Medical Decision Making And The Wallpaper Effect

Thassos Island, Greece- Ouzo and olives at sunset -long before I had to make medical decisions for myself
.

Let’s play a game.

Imagine being recommended a medication that you were told could lower your risk of dying. But to be fully informed before taking it, you were first required to spend 24 hours in a room wallpapered with all the potential risks and side effects of taking that medication printed in large, bold font.

The words all over that wallpaper are:

Dizziness, nausea, weight gain, diarrhoea, constipation, abdominal pain, vomiting, back pain, migraines, suicidality, paraesthesia, restless leg syndrome, blurred vision, ringing in the ears, eczema, itchiness, hives, agitation, irritability, nightmares, confusion, muscle pain, swelling of the face, lips, tongue, and/or throat that may cause difficulty in breathing or swallowing, impaired concentration, poor memory, hair loss, decreased thyroid function, hepatitis, liver failure, hallucinations, slurred speech, kidney failure, trouble walking, tremors, seizures, coma, death

After 24 hours you are let out of the room and presented with the medication. Would you take it?

I’ve had some experience assessing health related risk versus benefit. Professionally I’ve done it with every animal I have recommended a treatment or diagnostic test for, from the simple (routine vaccinations) to the complex (invasive surgery in a patient who is already unwell).

But perhaps my personal experience of taking psychiatric medications on and off for the last 15 years is more relevant. The above list is just a sample of the potential side effects of some of my medications. If I printed them all out, and then wall papered my house with them, I could easily torture myself into not taking any of them.

This is the wallpaper effect.

I don’t disregard any of the words on that list. I know someone who almost died as a direct result of taking one of the medications I take. I have recently been diagnosed with decreased thyroid function, very likely as a direct result of taking one of my medications, There have been other medications I have tried and had to discontinue because of side effects.

And to put the risks I am working with into perspective: Common side effects for many of these medications are considered able to affect up to 1 in 10 people, uncommon side effects may affect up to 1 in 100 people, and rare side effects – so the more serious ones in the above list – may affect up to 1 in 1000 people.

As risks go, they are not exactly tiny.

And yet I opt to religiously take these potentially life-threatening medications. Why? Because the risk of side effects (in me, at the moment) is less than the risk of my Bipolar 1 Disorder symptoms being poorly controlled.

I have a higher risk of both a poor quality of life and death from my Bipolar 1 Disorder if it is unmedicated than I do from my current medication regime. My risk of death if I do nothing to manage this illness sits between 15%-20% (including not only suicide but non intentional causes of death due to manic or psychotic symptoms, which can include increased risk taking, hypersexuality, poor judgement and delusional thinking).

Thanks to modern medicine, humans in first world countries  are confronted with death less often. It is easy to delude ourselves into thinking that death can be avoided if we ‘do our research’ and make the right choices.

Speaking of ‘research’: True research is not a google search. Neither is it being spoon-fed unsubstantiated claims on social media by someone who couldn’t make their way through one research paper if they tried, let alone the hundreds it would take to qualify what they were doing as actual research. Research is something academics, including scientists and some medical doctors, are trained to do. It is rigorous, unbiased, and a skill that takes years to learn.

I believe the choices most of us make about our health have less to do with ‘research’ and more to do with the biases our environment soaks us in.

If you see mobile morgues or dead bodies outside your window, you are more likely to want the vaccination that reduces the chances of you dying from what killed the people outside your window, even if the vaccine carries a very small risk of death.

If you don’t know anyone who has died from that same illness, but you are marinated in the announcement of a potentially fatal side effect of the vaccine every time you look at a screen, you are likely to be more reluctant to be vaccinated than someone in the first group.

The scientific risk of death due to side effect is identical in both populations but the human response is different according to which narrative is shoved into our malleable brains. The capacity to weigh true risk against benefit flies away.

And that is why I choose not to live in a house wallpapered with my medication side effects.

On Uncertainty

Covid Lockdown In A Psychiatric Hospital

The Parenting Trap – Is Information The Enemy?

A couple of weeks ago I found myself being shouted at by another parent.

Someone semi well known, a parent to several children. This person has their fingers in a few pies, some might be called parenting advice adjacent, but to my knowledge they lack formal qualifications.

They delivered their passionate message via Facebook couched as a public service to ALL parents. I am wary of all unsolicited parenting advice. My aversion to it stems from my first pregnancy and early first-time motherhood.

Back then I eagerly soaked up all the information, like a stray kitten lapping up a saucer of milk. The need to have a vaginal birth. How essential breastfeeding would be for my baby.

I made myself sick on information.

In fact, had I stubbornly clung to it, that information could have killed both my baby and I. (A baby in the posterior position, postnatal psychosis brought on (in part) by sleep deprivation, a lot of medication to treat the postnatal psychosis that passed into breastmilk).

But back to the Facebook tirade I found difficult to look away from.

The message was completely overshadowed by the breathless anxiety in its delivery. I’ve never been a proponent of parenting out of the fear of what could happen based on general information. The topic of this particular rant is almost irrelevant because it could have been about anything. It happened to be about Tick Toc. More specifically a call to ban it from our children’s devices.

Personally, I would not give my primary school student access to any social media. But that doesn’t mean you shouldn’t.

