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.
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