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

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?

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

2020 Ends In Hospital

I am going into hospital later today.

And I am aching to get there, straining towards the moment I close the door to my hospital room on a world I am the wrong shape for right now.

How did I get here this time?

Fourteen days ago I had a regular appointment with my psychiatrist. Just a Bipolar 1 Disorder monthly maintenance appointment. I was completely asymptomatic.

Thirteen days ago I left for our beach holiday and forgot to pack my swim wear. Subtle. I mean that could happen to anyone. Right? But by the following morning I was symptomatic alright. My short term memory and concentration were dissolving like sugar cubes in boiling water.

A buzzing pressure behind my eyes radiated up my forehead. I knew from bitter experience, if I did nothing, soon that buzzing could make me second guess what was real or not.

That was symptomatic enough to page my psychiatrist on a Saturday morning. It’s only the second time I’ve paged him out of hours in 14 years. He called back in under three minutes.

Over the last nearly two weeks, the first of which I stayed at the beach, he telephone consulted with me every second day, adjusting medications, a little more of this, a little more often of that. I slipped from my bed gratefully into the ocean, timing the most sedating medications for times when I’d be in bed not the ocean. I seemed a little better, maybe? But then not.

Back home we continued every second day phone consults, adjustments. This is by far not the sickest I have ever been (although psychosis and catatonic depression requiring ECT to reverse, do set a very low bar)

So why would I want to go into hospital, rather than continue treatment at home?

Here’s why:

The surface of my brain feels as though it is covered in papercuts and being surrounded by people and noise is like having lemon juice dribbled over the cuts.

Trying to hold in the irritability of being around people and noise (including my close family) is like being intensely nauseous with someone threatening to punish you if you vomit.

One of the parameters I use to assess how close I am to needing to go into hospital is ‘the sandwich test’. Think about the amount of concentration and short term memory it takes to make a sandwich – nothing fancy, just two slices of bread, some butter and one topping. For most healthy, able bodied, able brained adults, this is not a challenging task.

Right now – I can still make a sandwich, but it’s a challenge. I am making a decision, based on past experiences, not to wait with hospitalisation until challenge becomes an impossibility.

As for the seasonal timing – Christmas and New Years celebrations? I am veteran enough in the management of this illness to know it has no knowledge of nor respect for holidays and anniversaries. I could list my tenth and fifteenth wedding anniversaries as times spent in hospital, a longed for trip to Paris cancelled because of recent hospitalisation, and that would be the beginning of a list so long I’ve forgotten most of it. These times are just human constructs. If it swallows them I don’t dwell on them.

Instead I celebrate the unscathed special occasions extra hard, to make up for the times there is nothing.

The final reason for going into hospital now, is because I can access this level of care. I am fortunate to have the option of going into a private psychiatric hospital when I am sick. The standard of hospital care I will receive will be excellent. It will far exceed anything the public psychiatric hospital system has to offer.

I loathe getting sick enough to need hospital support. But perhaps even more than this I loathe the hypocrisy of someone with my privilege not utilising that support because of some misguided stigmatising ideas about what it means to be a patient in a psychiatric hospital.

I am profoundly grateful I can afford care in a good private psychiatric hospital. And part of my own recovery, once I’ve stabilised medically, is to remember there are many people living with this illness, and other severe mental illnesses, who are learning to live with them with far less support and privilege than I have. When my recovery feels hard I focus on this:

If I access the supports I am fortunate to have, I am more likely to be around for long enough to help raise awareness of the inequality between our private and public mental health hospital systems, and work towards our public mental health hospital system actually supporting some of our most vulnerable when they need it most.

If you are new to Thought Food and would like to know a little bit about who I am when I am well, you may like to check out:

Who Am I ?

Radio And Podcast Interviews

Mental Health Parenting Truths 101

Written for Queensland Mental Health Week 2020

At some point you will get it wrong.

It will be well intentioned. It may come from a place of not wanting to replicate your own upbringing or the mistakes you think other parents are making. And it will probably be informed by your experiences and biases.