Personally, I believe banning Tick Toc from high school students’ phones rather than letting them have it and teaching them about the dangers, is a bit like banning sex instead of providing good quality sex education. But that doesn’t mean you shouldn’t.

Reflexively banning anything because you’ve come across some frightening information about it will just make it more appealing to many teenagers. Like the kid who has never been allowed sugar… But stop I am straying from the point I am trying to make, which come to think of it can still be made with the kid who has never been allowed sugar.

Take two kids with the same parent and apply the No Sugar rule.

It might work perfectly for one kid who is pretty compliant, naturally eats a wide variety of foods, and happens to love taking vegetable muffins for lunches. They grow into an adult who carries their childhood eating habits into adulthood and live happily ever after.

The other kid might be more rebellious. They might gorge on sugar at every birthday party they go to and resent their parents’ strict (though well intentioned) food rules. They trade their vegetable muffins for chocolate bars at school lunches. They feel guilt and shame associated with eating sugar and grow into adulthood with disordered eating that takes years of intensive therapy to manage.

Whether it is sugar or social media – I no longer make blind decisions based only on external information (be it expert or the anecdotal variety hurled at me by social media). I aim to interpret parenting information in the context of my child(ren) and my family before I lay down any laws.

Favouring my intuition over information isn’t easy. In other areas of my life – such as my veterinary work and the management of my Bipolar 1 Disorder, I have always relied heavily on information to help me make decisions.

But I can’t count the number of times information (even expert information) has failed me as a parent.

In this age we are assaulted by information wherever we look. It can overwhelm and make us doubt our knowledge of our children. And if we let it, the information and opinion overload becomes a stick to beat ourselves to an indecisive mess with.

It has taken me years and plenty of mistakes to marry my intuition and knowledge of my children with a scant amount of trustworthy information to find the formula that works (not all but) a lot of the time, for this family.

I am not against parents sharing information and opinions. I share my own frequently. This post is a case in point. But I find it helpful to remember that ultimately we need little information to parent well, and it is information most parents agree on anyway:

Love your children unconditionally; provide them with food, water, shelter, the opportunity to exercise, and the best medical care you can access; don’t expose them to any forms of abuse; teach them how to navigate the world they inhabit; and if you are fortunate enough to be able to – provide them with an education.

Beyond that, you can ignore what everyone else is doing. It’s down to what works for you and your child.

You may also like to check out:

Rewards For Reports: Entitled or Deserved?

Mental Health Parenting Truths 101

If you enjoy my writing, my recently published memoir Abductions From My Beautiful Life is available on most online bookselling platforms including Amazon, Fishpond, and Booktopia. You can find an excerpt here: Book

Work Leave For Mental Illness If You Are Not Naomi Osaka

Naomi Osaka’s decision to step back from her job for reasons of mental ill health has stirred up a lot of debate in the last week. And yes, it’s great that she is being open about her mental ill health being the reason for this decision.

But Naomi Osaka is not representative of most people who experience mental ill health during their working life. The main reason is that (financially) Naomi can afford to take enough time off to recover.

I don’t point this out to minimise her suffering. Mental illness doesn’t discriminate. It will make you feel equally shit whether you are wealthy or not. But the luxury of time off for an employee to recover fully from an episode of mental illness is not one many workplaces will or even can accommodate.

This week several experts have stated that it is illegal for employers to discriminate against employees living with a mental illness, that these employees have a right to time off and to have their work modified to accommodate that mental illness.

I have mixed feelings about this. I feel exasperated, bemused, and tired. Because these earnest, well intentioned experts have no idea how mental illness and work mix in the real world.

The first time I experienced mental illness (postnatal psychosis followed by rebound depression) I was hospitalised for close to four months. ‘Luckily’ for my employer I was on maternity leave, so absolutely no thought had to be put into managing my absence, because it had already been planned for.

After I recovered, I continued to work as a small animal vet for another 12 years before taking a break to have my book published. In those 12 years I experienced a severe Bipolar 1 episode on average every 2-3 years. When I say severe, I mean requiring hospitalisation for weeks or months on end followed by a gradual re-integration to life outside the hospital.

Here are the two deal breakers my illness presents to most work places:

Firstly, for me, the onset of episodes of illness is sudden – ie between 24-48 hours. There is no time to plan or find someone to fill in.

Secondly, when I’ve had to phone work to say I would not be in for my next shift, I’d have to follow that with ‘I have no idea how long I will need off’.

Again – luckily for my employers – in those 12 years I was a casual employee. This meant I was effectively fired each time I got sick.

The practice I worked for was not doing anything illegal, and from a practical and financial point of view they could not have indefinitely held a position open for me. Each time I eventually recovered, and because there is almost never a shortage of work for vets – new hours were found for me. But me being able to slot back into the same workplace each time was due to the nature of the industry, not due to any laws to protect my position and income.

I am privileged, and thankfully my husband could support our family without my wage when I got sick. But my survival and roof over my head have had absolutely nothing to do with my workplaces being able to accommodate my mental illness.

Just because it isn’t legal to fire people or make their life hell because they live with mental illness doesn’t mean it isn’t happening. I know plenty of people who live with this reality.

