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Why the Right Mental Health Diagnosis Is Lifesaving According to People Who ve Been Misdiagnosed

One woman says she received several misdiagnoses over the course of 15 years before being correctly diagnosed with bipolar disorder. Another says she spent 25 years taking psychiatric medications she didn’t need. By Cheryl Platzman WeinstockMedically Reviewed by Allison Young, MDReviewed: November 8, 2021Medically ReviewedJulie Whitehead (left) and Jenn Carson (right) share their misdiagnosis stories.Photos courtesy of Julie Whitehead and Jenn Carson Looking back, Julie Whitehead has a lot of regrets about her parenting skills. “My kids were raised in a disordered home,” says Whitehead, 51, who is from Brandon, Mississippi. “I was off the handle with the oldest. I had a sharp temper with her.” Whitehead says she was at her best when her second oldest daughter was growing up. But in 2006 — one year after her youngest daughter was born — Whitehead says she became overwhelmed with having three daughters under age 10. She was having constant crying spells as well as difficulty concentrating, which made it hard for her to function. “I was not able to take care of my third child at all,” says Whitehead. Soon after her youngest daughter’s first birthday, Whitehead crawled out of bed in the middle of the night, packed her clothes, and ran away to Louisiana, leaving her husband to care for their girls. “I was going to kill myself,” Whitehead says. She was rescued by police in Louisiana, who brought her to a hospital there. Her husband brought her back to a psychiatric hospital in Mississippi, where she remained for a week. Finally, 15 years after receiving wrong diagnosis after wrong diagnosis for her mental health issues, including obsessive-compulsive disorder, postpartum depression, and post-traumatic stress disorder (PTSD) because she had lived through Hurricane Katrina, Whitehead’s team of experts at the Mississippi hospital diagnosed her with bipolar disorder. It’s a mental health condition in which a person has unpredictable mood swings from depression to mania or hypomania — feeling more elated, energetic, or irritable than normal. It affects about 5.7 million American adults, according to the Depression and Bipolar Support Alliance. “I thought I was lazy instead of depressed,” says Whitehead. When she had hypomania, she thought nothing of it. “No one goes to the doctor for being too happy … It never occurred to me that there was something that deeply wrong,” Whitehead says.

How Common Are Psychiatric Misdiagnoses

Whitehead is not alone in being diagnosed with the wrong mental health disorder. One study, published in February 2021 in the Annals of General Psychiatry, suggests that more than a third of patients with a severe psychiatric disorder have been misdiagnosed. The study included 309 patients in an outpatient clinic of a specialized psychiatric hospital in Ethiopia. In this sample of patients, researchers found that schizoaffective disorder was the most misdiagnosed condition (75 percent of cases), followed by major depressive disorder (54.72 percent), schizophrenia (23.71 percent), and bipolar disorder (17.78 percent). The study also showed that patients with bipolar disorder were 60 percent more likely to be misdiagnosed as having schizophrenia. And those with schizophrenia were found to be 56.25 percent more likely to be misdiagnosed with bipolar disorder.

What Could Cause a Psychiatric Misdiagnosis

According to Itai Danovitch, MD, a professor and the chair of psychiatry and behavioral neurosciences at Cedars-Sinai Hospital in Los Angeles, misdiagnosis is incredibly common for many different health conditions. The reason? “Identifying symptoms is one thing. Figuring out what is causing it is another thing. In order to figure out [the right diagnosis] you need to have a thoughtful and comprehensive assessment,” says Dr. Danovitch. Whitehead believes her illness began during her teenage years. But “the South in the early ’80s was not ready for a child who was as sick as I was. There were no community mental health centers,” she says. As Whitehead got older, her insurance didn’t cover mental health visits. She never saw a psychiatrist, instead relying on her internist and obstetrician for help.

Why Seeing a Mental Health Professional Is So Important

It can be helpful in some cases for a person with a potential mental health problem to start with a visit to an internist, says Ramin Mojtabai, MD, PhD, MPH, a professor in the department of mental health at Johns Hopkins Bloomberg School of Public Health in Baltimore. But this approach has its drawbacks, Dr. Mojtabai says. He adds that a primary care provider may only be able to spend 10 to 15 minutes talking with patients, which may not be enough time to fully to evaluate someone for a mental health disorder in the same way a psychiatrist could. That said, primary care providers can help rule out any underlying medical problems, such as thyroid disease, that could be causing mental health symptoms, Mojtabai says. He recommends anyone with mental health concerns discuss all their symptoms with their doctor. “There’s a lot of shame and stigma associated with mental health disorders. People tend to hide their symptoms because they feel they may be looked down upon,” says Mojtabai. Another common reason misdiagnoses happen is “not because an evaluator did something wrong; it’s because symptoms tend to evolve over time,” explains Christine Crawford, MD, MPH, an adult and child psychiatrist and an associate medical director for the National Alliance on Mental Health (NAMI). Dr. Crawford adds, “A lot of providers are getting only a cross-sectional snapshot of what is going on in the person in front of them.” This is why a lengthy evaluation with a mental health professional is often needed to make a psychiatric diagnosis like bipolar disorder. If an evaluation is too short and narrow in focus, a condition like Whitehead’s is difficult to diagnose. Whitehead says her providers likely only saw symptoms of depression or hypomania, but not both, in one visit.

