A patient walks into a doctors office with several symptoms: elevated heart rate, joint pain, dizziness, widespread chronic pain, dexterity problems, memory and focus problems and fatigue that is preventing her from meeting her responsibilities. She has a history of concussion, childhood epilepsy, anxiety and autism. She's young and looks healthy so the doctor dismisses it as anxiety and runs labs. Her labs show minor anemia which is common in young women, so this is dismissed. The doctor concludes that it's psychosomatic, that her symptoms are “real” but the cause is in her mind.
She leaves the doctors office still in pain, now believing herself crazy. No treatment offered, symptoms continuing. A few months pass and her symptoms worsen, so she returns to her doctor. He prescribes anti-anxiety medication. She tries several, none help and most come with terrible side effects. She wakes up one morning and her heart rate is extremely elevated reaching 187 beats per minute, this is far outside the range of normal for a teenager, so she goes to the emergency room. She’s largely ignored while in the ER, and after several hours they send her home with a diagnosis: anxiety.
Returning to her family doctor, the patient demands something to be done. She is scared and exhausted, so her doctor orders a 3 day heart monitor, saying, “I'll order the test if it makes you feel better, but it will be normal”. The result is not normal, showing that her heart rate is well above the normal range over 37% of the time tested. Even this is ignored because “anxiety can cause increased heart rate”. A year later, another 3 day monitor is ordered, and her mother insists this report, which is nearly identical, not to be ignored. She is diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). This explains the elevated heart rate and dizziness but not the other issues at hand. Years pass she continues to fight doctors, see specialists and is regularly dismissed.
During a review of family medical history her mother is going through old hospital records and images when she notices an abnormality on a brain scan which was done 12 years earlier when she was 4. The report from that MRI clearly states the diagnoses they had been looking for: Chiari Malformation type 1. Another MRI is done to confirm the diagnosis and reviewed by a local neurosurgeon. The response is a familiar one: “Your case is extremely minor and not causing your symptoms. My diagnoses is anxiety and fibromyalgia”
She is not satisfied with this and knows she has a right to a second opinion. She sees a specialist in her condition; she is diagnosed with the more severe Chiari Malformation 1.5 due to brain stem involvement and Occult Tethered Cord Syndrome. After 4 years of agony and fighting, she is finally offered appropriate treatment.
This is my story, but it is far from an uncommon one. My story is echoed by thousands of people, all with the same message: “I was suffering and my doctor dismissed or didn't believe me”. People are misdiagnosed and dismissed by doctors regularly. Most commonly women, people of color and other minorities. There are 3 main factors that may lead to this: rare/difficult to diagnose conditions, medical bias and personal bias.
Conditions that are rare and/or difficult to diagnose are often misdiagnosed or missed entirely, because they require specialized training after graduation or because of the common medical term “when you hear hoofbeats, think horses not zebras”, meaning ‘the most common answer is usually the right answer”, however this single statement used so commonly in modern medical practice leads to medical mismanagement on a large scale. These conditions often require extensive testing and several specialist appointments to diagnose, and this is often difficult to schedule within a reasonable timeline, or there simply isn’t a specialist to treat the condition available.
Medical bias happens when the medical data is skewed. For example, the classic heart attack symptoms were studied on middle aged white men, and as a result women who experience different symptoms when having a heart attack are often misdiagnosed. The same can be said for women and girls with autism. The medical community is working to fix these discrepancies, and more diversity is being included in studies recently, but this takes time. Unfortunately as a patient the best way to mitigate this is to keep seeking second, third and fourth opinions. If you have been struggling with a medical issue and fall victim to medical bias, you may consider participating in studies. It may not help you directly, but it will help resolve the larger issue over time.
The third reason you may be mismanaged is personal bias, which is almost always aimed at people in poverty, people experiencing homelessness, people of color and women. Doctors are human, and can display racist, misogynistic, or outdated views and whether it is intentional or not, it affects the care they provide patients. Women and people of color are more likely to be called dramatic or accused of drug seeking and are less likely to receive adequate pain medication. 57% of women report being misdiagnosed.
You are not crazy, dramatic or faking, and if you are suffering it should not be dismissed. If you are dismissed you have a right to a second opinion and a third and a fourth. You deserve a diagnosis and treatment. It's possible, but unfortunately you may need to fight for it.
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