This injustice occurs because of a gargantuan power imbalance between an employee who lives with a mental illness and their employer. Whether employers are aware of it or not: They hold all the power. Here’s why:

Stigma still prevents many people from disclosing they live with a mental illness to their employer – especially when they are asymptomatic. Once that person becomes symptomatic, they are likely to struggle just to get through each day or hour. Symptoms such as poor concentration and memory, distorted thinking, irritability, a sense of hopelessness, panic attacks, and non-existent self-esteem, (to list just a few) make it incredibly difficult if not impossible to not only schedule a meeting with their boss or with HR, but then present at that meeting as a fully functioning human being.

And if they do, and their boss discriminates against them they often don’t have the mental resilience and the finances for a legal battle to bring their discriminating employer to justice.  

These employees will often just go quietly –because that is all they have the energy for. Then their employer gets to shrug their shoulders and say: ‘Well it was the employee’s choice to leave!’

I am grateful to Naomi Osaka for cracking open the conversation about mental ill health at work a little wider. If it causes even one employer to stop and consider that the playing field between them and an employee who lives with mental illness isn’t even, it will be a good thing.

But there is still a long way to go before people who disclose their mental illness at work can expect to be treated the same as anyone who discloses a physical illness.

To read a bit more about my work life, you might like to check out my recently published memoir: Book and how it came to life: Welcome To The World ‘Abductions’

Goodbye My Thought Food Cover Girl

Lucy – photo by Elsa

A dull ache sits in my centre. My cat Lucy, immortalised next to my old red keyboard on my Thought Food home page, is gone.

2 days ago the vet in me woke to a 16 year old depressed, immobile, incontinent feline patient. I  needed more information before communicating with the cat’s owner, who was also me. The owner could read the vet’s face though and it made her feel as though a cactus was growing in her chest.

The vet came back with information later in the day.

Hypothermia, likely anaemia hiding under haemoconcentration, severe azotemia in the face of likely hyposthenuria, severe hyperglycaemia, and elevated ALT

At that point the owner and the vet in me began to overlap, like a Venn diagram, and both parts of me knew enough to know this:

None of these big words gave us a definitive diagnosis. To get to the big word that was causing the multi organ system problems indicated by a physical exam and first round of blood tests, we’d need to enter a new level of the diagnostics game. And with each new diagnostic test we’d opt for we’d open up the possibility of needing still more tests to get to the bottom of it.

What justifies further diagnostics in veterinary medicine?

The chance that the definitive diagnosis is something treatable or manageable to the point of returning the patient to a good quality of life.

When I started work as a small animal vet in 1998 we had fewer diagnostic and treatment options available for pets. It is good to have more options now. There are absolutely cases where we can return animals to a great quality of life where they would have been euthanased when I first graduated.

But this advanced knowledge also complicates matters, particularly when it comes to caring for our geriatric pets.

People often assume that the hardest part of being a vet is euthanasing animals. Yes, it can be devastating. But I have always found it equally as hard, if not harder, to hand hold people through the process of coming to terms with the fact that it is time to euthanase, while their pet is put through diagnostics and treatments that may prolong life but do nothing for quality of life.

An internal medicine specialist may well have wanted to know exactly what the cause of my cat’s abnormal blood results were before giving me their blessing to euthanase.

And, with those blood test results, had my cat been 2 instead of 16, I still would have stopped to consider that euthanasia could be the end point. But I would have gone ahead with more diagnostics because the chances of them leading to an outcome with a good quality of life for my cat would have been higher.

But I also knew that had I insisted on a definitive diagnosis 2 days ago, Lucy could have spent her last days scared, in a fluorescently lit hospital having rectal temperatures, blood and urine samples taken at regular intervals with no knowledge of why it was happening. Had she been able to come home it would have been heavily medicated, and still not feeling 100%.

When I weighed this with the tiny chance that she was suffering something treatable with a chance of return to good health – the risk of putting her through fear and pain for nothing at the age of 16 was not one I was willing to take.

Instead we made the hard choice.

Instead all four of her people cuddled her. We whispered in her little round ears and wet her fur with our tears. And I stroked her velvet neck as she drifted off into anaesthesia and then away into death.

Later that night I laid down next to Lucy’s siter, Lily and burst into deep sobs. These cats entered my life before the mental illness that came with my human children. With Lucy I have lost another part of me that existed before everything changed irreversibly…and not all for the better. The waves of grief beach unexpected thoughts and feelings.

When I work, I am not brutally honest with a vulnerable client if they ask me ‘What would you do in this situation?’ I stick to the facts, lay out probabilities as best I can and make sure euthanasia is part of the conversation so that they can make their own informed decision, in as much as their own time as their pet’s welfare allows.

But if the vet in me had been advising the cat owner in me for Lucy, I would not have held back. I would have said:

‘We can do every diagnostic test under the sun and you will probably get an answer, but we are doing it for you, not for your pet.’

Just because we can do something, doesn’t always mean we should.

In loving memory of Lucy (14.2.2005 – 7.5.2021)

You can find some of my other veterinary content in these posts:

The Cost Of Canine Anxiety

Veterinary Work And Bipolar Disorder: A Podcast Interview

Veterinary Work In The Time Of Covid-19: Unspoken Truths

Welcome To The World ‘Abductions’

Elation

For the last 14 years this emotion and I have had a complicated relationship. Before that, I experienced its giddy joy like anyone else.

It greeted me on the first days of longed-for holidays.

I experienced it on planes during take-off. In that moment of palpable lift, when the wheels left the ground and I shed gravity for a while.

