September 7, 2017

Sharing His Story to Help Others

People with lived experience “have a perspective medical schools can’t teach,” says EDC's Adam Swanson.

EDC's Adam Swanson speaks about lived experience and suicide prevention. Photo courtesy of The National Council

When Adam Swanson offers glimpses into his own life story, people listen.

A suicide attempt survivor, Swanson talks about how health systems that were intended to help him often left him feeling immensely isolated and powerless. He describes the emotional toll of nearly two decades spent struggling to access effective systems of care. But more often than not, he focuses on the power of human connection and shares how the care demonstrated by a single clinician was critical in helping him regain control of his life.

After Swanson is done speaking, members of the audience inevitably seek him out. They have thought about suicide, too, or they have a friend who has experienced mental health crises and struggled to find compassionate care.

When they finish, Swanson asks whether they have shared their stories with others. Most have not. But Swanson believes they should, and he tells them so.

“People find comfort in recognizing that someone is saying something they relate to,” he says. “That’s why I speak up. I don’t hear a lot of people talking about their own experiences with violence, trauma, and mental health, even though I know they have something to say.”

Today, Swanson is a suicide prevention specialist with EDC’s Suicide Prevention Resource Center, where he works to improve prevention programming in 10 states and on several university campuses. And he draws upon his own experiences as a survivor to help states develop systems of care that support more people, more effectively.

Personal experiences with trauma, pain, and disease—otherwise known as lived experience—are increasingly used to inform the design of mental health and injury prevention programs. These experiences provide unique insights into which interventions work—and which ones do not. When integrated into a large-scale suicide prevention program, lived experience can save lives.

“It’s important for us to embed folks with lived experience in all levels of organizations. They have a perspective medical schools can’t teach,” says Swanson.

Millions of Americans will experience suicidal ideation this year, and one in four will have a diagnosable mental health condition in their lifetime. Swanson says hospitals, mental health clinics, and first responders typically have policies on how to help someone in crisis, but those policies are sometimes written with an eye towards getting people through a system. They do not always consider the complex and personal needs of the patient.

Swanson experienced this loss of control over his own health care as a graduate student, when a severe panic attack led to a brief hospital stay.

“I remember sitting in a room alone, while next door, my doctor, the police, and a counselor from my school were all talking about treatment next steps for me,” he recalls. “And I thought, ‘How are you having a conversation about my health without me?’ We’d never let an oncologist decide on cancer treatment options without consulting the patient.”

Today, Swanson uses his experience to improve care for others. He recently reviewed a “caring contact” letter—a letter hospital systems often send out to people who have been discharged following a suicide attempt. The letter offered a list of services provided by the health system and encouraged discharged patients to use them if they needed support.

As Swanson read the letter, he thought about his own negative experiences trying to navigate health systems. Knowing that the letter had the potential to save lives, he recommended it also include information about the National Suicide Prevention Lifeline, so that people who did not want to interact with the health system itself could still learn how to access support.

“This is why lived experience is critical,” he says. “If even one person ends up calling the Lifeline after receiving that letter, then that’s a job well done.”