In a healthcare setting, curiosity is a blessing, not a curse
I ask questions because my experience as a patient is important for assessments
My three children inherited my inquisitive nature, which I hope they’ll never lose. The first word they learned as toddlers was probably “no,” but that was quickly followed by “why.” As they’ve grown and their vocabularies have expanded, that word, in turn, has been followed by increasingly complex and detailed questions. I answer what I can and try to encourage them to find all the answers I can’t provide — usually by saying, “Go ask your mother.”
Like a lot of parents, I know I’ve been guilty of sometimes saying, “Because I said so.” It almost physically hurts me when I do that, because I didn’t want anyone to say that to me.
My children have a limited amount of life experience. Their brains are rapidly developing, and asking questions is their way of figuring out their world. If I discourage their questions, I’m preventing them from learning. And I don’t ever want to do that.
I’m not an actual child, but I’m only 11 in multiple sclerosis (MS) years, and my brain is developing, too. It’s mostly happening in ways I don’t want, but it’s also being filled with information about MS. Asking questions and learning everything I can about this disease is the only way of figuring out my world. Like a child, my quest for knowledge about MS can be discouraged by a medical authority figure who responds, “Because I say so.”
To be fair, I don’t think any medical provider has ever used those exact words, but something similar can be just as discouraging. For example, being told that something is in my best interest rubs me the wrong way, too. Some providers don’t like being asked “why” or “how come,” because it might sound like I’m questioning their judgment. I am, but I don’t mean any offense. I’ll follow you anywhere if you’ll just explain to me why your way makes the most sense.
Trust goes both ways. It may take more than one visit for a provider to take me at my word, but it might also take more than one to convince me of their expertise. I’ve written before about the difference between subjective and objective information in a medical note. It’s important to separate what I tell the doctor and what they determine themselves, but all too often, subjective information is viewed as unreliable emotions or opinions.
Especially with a lifelong disease like MS, I think a patient’s lived experience is absolutely vital to creating a complete picture of their condition and the formation of their care plan. Providers usually rely on the Expanded Disability Status Scale (EDSS), which is a good system and provides a number to measure a patient’s disease progression. But it doesn’t mean much from the patient’s perspective. That’s why I believe my daily experience, coupled with answers to all my “whys,” is so important to me and should be a part of my assessment.
I know that I’m at risk of being biased by my own subjective information. On the flip side, my provider is at risk of being biased by an EDSS number. It feels a bit like a police drama on television where they tell someone they can’t investigate the case because they’re too close personally. As a patient with multiple sclerosis, I don’t see how it could be any other way.
A neurologist, especially one that specializes in MS, is the expert, but I’m the expert on me, and I’m going to ask lots of questions. I’m blessed to have a neurologist who’s willing to meet me halfway and answer all my questions. I hope you are, too.
The idiom “curiosity killed the cat” has a second part that not everyone knows. The entire phrase is “Curiosity killed the cat, but satisfaction brought it back.” When we include that part, the adage changes from a warning about curiosity to encouragement to seek answers regarding what you’re curious about. I never set out to have these questions, but I’m curious about multiple sclerosis, and having my “whys” and “what-ifs” answered is immensely satisfying.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Bonnie Porcelli
Keep asking why?
Ian R
The killer with MS is that there are lots of questions, but no answers.
What’s my prognosis?
How long have I got left?
Why did I get PPMS not RRMS?
What causes MS?
“A neurologist, especially one that specializes in MS, is the expert”
I’d argue the opposite - I don’t think a neurology is much of an expert. Did you know that up to 20% of MS diagnoses are wrong!
A neurologist prides themselves at diagnosing, but what patients want are doctors who can get them better / stop them getting worse. Has your neurologist had any impact on the way your disease has progressed? Has the expensive drugs they prescribe made any difference? I think we are all too polite. We judge our neuros on whether they are friendly / chatty / answer our questions…. Surely the only relevant judgement is whether they improved our health! Neuros are on a good salary, yet your neurologist prides has watched you decline over the last ten years and has made little difference. Compare this to oncologists or heart surgeons. When my elderly father had a heart op the surgeon told him he should be good for another 5-10 years. My father shook his hand and thanked him. I certainly won’t be doing this with my neuro. It’s bad enough getting some of the worst disease known to man (MS, Parkinson’s, ALS), but what really grates is the doctors covering these diseases are as useful as a chocolate teapot. Rant over.
Mary Gerdt
Dear Benjamin Hofmeister,
I just X’d Looking for Curious MS Specialists and all my other Doctor Specialists at my major academic medical center.
Looking for Doctors Curious-er about Gadolinium Deposition Disease. Any takers?
donald kushner
Your piece really struck a chord with me.
I’ve learned that in the exam room there are always two experts — one with the medical degree, and one who knows me.
Back when I was a primary care physician — before going on disability with my MS — a patient came in for elbow pain, then casually mentioned chest pain. He stayed focused on his elbow; I was focused on his heart. By the end, he muttered, “That doctor barely addressed my elbow,” and I muttered, “He barely noticed I just saved his life.”
It’s the same with my neurologist now. There are still two experts: one on MS, the other on me. MS may be “all in the head,” but the most important thing going on up there isn’t what shows on the MRI — it’s the thoughts, feelings, and quirks that make me who I am.
The best visits? When the doctor is just as curious about me as I am about my MS. Bonus points if nobody mentions elbows.
So I’m curious — what’s a “why” question you wish your doctor would ask you?
Donald kushner
In the exam room, there are always two experts — and only one has the medical degree.
When I was a primary care physician — before going on disability with my MS — a patient came in for elbow pain, then mentioned chest pain. He stayed focused on his elbow; I was focused on his heart.
The best visits? When my neurologist asks as many “why” questions about me as I ask about my MS. Bonus points if nobody mentions elbows.
What’s a “why” you wish your doctor would ask you?
Benjamin Hofmeister
I'm so fortunate that my neurologist is an MS specialist and a professor of Neurology at the local medical school, so he's used to getting a lot of why questions. In my very small role in emergency medicine and patient care, I was always told to ask someone why they felt a certain way about a symptom, or
medication Etc.
I feel like I'm nauseous all the time.
What do you mean, or why do you say, I feel nauseous all the time?
It was never meant to be belittling or insulting, just as a way to have them clarify. And now those are the sort of why questions that I like try to remember to ask my doctor.
I think you should try..
Why, or what do you mean when you say I should try?