It swooped through my body when I’d meet my childhood best friend, Sandra, at airports and train stations in different countries after years of separation.

Many moments of elation were tied to achievement. School grades, University degrees, getting jobs, have all elicited it. A psychologist would grimace at that, but there you have it.

But when I was nearly 33 something happened that warped elation for me.

I gave birth to my first baby.

The birth of a baby is usually viewed as the ultimate source of elation. Much is made of the overjoy of brand-new mothers.

But I was brewing something sinister when I went into my 33 hour labour on 2 hours sleep. That sleep deprivation, and the massive shift in hormones after the birth became the key that fitted the genetic lock for my dormant Bipolar 1 Disorder. It introduced itself violently, as an episode of postnatal psychosis when my baby was seven days old.

Three and a half years later I did get a day of pure elation after the carefully managed birth of my second baby. But I took none of it for granted, as though I had an inkling the psychosis would be back at the six week mark.

Psychosis in Bipolar Disorder is often preceded by mania. For some people mania is preceded by hypomania, which is like an artificial sweetener to the sugar of real elation. Same same, but different.

I do experience hypomania, but it is transient. Blink and you’ll miss it before it progresses to the high speed car chase of mania. I don’t spend weeks feeling fantastic about everything.  But I’ve lived through enough hypomania to make me wary of true elation.

I force my elation through an airport security like checkpoint before I allow myself to feel it, because I know it could be the hypomanic second that precedes a manic episode.

So when elation wings its way into my heart, I put it through my metal detector of questions: How are you sleeping? Any racing thoughts? How’s your memory and concentration? Any sense of urgency, a pressure in the part of your brain right behind your eyes?

But right now I am truly elated.

Even my psychiatrist agreed I am entitled to it, after I handed him my third baby a couple of days ago.

My third baby is of the paper variety. Its newborn smell is that of fresh new books.  Its gestation period has been longer than a human’s, longer than an elephant’s. 14 years from first words to published.

This baby’s name is ‘Abductions From My Beautiful Life’, nicknamed ‘Abductions’, and it is my memoir.

You will find my DNA all through it. My many selves. The child, teenager, university student, veterinarian, mother, psychiatric inpatient and outpatient, writer, mental health advocate, partner, and friend.

I wrote this book because there are not enough first-person accounts of severe mental illness, especially those featuring psychosis. I wanted to dissolve some of the misconceptions about people who live with severe mental illness, and the stigma that accompanies them.

The road to get this book published has been long, rough, expensive, paved with barely-existent patience, blood, sweat, many tears, diplomacy, and a lot of rejection.

It seems– books that deal frankly with mental illness (other than depression and anxiety) are too prickly for many publishers to touch – or to quote the feedback my agent and I got time and time again:

‘It is beautifully written, and an important story, but it is not commercial enough’ ie it will not make us any money, so we won’t go near it.

After several years of rejections, I did finally find a way to have it published, via a contributory contract with a publishing house in London that I supplemented with my own freelance cover designer and freelance copyeditor, to ensure it was published to a professional standard.

To the countless Australian publishers who passed on this book because ‘although beautifully written, it was not commercial enough’ – I say:

This book was never intended to be the next Harry Potter, or 50 Shades of Grey. But having finally published it I am elated because I have given the people who might be interested, the opportunity to read this allegedly ‘well written important story’.

An opportunity they may never have had if I had given up on it. So if you are one of those interested readers, you now get to decide whether or not you like it, rather than having an anonymous wall of publishers tell you what you should or shouldn’t be reading.

All reviews, feedback, and comments are welcome. For now you can leave them in the Comments section of this post, or email me at anitalink73@gmail.com

And if you do enjoy Abductions or find it meaningful and you can think of someone else it might resonate with, recommend it to them or maybe even gift them a copy.

Publication, purchasing, and launching information:

Abductions From My Beautiful Life will be published on Friday 30.4.2021

You can preorder it now and continue to order it once it is published from:

Amazon Australia – click the link BELOW the image

https://www.amazon.com.au/Abductions-Beautiful-Life-Anita-Link/dp/152898319X/ref=sr_1_1?dchild=1&keywords=anita+link&qid=1619352950&sr=8-1

Fishpond Australia

https://www.fishpond.com.au/Books/Abductions-From-My-Beautiful-Life-Anita-Link/9781528983198

Booktopia Australia

Booktopia https://www.booktopia.com.au/abductions-from-my-beautiful-life-anita-link/book/9781528983198.html

If ordering from the UK:

Fishpond UK

https://www.fishpond.co.uk/Books/Abductions-From-My-Beautiful-Life-Anita-Link/9781528983198

Austin Macauley

https://www.austinmacauley.com/book/abductions-my-beautiful-life

Waterstones

https://www.waterstones.com/book/abductions-from-my-beautiful-life/anita-link/9781528983198

If ordering from the US

Amazon US – click the link BELOW the image

https://www.amazon.com/Abductions-Beautiful-Life-Anita-Link-ebook/dp/B091N7BSZP/ref=sr_1_1?dchild=1&keywords=abductions+from+my+beautiful+life&qid=1619353373&sr=8-1

Barnes and Noble

https://www.barnesandnoble.com/w/abductions-from-my-beautiful-life-anita-link/1139205441?ean=9781528983198

Launches:

To begin with I am planning several smaller private launches over the next few weeks and months rather than one big one. They will probably take place at my house to work as flexibly as possible with ever changing Covid restrictions. But the format will be similar to a traditional launch with drinks, discussion of the book, maybe a reading, and books for sale and for signing, or if you’ve pre-bought your book you can bring it along to be signed.

