Falling victim to medical gaslighting

Triptych of an exhausted woman sleeping
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.

Lost hours 2020
January: 89 hours
February: 110 hours
March: 119 hours
April: 87 hours
May: 63 hours
June: 90 hours
July: 60 hours

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.
xo

 

Ep 5: The Year that Almost Killed Anna Downes, author of The Safe Place

Anna Downes The Safe Place.png
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.

You can read my read my review of The Safe Place at Newtown Review of Books, and listen to episode 5, our interview with Anna Downes.

 

Podcast: James and Ashley Stay at Home

James and Ashley Stay at Home podcast

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 inspire, build fellowship and entertain, or at the very least, explore how staying at home has its benefits.James and Ashley Stay at Home podcastJames 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.

Podcast player screengrab

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 ofScreen Shot 2020-06-07 at 7.25.48 pm 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.Writers group with six people holding booksEpisode 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. Next month, we’ll feature Anna Downes, author of the soon-to-be-released psychological thriller, The Safe Place. Make sure to subscribe on your favourite podcast app.

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.

And in episode 7, we interview British-Japanese author Katherine Tamiko Arguile about her debut novel The Things She Owned and the health crises that drove her to pursue a writing career.

You can listen to James and Ashley Stay at Home via the website, or on SpotifyiTunes, or wherever good podcasts live.

Ashley
xo

PS. Looking for more great writing podcasts? Writing NSW has you covered.

Conversations with Friends

Conversations with Friends by Sally Rooney
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.
xo
Ashley

 

Life: Cancelled

Author Ashley Kalagian Blunt with rainbow bookshelvesI’ve been really sick.

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.

Stay well, wonderful people.
xo

 

The Lost Hours Project

This is my fourth year with chronic fatigue syndrome. I’m so much better than I was, and I’m still so far away from reliably good health.

Because CFS is an invisible illness, and because I sometimes post pictures of myself out doing things, it’s understandably hard to reconcile how sick I still am with the public image I create.
Person with invisible illness sleeping
I understand this – it’s hard even for me sometimes. This week I had five very good days in a row, and caught myself thinking, for the ten-millionth time, ‘if I feel this good now, how could I go back to feeling sick? This must be the end of it.’

On Friday I made a list of things I wanted to get done this weekend. It wasn’t an overly ambitious list, just the usual getting priorities organised. It did include a few important things, like working on the copy edit for my new book. I was also hoping to write a fresh interesting post for y’all.

By noon on Saturday, my body was not having any of it. I spent the rest of the weekend curled underneath my weighted blanket. I have no idea how this week will go.

This year I decided to track how many hours I lose each month to illness, as a way of sharing the reality of chronic fatigue syndrome, and also as a way of (hopefully) showing my erratic but gradual improvement between now and December.

I’m doing this now in part because the number of hours will be tolerable to calculate. In the past they would have been too depressing.

In January I lost 89 hours. If you assume the average healthy adult should have 16 waking hours per day, then in January a healthy person should have had 496 waking hours. I lost nearly 20 per cent of the month, and that’s doing really well compared to previous years.

In other words, I lost 1 in every 5 days and I can still call that ‘doing really well’.

The numbers help, because even the photo can’t convey the reality. It doesn’t show the achy, flu-like symptoms, the cognitive struggle, the hours leading up to this moment that I’m still calling ‘productive’ even though I was struggling to hold myself upright, to think straight.

You can follow the lost hours project via Instagram. Whatever else is happening for you, I wish you good health. 

Ashley
xo