Professional Help Isn't Always a Step Forward
Misdiagnosis rates remain high due to insufficient training, cultural bias and miscommunication.
Written by Lauren O'Shaughnessy
01 Misdiagnosis rates are internationally high, with one study finding that general practitioners correctly identified depression in only 47.3% of cases.
02 Minority communities battle misdiagnosis and barriers to treatment at higher rates than white communities.
03 Mental health exists on a spectrum. In order to treat it properly, doctors must take into account the fluidity and subjectivity of every patient’s experience.
Accepting help is intimidating for most sufferers. It often takes years before people are comfortable opening up to others about their condition, let alone seeking proper care. Those initial consultations are marked by a combination of nerves and excitement. What do I have? Will treatment work? When will I start to feel better?
Unfortunately for some, getting into the doctor’s office comes with less relief than expected.
Misdiagnosis rates are internationally high, with one study from 2009 finding that general practitioners correctly identified depression in only 47.3% of cases.
Similar research conducted by Brown University found that 57% of adults initially diagnosed with bipolar disorder did not meet the diagnostic criteria upon later review. Other disorders, like PTSD, OCD and ADHD, are often misdiagnosed as well, forcing people to undergo treatment for conditions they don’t have. In some cases, their disorder worsens. One study showed that out of the 85% of respondents who received a delayed bipolar diagnosis, 71% said their symptoms intensified as a result of receiving the wrong care.
The causes of misdiagnosis are numerous and complex. On a macro scale, our understanding of the human mind is still in its infancy. Mental health science only started in the 19th century, with William Sweetser’s coining of the term “mental hygiene.” It wasn’t until 1908 that the first outpatient mental health clinic was opened in the US. Even in 2018, the criteria for disorders is constantly changing, a reality that led the DSM-5 to switch from updating it’s text every 10-15 years, to allowing for timely revisions.
But this doesn’t sufficiently explain the high rates of misdiagnosis. The real reasons are more complicated than “we’re still learning.”
Poor practitioner analysis is a primary cause. The standard mental health screening process does not include a deep dive into a patient’s behavioral history, leaving years of crucial information unconsidered when making a diagnosis.
To complicate things further, some doctors assume a diagnosis prior to their evaluation, causing them to look for certain symptoms, rather than gain a solid overview of a patient’s history prior to making a call.
“We believe that clinicians are inclined to diagnose disorders that they feel more comfortable treating,” says Dr. Mark Zimmerman, Director of Outpatient Psychiatry at Rhode Island Hospital. He went on to add that disorders that are medication-responsive, such as bipolar disorder, may be diagnosed more often because doctors have clear medicinal options to recommend as patients begin treatment — a trend that hints at potential deals between clinicians and big pharma.
Alongside screening issues, are problems with practitioner training. Our understanding of mental conditions is constantly changing based on new research, treatment options and sufferer accounts. General practitioners have a tough time staying well versed in the full spectrum of disorders, meaning that diagnoses are their best assumption, but not always the expert opinion patients are hoping for.
“General practice has followed the same training program for over 30 years, against a backdrop of huge change in the organization and structure of the way general practitioners work,” stated a 2017 UK-based study titled GP Training in Mental Health Needs Urgent Reform. This lack of confidence has led many sufferers to rely solely on expensive, specialist care, which is an inaccessible or unsustainable option for the majority of people.
Cultural competence and bias play a huge role as well. The prevalence and manifestation of mental conditions varies between cultures. What’s common in one, might not be in another, as is the case with anorexia — a condition largely found in the western world. Other important cultural factors, like forms of communication, family dynamics, spirituality, rates of violence and addiction, and gender roles all impact mental health.
Attempting to diagnose and treat conditions without a solid understanding of the environment a person is from makes it far more likely that symptoms will be misunderstood or go unaddressed. This disconnect impacts communities of color at far higher rates than it does others.
“Cultural competence is a doctor’s ability to recognize and understand the role culture (yours and the doctor’s) plays in treatment and to adapt to this reality to meet your needs,” says NAMI. “Unfortunately, research has shown lack of cultural competence in mental health care. This results in misdiagnosis and inadequate treatment. African Americans and other multicultural communities tend to receive poorer quality of care.”
However, doctors aren’t solely responsible for this mess. Patients play a role as well. Many people withhold symptoms from practitioners out of embarrassment or lack of awareness. They may not recognize certain behaviors as problematic, and therefore, don’t disclose them. Doctors frequently see cases in which people only come in during depressive episodes, but not manic highs or bouts with anxiety. They’re then more likely to believe that the individual is suffering with depression alone, rather than a combination of symptoms.
There are short term and long term consequences to misdiagnosis. In the immediate, individuals are subject to costly, incorrect treatment that might worsen their condition. With certain disorders, this could have a serious impact on a person’s mood and the efficacy of future treatment. They’ll also have to deal with the stress of finding a new diagnosis and affording additional consultations.
In the long term, high misdiagnosis rates create widespread mistrust of the mental health system and its ability to help those that are struggling. It keeps people from seeking care, most specifically those in multicultural communities.
“Historically, African Americans have been and continue to be negatively affected by prejudice and discrimination in the health care system,” says NAMI. “Misdiagnoses, inadequate treatment and lack of cultural competence cause distrust and prevent many African Americans from seeking or staying in treatment.” This inequality also upholds stereotypes about the rates of mental health conditions in different cultural groups. It leads people to believe that some ethnicities are more prone to certain disorders than others.
Trusting practitioners can be hard when research indicates such serious and widespread issues. However, if you’re suffering, speaking with a professional is still highly encouraged. Do thorough research into the options in your area. Look for providers that believe strongly in diagnostic clarity. Make sure to disclose as much as you can to your practitioner, and if possible, encourage family members to provide additional context by speaking directly with your doctor.
If something feels off, speak up and seek a second or third opinion. If you do not feel comfortable confronting your care provider, look for alternative options. Patients should always feel safe, supported and listened to. If you recognize new symptoms after starting a medication, do not hesitate to discuss them with a doctor. If a drug is not working for you, it’s important to get off it sooner rather than later.
Lowering misdiagnosis rates should not be the sole responsibility of sufferers. The mental health system needs to support treatment for people of all disorders, ethnicities and socioeconomic status. Practitioners should put the thoughts and experiences of their patients before their relationships with drug companies or their internal biases.
Lastly, they must embrace the reality of the mental health spectrum. While labels and diagnostic criteria allow us to diagnose and treat conditions, they can also get in the way of understanding a person’s unique experience. Mental health is subjective and fluid. What is true for one person, is not always for another. A healthcare system that groups people into rigid boxes, is one that will miss warning signs, overlook behavioral breakthroughs and silence those it’s meant to help.
About the author
Lauren is cofounder and director of content at the Made of Millions Foundation. She has been a part of the team since its launch in 2016. She has been open about her personal struggles with Generalized Anxiety Disorder and social phobia. You can follow her on Instagram at www.instagram.com/internet_lauren