I’ve always known this…in theory.

But the other day my fourteen-year-old daughter courteously yet clearly served my imperfections in this area up to me. This was no teenage tantrum. It wasn’t even an argument. It was simply a conversation in which I was presented with unpalatable information about myself, and then had to choose what I did with it.

It started simply:

‘Mum, can I please get TikTok? Remember I asked you about it a month ago, and you said you’d think about it.?’

‘Mmhm.’

For context – she gained Snapchat and Instagram over the last few months, to my knowledge has not abused any of her privileges, and right now appears to be in good mental health.

So, we talk about how she’d manage seeing distressing content if it popped up. I probe her with her worst-case scenario.

‘What about animal cruelty?’ I say and follow it with a graphic example.

‘I’d talk to someone about it.’ She answers calmly.

‘Who would you talk to?’

She doesn’t hesitate: ‘Well definitely not you! Probably Dad.’

‘Why not me?’ I ask,

‘You and your mental health stuff – you’d blow it all out of proportion, take me to a psychiatrist, have me medicated and force me into years of therapy.’

I did ask.

And while she is wrong about the imagined consequences of telling me she saw some distressing social media content, she is right about something else.

I am hypersensitised, filled with knowledge of the very worst mental illness has to offer. And not just my own. Every time I go into hospital, I share that space with others who are going through their own worsts.

When I see young inpatients often only four or five years older than my eldest child with bandaged wrists or cutting scars, bolts of fear shoot through me. Fear that one day my children could hurt like that.

Every time after my Bipolar 1 Disorder has put me through hell I am frozen by the threat that I will have given this illness to my children. I know that (beyond not introducing significant trauma to their lives and warning them of the dangers of drugs that can trigger the genetic component of this illness) there is nothing I can do to outparent it. But I still try.

After I got sick I was determined my children would grow up in a family that was open about mental illness. There would be no shame and no stigma. They would know from a young age where I was going when I went into hospital and why.

The knowledge that sometimes mental illness sprouts in childhood and adolescence is heavy and made heavier by the fact that sometimes it is fertilised (even in the absence of major trauma) by parents unwittingly invalidating their children’s’ feelings or experiences.

I never wanted to be that parent. And I am not. But I may have made the opposite mistake.

 By unintentionally force feeding my children my concerns around mental health, could it cause them to turn away from the very tools that could help them should they run into a mental health crisis?

Mental health is stitched into the fabric of our family’s conversations partly due to my lived experience, but also because of what I do. My children have never known a time when I haven’t been a vocal mental health advocate. I write about it. I talk about it frequently – sometimes quite publicly.  

And if I dig deep into my motivation for wanting to change the way mental illness is perceived and treated, my children are at the core of it. That motivation is as simple as it is unrealistic:

I want to fix our mental health system so that it can help rather than harm my children should they ever experience mental illness.

I am loathe to admit it but yes sometimes all my motivation, knowledge and focus, can morph into hypervigilance, ready to pounce on the very whisper of something not being right with my children’s thought patterns.  And in my futile efforts to protect them from my worst nightmares, at times I probably veer dangerously close to pathologizing their emotions, which can be as damaging as not acknowledging them at all.  

I do this reflexively even as I know that parenting out of the fear of what could happen is even worse than living your own life ruled by fear.

And yet, deep down I know that if either of my children get sick it won’t be my fault or TikTok’s. If that happens, hopefully their father’s less informed love will be the perfect counterweight to remind me that while my knowledge might be useful in some situations, at other times applying the full weight of it can be like attempting to kill a fly with a sledgehammer. Ineffective and potentially damaging.

Post scripts:

It was a yes to TikTok.

While I am deeply grateful that right now neither of my children require psychiatric care, my advocacy work will continue, because it is grim out there. I caught up with a friend recently whose child does need a child psychiatrist urgently. The waiting time to get an appointment with a private child psychiatrist is currently twelve months.

