Many people rely on their medical doctor as though they were an infallible god. I understand how that happens because in many cultures we’re conditioned to see doctors as authority figures, several steps above normal human beings.

But is that a wise idea?

Medical error is the third major cause of death each year in the U.S., causing between 250,000 and 440,000 causalities. These deaths are not all attributable to doctor error. But still, do you really want to count on your physician one hundred percent?

Also, medicine is not an exact science. Doctors often assign the term “idiopathic” to a disease when there’s no known cause. With all the existing gaps in medical knowledge, can a doctor know the right step every single time?

Is it really safe to nod your head to whatever your doctor says? Or should you become an active participant in your own healthcare decisions?

Here are three reasons I think it’s smart to advocate for yourself.

1. Your doctor may not order the right tests

In August of 2020, Jenny Apple went to see her doctor about rib pain that began after the birth of her daughter. 

Jenny’s pain had progressed from the back to the side and finally to the lower front area of her ribs. She also reported shortness of breath and an inability to sneeze or yawn normally.

Her doctor told Jenny she had probably injured herself when lifting her young children, both under the age of five. He told her to stop lifting her children and to continue her regular routine of stretching and yoga.

Jenny was indeed proactive at the appointment. She asked for blood work, an X-ray of her lungs, and an ultrasound of her spleen, an organ close to the left lung. The results were normal. In fact, her doctor complimented Jenny on her good health.

Jenny didn’t know to ask for an MRI of her lungs. She’s not a trained doctor, right? 

The pain continued to worsen over the year even though Jenny no longer lifter her children. In January 2021, Jenny decided to give it her all with a month of almost daily yoga practice, but saw no improvement.

Suddenly, in February 2021, Jenny could no longer get through her yoga routine without huffing and puffing and stopping to rest several times.

A few days later, Jenny took her kids to a nearby park. On the way, she had to stop three times to catch her breath. Once at the park, she couldn’t run around with her kids at all.

Jenny knew something was wrong. 

Since her regular doctor was booked for months, Jenny decided to go to an urgent care facility. But Jenny knew she tended to be too nice and too compliant in medical settings. So before she went to urgent care, her sister, coached her on how to advocate for herself.

At urgent care, Jenny explained the severity of her pain and other symptoms and requested a scan of her lungs. The physician’s assistant (PA) refused her at first. Jenny literally begged and pleaded until the PA finally relented.

In retrospect, Jenny finds it curious her doctor didn’t order an MRI since she reported shortness of breath at her initial visit.

You probably won’t be surprised to learn the scan found “something” on Jenny’s left lung. Jenny was referred to a pulmonologist (lung specialist), who called her a few days later alarmed by what she had seen on the scan.

Jenny had a lung biopsy on March 17, 2021. On March 19, at thirty three years of age and eight months after her initial doctor’s visit, she was diagnosed with Non Small Cell Lung Cancer (Adenocarcinoma).

In retrospect, Jenny finds it curious her doctor didn’t order an MRI since she reported shortness of breath at her initial visit. She feels certain the cancer would have been detected at that point if he had. 

But we’ll never know. We’ll never know if she would have had a different outcome if her doctor had order an MRI off the bat. We’ll never know if she would have had more time with her two young children.

Two months ago (August 2023), Jenny was given two months to live. She’s currently in a clinical trial, but is not fairing well at the moment.

Jenny’s doctor made his best call based on her age, history of good health, and presenting symptoms. But it may not have been the right call. 

2. Your doctor says, “It’s all in your head”

Have you ever had a physician downplay or dismiss your physical symptoms? They may have even said it’s all in your head or attributed your symptoms to a specific mental health condition like anxiety or depression.

We now have a term for this type of behavior. It’s called “medical gaslighting.” Medical gaslighting occurs more commonly when the patient is a woman or a person of color (or both).

For example, men are routinely diagnosed with cancer or heart disease earlier than women. And another study showed people of color were more likely to have stroke symptoms misdiagnosed in the emergency room in several U.S. states.

Medical gaslighting occurs more commonly when the patient is a woman or a person of color.

It’s happened to me, more than once.

I recently told my gynecologist that I had a serious pain reaction to Alendronate, a medication used to increase bone density. She said, “Well, older people have lots of aches and pains.”

I love my gynecologist (or thought I did). But it’s a terrible feeling to have your symptoms downplayed. It’s also easy to feel like “doth protests too much,” when you attempt to set them right. 

Medical gaslighting is a serious problem because it can lead to an incorrect diagnosis, a delayed diagnosis, or no diagnosis at all.

3. You have a hard to diagnose condition

It’s easy to diagnosis common health problems like Type 2 Diabetes, High Blood Pressure or GERD.

But there are 7,000 known rare diseases and 24–30 million Americans currently living with one according to the National Organization for Rare Diseases.

According to the European Commission, rare diseases constitute a major health issue. They say it can take five years on average to get diagnosed with a rare disease. And many people never receive a diagnosis at all.

It can take five years on average to get diagnosed with a rare disease. And many people never receive a diagnosis at all.

When I became seriously ill in 2004, I put two and two together, did my research, and figured out I likely had a mast cell disorder. Not a single doctor was able to make the diagnosis. 

I understand because mast cell disorders were considered rare at the time. And I was unable to travel to see one of only a handful of mast cell disorder specialists.

As you can imagine, I experienced instances of medical gaslighting far worse than the side comment made by my gynecologist. Because I had dwindled to eighty four pounds, doctors automatically assumed I had a psychiatric disorder like anorexia nervosa.

As it turns out, Hereditary Alpha Tryptasemia (HαT) is not a rare disorder, but the genetic anomaly was not identified until around 2015. I expect, however, my long journey to a diagnosis parallels that of a person with a rare disorder.

After a bout of severe chest pain in 2019, entirely unrelated to heart issues, an allergist finally diagnosed me with Mast Cell Activation Disorder (MCAD). Then a genetic test confirmed (HαT) in 2019 as well.

I kept advocating for myself all those years until I finally got a correct diagnosis.

Concluding Thoughts

Medical doctors are not gods. Despite their years of training, they still make mistakes. Some even engage in “medical gaslighting” by dismissing, downplaying, or misattributing a patient’s symptoms.

It’s not always easy to talk to doctors, especially ones who see themselves as the sole authority who knows all. But remember, your health and well-being are at stake.

Learn to advocate for yourself during your medical appointments. Come prepared with a list of your symptoms and a list of relevant questions. Consider taking a friend or family member along to the appointment for support. Trust your gut. If something doesn’t feel right, speak up.

If you’re not satisfied with your doctor’s response, get a second opinion. The sooner you can get to your real diagnosis, the sooner you’ll get the treatment you need. Speaking up might even extend or save your life.

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