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Bipolar disorder misdiagnosis: How the label can steer some patients wrong.

S.Hernandez1 hr ago
By age 11, Kassondra Ola had been prescribed the following psychiatric medications at one point or another: Zoloft, Concerta, Celexa, Lexapro, risperidone, Neurontin, Depakote, Seroquel, lithium, Topamax, Trileptal, Abilify, and Adderall. It's a mix of antidepressants, antipsychotics, a stimulant, and a few things for seizures.

Growing up in northern Virginia, Ola was a skinny and anxious preteen. She got good grades, but she was withdrawn and easily distracted. She ate little; the textures of some foods did not seem right. Internally, she was processing the rift between her parents that would eventually lead to their divorce, as well as the aftermath of a childhood trauma. Her parents got her into mental health treatment, and when she was 10, a psychiatrist diagnosed her with bipolar disorder.

The meds he prescribed made her sleepy and caused tremors and body pains. They brought on a mental haze, and the frustration of struggling against it led to more moodiness and outbursts, Ola recalls. She once yelled at a teacher that she was in so much pain she didn't want to live anymore.

"The medications seemed to induce more behavioral problems than they helped," said Ola. "I was always in trouble for something, and they were always adjusting the meds or sticking me in the psychiatric unit for something." She felt as if she had little self-esteem or even a sense of identity.

By age 20, Ola was living with her grandmother and muddling through community college classes. At church, she met someone who was diagnosed with Asperger's syndrome, a condition that today would be considered autism spectrum disorder . He noted that, like him, she had trouble socializing and experienced sensory aversions. They even had the same slow, precise speech pattern.

After a neuropsychological test, Ola was diagnosed with Asperger's too. Her signs of maladjustment as a preteen? Maybe they were how a neuroatypical kid dealt with stress.

By the time Ola was categorized bipolar in the early 2000s, the diagnosis was taking off. One study found that from 1994 to 2003, bipolar diagnoses doubled for American adults. Cases of pediatric bipolar, a controversial concept , went from anomalies to an estimated count of 1 million by 2010 . The swell of people labeled bipolar, according to recent research , appears to be continuing.

Today there are about 3.3 million Americans with a bipolar disorder diagnosis. Many experts think that this figure is an undercount of the true number of people living with the condition. As with any disorder, some diagnosable people are never seen by a clinician. And many patients who wind up with the label of bipolar disorder are initially misdiagnosed with unipolar depression .

But some psychiatrists think that the bipolar diagnosis has actually gone too far—that there is a large contingent of patients who have been slapped with a trendy label, the definition of bipolar having drifted far beyond its original meaning. Research indicates that false positives for bipolar disorder may be alarmingly common . In a landmark study published in the Journal of Clinical Psychiatry in 2008 , more than half of bipolar patients who were reevaluated were determined to have been misdiagnosed. It's possible that misdiagnosis and underdiagnosis are widespread issues—but the field continues to be divided on whether misdiagnosis is an issue at all.

Perhaps no topic in 21st-century adolescent psychiatry has been more controversial than pediatric bipolar, a diagnosis that can be applied to kids as young as 5 who have severe problems with emotional control. Critics say the label pathologizes normal but challenging parts of growing up. Proponents say it's a needed intervention for kids not helped by other means.

No matter their age, when a patient receives the diagnosis of bipolar disorder, they are usually routed toward prescription drugs and can be blocked off from other diagnoses—and therefore other avenues of treatment. Borderline personality disorder , neurodivergence , and ADHD can all be misdiagnosed as bipolar but have vastly different treatment regimens. The first two are often treated without meds.

Misdiagnosed patients like Ola often look back on years of worsening symptoms and missed opportunities—a life that would have been different, better, if only doctors hadn't misunderstood something so fundamental about them. "What misdiagnosis has done is it's delayed the diagnosis of important things," Ola said, "delayed the grieving of important things." Further, she said, "it's allowed for underlying conditions to get worse."