Or there’s the public hospital Emergency Room if symptoms become life threatening while you wait…

Published with full permission from the fourteen year old who also helpfully pointed out I’d misspelt TikTok in the previous draft.

You may also like to check out:

Talking About Mental Illness With Children

As Mothers Of Sons

As Mothers Of Daughters

Is YouTube Rotting Our Brains?

On Uncertainty

Written for QLD Mental Health Week 2020

How does uncertainty make you feel?

I ask because uncertainty is having a moment right now. It galloped in with the Covid-19 pandemic, and the further we get into it the more it seems to be digging itself into our awareness.

I used to be deeply uncomfortable with the pebble of uncertainty in the shoe of my life. I liked to know what was ahead. It gave me a (false) sense of control and the misguided belief that just because I couldn’t see uncertainty in my life, it didn’t exist. I deluded myself for decades that when there were no clouds on the horizon, the course of my life was somehow more certain than if I could see trouble ahead.

Then all the certainty in my life was put through a paper shredder within five days of my first baby’s birth.

I got my new baby experience with a side of florid postnatal psychosis severe enough to warrant admission to the locked Special Care Unit of a psychiatric hospital. My sense of certainty and control over my life went down the toilet.

After I’d recovered from this psychotic episode I felt entitled to some certainty. I wanted to know this nightmare was over. And I wanted a guarantee it would never happen again.

So when my psychiatrist mentioned ‘a possible underlying Bipolar Disorder’ and that it would ‘take three to five years to know for sure’, the inside of my head threw a combination of a tantrum and a pity party.

When I got sick again after three years, after seven years, and after nine years and my diagnosis of Bipolar 1 Disorder was confirmed, I still felt entitled. Entitled because: ‘hadn’t I suffered enough yet?’ Entitled to not have to tiptoe through my life with everything clenched, waiting for the next time this thing pounced.

I have only recently acquired some degree of acceptance of the uncertainty this illness introduced into my life. I didn’t enjoy the last two episodes in 2018 and early 2020, but I also didn’t waste energy resisting them. In the same way I no longer spend any of my resources anxiously wondering when it will happen next and how bad it will be, because without wanting to sound nauseatingly Zen, the truth is: It will be what it will be when it will be.

Uncertainty exists in everyone’s life every day. But instead of it floating along in the background, right now it is constantly being rammed down our throats. It’s like having a nasty little gremlin on your shoulder whispering over and over again:

‘You do realise bad things could happen to you at any minute’, when the true risk of something bad happening to you is probably not that different to pre-Covid times.

For our mental health to survive this pandemic we have to learn to live with uncertainty, because the end of it is nowhere in sight. And just like my psychiatrist couldn’t give me any certainty when I first got sick, the smartest scientists in the world aren’t able to accurately answer this question about Covid-19: Will it ever be over, and if so when?

Uncertainty is an uninvited, kicking, snoring bedfellow. So how do we get comfortable with it?

First we tease out what about this situation we can control and what we can’t. For example, we can’t control the flow of information that feeds our uncertainties rushing over us every day, but we can control how much of it we absorb.

And once we’ve done what is in our control to help ourselves, we have to try and unclench from the need to know what is going to happen next. We need to stop trying to know and plan for a future that is like a spiderweb in a storm. Here’s what I mean:

During one of my admissions to hospital I sat staring out of the window of my room feeling as though there was no point in doing the work to rebuild myself because my future was too uncertain, my illness could tear me apart again anytime.

Over a couple of days of intermittent staring I noticed a spider in its web just outside my window. Every night it stormed. Rain, wind, a couple of times hail tore chunks out of the web, at times almost destroying it.

That spider showed me the way out of my tangled thoughts, by not only rebuilding every time after its pristine web was wrecked, but doing so in the face of the risk of the same thing happening again, whether the next day or in a year.

The sword of an uncertain future has hung over every single one of us since the day we were born. Nothing has changed there. It is just up to us whether we choose to battle with uncertainty and lose, or whether we accept that being alive will always mean living with uncertainty, pandemic or no pandemic.

