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

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

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”

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”

Psychiatric Medication And Stigma

medication stigma foto unsplash
Photo by Wei Ding on Unsplash

Do you believe stigma around taking medication for mental illness exists?

Or put it this way:

If you had to choose, would you rather disclose that you were taking insulin or psychiatric medication (antidepressants, anxiolytics, antipsychotics, mood stabilisers etc) to your employer, your family, your friends, and a room full of strangers? And why?

Continue reading “Psychiatric Medication And Stigma”

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?”

Would You Rather See A Cardiologist Or A Psychiatrist?

brain-hack

How do you know when and whether you need a psychiatrist or a psychologist?

For many people, stigma is still an obstacle to accessing the right mental health care for them, at the right time. Experiencing psychiatric symptoms is challenging enough. We don’t need the judgement of others or self stigma standing in the way of  getting the correct treatment. So we need to change the way we think and speak about accessing mental health care. And we need to understand the different levels of care we can expect from different professionals.

I saw my psychologist and my psychiatrist a couple of weeks ago. These two professionals are the pillars of management for my Bipolar Disorder. Yet they support me in different ways.

Continue reading “Would You Rather See A Cardiologist Or A Psychiatrist?”