 If you live in or are passing through Brisbane and would be interested in coming along to one of these smaller launches, please email (anitalink73@gmailcom) or Instagram DM me @anitalinkthoughtfood so that I am aware of your interest when I send out invitations.

I will post further information about launches as they evolve.

For more on how ‘Abductions’ came into being you might like to check out:

Accepted: Crumbs To Canary Wharf

And you can find a brief excerpt here: Book

Covid Year 2: Timing Your Perspective

Welcome to year 2.

The frantic newness of the pandemic has worn off, although the announcement of a lockdown still triggers an anxiety that (for some people) expresses itself in toilet paper hunger.

As we move into the second year of life with Covid I feel as though I am part of sick game of involuntary musical statues. During intervals of relative local stability we all dance to the music of few restrictions. But there is a sinister undertone – our movement can be stilled instantly when the Covid puppet master stops that music and we are all turned to stone for a while.

When Covid cancelled our family trip to Heron Island this time last year it was disappointing, but I countered it with perspective, a stiff upper lip. After all what was a lost holiday in the big scheme of things? So many people were worse off.

So, we rebooked the Heron Island trip for this year. We’d been due to leave on March 30. The anticipation of it had built joyously for the whole family. I was particularly looking forward to it. Our last family holiday in December was marred by the onset of a bipolar episode the day after we arrived that saw me unable to enjoy it and heralded more hospital time. 2020 Ends In Hospital

I am stable now.

Over the weekend two of us dutifully took Covid tests for minor sniffles, both of which returned negative with plenty of time to spare before our scheduled departure.

When I woke up on Monday morning, the day before we were due to leave, I actually thought we would make it. And then news of the 3 day Brisbane lockdown broke, and my joy turned to misery. Our household was plunged into mourning. There were tears, cries of shock, and lead filled stomachs as we processed this loss for a second year in a row.

Is my wording a bit dramatic?

Are you itching to respond with the catch cry of this first world country, the mantra of our year?

 ‘It’s ok because others have it worse than you.’

Does that make it ok?

Should this fact completely invalidate our experience or feelings? Does our disappointment, grief and anger have anything to do with someone else’s (potentially worse) experience?

No. It is totally unrelated.

 And often swallowing our feelings through gritted teeth can be unhealthier than just vomiting them out and moving on.

I first encountered the results of suppressing my emotions because ‘others had it worse’ the night before my daughter’s first birthday, thirteen years ago.

The condensed version of the time surrounding her birth (if you haven’t already read about it in some of my other posts) is this: A 32 hour labour on 2 hours sleep, developing postnatal psychosis 7 days later, a month later catatonic depression, months in a psychiatric hospital, electroconvulsive therapy and much medication, and finally home by the time my baby was 4 months old.

As I recovered, I practiced a lot of gratitude for my healthy baby, which in itself is not a problem, but I had not allowed myself to process my feelings about that time before I plunged into gratitude.

The night before her first birthday I was out to dinner with friends. I could not stop thinking about what had been about to happen to me the year before. On the way home I pulled into the maternity hospital car park and lost it.

I wailed, tears and snot streaming down my face. It was ugly. But I finally owned my grief, and silenced the pernicious little voice in my head that had been telling me that I had no right to my feelings because I had a healthy baby and  ‘others had it so much worse’.

It was only once I’d allowed myself to feel my feelings that I could move on baggage free and feel genuine empathy for those who, in the big scheme of things, had experienced worse.

I am not naturally inclined to drama. I am all for perspective. At times I have been quick to paper over my children’s strong emotions with perspective, not because it is helpful to them in the moment, but because it lessens my discomfort at their distress.

Perspective serves an important purpose. If it is timed right. Once the initial urgent feelings have been dealt with and released, perspective can help us move on with our compassion for others intact. But forcing it too soon can trap us in resentment and on the exhausting hamster wheel of pretending we’re ok, when we’re not.

 Perspective (however well intentioned) would have been an unwelcome guest in our house just after the news of the holiday cancellation broke. However, 2 days later it had just started to soothe me with the knowledge that it could indeed have been much worse.

Proof that this could have been much worse came just now. The Brisbane lockdown ends at noon today. Covid has pressed play again. Brisbane people get to dance into their Easter holidays.

For me? Right now? Perspective has again momentarily retreated.

Excuse me while I go away and vomit up my feelings about the military precision with which our holiday was assassinated. We were turned to stone over the exact two days when we needed to be dancing.

I will welcome perspective back once I have emptied myself of this minor resentment and am keeping everything crossed, that maybe the music won’t be stopped on our third rebooking in September.

You may also like to check out:

Making Sense Of It (introduces the concept of a ‘tantrum allowance’)

Covid Lockdown In A Psychiatric Hospital

When Covid-19 And Bipolar Recovery Collide With Unexpected Results

The mental load 2.0 : Airing your dirty dishes on socials

huge heap of dirty disgusting dishes in the sink waiting to be washed by unreliable flatmate

Has it really come to this?

