Thriving on the Bipolar Spectrum: Changing the Narrative with Stories of Lived Experience

MAR. 30, 2023

By Sara Schley and and Devika Bhushan, M.D.

Butterfly flying in a sunny and stormy sky
When you hear the word “bipolar,” what images come to mind? Maybe someone who is untrustworthy, violent, highly emotional or unpredictable.

We all likely know someone with bipolar disorder — maybe intimately. But thanks to the stigma surrounding mental illness, we may not know that they have a mental health condition. Though estimates vary, about 1 in 38 people will be diagnosed with either bipolar I or II in their lifetimes — and maybe even as many as 1 in 22 people

Yet, despite the high prevalence, negative stereotypes about bipolar disorder are as common in our society as they are untrue — and revealing a bipolar disorder diagnosis can lead to very real discrimination; in the workplace, in opportunities, in civic/social participation and in health care. In fact, 4 out of 5 people find the experiences of stigma and discrimination related to mental illness to be more painful than mental illness itself. In part because of stigma, more than half of American adults with mental illness are not in treatment.

The stereotypes people hold about bipolar disorder evoke extreme images of folks at their most unwell (or worse than that) — but do not describe people with well-treated bipolar disorder. People with well-managed bipolar disorder are able to be our most thoughtful, curious, creative and loving selves.

Both of us, the authors of this blog, are living proof. We both have well-managed bipolar disorder. We identify as successful professionals; Sara is an entrepreneur and author, and Devika is a pediatrician and public health leader. We each have deep community bonds, including decades-long partnerships with our husbands, as well as loving relationships with our children, family members, friends and colleagues.

A More Complex Picture

While many people understand bipolar disorder to encompass wild highs — with delusions, visions and spending sprees — this actually only describes mania, which is part of bipolar I disorder, at one extreme end of what we now call the “bipolar spectrum.”

People whose brains fall elsewhere on the bipolar spectrum — bipolar II and others — experience severe, life-threatening depression, but do not exhibit classic mania. Instead, we experience a milder elevated state called hypomania, with symptoms like anxiety, irritability, talking/thinking faster and an inflated sense of self, in addition to depression. 

So bipolar disorder can exist without mania — and more often does. In fact, bipolar II is actually about 1.5 times more prevalent than bipolar I. Depression commonly afflicts people with bipolar II disorder and can be the first kind of bipolar mood episode that presents to a doctor. And since it looks similar to classic depression (major depressive disorder), misdiagnosis is rampant. Up to one of three people who are initially diagnosed with classic depression may actually be on the bipolar spectrum, with key clues like family history or personal history of mania or hypomania that are often missed.

This is critical to discern because the antidepressants usually prescribed for classic depression can lead to hypomania, mania, mixed symptoms or a worsening course for those with bipolar disorder — with dangerous, even lethal consequences — whereas mood stabilizers (in combination with behavioral treatments) can help lift the depression.

The Impact of Stigma and Misinformation

On average, it takes over 11 years for people with bipolar II to get the correct diagnosis and treatments.

In the meantime, we suffer great pain, including addiction, incarceration, homelessness, suicidality and death from other causes. Due to longer periods of time spent unwell, people with bipolar disorder are twice as likely to attempt suicide as those with major depression. And we're at increased risk for dying 10 to 20 years earlier than the general population, including by suicide or from chronic conditions like heart disease.

In Sara’s case, it took 25 years to get the right diagnosis. For Devika, it was close to three years. These years were the hardest we and our loved ones have known — and we were each close to death at points.

We don’t want this to be the case for anyone else. We know how to diagnose and treat bipolar disorder effectively. We want everyone to be able to access the right treatments and tools to heal and thrive as quickly as possible. 

Changing the Narrative with Film

We’re now on a shared mission to end the stigma, maximize healing and save lives by spreading education and inspiration.

Sara wrote a memoir to this end. Devika shared her story publicly while serving as California’s Acting Surgeon General, which led her to meet Sara and build a well-being community to destigmatize mental illness and spread tools for healing and resilience. 

In this shared mission, we are making a film that will reach and help change the reality for millions of people suffering from bipolar spectrum disorders. Named after Sara’s memoir, we hope that “BrainStorm the Film,” expected in 2025, will help transform the conversation and realities around living on the bipolar spectrum. 

This upcoming film combines stories of people living and thriving with bipolar disorder; cutting-edge science; and breakthrough treatments into one coherent narrative to convey hope and resilience. Please join us on this journey as we realize our mission — a world in which people living with bipolar disorder can unlock their fullest potential and thrive.

 

Sara Schley, co-producer, co-writer of “BrainStorm the Film,” is a business consultant, social change entrepreneur, speaker and author. She is a mother, grandmother, community leader and wife of 26. In her memoir, “BrainStorm: From Broken to Blessed on the Bipolar Spectrum,” the inspiration for Brainstorm the Film, she tells her riveting story.

Dr. Devika Bhushan is a pediatrician and public health leader focused on enhancing resilience and equity. She served as California’s Acting Surgeon General in 2022. Since sharing her own story with bipolar disorder publicly, Dr. Bhushan has built a well-being community to destigmatize mental illness and spread tools for healing and resilience. 

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