 8, we interview author Kate Leaver about her new book, Good Dog, and learn about just how excellent dogs are for our wellbeing.
Episode 9 features art therapist Karin Foxwell discussing the profoundly therapeutic power of art, as she’s observed in her work with military and emergency services personnel who’ve sustained PTSD in the course of their service
Episode 10 gets personal: James and I explain our health conditions, discuss how these affect day to day life, and explore how illness has impacted our senses of self.
In episode 11, we discuss anxiety with comedian Anthony Jeannot.
Episode 12 features bestselling author Petronella McGovern discussing her new novel, The Good Teacher, and the allures and dangers of fringe healthcare.
In episode 13, we chat with the legend herself, author Kate Mildenhall, about the craft of novel writing, the challenges of penning a second book, and the creative anxieties that plague writers.
Episode 14 features Elizabeth Tan, author of Smart Ovens for Lonely People, discussing the public health crisis of loneliness, the personal experiences that inspired some of these stories, and an unusual but highly effective writing prompt.
In episode 15, James and Ashley share their motivations for writing, writing tips, and more.
Episode 16 features Ada Palmer, historian, composer and author, and how she’s managed to achieve so much while managing a number of invisible illnesses.
Episode 17, the last episode of 2020, highlights some of the best writing tips from the year, and is a great resource for any writer.
Conversations with Friends showed up as a surprise in the post. A friend sent it to me.
Sally Rooney has won multiple literary awards. I’d read her second book, Normal People, earlier in the year, when everyone was talking about it. And while I recognised the writing as brilliant (and so crisp and well wrought, Rooney doesn’t even bother with quotation marks), I didn’t enjoy the book. I don’t enjoy stories about relationships, about love and affairs and divorce and grief. My favourite books generally have at least one murder in them, and no-one gets murdered in Conversations with Friends. Not to spoil it too much, but no-one even contemplates hiring an assassin.
The whole time I was reading it, I wondered what had made my friend choose this book, from the millions of books out there. Even though this book was very much not my kind of book, at the same time it was so well-written it was hard not to find things to appreciate on every page, turns of phrase and insights into the human condition. The main character has embarked on a writing career, and later on is diagnosed with a chronic illness. Many of Rooney’s observations rang true for me. I’ve listed some of my favourites here.
“I had started reading long interviews with famous writers and noticing how unlike them I was.” (Does every aspiring writer do this?)
“I feel like shit lately, she said … You think you’re the kind of person who can deal with something and then it happens and you realise you can’t.”
“Everyone’s always going through something, aren’t they? That’s life, basically. It’s just more and more things to go through.” (This seems especially true this year.)
“After that I put some cold water on my face and dried it, the same face I have always had, the one I would have until I died.”
“I wanted things for myself because I thought they existed.”
“I felt as if I’d glimpsed the possibility of an alternative life, the possibility of accumulating income just by writing and talking and taking an interest in things. By the time my story was accepted for publication, I even felt like I’d entered that world myself, like I’d folded my old life up behind me and put it away. I was ashamed at the idea that Bobbi might come into the sandwich shop and see for herself how deluded I had been.”
“I had the sense that something in my life had ended, my image of myself as a whole or normal person maybe. I realized my life would be full of mundane physical suffering, and that there was nothing special about it. Suffering wouldn’t make me special, and pretending not to suffer wouldn’t make me special. Talking about it, or even writing about it, would not transform the suffering into something useful. Nothing would.”
“Gradually the waiting began to feel less like waiting and more like simply what life was: the distracting tasks undertaken while the thing you are waiting for continues not to happen.”
Those last two quotes seem to sit inside me. Nothing makes my suffering useful, and often my life feels like filling time until I get well. I talk all the time about the things I will do when I’m well – running and hiking and dancing, working a normal eight-hour day. Sometimes I see people out for a run and I become so sad and resentful.
I hope the things you are waiting for happen for you. And in the meantime, I hope your friends post you books.
It’s not COVID, just a bad stretch of my normal chronic fatigue.
Usually I try to find the humour in things. I use humour to cope with life. But over the past few years, life seems to be working hard to beat the humour out of me.
I started doing stand-up comedy in 2015, and was doing it regularly in 2016, just figuring it out. When I told people this, they often said, ‘That’s so brave.’ For me it wasn’t brave. It was raw fun. Even when no-one laughed – and there was definitely at least one occasion where I spoke for five minutes to a stone-silent audience – I had a good time.
Then one day I found myself dreading going to stand-up. It felt like too much effort to get myself out in the evening, to memorise a new bit. So I didn’t go. At the time I thought I’d abruptly lost interest in this thing that I had really loved. Looking back, this is when my chronic fatigue symptoms really started to ramp up. Stand-up was the first thing the illness took from me.
A friend texted on Friday. ‘You have been an expert at social distancing for a few years now — any tips to share? How are things down under other than a TP shortage?’
And I tried to think of something funny. But I couldn’t.
‘Look, honestly, the only tip I’ve got is to understand how much grief is part of it,’ I wrote. ‘If it’s just two weeks, maybe not so much. But if you’re forced to stay home and miss things that you’ve looked forward to, miss time with friends who you might not have much time left with, miss events that you may have spent months planning, grief will be part of it. Naming it helps.’
For the past four weeks, I’ve been feeling too unwell to function, falling behind, then getting just well enough to almost catch up before I fall behind again. I’ve slipped back to where I was about a year ago, health-wise.
Meanwhile, the world has become as unpredictable as my health. Everything seems precarious. Is there any point planning future events? On the rare occasion I’m well enough to go out with my friends, it safe to do so? Should I barricade myself behind a metre-thick wall of toilet paper?
I know I’m not the only one who feels this way. For people like my husband, it’s COVID-19. For me, it’s COVID-19 to power of three years of CFS. For you, maybe it’s worse.
I sort of want to give up. Just go to bed, pull my nine-kilogram blanket over my head and stay there until I’m well, until society stabilises. I’m worn out.