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
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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

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

Not So Body Positive

Big cat on the street in the city

I came across an Instagram image of an obese cat recently (not the image in this post). The accompanying caption referred to the cat as a ‘body positive icon’. And it made me stop and think about whether a cat can, or even should be, an icon of body positivity.

I have never felt qualified to comment on the body positivity movement. As someone who lives with thin, white, straight, (mostly) able bodied privilege, I have been reluctant to wade into the hornet’s nest of opinions the words ‘body positivity’ evoke on social media. Until I saw this.

Continue reading “Not So Body Positive”

Misunderstood Mania

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What do you know about mania?

Everyone knows depression is bad. But does this mean mania is good because it supposedly sits at the opposite end of the bipolar spectrum?

Mania is often painted as the cartoonish counterpoint to depression. Perpetually bright, happy, and fun. But it is not fun. It is the character in a horror movie who starts out friendly but then morphs into someone with sinister, glowing eyes.

Mania assaults your senses.

Continue reading “Misunderstood Mania”

Visiting Someone In A Psychiatric Hospital?

BCPND visit 2010
2010 My daughter visiting her little brother and I in the mother/baby unit of the psychiatric hospital

‘My daughter never visits me in hospital. She doesn’t like this place.’

An elderly woman told me this in a private psychiatric hospital several years ago.  Sadness dripped from her words.

The thought of visiting someone in a psychiatric hospital (especially for the first time) can leave people feeling: Awkward. Uncomfortable. Fearful. Repulsed. Guilty. Ashamed. Misinformed. Unsure. To name a few.

What do you say and do if that’s you?

Continue reading “Visiting Someone In A Psychiatric Hospital?”

My Mental Health Toolbox

PWC keynote image

This week I had the pleasure of giving a keynote address for one of the departments at PWC (Price Waterhouse Coopers). As part of this I ran through some of the things I have found helpful to help me monitor and manage my mental health.

I got some really positive feedback after the presentation and requests for the list of things that help me with my mental health. So I thought I’d share that list as a post here:

EARLY WARNING SIGNS AND INSIGHT:

In this context insight is the ability to identify early signs of mental ill health in yourself. This is much more challenging than it sounds, because signs of mental illness can masquerade as normal feelings and emotions.

For example – irritability and sadness are part of the normal spectrum of human emotions, but if they are overwhelming and persistent and interfere with normal functioning, they can also be symptoms of depression.

It can take time to identify their intensity or persistence as abnormal. The other challenge is that when we are well, we can often think our way out of sadness or irritability. But when they become symptoms that is impossible.

Someone affected by symptoms of a mental illness can no more think their way out of them than someone with a nasty case of gastro can think themselves out of their vomiting and diarrhoea.

But whereas vomiting and diarrhoea are obvious signs of illness (both to the person experiencing them and everyone around them) it takes insight to recognise when symptoms of mental illness emerge.

For me early warning signs can be an inability to sleep even with a lot of medication, intense irritability, and poor short-term memory and concentration.

Early warning signs are different for everyone. By learning what ours are we can be proactive about seeking help rather than waiting for symptoms to worsen.

For further reading on an example of insight into a depressive episode you can go to: Razor Blades In Mud: Laziness Or Depression?

Continue reading “My Mental Health Toolbox”

Who Holds You When You’re Broken?

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I’ve been told the first time we met I was shuffling slowly up and down a blue carpeted corridor. Slumped body. Empty eyes. I barely registered being asked how I was with a slowly exhaled

‘Not so good.’ before moving on with my pram.

I say ‘I’ve been told’, because I don’t remember our first meeting or the following weeks. I was sicker than I’d ever been. Not many people would have repeatedly made friendly conversation with someone as unresponsive as I was.

She did. At a time when she wasn’t well herself.

When I finally re-emerged after several months of illness, I was delighted to find I had a new friend. A friend I never would have met in my geographical or professional circles. A friend who, like me, had spent the early months of first-time motherhood in a psychiatric hospital instead of at home.

Continue reading “Who Holds You When You’re Broken?”

Silent Night Instead Of Chaotic Christmas

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Childhood Christmas memories (early 1980s)

It seems Christmas tends to wound us. Just judging by all the calls to look after ourselves at this time of year. Every day brings a fresh wave of breezy yet cautionary social media posts urging us to practice ‘self-care’ more now than ever. And apparently, grief and illness don’t take a break for this most wonderful time of the year. Who knew?

It is true that the expectation to be happy because it’s Christmas (both unspoken and sung loudly) adds unnecessary pressure to already busy lives. It is not in today’s Christmas’s nature to nurture.

For a holiday supposedly espousing kindness, joy and happiness, it doesn’t heal the hurts the year might have inflicted on us. If anything, it deepens our wounds because it insists we turn ourselves inside out to please the world, rather than recovering from the demands of the year. Perhaps, if we approached Christmas less as something that will inevitably leave us feeling worn out and stressed, we wouldn’t need to heed social media advice to ‘look after ourselves over the festive season’.

What if Christmas were all about replenishing ourselves as opposed to needing self-care as damage control?