Bipolar disorder entered the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders in 1980, replacing the depression subtype of manic depression .

It was defined as a cycle of extremes; patients experienced recurring episodes of depression symptoms, then separate intervals of mania, which could include "hyperactivity, pressure of speech, flight of ideas, inflated self-esteem, decreased need for sleep, distractibility, and excessive involvement in activities that have a high potential for painful consequences."

A manic episode was "intrusive, domineering, and demanding," according to the DSM-III. A patient might drive, spend, or fornicate recklessly. They might dole out candy, money, or advice to strangers. They might take on a "disorganized, flamboyant, or bizarre quality, for example, dressing in colorful or strange garments, wearing excessive, poorly applied make-up." This kind of spectacle and the bouts of depression—involving symptoms like hopelessness, lethargy, and loss of interest in life—were the two distinct "poles" of the illness.

Over time, the criteria for bipolar loosened—a lot. In 1994 the DSM-IV introduced a controversial twist on the original bipolar label. Bipolar II lowered the threshold for diagnosis from mania to hypomania, a boost in mood but a milder one. The checklist for a hypomanic episode included some of the tamer symptoms of a true manic episode, like decreased sleep, greater sociability, and a zeal for new activities. But, the DSM-IV stated, "such activities are usually organized, are not bizarre, and do not result in the level of impairment that is characteristic of a Manic Episode."

On a surface level, the person might seem the opposite of mentally ill, as if they are simply seizing the day, the DSM-IV acknowledged. "Although the person's mood may have an infectious quality for the uninvolved observer," it noted, "it is recognized as a distinct change from the usual self by those who know the person well."

The lowering of the threshold for a bipolar diagnosis didn't stop there. Clinicians were soon talking about a " bipolar spectrum " and "subclinical bipolar."

"That's sort of the idea, that there's this invisible, less severe form of bipolar [even] less severe than bipolar II," said Paul Doyen, a clinical social worker in New Orleans who has written about what he sees as overdiagnosis. That assertion led to estimates of the prevalence of the disorder, Doyen argues, "that were really pretty wild."

Mania (and, later, hypomania) was once a key criterion for the disorder, says Fernando Goes, the director of the Mood Disorders Clinic at Johns Hopkins University. But along the way, psychiatrists stopped requiring that patients experience such an episode to warrant a bipolar diagnosis.

"Mania is a relatively rare event in the life course of somebody with clearly established bipolar disorder," he said. What if a patient will, at some point, have a manic episode but hasn't yet? Rather than keep an eye on such patients, doctors might instead diagnose them with bipolar disorder based on other symptoms—ones that aren't unique to bipolar.

The bipolar spectrum became a big bucket for cases of emotional dysregulation that did not neatly fit any other category. Under some definitions , the bipolar spectrum has been stretched further to gobble up entire other conditions, like substance use disorder and bulimia. In 2003 one researcher claimed that 25 percent of the population might fall on the bipolar spectrum. And for any kind of bipolar-ish condition, drugs are the primary intention.

Some clinicians found the "spectrum" idea a useful way to talk about all mood disorders that also included highs, mixed with periods of calm. But others saw it as a drift toward a quick, easy, and bendable label that rendered diagnosis meaningless.

As the concept stretched, and as the range of patients considered suitable for a bipolar diagnosis expanded, more and more people got one, according to research that tried to track rates of psychiatric disorder diagnoses. One study , from 2020, used surveys from ambulance visits. The frequency of calls about people with bipolar doubled from 1997 to 2016. Another used data from hospital psychiatric units. An adult was 45 percent more likely to leave one with a bipolar diagnosis in 2010 than in 1996. For adolescents (ages 14 to 18), the increase was 123 percent. For children (ages 5 to 13), the uptick was even steeper: 326 percent.

American psychiatry's perception of the frequency of bipolar disorder has not extended to similar regions. U.S. estimates of its bipolar population, at around 3 percent, are higher than those of Australia, where the estimate is around 2.1 percent, and Europe, where it's 1.7 percent.

