Let’s talk about it

Editor’s note: This article discusses suicide and may be distressing for some readers. If help is needed, the U.S. national suicide and crisis lifeline is available by calling or texting 988 or by chatting at 988lifeline.org. To protect the privacy of the families featured in the article, real names of those who died by suicide were not used.

The coldness hanging in the air is what Leanne Williams remembers most about that morning nearly a decade ago. She was walking through the doorway of her seventh-floor San Francisco condo when an abnormal chill immediately assaulted her senses. Something was very wrong. 

Williams’ worst possible suspicions were confirmed moments later. Her partner, Jack, had taken his life at age 49 after a decades-long battle with depression. For many months afterward, that singular detail — the raw, frigid coldness — haunted Williams every time she stepped outside into the swirling bay breezes.

 “It’s strange how those visceral things stick with you and reemerge,” said Williams, PhD, the Vincent V.C. Woo Professor of psychiatry and behavioral sciences. “I walked around in shock for a long while after that — the feeling that stuck with me was the coldness of that room.”

 Eventually the numbness gave way to other roadblocks that emerge when a serious mental health condition turns lethal. How do you adjust to such a tectonic change in your daily life? How do you open the door to talk to others about this situation, both personally and professionally? How do you tell your story in a way that doesn’t make it feel about you — but instead conveys that if this can happen to someone like you, it can happen to anyone?

“It took me a long time to figure out what to say and how to say it,” Williams said.

There is a common denominator that prevents people like Jack, a physician, from getting the kind of help that might have saved his life and that prevented Williams — one of the world’s foremost researchers of treatment for depression — from incorporating her personal story into her professional narrative for five years.

“More and more, we’re starting to realize the importance of making our stories part of the bigger story.”

Leanne Williams, PhD, the Vincent V.C. Woo Professor of psychiatry and behavioral sciences

“Even in medicine, stigma is very much a real thing,” Williams said.

Yet, the more Williams shares the personal nature of her mission — to her colleagues at Stanford Medicine, to the wider world of neuropsychiatric science at the dozens of conferences where she speaks annually — the more she believes the openness and truthfulness of storytelling will change how people perceive maladies of the brain. Perhaps it can help diminish the murky mythology of mental health stigma.

The term stigma originated in ancient Greece. It refers to symbols burned into the skin of enslaved people that branded them as criminals or traitors to be shunned. Then in 1963, sociologist Erving Goffman, PhD, imbued it with its modern meaning: any negative attitude, prejudice or false belief associated with specific traits, circumstances or signs of illness.

It’s estimated that half the American population will face a mental health condition at some point in their lifetimes, and studies have shown that stigma and discrimination can sometimes be worse than the mental health condition.

According to a 2022 Lancet commission on ending stigma and discrimination in mental health, half of people with treatable psychiatric conditions don’t seek treatment. And those people die 10 to 20 years sooner from preventable physical diseases than those in the general population.

A 2021 study by researchers at Penn State and Indiana University published in JAMA Network Open attempted to ascertain whether stigma had improved in recent decades. It found that there had been “a decrease in the stigma regarding depression” but that more generally “prejudice and discrimination attached to mental illness has been persistent, interfering with help-seeking, recovery, treatment resources, workforce development and societal productivity in individuals with mental illness.”

People conducting research in the world of medicine will tell you it also has a serious effect on where funding dollars end up. That’s why they are motivated to change the stigmatized narrative around brain science. Major scientific advancements have followed funding in physical conditions such as cancer and heart disease.

Stigma represents a tangled web of multi-directional unkind judgments — to oneself or from others — and it’s typically rooted in a lack of understanding that often is caused by the condition’s complex nature and the fragmented language used to explain it.

That lack of clear answers about the pathophysiology of psychiatric diseases leads to the stigmatization of mental health disorders. There can also be subconscious stigma that a person places on themself while enduring a crisis or tragedy. There’s also the larger stamp of stigma imposed by a society struggling to understand — without assigning blame — the complexities of neuropsychiatric disorders.

“People forget that cancer and heart disease weren’t always talked about openly either. I had an uncle who died young from cancer that no one wanted to mention,” Williams said, adding that his Hodgkin lymphoma would’ve been easily treatable today. “It took a lot of stories being told for people to better understand, for that stigma to be broken.”

It’s estimated that half the American population will face a mental health condition at some point in their lifetimes, and studies have shown that stigma and discrimination can sometimes be worse than the mental health condition.

But the brain’s connection to behavior gives it a tougher road to hoe — and stigma assigning blame to cognitive dysfunction runs deep: in families; in institutions like school, church and the workplace; in Hollywood scripts; and in media reporting.

Even in the elite halls of medicine — where novel approaches to mental health interventions are bustling — stigma remains a surprisingly formidable barrier.

“Many people get into psychiatry and neuroscience because they have a personal connection to brain disorders — they’ve felt it, it’s touched them,” said Williams, a leader of the movement to leverage discoveries in neuroscience to tailor treatments for psychiatric conditions. “Yet you don’t hear those stories very often.”

That’s why she continues to grow more comfortable telling her own. She also supports many others who approach her with heartfelt expressions of thanks, share versions of their personal narrative and ask for tips on how to start sharing their experiences more broadly.

“More and more,” she said, “we’re starting to realize the importance of making our stories part of the bigger story.”

