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Why does it take so long to diagnose bipolar disorder?

Stigma surrounding bipolar diagnosis may delay getting help

by Linda Carroll and Shamard Charles, MD /  / Updated 
“I was so terrified of losing everything. I convinced myself the only way to deal with this was to not deal with this," Mariah Carey told People magazine about why she hid her bipolar diagnosis.Nicholas Hunt / Getty Images for dick clark productions file

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Mariah Carey’s revelation of bipolar disorder — a condition that was first diagnosed in 2001 — may help others with the condition to share their experience as well, experts say.

Many patients keep their diagnosis a secret, fearing personal and career fallout because of the stigma attached to mental illness. That was certainly true of Carey who says she had been struggling in silence for over a decade.

"Until recently I lived in denial and isolation and in constant fear someone would expose me,” she told People Magazine. “I was so terrified of losing everything. I convinced myself the only way to deal with this was to not deal with this.”

Carey was diagnosed with bipolar II, a less severe of the disorder which is characterized by dramatic mood swings from highs — called hypomania — to lows, or depression.

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It’s estimated that 4.4 percent of adults in America will experience bipolar disorder, formerly known as manic depression, at some point in their lives, according to the National Institute of Mental Health.

Bipolar disorder can be an elusive disorder for doctors to identify because the symptoms can vary widely and is often masked or exacerbated by other factors such as concurrent drug use or remission of symptoms.

Stigma makes it even more difficult for people to get help.

“The average length of time between a person’s first episode and getting the correct diagnosis is eight years,” said Kay Redfield Jamison, a professor of psychiatry at the Johns Hopkins School of Medicine and author of “Touched with Fire: Manic-Depressive Illness and the Artistic Temperament.”

“That’s a very large chunk of life given that bipolar disorder most often hits in late adolescence or in the early 20s,” Jamison said.

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While depression is recognizable to many, mania may be not be as familiar. Oftentimes bipolar disorder can wreak havoc with an individual's life, but it may not be obvious to others that something is wrong.

“It’s a great misconception that you are a basket case if you have bipolar disorder,” Jamison said who has been public about her struggle with bipolar disorder. “I am someone who has specialized in this all my professional life and I’ve been around specialists who treat mood disorders. When I went public, most of my colleagues were shocked. It can be deceptive in that respect.”

“It’s a great misconception that you are a basket case if you have bipolar disorder. When I went public, most of my colleagues were shocked. It can be deceptive in that respect.”

“It’s a great misconception that you are a basket case if you have bipolar disorder. When I went public, most of my colleagues were shocked. It can be deceptive in that respect.”

The condition does have some clear symptoms, said Dr. Andrew Nierenberg, a professor of psychiatry at Harvard Medical School and director of the Dauten Family Center for Bipolar Treatment Innovation at Massachusetts General Hospital.

A manic episode must include at least three of the following symptoms for more than 1 week:

  • increased talkativeness
  • increased self-esteem or grandiosity
  • decreased need for sleep
  • increased energy level or irritability
  • racing thoughts
  • poor attention, and
  • increased risk-taking behavior

Mania is much more extreme than a sudden burst in energy or motivation or a happy mood. "They're not only talking fast, but other people can't get a word in edgewise," said Nierenberg. Someone with bipolar "might be walking by a Tesla in the mall and decide to buy even if you don't have the money."

It often results in problems in work, school, and relationships, and in some cases it may require hospitalization.

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Sometimes the symptoms of bipolar disorder may contribute to the length of time it takes to get diagnosed. When depressed, people may not have the energy or will to seek treatment.

“When you’re depressed, a cardinal sign is hopelessness,” Jamison said. “When people start to get manic they very often feel better than they ever have in their lives. So they don’t feel that anything is wrong.”

Still, Jamison said, when bipolar disorder is untreated, “there’s tremendous disability and pain and suffering.”

Carey may be an example of an association Jamison pointed out years ago: the strong prevalence of bipolar disorder among creative folk, such as writers, painters and composers. Actress Carrie Fisher was praised for her candidness about her struggles with bipolar before her death in 2016.

While some patients may worry that treating the disorder might crimp their creativity, “most people, in the few studies that have been done, are as productive if not more productive once they’ve gotten treatment,” Jamison said.

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