Recently, I woke up feeling off.
By “off,” I mean hands shaking, heart pounding, headache, and nausea.
Little tasks, like taking out the garbage, left me eager to crawl back into bed.
After 2 days like this, my family suggested I go see a doctor. After all the usual tests, plus a COVID-19 swab, everything came back normal.
“I think it’s anxiety,” my doctor said gently, recommending that I follow up with a psychiatrist.
He offered me a prescription for anti-anxiety medication, which I declined.
“The anxiety is understandable, given how close you were to that building that collapsed,” he added.
A few days earlier, a beachfront condo in Miami had fallen right around the corner from my apartment, trapping 97 residents under the rubble.
My street had become a busy one, with search and rescue teams, special equipment, and aid for first responders coming in and out all day long.
Like everyone in my neighborhood, I was rocked.
Anxiety must be it, I mused.
I went to sleep that night feeling grateful for the explanation, albeit a bit embarrassed.
I wish I could say my symptoms went away, but they became more intense.
Plus, there was a new one: brain fog.
Could this really just be anxiety? Now I wasn’t so sure.
I started digging into the lab work I got from my doctor’s visit, Googling line by line what everything meant. Three things popped out at me:
- elevated white blood cell count
- high blood pressure
- excess glucose
These are all markers for stress, but they can also point to something else, like an infection.
I followed my gut instinct
Curious about a second opinion, I took my lab work and drove to urgent care.
Even if it was anxiety, I needed to be sure. I just didn’t feel like myself.
With the other doctor, I opened up about my medical history.
We discussed random details that didn’t seem to be related. For example, I’d had a recent bout of sinusitis on the same side of my face as a poorly done root canal.
“Come to think of it, look at this,” I said. I showed her a selfie from a week prior, where you could clearly see swelling across my left cheek. I’d assumed it was my sinuses.
Bingo.
“That’s what I’m concerned about,” she said. “I’m putting the pieces together. I think you have an infection. Otherwise, I have no way to account for your white blood cell count.”
To my surprise, within 48 hours of antibiotics in my system, I felt like “me” again. It wasn’t anxiety after all.
This wasn’t the first time a doctor had been wrong
Apart from this incident, there was that time I was given a prescription for penicillin, even though it said on my paperwork that I was allergic.
Thankfully, I didn’t take it.
There was also that mix-up when a doctor thought my swollen foot was gout when it was actually a life threatening blood infection from a tiny shard of glass that I’d stepped on a week prior.
I was hospitalized for 3 days.
Through my past experiences, I’ve learned about the importance of getting a second opinion.
It’s difficult to pin down exactly how often diagnostic errors take place.
Older research from 2002 places it in the ballpark of 1 in 20 people, or roughly 12 million Americans each year.
The most common misdiagnoses are called the “Big Three.” They include:
- major vascular events, like stroke or heart attack
- infection
- cancer
- establish a differential diagnosis
- order diagnostic tests
- address abnormal findings
- consider available clinical information
Medical errors are the
third leading cause of death in America.
There are several reasons a misdiagnosis can occur. These include:
Time crunch
Doctors are extremely busy, says Laura Horton, a clinical specialist sonographer in Canterbury, New Zealand.
“They often have a strict time limit on how long they spend with patients in a community clinic. This can be anywhere from 7 to 15 minutes,” she says.
“In a hospital or ER situation, the pace can be frantic,” Horton adds. “Doctors work long hours and are fatigued. There are doctors with varying levels of experience, often left on their own in a busy [emergency] department.”
High volume of patients
The sheer number of patients doctor offices see per day is exhausting, says Dr. Jason Won, a doctor of physical therapy and orthopedic specialist in San Francisco, California.
“Doctors not only have to assess and diagnose 20-plus different patients with different ailments per day, but also have the mental energy to comfort each patient, explain their conditions thoroughly, and complete documentation for each patient too,” he says.
Doctors aren’t gods
Sometimes we forget, but doctors are humans — just like the rest of us. They make mistakes, have bad days, or work off the limited knowledge we provide them.
“It’s important to remember that most human errors in medicine are made by busy people who don’t set out to be negligent,” says Horton. “They are human, and no system is perfect.”
There are several ways to become your own health advocate, so that you can get the support you need.
Before your appointment
As you prepare for your visit, be sure to have important information handy.