Jack was an emergency room doctor and supervisor at a Bay Area hospital who had quietly suffered from depression for years. Despite Williams’ constant pleas, he refused to seek treatment out of fear that any paper trail involving a mental health condition could jeopardize his career as a physician.

“The guilt that I felt was overwhelming,” Williams said. “You just wonder how you couldn’t have known that it had gotten to that point.”

Jack exhibited signs of a specific high-functioning form of depression that Williams has since identified as the cognitive biotype. It is one of seven specific classifications of depression and anxiety that Williams has classified as the baseline forms — each requiring different treatment game plans. That classification system is the basis of her specialty known as precision mental health.

Because he wasn’t willing to be prescribed antidepressants, the longtime first-line approach to depression, Williams recommended to Jack that he try one of the newer forms of treatment that could be done in a clinical trial setting — and might leave less of a medical paper trail. But even that seemed riskier to him than doing nothing. In the end, she believes, he was a victim of self-stigma as much as a victim of depression.

“Rationally, he knew his depression was nothing to be ashamed of,” she said. “But there was also a part of him that believed he should be able to cope.”

Rather than take time off from work to process her loss after he died, Williams threw herself headlong into the war on depression that had suddenly grown more personal. She sought counsel from a few close friends and colleagues who helped her process the guilt. They assured her she had done everything she could to help Jack, who never shared any thoughts of self-harm with her.

“Here I was, standing before audiences of my peers at conferences, starting off presentations with the global numbers on suicide … and saying nothing of its personal effects on me.”

Williams

Williams decided to pull light from the darkness in symbolic ways. She put together a small memorial for Jack held on a bright, sunny day “out in nature, amidst the flowers.” She dyed her blond hair bright white.

“I wanted to crystallize the focus on light,” she said. “It was important for me to focus on the celebration of life and to channel all that energy into positive change.”

At first, she felt uncomfortable talking about her situation openly. She was afraid talking about it would be perceived as self-indulgent: more about her own grief than the loss of her loved one. But, as she spoke publicly about her work and the need to find fast implementations for precision mental health interventions, she began feeling a different pang of internal distress.

“I felt like such a hypocrite,” she said. “Here I was, standing before audiences of my peers at conferences, starting off presentations with the global numbers on suicide … and saying nothing of its personal effects on me.”

Williams picks the versions of her story she shares at conferences, and level of detail she provides, based on the audience. When she’s giving a science-heavy talk, which is often the case, she usually outlines only the basics of her experience as a precursor to her latest research.

She said it’s typically afterward that attendees who have their own story track her down and offer their gratitude. Yvette Sheline, MD, a friend and colleague of Williams’, took notice of her growing voice in recent years and is drawing inspiration from her courage.

In the mid-’80s, Sheline was the director of inpatient psychiatry at Santa Clara Valley Medical Center, while also on faculty at Stanford Medicine. Now she is a professor of psychiatry, radiology and neurology and director of the Center for Neuromodulation in Depression and Stress at the University of Pennsylvania.

Like Williams, for all the experience she has in mental health research, she couldn’t escape the consequences of mental illness. In 2021, Sheline lost her 40-year-old son, Bill, to suicide.

“I’ve had a number of people who have known about my story and then have referred friends to me. When you’re struggling, it really helps to talk to someone who knows what the struggle is like.”

Yvette Sheline, MD, director of the Center for Neuromodulation in Depression and Stress at the University of Pennsylvania

He had struggled to tame the manic highs of his bipolar disorder for two decades. After his death, Sheline retrieved his journal writings, which described in vivid detail what it’s like to yo-yo between the manic-depressive swings of a serious mood disorder. She is piecing the journals together as a book in hopes of bringing greater understanding to serious mental health struggles.

“People have these tragedies happen in their families, and I think it’s important that they can talk about it,” Sheline said. “I’ve had a number of people who have known about my story and then have referred friends to me. When you’re struggling, it really helps to talk to someone who knows what the struggle is like.”

This is particularly true, she said, when people learn that a career psychiatrist who is studying the neuroscience behind serious disorders has faced the same systematic struggles they have in getting help for themselves or a loved one.

Like Williams, Sheline has thrown herself deeper into the hard work of developing treatments for neuropsychiatric disorders that bring relief more effectively and quickly. And she is embracing the strength of openness, of weaving her personal story into her professional narrative. She, too, feels like speaking out is an increasingly important part of her job description.

“How would you know about things like these unless you were exposed to them?” she said. “I think it’s important to shine a light on them for others.”

Williams not only agrees, she also sees signs of light all around.

She has seen it in the way people tend to discuss depression and anxiety more openly since those conditions became more universally understood and talked about during the COVID-19 lockdown.

She sees it in the growing support for precision mental health practices such as brain imaging, electroencephalogram (EEG) testing, depression phenotyping, magnetic brain stimulation and psychedelics — first-line therapies that transcend the pharmacological guessing game.

She sees it in her inbox when another scientist — or anyone — who has lost a loved one to suicide reaches out. She feels it in the level of trust shared by colleagues at the Stanford Center for Precision Mental Health and Wellness where, as director, she is cultivating a culture of openness around mental health that mirrors openness about physical health.

Within those small stories, Williams also sees a bigger one emerging.

“It’s early days for this level of openness about mental health, but we will get there,” she said. “We have to.”