Unconscious Biases Among Healthcare Providers Can Play a Role

Sometimes even a thorough evaluation by a qualified clinician can lead to an incorrect diagnosis because of biases providers hold, whether they’re aware of these biases or not. “I can acknowledge absolutely that biases happen along gender, ethnicity, culture, and nationality. It is important to be aware of biases so they don’t inappropriately affect assessments,” says Danovitch. Research has shown that African Americans are more likely than other groups of people to be misdiagnosed with schizophrenia. A study published in JAMA Psychiatry showed that the rates of clinical diagnoses of schizophrenia were disproportionately higher among African Americans compared with non-Latino white people, which contradicted existing evidence for the rates of schizophrenia among African Americans. These disparities were likely due to racial or ethnic biases, the authors of the study noted. In this study, clinicians were less likely to consider the possibility of a mood disorder among African Americans, the researchers wrote. This is a notable finding, because a diagnosis of schizophrenia is intended to be given only after other mental or neurological illnesses are ruled out, per the Diagnostic and Statistical Manual of Mental Disorders, the standard classification system used by U.S. mental health professionals. Another study, published in December 2018 in Psychiatric Services, yielded a similar observation. According to the authors of the 2018 study, their findings were “consistent with findings from a large body of literature suggesting that racial differences in the diagnosis of schizophrenia in the United States result in part from clinicians underemphasizing the relevance of mood symptoms among African Americans compared with other racial-ethnic groups.”

A Wrong Diagnosis Often Equals Wrong Treatment

Getting the right diagnosis is crucial for treating the right illness — left untreated or improperly treated, mental health disorders can have a ripple effect. The rate of unemployment is higher (5.8 percent) among U.S. adults who have mental illness compared with those who do not (3.6 percent), according to NAMI. Whitehead, a former reporter for the Mississippi Center for Investigative Reporting, says, “I had to quit freelance writing because I could no longer concentrate or deal with deadlines.” People with mental health disorders are also 40 percent more likely to develop cardiovascular and metabolic diseases, NAMI reports. Prescriptions for the wrong medications are another serious consequence of an incorrect diagnosis. Jenn Carson, of Riverside, California, was 39 when she finally received a diagnosis of complex post-traumatic stress disorder (CPTSD), a mental health condition that can result from repeated exposure to trauma for months or years, according to the U.S. Department of Veterans Affairs. Though not formally recognized in the The Diagnostic and Statistical Manual of Mental Disorders, which is the standard diagnostic criteria used by mental health professionals, some clinicians have suggested that the standard diagnosis of PTSD doesn't fully reflect the psychological harm that can occur with prolonged exposure to trauma, the U.S. Department of Veterans Affairs reports. Other clinicians prefer to use the standard term "PTSD" because this condition is often already complex in nature. Until she turned 39, Carson had been given several incorrect diagnoses, including major depressive disorder, bipolar disorder, and generalized anxiety disorder. “For about 25 years I was treated like a guinea pig,” says Carson, who adds she was given more than 17 different unnecessary medications over the years with side effects ranging from rashes and other skin problems to fainting and insomnia. “I would say after 25 years of trying to fight for myself I really thought I was going to stay in the zone I was in. I was just existing. I definitely had lost hope I would ever reach recovery or health or happiness,” says Carson, 47, who is now the crisis line supervisor for the Inland SoCal Crisis and Suicide Helpline at Inland Southern California United Way in Rancho Cucamonga. She is also a doctoral candidate in social work.

How to Get the Right Diagnosis the First Time

Being correctly diagnosed can be lifesaving. “If I had the right diagnosis, I wouldn’t have tried to commit suicide,” says Whitehead. According to Danovitch, the key to getting the right mental health diagnosis often lies in patience and empowerment. “Misdiagnosis can happen when you rush to make a diagnosis,” he explains. Seeing a professional who specializes in mental health disorders, such as a psychiatrist, can also increase your odds of receiving the correct diagnosis. Danovitch says he believes people should become “experts” on their own condition once they’re diagnosed and ask questions as much as possible, so they can become “empowered enough to know what they deserve and the evidence-based interventions available and what the goal of treatment is.” For people like Carson and Whitehead, the right diagnosis and treatment changed their lives. “I didn’t think I would ever be alone without my husband and do so well,” says Whitehead, who recently flew back from Florida after two weeks of caring for her newborn grandson. “I’m in a really good place now.” If you or someone you know needs mental health help, contact the National Alliance on Mental Illness (NAMI) at 800-950-NAMI (6264), or the Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline at 800-662-HELP (4357). If you are in immediate danger, call 911 or the National Suicide Prevention Lifeline at 800-273-8255. NEWSLETTERS

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