First, came the depression diagnosis. Then, a catatonia diagnosis. PTSD and anxiety labels were thrown in the mix, too.
In college, 12 people Natasha Pierre knew had died within six months, and all she could do was talk to the campus priests about how she was feeling. The trauma piled on, and being in New York City during the 9/11 attacks sparked more symptoms.
It wasn’t until the antidepressant medication Pierre was on intensified her episodes that a psychiatrist gave her the most accurate diagnosis, bipolar disorder. Seven years had passed.
She wonders if her diagnoses were rushed. Did the clinicians rush to the easiest conclusion?
Pierre’s experience of misdiagnosis is not uncommon for Black people suffering from mental health issues. There are trends of both overdiagnosis and underdiagnosis of Black people, depending on the symptoms. Some clinicians can be quick to diagnose Black Americans with illnesses like schizophrenia that involve psychotic symptoms, such as hallucinations and delusions. When Black folks express feeling like others are out to get them or being paranoid about police encounters, it can be mislabeled, experts say.
Clinicians “may take something that is relatively understandable given the realities of racism and think of it as psychotic or problematic,” said Natalie Watson-Singleton, an associate professor of psychology at Spelman College.
On the other hand, mood disorders like depression tend to be underdiagnosed among Black people until the symptoms become increasingly severe. Why this happens varies by case, but experts say how Black Americans show depression and anxiety symptoms may be different from how mental health professionals are trained to spot it, and the social pressures Black people face to remain strong and in control of their emotions — even suppress them — may lead to delays in seeking help.
A study published last year found that Black women were more likely to report physical symptoms like fatigue and insomnia when they experience depression, as opposed to stereotypical symptoms such as feelings of hopelessness or sad mood. This might lead to underdiagnosis and undertreatment, said Nicole Perez, the study’s lead author.
It’s not like a traditional medical examination that might include X-rays and blood tests for a clear diagnosis. Within mental health, different patients can present a completely different set of signs.
Why clinicians miss the signs
“If we’re missing the symptoms, we’re going to be missing the diagnosis,” Perez said.
Experts say bias may be to blame in some cases. Many Black people seek mental health help. Yet, they are more likely than other racial groups to end treatment early, which is often due to distrust or not feeling like a clinician can really relate to them, Watson-Singleton said. That is why many Black patients prefer Black providers. And the gaps in care may explain the delayed diagnoses.
“We don’t take Black folks seriously until their symptoms are worse and more severe,” she said.
But Black people might also be slow to recognize their own stress, anxiety, and depression.
Dr. Karinn Glover, a New York-based psychiatrist, said that with her patients, who are mostly Black and Afro-Latino, there is often disappointment after being diagnosed with depression. There’s a belief that it is a sign of weakness. They start to carry with them a sense of guilt, she said.
“It just does not fit within the model in their mind of who a Black woman should be,” Glover said. She has battled similar personal experience. Others have different expectations of what kinds of stress she could tolerate, and she internalized it, she said. “I may always struggle to figure out what my threshold for stress is.”
Glover does not think Black women present symptoms of depression any differently than other racial groups, but notes that her own experience may make her uniquely sensitive to the pain her clients describe. Anxiety may be different, she said. Black women may be quick to dismiss what they feel due to shame.
“We may not realize how anxious we are,” Glover said. “Being cool and looking cool and keeping cool is so highly valued in Black culture.” It is scary to acknowledge when you feel like you can’t control your worry, or your mind is racing about what might go wrong in the future, she said.
How misdiagnosis takes shapes often looks different case by case. It varies by setting, experience, and symptoms. Children are not immune. Nekia Wright, an education specialist and sound healing facilitator, says it manifests within the school system.
“The education system is racist, and the special education program is 40 times more racist,” said Wright, as she sat at a coffee shop on the corner of Polk and Pine streets in San Francisco, recounting the trauma her work put her through. Wright switched to teaching only part time after doctors told her it was the only solution to the stress-induced health issues she was battling.
“The kids are told that being Black is a disability,” she said.
She grew angry on that Sunday afternoon in April telling the story of an 8-year-old boy she worked with. He had been hit in the eye with a stick, and after it healed, his teacher noticed he was less attentive in the classroom. The teacher escalated the case as a behavior issue despite his mother’s explanation of the injury. When Wright reviewed the 30-page assessment, which included an evaluation with a psychologist, she saw the note that the child said he couldn’t see the writing in front of him in class.
But, no vision assessment had been done. Instead, the report concluded he had ADHD, or attention deficit hyperactivity disorder. Later, Wright ordered him larger print text to help him read, and she noticed he sat longer than most kids might.
“No one listened to this mom and this child,” she said, her voice hot with frustration. She worries about how it will affect the child in the long run.
Studies show that Black children are overly represented in special education classes, and the ripple effects of misdiagnosis can have serious consequences. That harm not only leads to stigmatization but impacts how they are seen as they mature and go out into the world.
Black people aren’t being adequately treated for their mental health issues, Watson-Singleton said. The shortage of providers — and barriers to care like insurance coverage, transportation issues, and mistrust of American health care systems — also complicate diagnosis rates and use of treatment, she said. She hopes the increased use of telehealth, including therapy sessions, as well as the push to grow the number of Black mental health professionals will help curb the issue of misdiagnosis.
Patients having providers who look like them and understand their experience is essential, Watson-Singleton said.
Pierre, who was misdiagnosed before finding the right treatment, believes her experience could have been avoided had providers had more conversations with her about what she was feeling and dealing with.
“I never want anyone to feel as hopeless as I have felt,” said Pierre, who today is a mental health educator. She wants people to know their pain matters. And, that they are not alone.
“Me, too,” she said. “You’re not the only one.”