Make a list
Jot down a quick list of questions and concerns to help you stay on track. Make a note of:
- when symptoms started
- what makes them better or worse
- the severity
“If you have multiple problems to discuss, begin with the one you consider to be the most important,” says Dr. David Beatty, a general practitioner in London, UK.
This helps your doctor prioritize.
“If you bring up the important item late in the consultation, there will be less time to address it. The doctor may not give it due attention, or you may have to rebook,” he says.
Remember your medications
Make a list of the names and dosages for:
- prescription medications
- over the counter medications
- herbs and supplements you use regularly
You can also bring in a bag of your medications and show it to the doctor if you wish.
During an appointment
Here’s how to make the most of your limited time.
Be honest
The more clear a picture your doctor has, the better your chance of a correct diagnosis. Don’t forget to disclose topics that may be uncomfortable, including:
- sexual activity
- drug or alcohol use
- mental health considerations
- abuse or dysfunction at home
“Always be forthright about sensitive subjects with your doctor,” says Won.
No matter what you share, your health privacy is legally protected.
“We have strict confidentiality agreements that are adhered to stringently. Besides, there is very little you can surprise a health professional with! We’ve seen it all before,” he says.
Show pictures
Before and after photos can clearly illustrate how your symptoms are progressing. You can show pictures of:
- bruising
- rashes
- skin growths
- swelling
- weight gain or loss
Don’t forget small changes
You may overlook subtle changes in your health, or symptoms that don’t seem significant enough to mention to your doctor, says Dr. Peter Purrington, chief medical officer at Heritage Health in Coeur d’Alene, Idaho.
“Those subtle signs could be key to making the correct diagnosis earlier in what can be a condition that doesn’t fully manifest until it’s in later stages,” he says.
After an appointment
After you get home from an appointment, the work continues.
Dig into the data
When your doctor hands you that big stack of paperwork at the end of your appointment, don’t just toss it into your “to file” pile.
Instead, be proactive.
Look up what things mean and write them down in the margins. If you’re confused about your data, or you find something that troubles you, don’t be afraid to call or email your physician for a follow-up.
“The most important tip is to ask questions,” says Horton.
Health advocacy isn’t passive.
“Be engaged and responsible for your health journey. Don’t just expect everybody else to solve it for you. You can really help with initial diagnostic information, adhering to treatment regimes, and reporting back to the doctor,” she says.
Get into your body
There’s intelligence quotient (IQ), emotional intelligence quotient (EQ)… but what about SQ?
We’ll call this somatic intelligence, or knowing your own body. There are many ways you can become more connected to your physical self. These include:
If you have a menstrual cycle, observe how your body feels at different times of the month. Track your menstrual cycle and notice how your symptoms ebb and flow.
Build a team
Along with your primary care physician, consider other specialists like:
- internal medicine specialists
- mental health professionals
- naturopathic or osteopathic doctors
- complementary and alternative medicine (CAM) practitioners
If it’s realistic for you, having a team of practitioners from different fields and areas of expertise is the best way to support your overall health and well-being. The more people who “get” you and your history, the better.
Be consistent
When life gets in the way, try to make sure you don’t fall behind on appointments. Keeping up with annual or semi-annual check-ins may reduce your chances of misdiagnosis.
“Having a good relationship with your provider, preferably over several visits to improve continuity, will likely improve the safety and quality of the care you receive,” says Purrington.
If your condition is getting worse or not resolving in the expected timeline, it’s worth asking your doctor to reassess the problem, says Beatty.
“If they can’t offer anything new, it might be worth a second opinion,” he says. “Occasionally, the doctor-patient relationship breaks down for one reason or another. If this happens, it’s in everyone’s interest to seek another opinion.”
“The first wealth is health.”
— Ralph Waldo Emerson
Misdiagnosis happens for many reasons, from busy doctors to patients who don’t disclose their full range of symptoms.
There are many steps you can take to help get the right diagnosis, like writing down a list of concerns, taking photos of your symptoms, and continuing your research when you get home from the doctor.
If you feel like your health concerns aren’t being taken seriously, or you just feel “off” and can’t figure out why, don’t be afraid to get a second opinion.
It’s your body, and you know it best.
Hilary Lebow is a health journalist in Miami, Florida. She covers fitness, nutrition, mental health, and personal development content. She’s also a certified yoga instructor through the Yoga Alliance and a certified nutrition coach through the National Academy of Sports Medicine (NASM).