Why Some Doctors Dismiss Your Symptoms and What You Can Do About It
A significant number of patients that go through the MS diagnostic process experience a disturbing pattern of misdiagnoses and dismissiveness from physicians. If you were one of them, as I was, the following three scenarios might be familiar to you.
Dismissing pain and making accusations
You describe pain and one or two other symptoms to a new doctor. S/he appears to be listening intently. When you take a breath before your next sentence, the doctor interrupts and accuses you of displaying classic drug-seeking behavior and says you’ll not get a script for narcotics in that clinic. You walk away stunned and indignant. Narcotics couldn’t have been further from your mind.
Dismissing new symptoms
Referred to a neurologist by your primary care doc, you undergo a neurologic exam and oral history, reciting the symptoms of numbness, fatigue, foot drop and weakness you’ve written on a notepad so you wouldn’t forget anything. The doctor grabs a rubber mallet and taps various joints. You notice that a left knee tap produces a brisk reflex. “That’s a bit brisk,” the doctor acknowledges. “But I’ve never seen you before so I don’t know if this is normal for you.” Then with an impressive display of noncommittal claptrap, he pronounces judgment on you that it’s just stress — but you should probably get an MRI sometime —but it’s really nothing. Back to the drawing board, you mumble to yourself.
Referred to a rheumatologist by your primary care doc, you describe various symptoms including pain in many areas on both sides of your body, numbness, and migraines. The rheumatologist diagnoses you with fibromyalgia and puts you on Lyrica. Years later, after experiencing attacks of worsening symptoms followed by remissions, permanent vision and mobility loss, you are referred to a neurologist for MRIs. After discovering numerous lesions and an abnormal lumbar puncture, you are diagnosed with relapsing-remitting multiple sclerosis and put on a disease-modifying therapy.
Why is diagnosing MS so difficult?
Who knew diagnosing chronic illness was so complicated? Doctors have always been on the front lines of that epiphany, with patients like you and I taking up the rear. Here are some excuses doctors have given for their lack.
Too much focus on acute care
In an article written by physician Daniela Drake, the author points out that conventional medicine is designed for acute care and fails miserably at spotting chronic conditions. Clinical settings are designed much like car factory assembly lines. Think of a busy ER where patients are triaged according to the type and severity of their injuries. Suturing, splinting and bandaging are easy fixes.
When patients have perplexing symptoms
In a busy private practice setting, doctors rely on heuristics to make rapid judgments with each patient. But chronically ill patients don’t fit the heuristics and instead present with a “wild constellation” of symptoms. The most expedient solution? Send this perplexing pile of meat and bones back to the street from whence it came.
Reasons for their unreasonable behavior
In a tongue-in-cheek article by Dr. Val Jones titled In Defense of Doctors: Why We Act Like Jerks, and How to Handle Us When We Do, she explains four main reasons why doctors are jerks:
- We are afraid.
- We are hen-pecked.
- We are exhausted.
- We were probably jerks to begin with.
The fear part, Dr. Jones surmises, comes from a silly belief doctors have that they can “cheat death” with the many tools and techniques they have accumulated to save every single patient they treat. When the inevitable failure comes, they beat themselves up, risk condemnation by their peers—or worse, the most arrogant ones take it out on an unsuspecting patient.
Hen-pecking is another term for multi-tasking trivial but necessary things while trying to have a serious discussion with a patient. Someone with medication scripts to sign might walk in and interrupt, or another doctor might wander in for an ad hoc consult. The constant interruptions can change a nice doctor into a jerk—or a jerk doctor into an even bigger jerk.
Exhaustion refers mostly to sleep deprivation among surgeons and ER doctors. Lack of sleep makes anybody “irritable, moody, short-tempered, hostile—and extreme jerks.”
Type A personalities
In a sincere paragraph of jerk-splaining, Dr. Jones points out that “...getting into medical school is extremely competitive. Candidates are ranked by test scores rather than compassion and charming personality scores. So the most successful ones are usually fiercely competitive type A personalities. If they weren’t fully-formed jerks before graduation, they become fully-formed after sleep deprivation, hen-pecking, and fear of failure.”
How to ally with your doctor
So how do you deal with a jerk so they won't act so jerky? Dr. Val Jones provides this list—
- Be prepared for your visit. Bring a recent meds list, write down questions and symptoms.
- Be understanding of our lateness. An ill-prepared patient before you might have made us late.
- Be a “compliant” patient. Stick to the treatment plan we worked out for you.
- Find another doctor if you need to. If your doc is impossible to work with, do find another.
Hm, these are things MS patients already know! Oh, and Dr. Jones wants to point out one more thing:
“...being a jerk isn’t always a bad thing, because if your loved one needs a medical champion, then a fire-breathing monster is probably an excellent advocate!”
Food for thought.
How often do you use assistive devices to help manage your MS?