Overcoming cognitive biases in my life with MS
The best remedy for eliminating bias is more education
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In the past two years, I’ve started listening to a number of podcasts. That this coincides with my becoming more sedentary is purely coincidental. That my first was the Multiple Sclerosis Podcast is less so for obvious reasons, but today I listen to podcasts about more than just multiple sclerosis (MS).
I like being entertained, but that’s not the primary reason for listening. Much like my tastes in reading material, I enjoy indulging in a bit of somewhat nerdy education, my latest venture being the subject of cognitive bias. A podcast I am listening to defines cognitive bias as a flawed way of thinking that’s derived from preconceived notions that can seriously affect how we process or perceive information.
The sighting of a mythical creature in a certain area was one example given. It noted that if everyone you knew claimed to have seen such a creature, then the odds of you seeing it too would dramatically increase. It certainly made for an entertaining and educational episode, but it also made me think about cognitive bias in a much less mythical setting. I feel strongly that in the setting of a chronic disease like MS, bias in thinking and perception is not uncommon.
Absorbing all the information I can
I’ve been fortunate with respect to my medical providers over the years, and especially with the neurologists who treat my MS. Still, despite their education and specialty training, healthcare providers are as prone to cognitive bias as anyone else.
The most common bias shown by providers is to never deviate from the textbook answer or the one they heard in their first lecture on MS. The second most common one is to fall into the trap of thinking that all patients with MS are the same.
The solution to undoing or preventing cognitive bias lies in continuing education, not just in an academic setting, but also by listening to the subjective information provided by patients with chronic diseases, their families, and caregivers.
Also affected by cognitive bias regarding MS are those people who don’t have it. If I had a penny for every time I’ve heard someone say, “I know someone with MS and they …,” I wouldn’t be rich, but I’d have enough pennies to put in a sock and thump the next person who said this with it. I don’t want to bias anybody with the way MS affects me, but I do want to drive home the point that MS is not a one-size-fits-all disease.
The last group of people I will mention who experience MS cognitive bias is the group made up of, well, me. I’d like to think I know quite a bit about the disease and quite a few different people with it, but in the end, the only MS I really know is my own.
I am biased by my own symptoms and am guilty of sometimes downplaying the symptoms other people mention that I don’t experience personally. I am biased by the things I read — usually by the last thing I’ve read — and have even been close to being swayed by commercials. Perhaps, worst of all, I’ve completely blown off other medical issues because my own bias has me convinced that MS constitutes everything that could possibly go wrong with me.
It bears repeating: The key to undoing cognitive bias is education. For me, that means both absorbing all the information I can about MS and being willing to consider new information — especially information that might conflict with one of my long-held beliefs. I’ve said time and time again that I am certainly not perfect at this, but I am getting better.
Please share how you deal with this particular obstacle to rational thinking. I could definitely use the education.
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Dylan
Great article Ben.
About 10 years ago I changed Neurologists; from someone more generalised to one that is more MS focused. Both thought they knew (cognitive bias) exactly what I needed and how my life would be affected by this disease that I knew nothing / very little about.
Eventually, out of pure frustration, I wrote a letter to my “new” Neurologist and asked him to please read it before we went any further with the consultation. The letter described my struggles, my symptoms and I made some suggestions for moving forward.
After reading the letter, he looked up at me and acknowledged that he’d never had a patient like me and that I was an interesting case!
If all else fails, write it down and present that to Neurologists or your spouse or your friends.
Benjamin Hofmeister
That's some sound advice Dylan!
Somehow I was very fortunate in that the neurologist who diagnosed me told me after a visit or two that his specialty was headaches and even though he knew enough about multiple sclerosis to diagnosis it, I should really see an MS specialist. He may have just not wanted to deal with me, but I'm still grateful that he recommended it.
Scott Singer
Related issue - a form of medical bias. Attribution bias – Assuming symptoms are due to MS. Dizziness and fainting after eating large meals was attributed to so-called MS dysautonomia. It took three years before a cardiologist correctly diagnosed the condition as severely occluded carotid arteries and subsequently, congestive heart failure. Non-invasive surgeries were successful. I can only assume that attribution bias is unfortunately very common and potentially life threatening.
Benjamin Hofmeister
Thanks Scott! I had to look that one up and that's exactly why I went to the hospital a couple years ago with a severe UTI that had spread to my kidneys and was sending me into septic shock. Sure I felt bad, but I have MS so it just goes with the territory, there can't possibly be anything else wrong with me.
I wonder if we're all affected by survivorship bias too.
Jan Louis-Him
Thank you for this article and I agree with your thoughts. Not sure that I cope with my own biases that well however I have recently come to the conclusion, that I am an expert on my own version of MS but that expertise may not apply to the broader Ms population.
Thank you for your column and I'll look forward to your writings in 2026.
Benjamin Hofmeister
I feel the exact same! No one else knows and understands me like......me.
That's why I try to write most of my columns using the words I or me, so it never sounds like I'm trying to project my own feelings or symptoms on everybody else. I often say this isn't a one-size-fits-all disease, but I think at the beginning it took me a little while to realize that.
Vishal arora
Good read with lots of great insights
Benjamin Hofmeister
Thank you so much Vishal!
Paul Knox
The bias of personal experience can warp the outlook of a person with about the disease in general. But I’m not sure cognitive bias applies in assessing one’s own symptoms.
It’s not just that each of us has a unique combination of MS-caused problems. We also bring unique circumstances. We have, or had, different jobs, habits, life experiences and living situations. We have different types of families and different kinds of homes. We inhabit different communities — what we were born into and what we chose out of interest, faith or conviction.
Personal standpoints are, I believe, under-appreciated by many MS clinicians. These include a person’s appetite for risk, ability to listen to the body and interpret its signals, comfort level reading different types of literature, and willingness to find the meaning in what is at first glance inexplicable or terrifying.
That’s the canvas MS comes to paint on, bringing a different palette to each visit.
I’ll make no apology for insisting on presenting my case of MS in context. Only then will the term “personalized medicine” have any relevance to treatment.
Benjamin Hofmeister
That was pretty profound! I actually just submitted an abstract for this year's CMSC conference in May arguing that exact point. When it comes from a chronic disease patient, subjective data becomes nearly objective without undermining objectivity. I'm not a doctor of any sort, so I sort of doubt it will be accepted and published, but submitted it anyway.
I honestly try to not be biased by my own condition, but I know the potential is there. Especially after a setback like last Falls hospital stay for aspiration pneumonia. In that case, I definitely ignored the problem until it required hospitalization because of my own cognitive bias. I'm too young to have pneumonia as though age has anything to do with it. Actually I wonder how much of that is bias and how much it is simple denial? Regardless, as much as I don't like it sometimes, I rely on an outsider (my neurologist) to remain objective even if it's annoyingly so sometimes.
Paul Knox
Thanks for the reply, and good luck with your CMSC submission. Maybe they should have a Voyager (patient) track for pwMS, complete with Voyager peer reviewers.