To the women who document their displeasure about the unequal distribution of their mental load passive aggressively on social media:

The likes and laughing emojis you get from hundreds of strangers might give you a quick sugar hit of instant validation, but will they solve the issue of your unequally distributed mental load, or will it just corrode what sounds like the already leaking vessel of your marriage further?

The writers appear to feel more solidarity with the anonymous commenters than with the person they are in a partnership with. Underneath the jokes sits violently simmering resentment.

Let me back pedal to the source of my lack of admiration for this approach for a moment.

The first was a recent article a woman wrote about the (extensive) difficulty she was having getting her dog to feed her husband. Sorry her husband to feed the dog – although with the tone she used to describe her husband’s ineptitude, she could easily have meant it the other way around.

The second – I think it was on Youtube – an account of a woman who ‘went on strike’ and stopped washing the dishes and then posted updates about the ‘apocalypse’ unfolding in her house as a result of this. Piles of dirty dishes. The husband in question using a baby spoon to stir his coffee rather than doing the dishes.

I am not trivialising or dismissing the message these women are attempting to send their partners, but their delivery is conflicting.

In one breath it’s attempting humour and in the next red-hot anger.

Clearly we are not dealing with one of those minor sources of marital discord that can be shrugged off as a normal part of any relationship here.

The unequal distribution of the mental/domestic load is real and needs to be taken seriously. But is turning it into a farce and publicly infantilising the people whose behaviour you want to change the way to go about it?

Returning to the article about feeding the dog for a moment. The writer explicitly stated that in the four years she had off work outside the home, before returning to her career, she took on 100% of the domestic load. Feeling (rightly) entitled to a break, she then seemed surprised when the hand over of one chore (feeding the dog) didn’t run as smoothly as she wanted it to.

She also displayed another classic trait of the mental load martyr: overcomplicating a simple task, by insisting on her husband’s dog being fed a thermomix cooked diet for the sole reason that she thought ‘It made the dog’s coat shiny’.

Having read her article, I posted the following response:

As a small animal vet: The best diet for your dog is a high quality dry biscuit, something like hills science diet, water, and (if your dog tolerates them well) fresh raw bones for their teeth. You are wasting everyone’s time, energy, and to be honest a lot of words in your article on preparing fresh food for your dog. 

As for the distribution of mental load: You mention that in your four years off you shouldered 100% of the domestic load. Why? Did you both consider your husband less of a parent or part of the household in that time? If he worked long hours, he may not have been able to do as much of it as you, but does that mean he should have done nothing in that time? If he had been living in a hypothetical share house instead of your family during the time he worked long hours, would his housemates have been happy to do his laundry, dirty dishes, and feed his dog?

So maybe setting the bar so low during those years is making it harder now? The martyrdom of women shouldering and complaining about the mental load is real. Change your dog’s diet for everyone’s sake – including your dog’s. Tell your husband if he doesn’t feed his dog you will report him to the RSPCA. If you stop treating your husband like a an inept toddler, he might stop acting like one.

To be clear – I don’t think there is anything wrong with giving your partner a wake up call to shoulder their share of the domestic load, by letting things slide. But make a choice – it’s either something funny that you don’t really care about that you post on social media, or it is a serious issue in your relationship, in which case yes, let the dishes pile up until your partner gets the message, but don’t then simultaneously trivialise and weaponise it by posting it on social media. Doing so might get you the hit of anonymous likes, but it’s not going to solve the problem in your relationship.

I have previously written about the equitable division of mental and domestic load in my relationship. Your Mental Load = Your Responsibility We both have careers. We share two children, and a menagerie of pets, and all the mental load. I have been called ‘lucky’ because of this.

I am not lucky.

I made a choice to be with my husband. We work on communicating well and from the very beginning of our relationship I have never given him the illusion that I would carry 100% of the domestic load.

But if either of us ever resorted to shaming the other on social media, if we had a significant issue in our marriage (such as the unequal distribution of the domestic load) I suspect we would each seriously re-examine our choice to stay with each other.

Post script: This post is not in any way aimed at those living with or who have escaped domestic violence or who are living with mental illness or any other disadvantage. It was intended as a prompt to reflect for the women who do not live with domestic violence, but do live with straight, white, cis-gender, non-disabled, privilege and who have choices but prefer martyrdom.

You may also like to check out:

Your Mental Load = Your Responsibility

Don’t Try This At Home: Schooling

Rewards For Reports: Entitled or Deserved?

Your Mental Illness? Make It Your Narrative

CN: brief non specific mentions of suicide, trauma, and eating disorders

If you have lived experience of mental illness, who tells your story?

Or even just fills in the blanks?

Silence about lived experience of mental illness from those who live with it is a frustrating paradox. Silence breeds stigma. Stigma breeds silence.

And there is a certain hypocrisy to complaining about the stigma if we choose silence.

I don’t say this lightly or without understanding the complexities of speaking out about our lived experiences.

I don’t live with an unprocessed trauma underlying my mental illness. Nor have I experienced treatment (or lack thereof) in the public mental health system. So, I have no right to speak about the ability or willingness of people to share their lived experience in these circumstances. I live with straight, white, cis-gendered, able bodied privilege. This means my path to diagnosis and high quality mental health care has been smoother than for those who don’t. All these factors make sharing my experiences easier.

One of the things I love about writing this blog is having ultimate control of my narrative. I don’t get paid for my posts. But I also don’t answer to anyone.

