Navigating MUS
It’s not unlikely that you or someone you know suffers from chronic and medically unexplained signs or symptoms. Before I talk about what a medically unexplained sign or symptom even means (and more importantly, what it means for you), let’s identify the difference between a sign and a symptom.
A sign vs. a symptom
Your signs and symptoms may be related to an existing diagnosis or unknown factors. While a sign can be measured in a health or medical examination (even if you are unconscious or cannot communicate), a symptom is noted only by you, the patient. For your healthcare team, a sign is objective. A symptom is subjective. But both signs and symptoms are out of your norm and relevant to your potential condition, treatment and resolution. Since only you know your symptoms, they must be communicated verbally or through your movements or actions. Otherwise, they risk going undocumented in your medical records.
Check out some of the distinctions between signs and symptoms in this chart:
I appreciate that these distinctions can be confusing. But knowing the difference between signs and symptoms helps you to better advocate for yourself when receiving care. “I have a fever, a runny nose, and these skin outbreaks on my chest” (listing your signs). “And I’m also experiencing congestion and unusual fatigue” (noting your symptoms).
Separating these experiences allows your medical provider to quickly categorize and direct their attention to documentation, further inquiry, and care. It also helps build the bridge between your language and theirs. This is part of how a therapeutic partnership is formed.
Medically unexplained signs and symptoms
In 2017, a paper entitled “Medically Unexplained” demonstrated that physiological pain or dysfunction doesn’t always correspond to a disease or diagnosis (read more in my previous post about the allure of the diagnosis). The presentation of persistent problems can be labeled with the umbrella term “MUS” (medically unexplained symptoms) or “MUPS” (medically unexplained physical symptoms). The mismatch between a series of signs and symptoms and a plausible pronouncement based on our current diagnostic criteria has left too many of us without a name for our hardship.
A 2021 paper on MUS recognized that these “symptoms are common, real and are associated with significant distress, loss of functioning and high healthcare costs.”
As time marches on, the many who hurt or can’t function (or operate at 75% or less), have become many more.
You may recognize yourself standing under that umbrella, thinking you’re alone in the storm. Or you may realize that you’ve dismissed someone in your circle as a complainer or hypochondriac. Or maybe, if you’re a clinician like me, you’ve found yourself trying to save the day and be the hero who will “fix” it all.
If that’s you, seeking answers for yourself and reading this now, I see you. You are not alone. You can’t get out of bed or want to climb back under the covers after the kids leave for school. Your weight won’t regulate like it used to with what (in retrospect) was just a little bit of effort. That pain in your breast or the ache in your hip or the itch in your ear just won’t stop. And the symptoms, some just niggling and others more pronounced, are compounding. You live on a revolving spectrum between annoyance and acceptance, hope and humility. Sometimes you don’t even know which symptoms are worth bringing up when you see your health or medical provider.
What I’ve seen in my 10+ years of practice is that folks with these chronic symptoms are left on an exhaustive and endless quest. And these aren’t people with rare disorders that deserve a sub-plot on House-MD or a chapter in a textbook of medical anomalies. They’re your sister, best friend, aunt, me, and perhaps you.
Unfortunately, as advanced as our medical assessments have become, we just don’t have the appropriate diagnostic criteria for a new wave of conditions resulting from myriad insults—lifestyle, environment, and even evolution. But we do have some tools to help us captain this new terrain.
"Some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity." — Gilda Radner
Tracking is action
So what do we do in those circumstances where even our best diagnostic criteria fail to reveal answers? When the diagnosis is still elusive or when it just isn’t enough? How do we get out of feeling stuck on either side of the diagnosis divide (before or after)? And even when testing has led to this or that conclusion, then what?
The answer to that question is, unfortunately, not always clear.
This is where TRACKING comes in. In fact, I wish it came in earlier. And always.
Please don’t roll your eyes. What I’m about to share with you is cheap and easy, yet effective.
I’m a fan of all sorts of tracking—sleep tracking, symptom tracking, poop tracking, and even food tracking (when your safety and situation allows). I like tracking at different times, for different reasons. It can help us embrace the pause, step out of the weeds, and collect the data that helps us to see our next move more clearly.
Call me crazy, but I like to think of the tracking process as “strategic.” It’s our personal way of engaging in the scientific method.
Shane Parrish, one of my favorite thinkers on both the art of decision making and the power of mental models (two of my top subjects to explore), says: “The time used to correct poor thinking comes from the time that could be used for good thinking. Good thinkers understand a simple truth: you can’t make good decisions without good thinking and good thinking requires time. Good thinking is expensive but poor thinking costs a fortune.”
↑ Read that quote one more time. Let it sink in.
A test result is one piece of data. That’s it.
How large or small a piece depends on the test, the situation, the data itself. The rest of the data comes from you. You actually already have it. It’s your signs. Your symptoms. When they occur. When they feel most challenging. And tracking them doesn’t cost a penny.
But not tracking that data may cost you a fortune.
In my next post I’ll share my new Sign & Symptom Survey for you to complete for yourself. Together we’ll explore what to do with the data you collect.
If you’re struggling with a chronic illness, I’m now accepting applications for small Case Study Groups for my upcoming book. You can learn more and apply here.
It's very important to us to know those things, which can help us understand the signs and the symptoms, but the most important is how to prevent. Thank you for sharing your thoughts and knowledge.