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.