Doyen, the New Orleans social worker, said he first noticed slapdash bipolar labeling when he volunteered at the city's St. Thomas House of Hospitality, a temporary shelter.

"I kept meeting all of these people that had either experienced homelessness or were in danger of experiencing homelessness and had all these various severe needs," he said. "I saw a lot of them had bipolar diagnoses."

Mental illness does increase the odds someone will end up homeless. But it didn't seem as if severe bipolar was pushing his clients into the streets. Few had experienced manic episodes, few were in treatment for bipolar, and, said Doyen, "they didn't necessarily identify with being bipolar."

Doyen found that most had been diagnosed during a crisis situation that put them—briefly—in front of a doctor. He reasons that a bipolar label might have been "the easiest application" to get them released with a diagnosis and therefore eligible for Supplemental Security Income.

"What I do know is that a lot of the diagnoses are wrong," he said.

In the 2000s, as this sea change was underway, Mark Zimmerman was the director of outpatient psychiatry at Rhode Island Hospital, in Providence. When he saw patients who had been diagnosed with bipolar, he looked at their medical histories for examinations from the diagnosing clinician describing episodic highs and lows. They often weren't there. "We couldn't find evidence of why they were diagnosed with bipolar," he said.

Zimmerman is a stickler for by-the-books diagnostic techniques. As a resident , he said, he took longer than his colleagues with initial interviews with patients, and in my talk with him, he rarely deviated from precise, clinical language.

It was during that time that Zimmerman, who was also affiliated with Brown University, set up the landmark 2008 Journal of Clinical Psychiatry study . He and a team interviewed 700 psychiatric patients, 145 of whom said they had been diagnosed with bipolar disorder. But when tested using the lengthy DSM questionnaire, only 43.4 percent met the standard for it. No other study has ever tried to systemically determine the rate of bipolar misdiagnosis.

The results were convincing to Zimmerman, though: bipolar is frequently misdiagnosed. He thinks a few factors were—and continue to be—at play. Clinicians don't put enough time into the diagnosis. As awareness of bipolar grew, patients self-diagnosed, leading clinicians to agree.

And there's Big Pharma. A litany of mood stabilizers, antidepressants, and antipsychotics are prescribed for bipolar disorder, usually rotated around until a regimen fits well enough. Not coincidentally, Zimmerman said, pharmaceutical companies have impressed on prescribers the idea that bipolar is underdiagnosed.

More than that, consider the adage that a man with a hammer sees every problem as a nail. Clinicians whose main tool is the prescription pad—like psychiatrists or nurse practitioners—are prone "to make a diagnosis where you can prescribe a pill," said Zimmerman. "If you're practicing mental health treatment from a psychopharmacologic perspective, under the FDA, there's no pill for borderline personality disorder."

For some conditions mistaken for bipolar, psychiatric drugs are not the go-to. People on the autism spectrum make highly individualized changes to their lives to function at work and in social settings. The first line of treatment for borderline personality disorder is dialectical behavioral therapy, a talk therapy centered on examining and countering negative emotions.

There is particular risk that signs of borderline personality disorder will be lost in the rush toward a bipolar diagnosis.

Like bipolar, borderline can involve seemingly sudden bursts of extreme behavior, but there is one key difference: Relationships are the trigger. People with borderline personality disorder have a pattern of intense, unstable relationships, often stemming from a fear of abandonment. Interpersonal friction can cause an emotional whirlwind of fear, anger, and depression. With an estimated prevalence of 1.5 percent of the population , borderline personality disorder is not rare.

Marie-Paule de Valdivia, a Connecticut-based licensed clinical social worker who specializes in borderline personality disorder, explains the difference between that disorder and bipolar like this: Imagine the patient alone on an island. "If they have bipolar, they still have hypomanic episodes, manic episodes, depressive episodes," she said. "If they have borderline, if they're alone on a deserted island, the borderline symptoms disappear.