But I did recently have my voice stolen for a bit and I loathed the experience.

I’ve done some media interviews over the years Radio And Podcast Interviews and have generally felt empowered by and happy with the outcomes. Until this most recent one.

I agreed to it before I knew it would be written in first person based on a phone interview with me, but not written by me.

I was sent the article to fact check before it was published. The facts were correct. I hadn’t been misquoted, but it sounded nothing like me. It made me feel less than who I am. I was able to suggest some alterations. But even once my changes were incorporated the final article still felt clumsy. I would not have published it as one of my posts.

The journalist who interviewed me didn’t even tell me when the article was published. I found out when another journalist (who’d read the article) contacted me to ask if I’d be willing to interview for another ‘first person’ article written by them, about my experience of psychosis.

I politely declined. This (second) publication’s articles are sensationalist, pumped out to shock the masses and exploit the contributors. It would have been a hatchet job on my values. The opposite of empowering those with lived experience, educating those without.

I have no hesitation broaching my experience of psychosis with individuals, organisations, or the media, but only on my terms. Stories of psychosis are still in a different category to those of anxiety and depression. The media is not as used to them. They have to be handled with care and controlled by the person telling them.

I don’t even like my family or friends speaking for me about my illness. Not because I don’t trust them, but because I have more practice at relaying my experience with context and nuance.

However, disclosure around mental illness without an awareness of how to do it safely can be damaging, even dangerous. Whether you disclose your experience to one person, several, or in the media, yours and your audience’s safety must be your first priority.

If disclosure is likely to compromise your current mental health or retraumatise you, then you are not in the right space for it.

Especially if you are sharing with a wider audience you have to consider that some of that audience may be living through an episode of mental illness at the time of your disclosure and be particularly vulnerable to any information you share.

Content notes at the beginning of any article or interview containing triggering subjects for example suicide or trauma give your consumer the choice about whether they feel well enough to read/watch/listen on.

There are safe ways to relay distressing experiences to your audience. For example sharing an experience of a suicide attempt can help open up vital conversations around suicide and lessen stigma. But sharing explicit details about methods can be harmful to anyone in your audience who may be experiencing suicidal ideations. Similarly specific details about body weight, diet, or exercise should be left out of a safe disclosure around eating disorders.

Sharing your experience of mental illness is a personal decision. You have the absolute right not to.

But think about this – If you live with a mental illness and choose silence, you are leaving a space, for someone else less qualified to speak for you. A hole shaped like you, to be filled with more stigma.

If we give the world a void instead of our voices, it will fill it with its own assumptions. So, if you are well enough and able to do so – set your terms and boundaries, choose your conduit and gift the world your story.

I decided not to publish the link to the external article mentioned in this post. If you are interested in reading it to compare its style to my usual posts feel free to message or email me and I will share it individually.

You may also be interested in:

Media-Made Monsters

Don’t Call Conspiracy Theorists Crazy

Vulnerability And The Exploitation Of Kanye West

Trauma And Bipolar Disorder: Chicken Or Egg?

Photo by haik ourfal on Unsplash

Content Note: This post mentions trauma. It does not include specific details.

It’s a little acknowledged truth that sometimes bipolar disorder does not spring from a history of trauma. On my first admission to hospital and every admission since, I have been asked whether trauma smoulders in my past, and keeps the fire of my bipolar disorder burning.

Up until relatively recently parents were still automatically blamed for their children’s mental illnesses, particularly schizophrenia and bipolar disorder. And while abusive parenting can be a contributing factor to these illnesses, and parents can pass on a genetic predisposition to a highly heritable mental illness such as bipolar disorder, beyond that, a parent isn’t responsible. As for my upbringing – my parents were not perfect. But they were loving and supportive. They were not a source of trauma.

I searched for years for some of the more common culprits of a trauma history (such as physical, sexual, or emotional abuse) hiding in the shadows. I ran a fine-toothed comb through my entire living memory for evidence. For something to explain the existence and severity of my bipolar 1 disorder.

After the second time I got sick, I began to wonder if I was missing something. If I had blocked out something horrible? I spent close to a year working with both my psychologist and psychiatrist to try and unearth a tangible cause for the god awfulness that had descended on me. And I came across a lot of things in this archaeological dig through my psyche.

Among many happy memories. I found sadness, exclusion, some bullying. I found burnout and disappointment. I found ambition and perfectionism. I found drive. I found questionable decisions. I found some experiences that my psychiatrist raised his eyebrows at, but when my psychologist worked through them with me, we found no symptoms of PTSD, no persistent feelings of powerlessness. I found experiences that were difficult and unpleasant and challenging.

But I did not find trauma.

Ironically, the only trauma I have ever experienced came with this illness in the form of psychosis, especially the first episode. Nothing I have experienced before or since that first time comes close to the hell of psychosis.

For me, the sudden onset of this severe psychiatric symptom contributed to its traumatic footprint. One week I was due to give birth to my first baby, with no history of mental illness. The following week I inhabited a terrifying alternate reality that no one else could see, in a psychiatric hospital Special Care Unit, tipping highly medicated breastmilk down the sink, while my husband looked after our new baby at home. For me, the experience of psychosis is the definition of terror and powerlessness.

The trauma of psychosis left its mark. After my second episode I started having panic attacks. I had never had them before. They were linked to the fear of psychosis recurring.