You may also like to check out:

Lessons For A Control Freak

The Other Curve Being Flattened

When Covid-19 And Bipolar Recovery Collide With Unexpected Results

Tokenism In Mental Health Awareness

Tokenism In Mental Health Awareness

Written for QLD Mental Health Week 2020

Saturday 10th October is World Mental Health Day and I feel a little conflicted about highlighting it. There are a lot of positives to having dedicated days or weeks to draw our attention to mental health. But I also believe we need to approach these awareness days with a little caution. It’s too easy to post or repost something related to the topic, tick the box of doing good and move on with our days.

Ironically these tokenistic efforts are becoming more common as awareness around mental ill health grows, especially when we don’t have to move beyond the comfort of our keyboards to feel as though we are achieving change. Of course it is good that there is more awareness, tolerance and marginally less stigma surrounding mental ill health than there was fifty or even twenty years ago. But we have to make sure we don’t replace the old insensitivities with their more modern counterparts.

I have written about my dislike of RUOK day before RUOK Day: Full Disclosure and this year I heard another perspective that reenforced my reasons for disliking this day. When I am well, my psychiatrist appointments usually consist of me requesting scripts for any medications I am running low on, a brief check in with how I’m going and then we chat about the state of the world, my advocacy work, his psychiatry work. This year one of my appointments happened to fall around RUOK day and we talked about the pros and cons of this day. I expressed my opinion and my psychiatrist referenced one of his patients coming in on RUOK day in distress because they were bombarded by people they knew asking them if they were ok. People they didn’t hear from for the rest of the year. People who were probably well intentioned, but using them as the token mentally ill person in their lives, to tick the box of having asked: RUOK?

Awareness around mental ill health should not be confined to one day or one week of the year. Episodes of mental illness flare unpredictably and feel as though they will never end. This feeling is fed by the fact that no one can tell you when it will end. There are good days and worse days. There are days when the risk of it turning into a terminal illness skyrockets. Someone may have a spectacularly good day on RUOK day, a calm and uneventful mental health week, but be suicidal sometime in April or on Christmas day, when it is all too easy to be under the impression that we showed our support for those among us living with mental illness back in mental health week, and Christmas day is busy and by April we are into Caesarean awareness month and IBS awareness month.

 So what can we do to be meaningfully aware of the impact mental ill health has on those of us who live with it, and what can we do to support them for more than a day or a week of the year?

Everyone who lives with mental illness is different and everyone’s experience is different even if they live with the same diagnosis. So, I don’t speak for everyone.

For me – I don’t need to be asked how I am. I have enough insight into my Bipolar 1 Disorder to know when I need to seek help. I am fortunate to have good support systems in place, so I don’t tend to feel lonely or isolated.

For me it is all about the language people use. Hearing or seeing stigmatising language either in the media, on social media, or spoken, punches me in the gut. When I am confronted with words like nuts, crazy, lunatic, psycho, mental institution, – the list is long – it belittles me. It strips away the facts of my life, my healthy functional relationships, my personality, my university degrees, my profession, my interests, my sense of humour and it reduces me to a hellish caricature of who the misinformed masses believe someone mentally ill is.

So, think about how you write and speak around me. If you hear or see someone else perpetuating stigmatising language around mental illness, call it out. Do so politely, but raise awareness of it. I do it as often as I can, but I also get tired of being told to shut up, get over it, or that I am overreacting.

Perhaps the most helpful thing you can do for someone in your life who lives with mental ill health is not to automatically ask them how they are, but to ask them what you can do to make them feel valued and supported all year round. They may answer: ‘Ask me how I am’ in which case you are doing it meaningfully and mindfully, not because it is a certain day of the year.

All that said, Happy World Mental Health Day everyone. In honour of it also being Queensland Mental Health Week from 10th-18th Oct I am aiming to drop a few additional posts in Thought Food this week.

Look after yourselves and each other!

You may also like to check out:

RUOK Day: Full Disclosure

Mind Your Language Katy Perry

Don’t Call Conspiracy Theorists Crazy