In group seminars, de Valdivia asks participants to raise their hands if they have been diagnosed as bipolar. "Day in, day out, two-thirds of the room raised them," she said. It is possible to be diagnosed with both—the best estimates are that 20 percent of people with borderline are also bipolar, a portion far less than what de Valdivia sees among her patients.

In a follow-up study to his 2008 look at misdiagnosis, Zimmerman and his collaborators looked for conditions that were masked by possible bipolar misdiagnoses. Patients with a bipolar diagnosis that didn't stand up to scrutiny were five times as likely as patients never dubbed bipolar to be rediagnosed with borderline personality disorder. That's more than any other condition.

Lynette Nelson, a former casino blackjack manager in Minnesota, said that in her early 20s she was misdiagnosed with bipolar disorder, a label she "went with" for nine years.

"I just figured, Well, this doctor knows what they're talking about; I'm bipolar," she said, "and I guess it makes sense, because I had been struggling with my mental health since I was about 15, and I had been on all sorts of different medications and nothing really worked."

Nelson, now 40, admitted she "was very non-med-compliant, or therapy-compliant," back then. She didn't stick with that doctor's regimen of medication and group therapy. After an intense experience with postpartum depression, she left her job at the casino and was placed on total disability. She saw a nurse practitioner who doubted the bipolar diagnosis for a simple reason: Nelson had never had a manic episode. Instead, the NP gave her a borderline personality diagnosis.

After that, Nelson began dialectical behavioral therapy and credits it with a turnaround. "My close relationships, those have been repaired," she said. "I have learned that it's OK to have emotions and feelings and everyone has them." She works on not exploding from feelings.

Ola, too, found that her new diagnosis helped her turn things around. After unburdening herself from the bipolar diagnosis she had received as a child, she got off psych meds. "I was able to start understanding some of the emotional struggles I have and start understanding myself and accepting myself," she said. She has since earned an associate degree in science and is working toward a bachelor's.

She was also diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder, which she thinks was overlooked when her body pains were categorized as a psychosomatic outgrowth of bipolar.

You can see the appeal in a bipolar diagnosis, however counterproductive. For patients, it's easier to accept that something is wrong with their mood than with their personality, said Goes, from Johns Hopkins. Clinicians "will go towards the less stigmatizing diagnosis, which is bipolar disorder," he explained.

When a diagnosis becomes troublesome or confusing, the American Psychiatric Association has a remedy: revise its entry in the DSM. In 2022 the committee in charge of the DSM restored the diagnosis of unspecified mood disorder for conditions that don't fully meet the standards of depression or bipolar.

Goes hopes that the next wholesale revision will offer some clarity about "gray areas" where bipolar symptoms overlap with those of other conditions. "I don't think that's a panacea," he said. "I don't think most clinicians follow the DSM very carefully. That may never have been the intention of DSM. It's a prototype to help provide clinical guidance, but it definitely helps you with the gray [areas], and more emphasis on the gray will be helpful."

Of all the conditions that a sloppy bipolar diagnosis might conceal, the most concerning are social, according to Doyen, whose experience inspired an in the Columbia Social Work Review.

"Perhaps the most insidious result of inflating BD diagnoses, and the one which may be of most concern to social workers, is the masking of oppressive social conditions," he writes. Poverty, crime, and racial discrimination are correlated with the emotionally disruptive symptoms that may get explained away with a convenient bipolar diagnosis. But, like almost all mental disorders, bipolar is partially attributable to inborn factors , like genetics and chemical imbalances.

"As a result," Doyen writes, "there are serious concerns that the rise in BD diagnoses, with their biological underpinnings, is concealing increasing social and environmental distress among marginalized Americans."

He told me: "My well-meaning colleagues may have accidentally stigmatized their clients or disguised their actual problems or contributed to the broader medicalization for this need for resources by applying diagnoses.

"It's a long way of saying: I don't think we have a good systematic sense of where these diagnoses are coming from."

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