It took a long time to process what happened to me and to learn to live with the ongoing implications of this illness. But I am fortunate it was an acute trauma, not chronic or complex, and not of childhood onset. It didn’t happen at a time when my brain was still developing and more vulnerable to this kind of assault.

I have worked towards having excellent insight, which means I now recognise the precursor symptoms of mania, which can lead to psychosis. The early detection of symptoms and acting on them immediately have meant it’s been six years now since I’ve experienced true symptoms of psychosis. The deep sense of powerlessness has eased. In my case the trauma was a side effect of my bipolar disorder, not a causal factor.

But I sense I am in the minority. Of the people I know who also live with bipolar disorder many carry a history of trauma and/ or complex PTSD with them which, occurred before the emergence of their bipolar disorder.

I do not have the complication of a contributing trauma to re-trigger episodes of illness and to work through. These days, I don’t have a knotted web of psychological issues to untangle before my medication can get to work. I also think letting go of my resentful feelings at being landed with this illness has been somewhat easier because I can’t lay blame or direct my anger at anyone or anything  specific for causing this sickness.

And I am grateful for all of that.

If this post has brought up difficult feelings or symptoms for you and you are struggling, please contact your mental health professional. If you are in crisis (and in Australia) please phone LIFELINE on 13 11 14

Further reading:

Insight: The Essential Ingredient

My First Time

Misunderstood Mania

Covid Lockdown In A Psychiatric Hospital

I recently encountered Covid  restrictions and a lockdown as an inpatient in a psychiatric hospital. And while the specifics are relevant, my experience was more complex than donning a mask and staying inside. But let’s start with the specifics.

There is the loss of the hospital dining room and its well-stocked salad bar. This normally bright spacious room filled with chatter and choice has closed, gone into mourning. The ability to choose your own food and sit where you liked – a small token of independence – replaced by a tray delivered to your room at 7am, 12 pm, and 5pm with a sharp rap at the door. You get little choice and a small window to eat before the kitchen staff are back to collect your tray.

There is not being able to leave the hospital grounds until discharge. No opportunity to test where you are at with a short visit home. Another small freedom lost, and you become totally reliant on visitors to bring you anything you might need from the outside world. Until restrictions turn to lockdown and the visitors are banned from visiting.

All staff start wearing masks, and the buzz of their anxiety fills the hallways like a swarm of bees. Within a few days patients are told to wear masks anytime they are outside their rooms.

For anyone who has lived on this planet for the last year, none of these restrictions or lockdown conditions will sound unusual. Everyone has lived some version of them.

But my experience of them as a psychiatric hospital inpatient was different to my experience of them when I’ve been well and at home.

Here’s why:

Even with access to an excellent private psychiatric hospital, being an inpatient strips me of autonomy and leaves me feeling as vulnerable as a slug on a busy highway.

The admission process alone – which includes providing a urine sample for drug testing and the thorough inspection of your bags (for any means of self-harm or suicide) by two gloved nurses – is a humiliating experience.

 It screams: ‘You cannot be trusted’ and whispers sharply: ‘We are in charge of you now.’

It’s made worse if the nurses attempt light conversation about the contents of my bag.

‘‘That looks like a good book…’

I don’t have the energy for it, and it makes me feel like a toddler they are trying to distract from something unpleasant.

As a patient in a psychiatric hospital I frequently lose the right to my feelings. For example:

One of my admitting symptoms (usually prodromal to mania) can be intense pathological irritability. It is completely different to feeling irritable in a normal context. And it is not the same as the irritability I feel when I am forced to interact with one of the nurses whose attitude grates on me even when I’m well.

 I try to be polite, but when my tone slides into curt, she cocks her head and says:

‘Your irritability levels are quite high today.’ before self-importantly noting this down as a symptom for the day. And I am powerless, because if I protest that would just be further proof of my mental illness to her.

And then there are the cringeworthy names I am called, mostly by nurses and kitchen staff:

‘Dear, Darling, Love.’

 I am ‘Darling’ to only my mother. ‘Love’ never fails to sound derogatory to me. As for ‘Dear’ – one of my worst and earliest hospital experiences involved being called ‘Dear’:

Fourteen and a half years ago when I was less than a week into my first episode of mental illness, I experienced a severe psychotic episode. I was led into the Special Care Unit (the highest security locked ward) of the psychiatric hospital by two nurses, one gripping each elbow.  On the way there, one of these nurses said:

‘Don’t worry Dear. You won’t remember any of this in the morning.’

The next morning I was so sedated by the (necessary) medication I‘d been given, I may not have looked as though I had any memory of the horrors of psychosis. But I remembered all of it. The proof is in the account of that night in my memoir being published this year.

If I knew where to find the nurse who called me ‘Dear’ (on that occasion), I would give her a copy to show her just how much a patient experiencing florid psychosis can remember.

There are many other factors that contribute to my sense of infantilisation in hospital. But elaborating on them would take me well over my word limit. So I’ll leave it here, for now.

Thankfully this recent admission was short (two and a half weeks) but the combination of the inherent lack of autonomy in being a psychiatric inpatient and the above mentioned  Covid factors hugely amplified my vulnerability.

And I have never felt so powerless.

You may also like to check out:

2020 Ends In Hospital

Visiting Someone In A Psychiatric Hospital?

On Uncertainty