Continue reading “Silent Night Instead Of Chaotic Christmas”

2018 – The Year I:

Thought about homelessness, after I witnessed displaced people with cardboard placards to explain their belongings smudging the busy and important streets of Sydney in the first days of the new year. My emotional barometer flicked between pity, sadness, relief, and settled on horror because this could still be me one day. The Right To A Home

Went to work. After twenty years the neural pathways for running a consultation competently and compassionately, for reading who I am in a room with, and being a shock absorber for their anxieties and concerns, are so well-worn they are almost automatic. Contrary to popular belief (and this photo), we spend much less time playing with puppies and kittens, than we do using our communication skills to explain, empathise, and advise our way to the best outcome for our patients via their owners.20170619_130857

Felt it come for me. In February, over two days. My sanity stepped into quicksand. Mania swallowed me. I called into work sick. I said goodbye to my family. I went into hospital. Battened down my hatches and prepared for the usual long stay. Only to be pleasantly surprised. Four weeks in hospital. That’s short for me.

Lost my job. I do every time I get sick.

Opened new neural pathways by setting up a website, which enabled me to write and publish this blog. My technological ineptitude is boundless, so the existence of Thought Food is a minor miracle.

Supported three men. All stepping through the sticky tar of depression at some point this year. All blindsided by the ferocious nature of this beast. All strong, kind, intelligent, undeserving.

Exercised most days. Ate green vegetable omelets for breakfast some days and Nutella on toast with mug loads of coffee on others. #NotFitspo

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Welcomed Clarence, our baby Stimsons python into the family. He is the lowest maintenance pet I have encountered. Gentle, inquisitive, and only needs to be fed every seven to ten days.

Continued to receive rejection after rejection of the manuscript for my memoir from publishers via one of the best literary agents in the country. Each one stings. Each one frustrates. According to publishers’ feedback the quality of the writing is great, but it’s not commercial enough. In other words: No one wants to read about psychosis if you haven’t killed someone in the throes of it or at the very least been picked up wandering the streets nude and ranting.

Began considering self-publishing the manuscript for my memoir.

Climbed back into some weekend work.

Heard my mother’s voice tell me my father had nearly died after a massive heart attack. Seeing him on day two after triple bypass surgery, comatose, tubes and wires snaking in and out of him, and the comforting blips and beeps and numbers flashing on familiar screens was easier than seeing him on day four, awake, in agony with each movement. He survived. My Father’s Heart Broke

Applied for, was accepted into, and completed the SANE Peer Ambassador training program. The glow of being in a room with others who went through hell, survived, and are now well enough to use that experience for good, still warms me. And I finally feel I’m not advocating on my own anymore. The Chosen Ones

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Gathered friends for dinners and lunches to enable my love of cooking, baking, great food and wine, and conversation…so much conversation.

 

 

 

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Became familiar with the inside of an ambulance courtesy of seven night time trips to hospital in ten days. My son developed partial seizures lasting up to ninety minutes each. Relief flooded me when his MRI scan was clear (of brain tumours) and he was diagnosed with benign rolandic epilepsy (infinitely more manageable). Lessons For A Control Freak

Clung to small wins amongst the manuscript rejections. Three posts published on Mamamia, one on SANE, and a submission for Dr Mark Cross’s book on anxiety accepted.

https://www.mamamia.com.au/mental-illness-language/

https://www.mamamia.com.au/symptoms-of-postnatal-psychosis/

https://www.mamamia.com.au/signs-of-depression/

Narrowly avoided a second hospital admission in October. I pounced on the onset of a depressive episode with an emergency psychiatrist appointment, a medication adjustment and slashed away all commitments except exercise for several weeks. Razor Blades In Mud: Laziness Or Depression?

Became a spokes person for the Australian Genetics of Bipolar Disorder Study, and suggested edits to make the language in the main study survey more consistent and less stigmatising. Most of my edits were approved and included less than twenty-four hours before the study launched. A clip of some of my participation and how to participate in the study can be found here:

https://www.geneticsofbipolar.org.au/hear-from-study-participants-alex-anita/

Attended my first ever non-veterinary conference: ‘Empowering online advocates’ and came away feeling much more hopeful than the trip to Sydney in January had left me. #HealtheVoicesAU

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Discovered the joy of camping, absolutely enabled and enhanced by beautiful friends who supplied (and set up) most of the gear.

Resigned from veterinary work. Ostensibly to stop straddling several worlds and free up more time and energy for writing, mental health advocacy, and my children. That is all true. But I am also bone crushingly tired of the cycle. Work, get sick, lose employment because the nature of my illness means I can’t give a date when I’ll be well enough to return, and I can be sick for months. Then I clamber my way back into a demanding profession you can only inhabit when you are functioning at 100% of your capability. I expend time, energy, and money to do enough CPD (continuing professional development) to keep my registration up to date…only to lose it all again the next time I get sick. The plan is two years off. Then see where I’m at.

Received a handwritten Christmas card and instant scratchie from my pharmacist… one of my six medications alone costs $30/week. Treatment

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Reminded you to end the year saying no when your gut tells you to, and being kind to yourself when you feel like doing the opposite.

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Is YouTube Rotting Our Brains?

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I hear voices.

Shouting. Shrill. Pressured. I am in my kitchen, unable to make out words. Just a stream of urgent noise. Where is it coming from? The TV in the spare room? Surely not. TV conversations dip and rise. Even cartoon voices change in cadence and timbre. The noise coming from the spare room is barely human. This could be how I’d sound if I were to record myself when manic. As irritating as a whinging toddler, as grating as fingernails down a chalk board.

So, who is trapped in my spare room generating this awful sound?

Continue reading “Is YouTube Rotting Our Brains?”