About Us: Lived Experience as Lived Expertise

February 15, 2019
Photo courtesy of the National Council for Behavioral Health
News Type:  Director's Corner
Author:  Adam D. Swanson, MPP, SPRC Senior Prevention Specialist, Education Development Center

Lived experience” is an important term in the suicide prevention community. People who have experienced a suicide attempt, suicidal thoughts, or a suicide loss can bring critical insights about prevention. That is why the National Strategy for Suicide Prevention and SPRC’s Effective Suicide Prevention Model emphasize the importance of involving individuals with lived experience in all aspects of our collective prevention efforts. Understanding how a person became suicidal and what their experience was like during and after a crisis, and adapting our systems to respond to those vulnerabilities, is key to preventing suicide deaths. To that end, I propose that we increase our efforts to incorporate lived experience in our work by considering it even more holistically.

How can we think more broadly about lived experience and the different ways it can inform our prevention efforts? We must start by asking ourselves how our past informs the actions we take today. Whether you are a primary care doctor, a college counselor, a teacher, or a concerned friend—chances are you’ve personally engaged with the topic of suicide at some point in your life. In that sense, you carry lived experience, too. Identifying and incorporating diverse types of lived experience also requires listening with compassionate intention and questioning our assumptions. Stories of lived experience can provide key knowledge and insights that are critical to effective prevention—knowledge and insights we may not even know are missing.

Here’s an example. One evening a couple of years ago, after attending a National Suicide Prevention Lifeline Consumer Survivor Committee meeting, I worked a volunteer shift at a local women’s homelessness and addiction recovery center. After preparing dinner for 20 people, I was invited to join the group, and sat with my plate next to a woman I’ll call Melissa. Melissa was friendly and close to my age, and shared bits about herself and her recovery story. We got to chatting about our favorite operas and her new job, and then she asked the inevitable “what kind of work do you do” question.

I told her that I work for the Suicide Prevention Resource Center, and mentioned that I’d just come from a meeting of the National Suicide Prevention Lifeline. Once the word “Lifeline” left my mouth, Melissa said, “I used to have dark thoughts, and I always knew about the number, but I never called—it never felt safe. I didn’t know what would happen if I called for that kind of help. I was too scared and sad.” Her words rang in my head. I shared more information about the Lifeline with Melissa, about its trained counselors, confidentiality, and 24/7 availability. It felt good to answer questions about a resource she didn’t immediately need—too often, these types of conversations only occur during or after a crisis.

Melissa is a lived experience expert and her story immediately prompted system-improvement questions for me. What public advertising about crisis supports could have reached Melissa, but perhaps didn’t? What types of messaging or messengers could help her feel safe enough to call in the future? These questions are similar to those elicited by continuous quality improvement processes in health care systems. Fortunately, I can still engage in a dialogue with Melissa about these questions today, and her answers can help inform changes to ensure people who need help, receive it.

That is just one example of an opportunity to incorporate lived experience into our prevention work. When we consider the perspectives of those with lived experience—those who are different from us—we can change practices in ways that are simple yet revolutionary. People with lived experience bring a perspective that schools can’t teach. And these stories have the power to inform what works and reveal necessary improvements, which are critical to developing and implementing a comprehensive approach to suicide prevention. Without hearing stories of survival and loss, we can’t know what we’re missing. Public health practitioners build more effective prevention initiatives when we make adequate space to incorporate lived experience narratives into public service systems. And it’s not only attempt survivors who should be engaged in these discussions—family members and caregivers also have critical insights, as do disproportionately affected populations like American Indians and Alaska Natives and LGBTQ people.

Ultimately, lived experience is about recognizing the expertise each of us brings to the table. The old saying “nothing about us without us” still rings true today—people who have been affected by suicide know firsthand what can help address it. Let’s consider the incredible value of the lived experiences we each bring to our daily lives and work to ensure that the voices of those who have lived through crises are given a priority seat at the prevention table.

If you or someone you know is in suicidal crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255) or visit the Lifeline website.

Populations:  Racial and Ethnic Groups, American Indians and Alaska Natives, Lesbian, Gay, Bisexual and/or Transgender People, Attempt Survivors and Other People with Lived Experience, Survivors of Suicide Loss
Settings:  American Indian/Alaska Native Settings, Health Care, Behavioral Health Care, Communities, Family Members and Caregivers
Planning and Implementing:  Cultural Competence, Communications and Outreach, Safe/Effective Messaging
Strategies:  Increase Help-Seeking, Effective Care/Treatment, Health Systems Change