Epilepsy & Mental Health — The Dunning-Kruger Effect

How educated are you on epilepsy & mental health?

Have you ever met someone who thought that they were an absolute expert in their field, like a total whiz, but who you found to be relatively uneducated* on the topic in question?

Whether it be a politician, a family member, a colleague, some random from Twitter, or ourselves — everyone has this “effect” to a degree. We all likely lack intellectual humility somewhere.

I’m talking about The Dunning-Kruger effect; a cognitive bias hypothesis described by social psychologists David Dunning and Justin Kruger.

I really like this summary by David Dunning himself:

“This meta-ignorance (or ignorance of ignorance) arises because lack of expertise and knowledge often hides in the realm of the “unknown unknowns” or is disguised by erroneous beliefs and background knowledge that only appear to be sufficient to conclude a right answer. As empirical evidence of meta-ignorance, I describe the Dunning–Kruger effect, in which poor performers in many social and intellectual domains seem largely unaware of just how deficient their expertise is. Their deficits leave them with a double burden — not only does their incomplete and misguided knowledge lead them to make mistakes but those exact same deficits also prevent them from recognizing when they are making mistakes and other people choosing more wisely.” — David Dunning

Training Peaks

My own anecdotal experiences

I personally come across many people who overestimate their knowledge regarding epilepsy and mental health. In my own experience (which is, of course, anecdotal) here are some people who have screamed out the Dunning-Kruger effect to me:

• They’ve seen someone have a tonic-clonic seizure and so now think that they know what epilepsy is all about;
• They’ve watched a TV documentary about psychosis, schizophrenia, or borderline personality disorder, and believe that people with those diagnosis’ are not just dangerous but shall dash out after dinner to kill a few people;
• They have the diagnosis of epilepsy or a mental health condition and therefore think they know everything (I’m not kidding);
• They are a carer to one of the aforementioned and therefore think they know everything (I’m still not kidding);
• They are fresh out of university having studied a related topic (but have had no personal or professional experience in the spheres of diagnoses, treatment and care);
• They are very experienced medical professionals in a related field who aren’t up to date with/don’t care about the latest research, and;
• Then there’s myself …see below!

One of my personal experiences of the Dunning-Kruger effect

Until a few years ago, prior to my fun time of brain surgery and psychiatric hospital admission, I really didn’t know much at all when it came to epilepsy and mental health. I understood a bit about my own conditions from my own point of view (although never went around “teaching” people or proclaiming my “knowledge”). The thing is that until then, I didn’t know how little I knew. Yes. I had been experiencing the Dunning-Kruger effect. My ignorance hit me in the face and so I started reading**. A lot.

The more we learn, the more we realise we don’t know.

The Dunning-Kruger effect affects those of all backgrounds

People tend to be “experts of their own experiences” — but often see things from their point of view only. Many people with epilepsy I have met truly believe themselves to be experts in the medical field; to the degree that they post silly, fictitious, and at times, quite frankly dangerous things on social media, and get angry with medical professionals for not “curing” them.

I had a neurologist a long time ago who was horridly arrogant and blasé with me. Upon reflection, she really lacked knowledge when it came to epilepsy and overall patient care. She was very presumptuous and made ridiculous generalisations regarding those affected by epilepsy. No regard was considered for patient mental health stability. She implied that all of my seizures were my fault. Maybe she just wasn’t a nice person. Maybe she had the Dunning-Kruger effect.

To challenge our own perceptions and identify and acknowledge our own biases and potential misconceptions, takes guts, modesty, and self-awareness.

Relating it all to a hallucination

This all actually reminds me of a time years ago, that I was hallucinating (this wasn’t the Dunning-Kruger effect, but a mental illness). I kid you not, but I totally believed that these people and things that I could see, hear, smell and feel, were real. After a few days, my friend said “Dude. What you’re describing doesn’t exist”. I frowned, turned my head to look back to where I’d seen a strange preacher in a green cloak (just like a character from Robin Hood Prince of Thieves, if you’re interested) — and he had disappeared. I blushed and muttered, “OMG….uh…ok….”. It had been an illusion. Anyway…

I’d thought of myself as an expert at what I’d seen — but it was an illusion.

Why doctors, scientists, and researchers specialise

There’s a reason that you’ll find many, many different types of doctors, scientists, and researchers. They cannot become experts in so complex an arena, without specialising. Some examples:

• Neurology: A neurologist specialises in diseases of the central and peripheral nervous systems. An epileptologist is a neurologist who’s chosen to further specialise in epilepsy.
• Psychiatry: A psychiatrist provides assessments and prescriptions. A psychotherapist provides talking therapies.
• Nursing: An A&E nurse provides nursing care in an A&E department. An epilepsy nurse has chosen to care for those with epilepsy.
• Genetics: A geneticist could specialise in research and development, or in gene therapy, or pharmagenomics, for example.

It’s great to say when you don’t know

I continue to be astounded with people’s extensive knowledge, their intellect, but also their modesty. To paraphrase a quote from a neuroscientist I know: “I’m an expert in the cerebellum — but that’s it. And there’s so much more about it that I don’t yet understand.”

I’ll chat with doctors, scientists, and nurses about something I’ve recently learnt about the human brain, quoting my source. I’ll see their eyes light up, and they’ll tell me that they haven’t yet read the paper in question and so had had no idea. Or, they’ll tell me about a conflicting study/paper and give me something else to read!

I was chatting to a lovely neurophysiologist who was talking about his work analysing EEGs and different types of seizures, and I brought up gelastic (people appear to laugh but things ain’t funny) epileptic seizures in both patients with and without hypothalamic hamartomas (a rare type of brain tumour, often causing gelastic seizures). He had been in his profession for a couple of decades but he hadn’t ever heard of either the type of seizure nor the rare tumour and epilepsy. Not because he wasn’t continuously learning, but because his specialisation was elsewhere. He was shocked but excited to hear about them.

Now it happens. We all know people who will refuse to accept evidence that contradicts their pre-existing belief or thoughts, no matter what. Even if it comes to health. You know the ones. I walk away. Or in these times, I click away.

Challenging stigma — and the Dunning-Kruger effect

It’s ok not to know something about epilepsy or mental health if we acknowledge that we don’t know it. We must be intellectually humble. Let’s check our assumptions. Let’s take time to learn and embrace education, continuously. We don’t all have to go to university. We don’t all have to have a diagnosis. We don’t all have to have an IQ of 164 or even have a great memory. We can all learn, in our own time, and be excited about what we don’t yet know.

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Torie Robinson

*I was going to say “ignorant” but I know that this means different things to different people

**I’m talking about credible sources, such as published papers. Then I question those too.

I’d like to thank (in no particular order): Charles Steward, Dana Simmons, Jim Morrow, Angel Aled-Serrano, Lucien Kilonda, Sándor Beniczky, Julie Nys, Jim Siegler, Christos Lisgaras, Helen Scharfman, Stuart Smith, John Terry, Phil Tittensor, Jessica Keenan Smith, Alfredo Gonzalez-Sulser, Colin Doherty, Andy Bagshaw, David Pakman, Helen Oxenbridge, Leanne Richardson, David Rose, Simon Keller, Gabriele Lignani, Gareth Morris, Andy Bagshaw, Joannah Adams, Ryan McGrath, Brenda Okawa, Arjune Sen, Rohit Shankar, and Rhys Thomas; who all inspired me when writing this blog.